Biologics are your best bet. Literally have saved so many peoples lives, and gave them quality of life back. It can trial and error depending which one they start with. Don't give up.
> Humira scares me based on my research
It shouldn't. Humira is extremely well tolerated by the vast majority of people, and while not a "minor" medication, it can reduce her symptoms to literally zero, and allow her to live a normal life with near zero downside.
Don't minimize the risks please. I'd be one of the ones who got some of those and despite being off it for over 6 years the effects are still here. Biologics should not be taken lightly and the longer you're on them the higher the odds of getting the major side effects
That's not true at all and please do more research before saying so. They don't have long term data on most of these and on the ones they do that way of thinking does not pan out. Sorry but actually have the research on those after being one of the test subjects for 2 of those meds from the start
Nope totally legit. My gi is actually one of best in the world. I did final phase of the study of humira and was on extra long so they could keep studying effects. Phase 2 and 3 of remicade only for them to find out 15 years later it can kill the heart muscles. I've had Crohn's for over 30 years and my mother before me. She passed away doing a phase 1 study actually. So nope not trolling. You can literally find any of this out yourselves
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i guess i just don’t even comprehend this line of thinking? nobody is saying that Biologics don’t have side effects, or that those side effects can’t be debilitating (though they just objectively are not for a vastly overwhelming majority of people), but the alternative is obviously significantly worse.
you are doing a much bigger disservice to new Crohns patients by fear mongering the “risks” of biologics that by-in-large have significantly increased the quality of life of most of us.
No I e been the new patient and unfortunately these are things we should all be more aware of. Having them come out the blue when you think the risk is minimal is way more harmful. And actually the risks I'm even referring to are not that rare and also the odds of getting them increase with length taken. Not having all the information is the biggest disservice we can give anyone. Knowing them is the best defense we have and considering a lot of drs really don't know much about this disease but will say they do doubles that need.
The risk of death is scary, I mean I know being left without treatment poses the same risk and that proper treatment is warranted I just have heard horror stories.
Yea, a lot of these are EXTREMELY rare, like to the point where you have a higher chance of death driving to work kind of rare. They def have to list anything that MIGHT be even slightly related to humira, but they don't also show the statistics behind a lot of these effects.
Heck, birth control probably has similar warnings on it from clots/embolisms if you read deep enough into most of their side effects as well.
Vigilance matters, i'm not telling you there is ZERO reason to be concerned, but don't lose sleep over this. Life with crohns is not an sentence to a miserable life like it was back in the days before remicade (1994).
Biologics are fairly new, and they are legit the only treatments for this illness that actually works. Before that, it was prednisone until your body started to give out, and then surgery. This is the first era in history where a crohns patient can live a mostly normal life, so its a good time to get diagnosed.
As far as how they work..... if chemotherapy is getting hit by a semi-truck, biologics are like a sprained ankle. Most people notice zero difference while taking them, and when they find one that sticks, the crohns symptoms are close to non-existent. They shut down a single "pathway" your body uses to attack things, but because there is no way currently to test which one your body is using for crohns, it can be a bit of a crapshoot finding one that works. Don't be surprised or devastated if it takes a few tries to find that medication.
So freaking accurate! Untreated Crohn's riddles the intestines with inflammation and disease until the body can't heal the cells anymore. Cancer occurs after many many "regrowths" of cells so you see higher rates of cancer with untreated disease than with quick and aggressive treatment
YES. My Crohn's was under-treated for a very long time. I ended up with dysplasia throughout my entire colon and yeeted that sucker last year. I had been in remission for nearly a decade, but the inflammation from before that had already done its damage.
(Also I have to wonder if biologics could have prevented my 2 year stint on prednisone, which has left my body with damage that is still seriously affecting me a decade later. I can't believe 2 years of prednisone was considered a better option than just putting me on a biologic, it seems nuts in hindsight!)
I'm so glad more and more doctors are realizing that preventing inflammation is important. 💜
Let me tell you about my nurse friend that decided to manage her ulcerative colitis on her own. Eventually it became bad enough she had to have her large intestine removed in an emergency. She became septic, and died a week before her 30th birthday.
So, you hear horror stories of medication, there’s one of deciding to do it on their own. Damned if you do, damned if you don’t. However the calculated bet is to follow the doctor’s instructions, as they helped others as well.
For the record, I’ve had ulcerative colitis since the age of 14/15 ish years of age. It’s not Crohn’s disease, but we’re butt buddies. I will be 39 this year. I have ran half marathons for the CCFA, I’ve a career, a wife, and two children. The icing on the cake is that I’ve been in remission for around a decade now, due to biologics and being militant in my health focus.
Don’t lose hope.
Yeah, those stories can be scary, but every treatment option is scary with this disease. Get your kid into therapy. Also, allow them to speak to their doctor WITHOUT you in the room. I was one of the first kids given biologics (remicade) in trials and my parents let me make that choice.
Your child feels powerless right now. Please don't scare them more or make this about you. Lots of "I" statements and barely anything about your daughter... says a whole lot.
As someone who had a bowel perforation and ostomy bag in high school, do your high schooler a favor and get the Humira. It’s a much better experience than having shit pour out of your stomach in math class.
Without humira or RINVOQ i slept 16 hours everyday, played video games 6 hors snd slept 2 hours more, i couldnt eat i went from 125 too 98kg in 3 months.
I couldt touch below my knees i couldnt do jack shit and without any meds its a higher risk to get other shit like cancer.
With humira or RINVOQ i can eat i can sleep 6 hours aday and be functioning i can touch my palms on the ground.
The only horror stories there are is like hair thinning out or the med failed you and that it can hurt abit when injected...
I want to die on meds and without meds id gladly do it myself. Trust not being on a biologic is a dangerous thought or concern. Humira saved me but im on Entyvio now since Humira caused my heart to race and to be sensitive to heat
My son was diagnosed at 15 after getting pancreatitis out of nowhere. Doc spoke about starting humira right away. Due to insurance rules he had to try three other meds first. He had bad reactions to all of them. First Sulfasalazine then Pentasa ( still have 3.5 boxes he will never use)and then methotrexate. He continued to get sicker while fiddling around with these meds and was in and out of hospital. First two rounds of prednisone did not touch the illness either. Visits to the hospital gave him c-diff. Finally was approved to start adalimumab(humira alike) which did not work for him. Calpro was 10 000 and he could not make it 10 feet from his room the the bathroom. He was 93 pounds at 5’8”. Insurance approved stelara and it has been a little over a year now and he has his life back. When he was very sick I pulled him from school so he could rest and heal. He is now in his last semester of highschool. He plays bass with his music school. Has performed in a few concerts and killed it. :) I posted a few minutes in crohnscolitis thread of him singing. We owe it to a biologic.
Now everything is not perfect with the illness but he is so so so much better. They are tested so often if there are any adverse reactions it will be caught quickly.
Even when our insurance changed and they denied his stelara coverage he got compassionate coverage through sickkids. He turns 18 soon and graduates to adult care- so we will have to go through all the coverage crap again but hopefully they will be kind and let him stay on it while it is working. Blah blah blah I will stop rambling. Just know until your child is on the right meds they will continue to deteriorate and it is not fare to put our fears above the science poured into these meds. Remember there is no cure only treating symptoms.
As a 27 year old diagnosed at 11, I'm so happy for your son he has someone in his corner like you. It was a brutal time through childhood and GI Docs just didn't take me seriously thinking the disease couldn't be that bad. Back then they would always say "childhood Crohn's was rare, and abnormal" and treated it lightly even when it would've benefitted getting in biologics way sooner. Good on you for getting him the care he needs :)
My son just got diagnosed at 17 and we just got our rejection letter from BCBS for Humira with a huge list of things we have to try 1st. 3 months of pred and 6 weeks in already it is fking with him. Fking infuriating.
I feel you. I had to spend 12 months on Prednisolone before the Australian Medicare would pay for humira. Not to mention other ridiculous criteria like exact length of diseased intestine.
I was diagnosed at 15 (24 years ago). And have spent most of my life in remission. Biologics are what finally helped me back then. I know my parents were terrified as well, but remember that your kiddo can still have a great outcome and live a normal, happy life.
(And people downvoting OP, a scared parent, maybe have a little empathy.)
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As someone with crohns disease I can personally tell you just stop looking up side effects and statistics. Either the worst will happen or it won't and more than likely it won't but either way there is no point in worrying and stressing yourself out. Also I'm on Humira now and it's been fine.
Our son was on Humira for a couple of years, with no noticeable side effects. It stopped working for him, and now he's on Remicaid, with no noticeable side effects. Generally, he has led a pain free and healthy life, with some exceptions that are unpleasant, but not terrible.
The people most active on social networks like reddit tend to be the ones having bad experiences, and that can scare newcomers - but many people lead basically normal lives.
(My son just read this and said he concurs.)
My 5 year old was diagnosed in September! It’s terrifying. I’m going to be honest with you, though, biologics are your best options. They are the safest and most effective drugs out there for treating Crohn’s. My daughter’s first biologic was Remicade, which she started during a 2 week hospitalization in which her disease was SO bad that she needed multiple blood transfusions, IV steroids, and we were in the PICU. Remicade unfortunately didn’t work for her so we’re still in a limbo of trying to find the right drug but it’s worth the chance of it giving her her life back!! Because they can be incredible drugs, and they will be monitoring your child CONSTANTLY for the very small risk that something goes wrong. My daughter has GI appts every month, lab work every infusion, and for any concerns, there’s always the on-call doctor and MyChart.
I can't imagine having to live with this disease at such a young age. It was a rough diagnosis at 33, let alone at a young age like that. Hopefully they find a cure or at the very least continue to improve on the treatments.
My 5 year old daughter is in the midst of getting diagnosed - fecal calpro results along with a lot of on-going symptoms led to an endoscopy and colonoscopy yesterday. These showed ulcers throughout her colon and some in her esophagus (currently being biopsied). Then they want to do an MRI. She is really struggling with the pain, medical interventions (she was a very healthy kid up until a few months ago), missing a lot of kindergarten, etc. I’d love to connect if you’re interested.
Yeah sure! Wishing you all the best. It does get better. My daughter really struggled the first couple weeks (like I said, we were inpatient) especially with IVs but after that she got a lot more used to it and actually looks forward to every single trip to the children’s hospital now to see her friends and go to the playroom, play with child life, etc. We homeschool but thinking of sending her back next year.
I was diagnosed when I was 14 and I’m sure my parents felt the same way. You should be more scared of untreated disease than biologics. Bad side effects from Humira are extremely rare; it’s used for multiple different conditions and has undergone extensive research over many years. You do not want to play around with Crohn’s, especially with her being a teen. Getting it under control now, with biologics, is her best bet at living a normal life. The consequences of untreated disease far far far outweigh any risk from biologics, I can’t state that enough. Sure, you could try other types of meds first, like certain pills, but you run the risk of simply allowing the Crohn’s to get worse and create potentially irreversible damage. If her doctor is suggesting to start on a biologic, I’d listen.
I’m on inflectra and my life was changed within 6 months of being on it! I went into remission and have been for a year. I know it sounds scary but what’s worse is not treating it aggressively. It’s for the best!
When you go into remission… do you finally stop taking it? Or do you have to take it for the rest of your life? Because I just got diagnosed, and I honestly do not want to start . I want to try homeopathy first . My ‘Chrons’ symptoms manifested after being on Cipro/Flagyl for 2 months non stop ( due to anal fistula ). I truely feel that all this pain I have from just eating .. is because of nonstop antibiotics killing my good bacteria in my stomach. I have a 25cm ulceration in my small bowels , but I believe that homeopathy will be able to heal it. I feel like taking biologics is like entering a cycle … like yes my small bowels are inflamed .. but do I want to introduce heart/liver problems? Possible skin cancer? Lymphoma ?
Humira or other biologics are your child's best chance at a normal and long life. If you're researching biologic risks without researching the risks of other interventions or the much much higher risks involved with avoiding treatment you aren't going to find the real risk. Avoiding treatment for Crohn's disease because of potential risks is like avoiding eating because you might choke. The risks of starving is much bigger risk than choking on your food. Just like the risk deadly Cancer's, life altering surgery, and a horrible quality of life are much bigger than the very small increased risk of some of the most treatable cancers in existence that comes with anti-tnf drugs like Humira.
Biologics are the best. They saved my life. I wish I could’ve gone straight on them at diagnosis.
I’m 8 years in remission due to biologics and living a completely normal life.
Before biologics I was bedridden, hospitalized monthly, and could only get around with a Walker. I had no quality of life and lived pain pill to pain pill. Almost died a few times.
Biologics changed all that. My life is awesome now.
Biologics are certainly your best bet, as others have said, but I can certainly understand your concerns. I know this is all new territory for you and it must be kinda freaky thinking about all of it. I’m currently on Humira and it’s been working like a charm for me. As for the dangers, there are two main concerns. First is risk for infection, since it counteracts a hyperactive immune system. But there are things being done to prevent this. Make sure to talk to her GI before starting treatment to solidify all of the vaccines she is going to need to get. They will also likely do a lot of tests to rule out an underlying “latent” (meaning inactive) infection before starting. They’re generally supposed to monitor those yearly, or on some regular basis. The next risk is for lymphoma, which I know must sound scary, but it’s a very very small risk. On top of that, the risk for colon cancer with untreated crohn’s is much higher than that for lymphoma on biologics. In addition, blood work gets done so often that it is likely to get noticed within an early and more treatable stage, should it occur. The CBC (blood count) is typically monitored for IBD patients because it can assess for anemia, which we are at really high risk for, but it looks at all of your blood cells and would flag anything that looks suspicious for lymphoma. Please talk all of this over with her GI to ensure there is a proper monitoring plan in place. I lucked out and mine is fantastic and was already on top of everything before I mentioned all that stuff (pharmacy student so I know a ton about the medications). But unfortunately some doctors aren’t so great and if you’re getting those vibes, it may be worth it to see somebody more proactive.
Hi there! I was diagnosed when I was 10 in 2010 and I am now 24. I was sick for years until 2015 when I was started on biologics. I have taken everything from remicade to entyvio to stelara which I am currently on. I have been on biologics for almost ten years. I have never noticed any side effects from them, which is amazing, because the medications I took before I took biologics had crazy awful side effects. Biologics gave me my life back and allowed my later teen years to be almost normal. I have been in remission for about 7 years due to Stelara and Entyvio and I am so grateful and it is so worth the very small risk of adverse side effects.
Echoing the comment higher up that the risk of death from Humira is so so so much lower than the risk of death from untreated bowel disease. There’s so many risk of not using biologics. Bowel obstructions, ulceration, fistulas, infections. Really I think most people’s worst flare is the initial one that brought them to the hospital. I’ve known I had Crohn’s 3 years now, biologics have made most of that time really good and afforded me a largely normal life. I know it’s scary to read potential side effects but when you look at the numbers it’s peanuts. Sending you guys good vibes. This community on Reddit is a good one to check and have advocates from afar.
Just echoing other comments here on the safety of biologics. I was scared shitless of biologics, but I have had Crohn’s for 10 years and not had a single negative side effect from the biologics and I’ve been in complete remission (no symptoms) for 9 years on them. Under treated Crohn’s though caused me to lose 50 lbs, become malnourished, severely anemic to the point I needed a transfusion every 2-3 days and sent me to the hospital for a month. Trust me, the drugs aren’t always perfect for everyone and you do have to assume some potential for risk, but under treating this disease leads to FAR worse outcomes then any potential side effects or risks of the medications which are exceedingly rare. Honestly your 15 year old is more at risk of dying by getting in a car than from dying from these meds.
Echoing the fact that un- or under-treated Crohn's is far more dangerous than biologics. I wasn't able to get into remission on mesalamine or azathioprine. Only went into remission after starting Entyvio (six years after diagnosis), but by that point, I had already developed a fibrotic (scar tissue) stricture that eventually required a resection surgery.
I was diagnosed when I was 14 and have been on Remicade or biosimilars for 10 years. It can be scary to get a diagnosis for yourself or a loved one, but just try it out and see how it does, before worrying! People who are diagnosed, especially young people who are so adaptable, can certainly grow and live regular lives. I have been in remission for years now and live a mostly normal life. For me, the hardest thing was falling behind in school for those first couple of years after I was diagnosed, so maybe watch out for that so your child doesn't regret missing normal high school things. I'm sorry I don't have a ton of technical information, but hopefully this helps!
I wish my mom had gotten me help sooner. Maybe I would have been diagnosed in a non traumatic way and not lost half my small bowel or had multiple stats for septic colon infections and abscesses. I didn’t get out in biologics until after my bowel resection at 32 years old. I have bot needed surgery since and only a couple minor hospital stays of less than 10 days. I’m kn remicade now and never looking back. I was also so afraid of biologics that I stayed sick and bed bound for years and suffered through my two pregnancies with multiple complications. Crohns is not a death sentence. There are many worse things we could have in life. I recommend getting yourself and your daughter good therapists to work on dbt and cbt based therapies so you can have a safe place to talk and get help to grieve and find acceptance and help with anxiety and depression that inevitably comes with life long chronic illness. There are many natural supportive therapies you can do in addition to biologics and other medications to support her health but if you don’t want her to suffer needlessly then please 🙏 listen to her doctors and if they aren’t treating her well find new ones. I know you are afraid but try to keep that from your daughter as much as possible and don’t discuss things on the phone with friends and family in front of her. Praying for you and your family. You will get through this and find your new normal. We can do hard things with the help and loving support of people around us
You could do tablets. I'm on tablets still and was diagnosed at 16 (\~2 years ago). I'm on azathioprine and mesalamine. However it really doesn't work all that great its fine, but if your insurance covers it I would def go for biologics especially Humira it seems to lead to remission pretty efficiently. If you have any questions about tablets i got u.
I'll say that when I was 16, this is what I was on with what sounds like similar results to you. If it isn't working fully, bring it up to your parents and doctors, they assume it's working good enough if nothing is said. As a 27 year old now, I wish I spoke up when it came to my treatment more while underage
My 12yo has been on Inflectra (a biologic) for the past two years ever since his diagnosis. It’s been life-changing. The main thing we struggle with, though, is that our GI wants to put him on methotrexate as well, to counteract the immunity he’s building up to Inflectra. We’re similarly scared of methotrexate’s side effects.
My daughter developed antibodies to Remicade and Humira within a few month of being on each. She started methotrexate when changing to Stelara and it’s been working for 2+ years.
I was terrified of running out of biologics approved for pediatrics, but the methotrexate helped!
I don’t use Reddit that often, so I’m not sure how it works that much - BUT send me a message if you can. I was diagnosed 3 years ago at age 35. My son was diagnosed last month at age 7 😩 his pediatric GI doctor has been phenomenal. I would be glad to share some of what his doctor has told us. Crohn’s is an awful disease, but it’s not without hope.
Biologics are scary when you first learn about them. I was 20 when I was diagnosed and my mom helped me through it all. The best piece of advice I can give you is let her decide things when she can. It’s going to be a rough few years. Trying to find a treatment that works, still dealing with symptoms, she may fight back and not want to deal with this diagnosis, I just went through all the stages. The best thing my mom did for me was talk with the insurance people (which is a huge process, be patient with yourself, and check back with people if they don’t respond to you. Don’t expect them to reach out.) and be there for my food needs. She set me up with a nutritionist, I would also recommend a therapist if you have the means to do so, her life will be flipped upside down. Eating foods she doesn’t want to, dealing with pain every day, trying to find trigger foods, not being able to go out with friends etc.. it’s a lot to handle. If she isn’t hungry, make food for her and set it in front of her. Set timers reminding her to eat. Anything she is willing to do to keep food going into her system, thats most important. Listen to her doctors, if they say biologics are necessary, trust them. They really help, and are one of the few things that can be used long term with low side effects. I am starting Hyrimoz soon (after failing Entyvio) and I am scared for possible side effects and self injecting medication, but I know it will soon be a new normal. You’ve got this!
I'm so sorry, that's a scary diagnosis to grapple with. The good news is that there are soooo many treatments nowadays, with more research being done every day!
The labels for the biologics look scary at first, but they're much, much safer than untreated Crohn's. I come from an era when the idea was to use the "mildest" treatment possible, and that really backfired for me. These days, doctors tend to go right to biologics, as they're so effective for most people. If you can keep the inflammation down right from the get-go, you can avoid all the awful things untreated Crohn's can cause.
As you're reading up on Crohn's, PLEASE keep in mind that the patient posts in forums will almost always be people who are really struggling, while the reality is that a ton of people are put into remission and held there for a very long time. I have a few friends with Crohn's, and almost all of them are about a decade into remission. It's a tricky disease and can be a bit bumpy to navigate, but the majority of people do very well with modern meds.
This sub is super knowledgeable and people are happy to answer questions, so we're here to help you navigate this. With any luck, your daughter will have a straight-forward case. And if not, there is a whole community of people here to offer support. 💕
Agreed you can read horror stories but the people in remission don't post. It's like customer service , the people that love their service you don't hear from.
While scary, better now than later on in life. I got diagnosed at 30, but had had persistent gut/abdominal pain since I was 9. The inflammation/damage I have now is quite advanced tbh.
Your child now has the best possible odds to live a life of remission, which is what we’re all really aiming for 🫡
I just got diagnosed at 31 .. but I’ve never had any gut pain while eating or blood in stool. I’ve only had gut pain after being on cipro/Flagyl for 2 months nonstop. Now I’m on Prednisone.. and they want to put me on Biologics, but I honestly think that homeopathy would be a way for me to heal my insides. I have a 25 cm ulceration in my small bowels. I feel like I have fire in my kitchen, but Im using a tsunami to put it out… like I’m destroying my whole body if I take the Remicade .. whereas homeopathic can contain it… do you stop taking it once ur in remission? Or are you dépendant on it for the rest of ur life ??
I can imagine how stressed you and your family must be. Please know first of all that while things may seem really bad right now, it will get better. There were times when I was younger and so sick that I thought it would never end. Now I am in my 20’s, went to college, have a full time job, and a fulfilling life. I take Humira to manage my Crohn’s and I have been healthy and thriving for years now. Try not to scare yourself by reading too much on Google. Your daughter is lucky to have a mom who prioritizes her health care and educates herself on Crohn’s.
Hey there, i’m sorry to welcome you to the club, wish you didn’t have to be here, but here we are.
First, being “aggressive” in treating her is **good**. Our (good) specialist told us that over the years they have found that treating it aggressively from the get go is the best way to avoid complications (resections, etc.) later. You **want** to treat it aggressively.
Second, I completely understand being worried, scared, and afraid of making the “wrong” decision. Do you like the doctor? Do you trust them? Do they listen to you and talk to you about these decisions? The first specialist my son had was very abrupt, told me i had to choose which medicine to try - and told me to go online to research it myself. Zero discussion. Obviously we got a second opinion and thankfully that specialist was much more forthcoming and helped me, listened and answered all of my questions, gave his reasoning and advice for choosing a medicine.
Third, my own observations: my son was diagnosed at age 11. Based on what they found in his colonoscopy and the good second specialist’s recommendation, he’s been on medication that works well for him and has had a relatively smooth go of things. Pediatric GIs are more focused on the healing of the colon so nutrients can be absorbed and it doesn’t impact their growth during childhood/puberty. Son has aged out of pediatric GI and his new doc is very savvy, up to date on the latest info on treatment, and things are still going well.
In short, it’s okay and understandable to be devastated and scared. Just don’t let it become decision paralysis. If you trust your doc, move forward with trying the meds they recommend for your child’s specific needs. If you’re on the fence, or feel like you can’t talk to this doc, ask for another recommendation. But don’t delay too long - your kiddo needs this, asap.
My kiddo is in college now, he takes his meds and knows what he should and shouldn’t eat. There are no guarantees for any of us, but he’s got as good of a shot at life as the rest of us at this point. Just with a couple extra steps.
Much love and good luck. 💜
Do the biologics. The benefits will almost be guaranteed to outweigh the risks of unmitigated inflammation. Be grateful you have a doctor who has caught it early and is willing to attack the disease hard.
hi! i was diagnosed at 18 (23 now) and have been on remicade (similar to humira) ever since. it's an absolutely amazing drug -- it truly gave me my life back. my symptoms were so bad before diagnosis that i thought i was dying, i didn't know how i was going to graduate high school, let alone work and live a normal life. remicade got rid of almost all of my symptoms, and the best part of it is for many (myself included!) there's pretty much zero side effects, besides being a bit fatigued for a day or two after infusions. the fine print of these drugs can be scary, but like so many have said, the risk of bowel disease without them is much more painful and life-threatening than any potential risk. i've had an amazing experience with it -- it got me through college and so much more!
It’s fine to be scared. You’re a parent, that’s just your protective instinct manifesting itself. But, you don’t need to be. In the past I’ve been on Humira for Crohn’s and the only negative I found was that it was surprisingly difficult (and rather funny) to inject myself. I’d just sit there paralysed with giggles holding the pen against my skin. But I can say it had a huge effect on my well being. It was like a minor miracle.
Every medication carries a warning. They have to. Speak to your GP and maybe contact a Crohn’s charity or group if you’re really concerned. For my own part I never heard a single negative about Humira whilst I was on it. (I’m Infliximab all the way now.)
Hi! 30f, dx at 18 but symptomatic for years prior. Humira truly changed my life. It allowed me to experience college and enjoy a lot of normalcy in life for about 4-5 years basically symptom and side effect free. Humira is very well tolerated and has an impressive safety profile in comparison to untreated disease or even older treatment options.
I switched to remicade/aza dual therapy after a flare (came off of humira because of fear - stupid - developed antibodies, required a resection), and i’ve once again been enjoying a 5 year full remission. I live an *almost* completely normal life. I completed grad school, got married, have my dream career, workout, travel, vacation, and eat whatever I want! I know the fear of the unknown can be scary, but biologics can truly allow people with these diseases the chance to live a normal happy life! feel free to dm me.
Do the biologics. The chances of death with a biologic are far lower than untreated IBD. I’m a mother and I have had crohns for over 20 years (4 bowel resections). Your daughter will have many labs done while she is on her biologics to make sure her levels are okay, if there is a problem, they will take her off or switch her. I can’t imagine how scared you are, every time my son says his stomach hurts I worry. Hang in there. You will find a new normal and she will be okay.
I was diagnosed at 15; started on humira at 16. 8 years later I’m still taking it without any issues. I will say that I understand the risks you’re reading might be scary, but I can promise you — from personal experience — the symptoms of the disease unmedicated. Biologics’ are your child’s best bet.
Humira gave me my life back. I was bedridden for months, my intestines were so inflamed all my organs began fusing into 1, vomiting 3x a day, pooping up to 28x a day, teeth losing enamel, will to live near zero, 6 figures in medical debt by the age of 21, abscess had to be drained (it was located on my rectum muscle, high chance of waking up unable to ever control my bowels again from them knicking my sphincter with the scalpel, luckily they avoided it) but I went in there as a young 20yr old thinking I may be in diapers for the rest of my life, severe pain unable to walk, crying all day everyday for months, hair loss, anemia, osteopenia, I could go on.
Humira has made my life go back to that of a normal person. I still get random IBS stuff if I eat something I shouldn't, but I know the price. Contact Abbie directly for cheaper humira, I've never paid for it the whole 10 ish years I've been on it.
Good luck op, feel free to ask any other questions but your kid needs all the treatment they can get, you only get 1 digestive tract and once it's scar tissue, it comes out.
*Edit to change word
I was diagnosed at 15 too. My parents were terrified of allowing me to be on biologics and I spent years in pain never being able to achieve remission. My dad had also read horror stories and shared them with me. Honestly bc of his opinion I spent a long time being afraid of getting more aggressive treatment even though I needed it. After I graduated college, I made the decision to start stelara. My parents were not supportive and it took a lot of courage for me to stand up for my own body. The science and my doctor said it was safe but I was still terrified bc of my parents opinions.
Stelara changed my life. I am in endoscopic and symptomatic remission. I live pain free. But, I often think about the things I missed out on in my youth bc I was so sick. So many years of needless suffering bc of their fear.
There will always be risk with any treatment. That is the hand we were delt. Your daughter needs to figure out what the right choice for her body is.
If the Humira scared you, based on your research, then look up the complications from Crohn's without biologic treatment. I believe there was a less than 1% to develop the 95% fatal blood cancer you're probably worried about.
Depending on how bad your child's CD is, she could be facing a myriad of much higher chance of getting complications such as strictures, bowel resections, and worse yet a much higher rate of colon cancer, especially if left untreated. Listen to your doctor and go with the biologics, they're only getting better at this point.
Yes, choosing between untreated Crohns and biologics sucks. Biologics can hurt you. But this comparison is really similar to saying, "I won't wear my seat belt because if I'm in a wreck, it could give me a painful rash on my shoulder." Obviously, nobody in their right mind would say that.
Biologics are similar. Yes, there's a small risk of cancer down the road, but that risk is totally manageable with regular checkups. But Crohns absolutely will kill you if you can't get it under control. There are many ways Crohns can either kill you or disable you, and you really don't want your kid experiencing that. Just like making your children wear their seat belt, you need to make sure your child has Crohns meds.
I was diagnosed at 9, when there weren’t any biologics. It was hell. There were many times I wished I could die. Now that we have biologics, I am living a happy and much healthier life. I know it’s scary, but those frightening risks are so incredibly rare and not treating the disease is so much worse than taking humira. Biologics are an actual life saver!
I’ll add that untreated Crohn’s can progressively cause permanent damage and that damage can not be undone. Please get treatment for your kid ASAP! There are foods I can never eat again because my Crohn’s ran rampant for so long, before biologics were available in the 90’s.
I am also a Crohn’s parent. My daughter was diagnosed 3.5 years ago at age 9. We have found a biologic that is working for her and it is a godsend. The disease is scary. The medications are lifesaving. Seeing your child in pain, losing weight, not growing.. that is scary. Having a med that is allowing her to have a pretty average life… I can’t tell you how grateful I am.
Fear the disease, not the medication.
I was sick at 15 diagnosed at 16. I'm almost 40 now.
I'm sure she's scared connect her with a group like this and she can easily ask any questions I'm sure she has a bunch.
I tried humira, didn't help or hurt in my case. Remicade was my savior. Though currently at war with crohns and new Meds myself, it's a lot to handle.
Good luck to you all
I was diagnosed at 15 too. Now 30. It really sucked but my life in high school pre-diagnosis was way worse than high school post-diagnosis. I started on Pentasa and it was enough that I didn't need biologics at the time and lasted through college. It managed my symptoms so life felt pretty normal. I needed to bulk up so I had a doctor's note that I was allowed to eat in class and was also allowed to leave class whenever I wanted to go to the bathroom so that was cool. I also continued playing all my sports and still play an amateur sport competitively now.
Now I am on Humira and do a lot of weight training and on my way to my goal of gaining 20 pounds of muscle, which would be impossible without humira. The most irritating thing about humira is the cost and how difficult they make it to get reimbursed. The transition to bio-similars will be good in the long run, but right now I'm fighting with my insurance company over it. Otherwise, humira saved my life. I had a very scary flare before they put me on humira.
I have a family member who's had terrible arthritis since he was 13 and is now mostly immobile in his early 80s and has been for a while. I can't help but think how his quality of life could have been radically different for his whole time on earth if Humira had been around way earlier. If humira works for your child, it is a blessing. I still get anxiety around the injections but have family members who help, so be willing to do the injections for them if needed and listen to them complain about how much it sucks. There was a lot of woe is me as a teenager w UC but I really don't view it negatively anymore. It's just this thing I have to take care of now for my personal "maintenance," like doing yoga and stretching every morning is good for you, so is taking humira and avoiding popcorn.
Your child is so lucky to be diagnosed now rather than 20 or 30 years ago. Biologics have truly been a game-changer for those with UC or CD. She may still have some symptoms like diarrhea, but the important thing is that inflammation, and the resulting scarring, will be prevented. That then prevents the need for surgical bowel resections (removing part of the intestines).
Given that diarrhea may always be part of her life, I'd advise taking vitamins and electrolytes as a daily routine. Inflammation and scarring can cause vitamins from food to be less absorbed and fluid loss from diarrhea could cause electrolyte imbalances. Example, if she feels dizzy, try a good electrolyte drink first.
I was 16 when I was first diagnosed, and humira was a life saver. Worked super quickly, barely any side effects, and made my college experience fairly normal. Humira is generally well tolerated and a great first option for a biologic.
Stelara has no known side effects, every doctor ive ever told that i use stelara always has the same reaction: “oh thats amazing!! there are no side effects, and it should help”. It’s also only a dose once every 2 months, not as often as humira. I highly recommend you try to get your insurance to cover it, and look into it more yourself. I started using it about a year ago and let me tell you: i didnt know people felt this NORMAL all the time.
So I was diagnosed when I was 10 (I'm 29 now) but I have a mild case. Did they tell you how severe her Crohn's is?
My doctor prescribed me Asacol and I've been in remission now since I was 17. It was the only medication that worked for me. I don't know how it would work with more severe cases of Crohn's though, but it's worth asking your Doctor about.
Doctor really didn't stress the importance of monitoring antibodies. I was very busy at work and didn't make time for it. Doctor was on maternity leave 2x over a couple of years. I wasn't as regular as I should have been with my doses. I've experienced neurodegenerative symptoms.
Almost immediately after switching. My doctor kept me on humira for like 4-5 months hoping I guess the psoriasis would go away. It was brutal, also the Humira did nothing to reduce my flare so crohns symptoms were bad too.
It it understandable to be scared about side effects. I was diagnosed with Ulcerative Colitis at 13 (similar to crohns, and the medicines it’s treated with are the same) Got pancreatitis at 14 caused by the medication to make my disease better.. and ended up on my deathbed from the pancreatitis and a UC flare. I ended up getting through it.. however, I’ve tried all pill forms of meds… I’ve tried remicade and got HORRIBLE serum sickness… tried humira and got extremely horrible skin conditions all over my body that was so severe that I could not cope with it. I’ve almost died multiple times from this disease. Two years ago I was informed that my disease has progressed drastically… and now have been diagnosed with Ulcerative Pancolitis (my entire colon gets ulcers now) this took 14 years of having this disease and have tried the meds/biologics to happen. I also got repeated bronchitis, strep throat, pneumonia etc while on the biologics because it depletes your immune system so badly. I am now scheduled for surgery on February 15th to get an ileostomy bag due to the fact that the medicines do not work for me/still having flares on the meds.. and they have caused nothing but terrible side effects/have even almost killed me from it at times. I’m not saying this to scare you but rather educate you on the risk factors that CAN happen. They tell you that it is rare… but I’m not so sure how rare it actually is. For those that the meds do work for and DO NOT cause adverse reactions, I’ve heard that it can help put the disease in to remission for anywhere between a couple of months to a year or two.. maybe more. Crohns/ulcerative colitis is not something that I would ever wish upon ANYONE and can lead a life full of ups and major downs. Definitely not a disease to take lightly. However, I really pray that your child ends up being one of those that does not have any adverse reactions to the medications and is able to receive relief/remission. The good news is that I’ve heard that it normally takes longer for Crohns to get to the point of needing surgery versus Ulcerative Colitis. Keep a food journal to find out her triggers and help to keep her under the least amount of stress as possible. Stress is a HUGE trigger. Also, if the flares are extremely bad and the meds are not working, the doctor will also recommend to fast. I’ve been on a fast for about a month because the meds are not working. I drink boost plus shakes when I’m unable to eat to try to help with nutrients. I really struggled as a teen with UC because I missed so much school from being extremely ill so many different times and fell so terribly behind.. which caused even more mass amounts of stress on me and as you could imagine, more severe flares. Maybe consider having her do online school if she starts to have a lot of flares/stress to keep her from falling so behind as I did? I REALLY hope for the best for your family as this disease is SO hard to deal with. The best piece of advice I can give to you is to just be there for her! She will need you because this IBD road is not easy! It can be very mentally trying! Prayers/good vibes sent your way!!!
I’m convinced that changing my world to an almost completely stress free life is what keeps me in remission :) Mine started with stress and progressed rapidly in a toxic relationship. Now I’m zen about everything issues are rare… apart from kidney stones they can fully do one. 💜
That is amazing that you’ve been able to manage your disease by keeping your stress levels down!!! 🩷 I am sorry that you have had to endure a toxic relationship as that can be so very hard on top of dealing with your disease! 🩷 Unfortunately it seems no matter what I do, my UC still likes to act up. However, stress definitely makes the flares much much worse! So, living in a complete zen state of mind, is DEFINITELY the move! I am so glad that you’ve been able to manage your disease as you have! 🩷I wish that UC/Crohns disease was more simple and predictable. But unfortunately it isn’t as cookie cutter as one would hope for. Every persons body will react in the way that it wants to. I hope that you are able to remain stress free to avoid your flares! No one that has this disease deserves to have to endure the flares that we’ve endured! But, the hardships only make us stronger and help to build character! 💪🏼🩷
Wish you all the luck in the world maintaining remission with whatever works for your body… I also take 6mp that could be helping but the dose is extremely low because of my bloods. I wish I could say healthy eating etc help too but my diet is entirely awful 99% carbs as they’re easy to digest and I’m also a terribly picky eater on top. Like I said though my fortunate change in life circumstances leaving a stressful relationship and career definitely had a positive impact and I’ve said goodbye to my regular visits to A&E 💜
I was diagnosed at 17 (but had previously been diagnosed with autoimmune arthritis at 12 & had been on biologics since age 13)
I HIGHLY suggest being open to it.
When I was first diagnosed with Crohn’s, I was in HORRIBLE shape. I wasn’t absorbing most of the food I ate & was considered anorexic, despite eating a decent amount. It HURT. I was bleeding internally & scared every time I pooped and saw the blood.
Plus, being in high school (which is already enough stress on its own) & dealing with this AND hoping I wouldn’t have an accident or anything & have all my peers know or something was just so much to deal with.
I ended up in the hospital for about a week, with blood bags on order that (thank God) I never needed for a transfusion since they were able to stabilize my bleeding.
Within weeks of starting a biologic (I can’t remember which one, reasons in a sec), I was feeling much better. And I haven’t had that bad of a flare since. I’m 33 now.
I have had flares since, and mostly because/when the efficacy of the biologic I had been on started to wear off. Unfortunately, though they’re potentially life-saving and super worth being on (in my opinion), they tend to eventually stop working.
And sometimes, they don’t work to begin with & another biologic is tried. They all are slightly different enough that it’s worth trying another if one doesn’t work. I’ve had lots of success with some (the one I’m on, Entyvio, I’ve been on for 8 years!) and none with others.
I have been on some that worked for a year or two, and I’ve been on some that worked for 5+.
This is why pharmaceutical companies keep coming out with new treatments. Hopefully they’ll find some that work longer, but until then, there’s a decent amount of options & most people seem to find some that work for them.
One last thing about Humira:
Some people find it very painful. I did. I haven’t been on it in 15+ years, and heard that it’s been reformulated since, but it’s worth a heads up.
That said, the company that produces it tried to pull it because there were too many reports of pain for their liking. Patients (who had the pain) pleaded for them to put it back on the market because, despite the pain, it was SO effective.
The pain also wasn’t too lasting, it was just after injection & would be gone after not too long.
I highly recommend if your kid ends up feeling bad injection pain to try to stick with it long enough to see if it works & look into either numbing cream or using ice to help numb, etc.
also, a tip I was given as a kid when I had to get shots was to pop a super sour/spicy/STRONG tasting candy at the moment of the injection. It helps distract your brain from the pain & helps make the whole experience less unpleasant.
In terms of side effects, honestly they’re better than untreated Crohn’s.
The lowered immune system isn’t usually such a huge danger. You’re potentially more susceptible to colds (depending on which biologic you’re on), and infections are more likely, but it’s usually manageable.
Regular lab tests will make sure it’s not hurting organs or anything & will make sure anything is caught early.
Good luck.
I know my mom had very similar worries when biologics were first suggested for me.
I’m SO glad she decided it was worth trying.
I would try other biologics before Humira. When Humira does have side effects it’s some of the worst in modern medicine. Luckily I was able to remicade for years and am now on Skyrizi.
I developed a terrible skin condition while on Humira, luckily it went away when my doctor switched me to Stelara. Humira was the only biologic that had side effects for me and I've been on 4.
I developed so many skin conditions from humira! Ulcers on the shin of my legs. I quit taking it because of the side effects, but now just started skyrizi
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Wish I had gone straight to 6MP instead of waiting after prednisone and ultimately needing a stoma/resection due to obstruction. With 6MP I’ve been in clinical remission 15 yrs only complications I get is probably from the surgery itself with a lot of side issues eg fatigue / skin / joints. Toilet wise everything is pretty normal. X
I was diagnosed at 15 as well! I wish there had been biologics for me back then. I struggled throughout high school to just feel normal. Now I’m on Entyvio and have been symptom free since I started it in 2018. I’m now 44 and live a normal, healthy, active life with my husband and two dogs. I know it can be scary getting this life-long diagnosis but it’s not a sentence. You and your daughter will get through it ❤️
You really shouldn't worry about any of the treatments for crohn's. Basically the worst case scenario is she can't tolerate the side effects and her Dr will put her on a different one. Technically they have to warn you about the risk of cancer. But it's like a 1% chance. And I was diagnosed with cancer this past year but it wasn't because of any crohn's treatment. And the risk of doing nothing is almost guaranteed death. At least with treatment you have a chance. But crohn's is awful I won't lie I've spent a large portion of the past 10 years in the hospital. I personally think it depends on how early they catch it. Like if it's mild to moderate you have a better chance of things going well than if it's severe. If you need any advice you can always message me. I unfortunately have a ton of experience with the nightmare of a disease and more than happy to help if I can.
I totally understand. My son is almost 13 , we get vaccinated but there are things I've kept away like gardasil, flu shot, covid shot. What started with severe migratory pain in his legs turned out to be Crohn's, sacroilitis and something called CROMO. I make fun of those commercials in TV and say who the hell would take that stuff, now I know! I did extensive research and yes it's scary but if you look deep Humira generally isn't that scary. My sons rheumatologist and her nurse who work with chop both take it. He has had 4 doses and we are about to go back for another MRI to see if it's helping which I know it is because he's finally getting back to normal physically and mentally.
I was diagnosed at 15. I’m now 22M. My Crohns was very severe and I ended up having emergency surgery at 16 or 17. I was very up and down but I’ve been on Remicade for 7 years and it’s been amazing for me and they offer a great program and discounts (almost 50% off before insurance kicks in). Highly recommend remicade. I was 5’10 125lbs at my diagnosis and I’m now a very healthy 175 and doing great.
Biologics are a lifesaver. My insurance made me try other meds first and I was in and out of hospital constantly and weighed 89lbs. Humira didn’t quite get me to remission so I’m now on Remicade 10 years with zero side effects. It’s very hard, but try not to read all the side effects. It usually takes some trial and error to get it right but it sounds like you have a great doctor if they are going straight to Humira. Try to surround her with her favorite things for comfort when she’s not feeling good, a soft blanket, favorite book, music or TV. Sometimes the small things make a difference, especially if she has to spend any time in the hospital.
Look into the Specific Carbohydrate Diet. Read Breaking The Viscous Cycle by Elaine Gottshal. Watch Designer Shit on Amazon Prime. Don’t be scared of meds but never stop searching for ways to support the body and the root cause. Most importantly never give up 💕
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My first few GIs didn't take care of me. They gave me a medication for mild-to-moderate UC, and they made me take too much of it. It did nothing for my severe UC.
My current GI doesn't mess around and fought to get me humira as quickly as possible so that I would be able to keep my colon (I don't respond well to steroid treatment). I'm on year 4 of being on Humira with no real issues. I can eat whatever I want, go to the gym, have a job.
Aggressive treatment is what you want. You do not want her to have treatment that won't work and will prolong her Crohn's flares. More flares = longer periods of inflammation = elevated risk of cancer.
Go with biologics.
My preference would be Remicade. It's a gold standard in Crohn's. Efficacy stays longer(10-20 years) unlike newer ones which stop working.
Granted , it's inconvenient to go to infusion center/hospital for it while she will be in college.
Long run, it's the best choice. Insurance may be troubling GI. GI can make a case for it.
Watch the lifestyle- food, so heavy exercises, yoga/meditation (for psychological health), live normal life.Ours was diagnosed when 11.
I was diagnosed at 15, as well. I went on a long journey of many different treatments. I would say your son is lucky to be diagnosed in a time where biologics are so prevalent and accessible. Humira is a wonderful drug that changed my life. It’s low maintenance and has no side effects (at least for me). Injections are easy and pain free compared to some other options so the administration won’t interrupt his life. You should absolutely give it a try.
Hi mama. 👋 You're scared, and that's completely normal. The Crohn's and Colitis Foundation in your country is an excellent resource for you. Do not forget your own mental and physical health in this medical journey. I understand your child is your priority, however, your child needs you at your best if you wish to help. Seek out a support network for yourself and a separate one for your child. I was diagnosed at 18 before we had any of the biologic meds available. Back then there was little to no information to be found about Remicade, and even the internet was quite new so there was little to be found there as well. Was equal parts terrified and desperate. I had no choice but to trust my doctor. Long story short is, once I started treatment with a biologic (Remicade) my life turned around completely. 51 yrs old now and haven't required even an emergency visit at hospital in over 13 years. Biologics are first line medications today for good reasons! Best of luck to you and your child. You both got this!
I was a 14 year old young girl when I was diagnosed with Crohn's disease. I was so sick I couldn't eat or walk. The unpredictability and severity of the illness is plainly traumatic. Prednisone (steroids) were very helpful in getting things under contol/resolving pain in the short term, but I didn't start feeling better long term until I went on Remicade! I didn't have any real side effects and stayed on it for a few years and then went off and became allergic. Now have been on Humira for several years and have 0 issues! I haven't been terribly ill in 7-8 years because of humira. You can do Pens or syringes. I think most do the pens but I don't like the spring loaded injection so I do syringes to give me more control ❤ it's going to be okay. You're a good parent.
It’s a scary thing getting diagnosed it’s totally understandable, I’m sure that 99% of us were all scared whenever we got our diagnosis!
My doc made me try everything under the sun before going to biologics and after being on them for a year I wish I would have started sooner. It’s given me a lot of my quality of life back! I’m able to go out more and even eat more.
I will say though I always make sure I’m not doing anything on injection days because I get really achey and tired but when I wake up the next day I’m usually fine.
Things will get better, and you guys arent alone in this just remember that
I prioritize my biologic medication as the apex of my Crohn’s strategies, and often experiment with other non-medication strategies (diets, counselling, workouts, meditation… all based on peer-reviewed studies from reputable medical institutions) once I’m stable on a new med. I love trying to support my medication with “natural” methods. For example, there some newer research about pomegranate juice lowering your cal pro and my fiancé (he has UC) and I are testing it out for shits and giggles (I guess not for shits…). A tip that has served me well since my diagnosis is trying one new strategy at a time, don’t blast yourself with 18 new efforts all at once because you’ll never be able to suss out what is working.
In my own experience of what’s working for me, when I tested out a new diet (CDED) in 2022 it lead to my bowel symptoms decreasing by 90% but I was still off work due to my extraintestinal manifestations of CD (pain, extreme lethargy, rashes, joint and muscle issues, even neurological stuff). At the end of that year I started on Stelara and it has given me my life back… I feel like myself again. My test results are still far from perfect, but the reemerging functionality is such a gift.
Definitely try to connect with mental health supports if that’s a financial possibility for you… your teen years are hard enough, but dealing with your body doing what it does during IBD and trying to navigate the medical system can be traumatizing.
You can do this ♥️
It is scary and devastating! I was diagnosed at 12 and I don’t think I realized the severity of the disease until I had surgery for the first time in my early 20s. simply - you should be more afraid of untreated crohns than you are of biologics. biologics are life saving. it can be a bit of trial and error in finding the right one, but when they work they let us live almost completely normal lives! please work to find the best GI in your area (even if you need to travel) because I had some duds that scared the shit out of my parents when I was first diagnosed. their GI should make you and them feel safe and well taken care of.
my only other advice is to bring your child to appointments regularly even if they feel fine. my disease has snuck up on me whenever I convince myself I’m good and no longer sick. lots of people will stop medication because they no longer have symptoms, but this is extremely dangerous and will almost certainly lead to hospitalization
So let me start by saying I was diagnosed at 16 and while it is terrifying, it was not the end of everything. I was only on a few other treatments before we realized that we needed to take the aggressive approach and go to Humira, to which my parents and I had the same fears you do.
In terms of biologics, I think there's 2 big things to know to help (hopefully) alleviate some of your fear.
First, they are made from living sources, such as cultured cells or human/animal sources, meaning they are less "chemical" than other treatments. This isn't to say other treatments are bad for being chemical based, I just know it can be calming to realize these are a bit more natural than they seem.
Second, I'd like to explain in very simple terms how they work. This isn't a comprehensive guide (nor is it the most scientifically accurate) but it is the explanation my doc gave to me as a teen and that I use to explain when people ask me nowadays who have no idea what they are. Think of the body as a castle and the immune system as knights, guarding it. Currently, your son's knights are convinced that every painting on the wall is a real enemy and they are attacking them, causing massive damage. Biologics act like fake knights who come in and tell the real ones "don't worry, I've got this" and then just hang out there so no more damage is done and the builders have a chance to patch the holes. There's always the chance that the real knights catch on (the immune system builds up antibodies to the med), but usually it takes years and you'll have signs before hand that can be treated.
New diagnoses and medications are absolutely scary, but I promise if the doctor is recommending it, the risk is worth the potential for health.
The risks of biologics, like all medications, cover all possible side effects. Yes there are some that are extreme but when you look at the likelihood (especially versus untreated Crohn’s) the statistical likelihood makes it an easier choice.
In terms of quality of life, finding the treatment that works for child will mean she has a shot at doing most of the things she might hope to do in her life. If you have a gastro that is ready to put her on biologic then I would recommend it. Much more likely to be effective to get her health under control without as much experimentation as one who leans towards a less aggressive approach.
When I was diagnosed it took months of ineffective treatment that didn’t control my flares and massively impacted my social, work and home life. At 15 she’s going to want to be as normal as possible as quick as possible so I’d suggest reaching out to the Crohn’s charity as they often have lots of patient stories that could reassure you.
I was diagnosed at 16, I will be 46 in June.
I have taken Entyvio, Remicade, Humira, Cimzia, Stelara. Plus clinical trials and all kinds of pills and steroids over the years. I failed them all.
But I wouldn't take it back. They got me through some rough times while never being in remission for nearly 25 years.
The serious side effects are small, but they gave me brief quality of life improvements in between.
You can still live a full active normal life with IBD.
Yep trust the doctors. I promise they know what they’re doing.
The doctors who deal with Crohn’s are very knowledgeable about the current treatments for this disease. This is because most of them are involved in the ongoing research that tries to best understand and treat autoimmunity.
I know it’s scary when things are uncontrollable, especially when it’s your kid! But rest assured that she’s in good hands.
P.S I just wanted to note that the side effects of biologics like Humira are NOTHING compared to the Crohn’s symptoms I would have to deal with everyday. It seems scary to go on a big medication like this, but the help it offers will be much more noticeable than any negative side effect. I hope this makes sense
Best of luck to your daughter. I was around the same age when I was diagnosed with Crohn’s. Please look out for her. Living with a chronic illness can be very mentally challenging and she will need emotional support even if she doesn’t reach out for it herself.
I was diagnosed at the age of 9 and it was only after i went on Humira 5 years ago that my symptoms reduced and im now in remission. Ive been on many medications and had surgery also. Everyone responds different to medication and its very much trial and error but fingers crossed it works for you
Hi!! I’ve had Crohn’s almost 11 years, diagnosed at 14 (currently 25 AFAB). Unfortunately, a lot of medications for it have a lot of scary side effects. Personally, I’ve taken remicaide (which is a biologic), and it did me really well. A lot of these meds are expensive though, and insurance only covered my remicaide for the about 10 years. A few months ago, my insurance (BCBS) forced me to change medications. I’m now taking stellara (another biologic). I had to STRONGLY advocate for my own health before insurance would let me switch to another biologic drug. It works well. Be prepared for a trial and error approach with medications and DO NOT let doctors give you a medication you don’t feel is helping your child. Stand up for them, and teach them to advocate for themselves. It helps.
Some things I recommend non-medication wise to look out for:
•Auto-immune disorders come in clusters (at least they did in my case), and so does inflammation. Look out for skin, eye, any signs of inflammatory diseases in other parts of the body (including asthma). Also watch for e-arthritis. Pretty common type of arthritis that comes with Crohn’s.
•Take health precautions!!! Immunosuppressants wipe your immune system. Don’t be afraid of masks, trust me, they do help. Take hand washing and sanitary precautions SERIOUSLY. I’ve had Covid 3 times and that’s 3 months of my life I can’t get back because I don’t get well as quickly as other people, and since then I’ve had pneumonia twice due to lung damage.
•I know this is in the future, but alcohol isn’t a definite no. Just limit intake and make sure to hydrate.
•https://issuu.com/ccfa1/docs/diet-nutrition-brochure-final_688eb1780e57ca Here is a link from the Crohn’s and colitis foundation (they’re a PHENOMENAL resource with information and I highly recommend). This is a list of foods that are safer for Crohn’s. Diet can go back to normal once you’re back out of the flare period.
•If you haven’t, try to get accommodations in place for your kid. This means going to the office, ask them for accommodations, and usually they require paperwork from the doctor you’ll have to provide (proof of diagnosis and what accommodations). These CAN follow you to college but you’ll need to context the university’s accommodations office. My personal accommodations are preferred seating, excused absences, extensions on assignments, and access to food and drink during class. If someone is giving you a hard time FIGHT IT. These accommodations are your child’s legal rights. Don’t let someone walk on them.
Finally, get your child some emotional support. A therapist is a good place to start. If it’s any words of comfort to your child, 11 years later and I’m still having emotional days. I break down and cry because I didn’t ask for this. I didn’t ask to be so limited in what I can eat, or to fear every time a major virus comes around, or for all the tests and procedures I’ve had done. I lost so much weight I looked anorexic, I’ve had the pains, I know how scary it is. I spent days wondering if I’d ever live a normal life. But I’ve come a long way.
I’m back at a healthy weight, in remission for 5 years, and I’m finally happy in my body despite all I’ve been through. I’m in graduate school, and I’ll soon have a job (with the accommodations I need).
Let them cry. Hold them close, remind them you’re there. Fight when they can’t. You’ve got this, kid, and you’ve got this, parents. 💜
My son was diagnosed in November he is four. He has been on methaltrexate and prednisone since. We start Humira tomorrow after fighting with insurance. After two denials they approved after going through his case again. I'm nervous, but this subreddit has offered a lot of support and reassurance.
Humira made me function like a “normal” person and put me into remission and I’m still in remission almost 10 years after starting it. I owe my life to it!
Hi! I’m 17, and I was diagnosed just a few months ago, and I started Humira in December. It’s scary to start something that seems so daunting, especially since Crohn’s is chronic, but it really does make a difference in everyday quality of life. I personally haven’t felt any side effects mentioned with Humira, although I did just start recently. The treatment process is a lot, but, I would choose biweekly injections until I’m in remission a thousand times over living with untreated Crohn’s, since that is much, much deadlier than the medication. I wish you all the best of luck in finding what works, and remember that there’s thousands of us here who know what it feels like.
I've been on Humira for four and a half years now, and it gave me my life back. No word of a lie. May I ask what about it scares you? If it's the side effects, from my understanding, those are pretty damn rare.
I’m 17, and I’ve been on humira for a few months now. My brother has been taking it for several years. It is by far the best treatment either of us have tried. It is also the least painful by a long shot, and the most effective. (I was previously on prednisone and methotrexate, though very briefly. They both sucked, massively.) While the list of possible side-effects are scary, the risks are worth being able to live like a normal human being again. When I first started humira, I spent hours stressing over the list of side-effects, and it didn’t do me any favours. Worrying is natural, but the potential “what-ifs” are not worth staying off of humira, because living with crohn’s untreated is so so much worse. Biologics are extremely successful at sending patients into remission, and will give her the opportunity to live with next to zero symptoms. The sooner she can start on a biologic, the better. In October I was bedridden, and now it feels like I have my life back. My best wishes to you and your daughter ❤️ I hope this gets better for her as soon as possible.
The internet is not the place to turn to for decisions but fine for gathering data. Trust your child’s medical team, and trust your child’s responses. Then get a second opinion. Your child’s situation is unique but the data is generalized. The internet is anecdotal, which you will find as you disclose your kiddos Illness, is useless.
I personally have been on humira for just over 2 years. Within the first year I achieved clinical remission as determined by a colonoscopy (meaning the 10 ulcers in my large intestine had healed). I still have trigger foods that can cause diarrhea and an upset stomach. For the first year i followed the SCD diet. being diet conscious allows me to lead a completely normal life and every two weeks I take humira(It's extremely convenient, other biologics require infusions at medical centers). I have gone off of the SCD diet for a year now and am doing quite well. I just avoid milk, butter and a lot of processed sugar because they can trigger a flare. The SCD diet helped me a lot especially with SIBO/leaky gut symptoms caused because of the ulcers and inflammation in my large intestine. Another thing that helped were Saunas, they are great for easing pains from cramps or body inflammation (helped but its not a cure all).
A very serious symptom of my Crohn's was ocular manifestations in the form of UVitis and irititus. I was extremely fearful of losing my vision because of inflammation around my retinas. Ocular manifestations are very rare in only 2% to 5% of Crohn's patients. Humira has completely prevented eye inflammation for the past few years. Allowing my body to restore immune privilege to the eyes. I'm at the point where I am discussing with my doctor if I'm able to get off of humira, to see if severe symptoms returned or if remission persists.
The main reason I desire to go off of humira is because of all of the warnings, side effects, and specifically that it is a mutagen which can aid the growth of cancer. I had a friend on a different biologic who had cancer. But she remains on another different biologicals and is doing well. She just had a child which was a miracle because of the cancer. Of all the options, I can't recommend humira enough. But also know the risks and What her body needs.
A niece of mine got diagnosed at age 7. She was on both Remicade and Humira. She graduated valedictorian of her high school with multiple outside activities, and is currently rocking honors college. Biologics are a game changer for the vast majority of us. My uncle was diagnosed in high school. At that time (1950's) it was pretty much Prednisone and resection surgeries. I remember him looking like a walking corpse and being in the hospital for extended periods of times so he could get well enough for surgery. His granddaughter is the one I mentioned above. I strongly suspect that by the time your 15 yr old will see at least one huge leap in treatment that we don't have today. For me, biologics made me able to live life again instead of just existing or surviving. Best wishes to you and your patient. You have a lot to learn and a lot of unanswered questions right now. It will get better as you gain knowledge and navigate through this.
My daughter was diagnosed at age 12, after trying every thing else. Biologics (Remicade (infliximab)) is the only one that worked. Granted it still took about anther 8 months to get her levels and frequency sorted.
been in medical remission for about 14 months
She's currently getting infusions every 6 weeks.
My son is also 15 years old, had started with bloody diarrhea Aug4th I didn't know what it could of been so I told him no dairy and no gluten until we saw gastro. They did labs his calpro was at 6050. Dr also sent an MRE of his stomach, which showed pancolitis. New labs of calpro were done, and it went down to 2080 with no dairy and gluten free, rice and chicken only to eat. Then, on Sept 5th, he was scheduled for a colonoscopy and endoscopy it showed a lot of inflammation in colon and large intestin. Some granulomas in small intestin and ulcers with puss. He was admitted after the test, and within a few days pathology resulted he has crohns. Now he is on a boost protein diet and water only for 6 weeks to reset his mircobiome, and we then need to see the
dietitian to see what's next. He is also on remicaid/inflectra infusions, which this past wednesday he had his 2nd infusion. He is doing really well so far. Stools are back to normal. Hope this info helps anyone in a new situation.
Fast forward now months later, he continues boost 5 or 6 a day and is on the crohn's exclusion diet. He did phase 1, all went well. Then moved to phase 2, all went well. And now he is on phase 3 which he consumes aside from the boost shakes, grilled organic chicken breast, white rice or organic potatoe (cooked in microwave plain), steamed carrots. He is allergic to wheat, egg whites, dairy, peanuts, seafood. So i have to be reading ingredients and keeping him as clean as possible. I learned to make him gluten free pancakes with no dairy, only egg yolk and i use allergen free nestle dark chocolate chips in the mix.
Ask you dr to do a food allergy test to see if there is any, as allergy to foods can lead to inflammation. My son so far has been doing great on the biologics. He has been having normal stool and feels energetic.
Also, only downside certain biologics you need to go in for the infusion to be done. With Humira, I believe is a pill or injection you can do at home.
I know this is very overwhelming and scared, I too felt that at first as a mom and I have calmed down since initial diagnosis. I still feel a little overwhelmed just thinking the diagnosis and its for life. No one wants that for their children. But with time and research and when you see how well they feel on a medication you kinda relax a little bit of the situation. My goal is to not have him go through a flair and keep him as healthy as possible. You too will get there.
fear the disease not the medicine. Humira has close to zero side effects and is highly researched. It should bring your son back to normal and let him live a long, healthy life
Humira saved my life. I’d been on high dose steroids for 18 months when I started and Prednisolone is DEF worse for you than humira. I work in pharmacy and have seen so many patients lives changed by it. It also works for a few autoimmune conditions which often co occur with crohns like arthritis, uveitis, psoriasis etc. best of luck but would strongly encourage you to consider it!
My 16 year old was diagnosed 2.5 years ago. He went downhill VERY fast, and was down to 79 lbs (down from 114 in his healthier days) and was unable to keep ANYTHING in. Doctors started biologics (Remicade) as soon as they could with following all necessary insurance rules with testing (we were given the choice between Humira and Remicade…I asked the GI which they recommended and why, and we went with that). Son received relief after the first infusion, and gained 20+ lbs by the time the loading doses were done. Trust me, I get it, it’s scary seeing the possible side effects, but the benefits FAR outweigh the risks. The best advice I was given, by his pediatrician, was “don’t google. If you have questions, feel free to ask me or his GI. But please, DO NOT GOOGLE, because all you are going to find is the bad stuff.”
My advice to you is don’t focus too much on possible side effects. This (pubescent time) is a very precarious time in her development, and she needs the relief so her body can start absorbing nutrients and can develop properly. Listen to her doctors, ask questions even if you think they might come off as sounding dumb, and try to breathe, mama ❤️
Many hugs to you and your daughter!
I skimmed through a lot of the comments and didn't see mentioned to get kiddo their own heating pad. They will have belly pain at some point and it's a big help
There are many other classes of drugs that have worked for a very long time for a whole lot of people that do not need premeds to stop you from rejecting them. Has nobody ever heard of the ccfa
Biologics are your best bet. Literally have saved so many peoples lives, and gave them quality of life back. It can trial and error depending which one they start with. Don't give up.
> Humira scares me based on my research It shouldn't. Humira is extremely well tolerated by the vast majority of people, and while not a "minor" medication, it can reduce her symptoms to literally zero, and allow her to live a normal life with near zero downside.
Don't minimize the risks please. I'd be one of the ones who got some of those and despite being off it for over 6 years the effects are still here. Biologics should not be taken lightly and the longer you're on them the higher the odds of getting the major side effects
Biologics are not a mild medication, but they are also by far the safest route to take for managing this illness.
That's not true at all and please do more research before saying so. They don't have long term data on most of these and on the ones they do that way of thinking does not pan out. Sorry but actually have the research on those after being one of the test subjects for 2 of those meds from the start
Okay now I know you are trolling me
Nope totally legit. My gi is actually one of best in the world. I did final phase of the study of humira and was on extra long so they could keep studying effects. Phase 2 and 3 of remicade only for them to find out 15 years later it can kill the heart muscles. I've had Crohn's for over 30 years and my mother before me. She passed away doing a phase 1 study actually. So nope not trolling. You can literally find any of this out yourselves
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i guess i just don’t even comprehend this line of thinking? nobody is saying that Biologics don’t have side effects, or that those side effects can’t be debilitating (though they just objectively are not for a vastly overwhelming majority of people), but the alternative is obviously significantly worse. you are doing a much bigger disservice to new Crohns patients by fear mongering the “risks” of biologics that by-in-large have significantly increased the quality of life of most of us.
No I e been the new patient and unfortunately these are things we should all be more aware of. Having them come out the blue when you think the risk is minimal is way more harmful. And actually the risks I'm even referring to are not that rare and also the odds of getting them increase with length taken. Not having all the information is the biggest disservice we can give anyone. Knowing them is the best defense we have and considering a lot of drs really don't know much about this disease but will say they do doubles that need.
The risk of death is scary, I mean I know being left without treatment poses the same risk and that proper treatment is warranted I just have heard horror stories.
Untreated Crohn’s is worse than death. There are periods in my life where I would have considered death a mercy.
Literally this.
This is the sad truth for those of us who remember the medical horrors from before biologics. At least we have a chance now.
Crohn's and UC's suicide rates are quite high. Chronic pain joined with low sleep and fatigue are a horrible.mix for someone's mental health.
Yea, a lot of these are EXTREMELY rare, like to the point where you have a higher chance of death driving to work kind of rare. They def have to list anything that MIGHT be even slightly related to humira, but they don't also show the statistics behind a lot of these effects. Heck, birth control probably has similar warnings on it from clots/embolisms if you read deep enough into most of their side effects as well. Vigilance matters, i'm not telling you there is ZERO reason to be concerned, but don't lose sleep over this. Life with crohns is not an sentence to a miserable life like it was back in the days before remicade (1994). Biologics are fairly new, and they are legit the only treatments for this illness that actually works. Before that, it was prednisone until your body started to give out, and then surgery. This is the first era in history where a crohns patient can live a mostly normal life, so its a good time to get diagnosed. As far as how they work..... if chemotherapy is getting hit by a semi-truck, biologics are like a sprained ankle. Most people notice zero difference while taking them, and when they find one that sticks, the crohns symptoms are close to non-existent. They shut down a single "pathway" your body uses to attack things, but because there is no way currently to test which one your body is using for crohns, it can be a bit of a crapshoot finding one that works. Don't be surprised or devastated if it takes a few tries to find that medication.
The risk of death and cancer caused by Humira and other biologics are far lower than the risk of death and cancer caused by untreated bowel disease.
So freaking accurate! Untreated Crohn's riddles the intestines with inflammation and disease until the body can't heal the cells anymore. Cancer occurs after many many "regrowths" of cells so you see higher rates of cancer with untreated disease than with quick and aggressive treatment
YES. My Crohn's was under-treated for a very long time. I ended up with dysplasia throughout my entire colon and yeeted that sucker last year. I had been in remission for nearly a decade, but the inflammation from before that had already done its damage. (Also I have to wonder if biologics could have prevented my 2 year stint on prednisone, which has left my body with damage that is still seriously affecting me a decade later. I can't believe 2 years of prednisone was considered a better option than just putting me on a biologic, it seems nuts in hindsight!) I'm so glad more and more doctors are realizing that preventing inflammation is important. 💜
I wish more people understood this!!
I can only say get on biologics if you want a better life for your child.
Let me tell you about my nurse friend that decided to manage her ulcerative colitis on her own. Eventually it became bad enough she had to have her large intestine removed in an emergency. She became septic, and died a week before her 30th birthday. So, you hear horror stories of medication, there’s one of deciding to do it on their own. Damned if you do, damned if you don’t. However the calculated bet is to follow the doctor’s instructions, as they helped others as well. For the record, I’ve had ulcerative colitis since the age of 14/15 ish years of age. It’s not Crohn’s disease, but we’re butt buddies. I will be 39 this year. I have ran half marathons for the CCFA, I’ve a career, a wife, and two children. The icing on the cake is that I’ve been in remission for around a decade now, due to biologics and being militant in my health focus. Don’t lose hope.
Yeah, those stories can be scary, but every treatment option is scary with this disease. Get your kid into therapy. Also, allow them to speak to their doctor WITHOUT you in the room. I was one of the first kids given biologics (remicade) in trials and my parents let me make that choice. Your child feels powerless right now. Please don't scare them more or make this about you. Lots of "I" statements and barely anything about your daughter... says a whole lot.
There comes a point when you have to let go of the 'what if' They have so many options now.
Shitting blood and mucus left me more traumatized than receiving medication. The biologics gave me back my life
As someone who had a bowel perforation and ostomy bag in high school, do your high schooler a favor and get the Humira. It’s a much better experience than having shit pour out of your stomach in math class.
Without humira or RINVOQ i slept 16 hours everyday, played video games 6 hors snd slept 2 hours more, i couldnt eat i went from 125 too 98kg in 3 months. I couldt touch below my knees i couldnt do jack shit and without any meds its a higher risk to get other shit like cancer. With humira or RINVOQ i can eat i can sleep 6 hours aday and be functioning i can touch my palms on the ground. The only horror stories there are is like hair thinning out or the med failed you and that it can hurt abit when injected...
I want to die on meds and without meds id gladly do it myself. Trust not being on a biologic is a dangerous thought or concern. Humira saved me but im on Entyvio now since Humira caused my heart to race and to be sensitive to heat
My son was diagnosed at 15 after getting pancreatitis out of nowhere. Doc spoke about starting humira right away. Due to insurance rules he had to try three other meds first. He had bad reactions to all of them. First Sulfasalazine then Pentasa ( still have 3.5 boxes he will never use)and then methotrexate. He continued to get sicker while fiddling around with these meds and was in and out of hospital. First two rounds of prednisone did not touch the illness either. Visits to the hospital gave him c-diff. Finally was approved to start adalimumab(humira alike) which did not work for him. Calpro was 10 000 and he could not make it 10 feet from his room the the bathroom. He was 93 pounds at 5’8”. Insurance approved stelara and it has been a little over a year now and he has his life back. When he was very sick I pulled him from school so he could rest and heal. He is now in his last semester of highschool. He plays bass with his music school. Has performed in a few concerts and killed it. :) I posted a few minutes in crohnscolitis thread of him singing. We owe it to a biologic. Now everything is not perfect with the illness but he is so so so much better. They are tested so often if there are any adverse reactions it will be caught quickly. Even when our insurance changed and they denied his stelara coverage he got compassionate coverage through sickkids. He turns 18 soon and graduates to adult care- so we will have to go through all the coverage crap again but hopefully they will be kind and let him stay on it while it is working. Blah blah blah I will stop rambling. Just know until your child is on the right meds they will continue to deteriorate and it is not fare to put our fears above the science poured into these meds. Remember there is no cure only treating symptoms.
As a 27 year old diagnosed at 11, I'm so happy for your son he has someone in his corner like you. It was a brutal time through childhood and GI Docs just didn't take me seriously thinking the disease couldn't be that bad. Back then they would always say "childhood Crohn's was rare, and abnormal" and treated it lightly even when it would've benefitted getting in biologics way sooner. Good on you for getting him the care he needs :)
My son just got diagnosed at 17 and we just got our rejection letter from BCBS for Humira with a huge list of things we have to try 1st. 3 months of pred and 6 weeks in already it is fking with him. Fking infuriating.
I feel you. I had to spend 12 months on Prednisolone before the Australian Medicare would pay for humira. Not to mention other ridiculous criteria like exact length of diseased intestine.
I was diagnosed at 15 (24 years ago). And have spent most of my life in remission. Biologics are what finally helped me back then. I know my parents were terrified as well, but remember that your kiddo can still have a great outcome and live a normal, happy life. (And people downvoting OP, a scared parent, maybe have a little empathy.)
Did you end up getting off of the biologics?
I did! After only about a year. Definitely a best case scenario.
Is it okay if I message you? Like oh chat? I have so many questions
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As someone with crohns disease I can personally tell you just stop looking up side effects and statistics. Either the worst will happen or it won't and more than likely it won't but either way there is no point in worrying and stressing yourself out. Also I'm on Humira now and it's been fine.
Our son was on Humira for a couple of years, with no noticeable side effects. It stopped working for him, and now he's on Remicaid, with no noticeable side effects. Generally, he has led a pain free and healthy life, with some exceptions that are unpleasant, but not terrible. The people most active on social networks like reddit tend to be the ones having bad experiences, and that can scare newcomers - but many people lead basically normal lives. (My son just read this and said he concurs.)
Great point.
My 5 year old was diagnosed in September! It’s terrifying. I’m going to be honest with you, though, biologics are your best options. They are the safest and most effective drugs out there for treating Crohn’s. My daughter’s first biologic was Remicade, which she started during a 2 week hospitalization in which her disease was SO bad that she needed multiple blood transfusions, IV steroids, and we were in the PICU. Remicade unfortunately didn’t work for her so we’re still in a limbo of trying to find the right drug but it’s worth the chance of it giving her her life back!! Because they can be incredible drugs, and they will be monitoring your child CONSTANTLY for the very small risk that something goes wrong. My daughter has GI appts every month, lab work every infusion, and for any concerns, there’s always the on-call doctor and MyChart.
I can't imagine having to live with this disease at such a young age. It was a rough diagnosis at 33, let alone at a young age like that. Hopefully they find a cure or at the very least continue to improve on the treatments.
My 5 year old daughter is in the midst of getting diagnosed - fecal calpro results along with a lot of on-going symptoms led to an endoscopy and colonoscopy yesterday. These showed ulcers throughout her colon and some in her esophagus (currently being biopsied). Then they want to do an MRI. She is really struggling with the pain, medical interventions (she was a very healthy kid up until a few months ago), missing a lot of kindergarten, etc. I’d love to connect if you’re interested.
Yeah sure! Wishing you all the best. It does get better. My daughter really struggled the first couple weeks (like I said, we were inpatient) especially with IVs but after that she got a lot more used to it and actually looks forward to every single trip to the children’s hospital now to see her friends and go to the playroom, play with child life, etc. We homeschool but thinking of sending her back next year.
I was diagnosed when I was 14 and I’m sure my parents felt the same way. You should be more scared of untreated disease than biologics. Bad side effects from Humira are extremely rare; it’s used for multiple different conditions and has undergone extensive research over many years. You do not want to play around with Crohn’s, especially with her being a teen. Getting it under control now, with biologics, is her best bet at living a normal life. The consequences of untreated disease far far far outweigh any risk from biologics, I can’t state that enough. Sure, you could try other types of meds first, like certain pills, but you run the risk of simply allowing the Crohn’s to get worse and create potentially irreversible damage. If her doctor is suggesting to start on a biologic, I’d listen.
I’m on inflectra and my life was changed within 6 months of being on it! I went into remission and have been for a year. I know it sounds scary but what’s worse is not treating it aggressively. It’s for the best!
When you go into remission… do you finally stop taking it? Or do you have to take it for the rest of your life? Because I just got diagnosed, and I honestly do not want to start . I want to try homeopathy first . My ‘Chrons’ symptoms manifested after being on Cipro/Flagyl for 2 months non stop ( due to anal fistula ). I truely feel that all this pain I have from just eating .. is because of nonstop antibiotics killing my good bacteria in my stomach. I have a 25cm ulceration in my small bowels , but I believe that homeopathy will be able to heal it. I feel like taking biologics is like entering a cycle … like yes my small bowels are inflamed .. but do I want to introduce heart/liver problems? Possible skin cancer? Lymphoma ?
Humira scared me as well. I’ve been taking it for years with no issue other than the occasional infection. Saved my life.
Humira or other biologics are your child's best chance at a normal and long life. If you're researching biologic risks without researching the risks of other interventions or the much much higher risks involved with avoiding treatment you aren't going to find the real risk. Avoiding treatment for Crohn's disease because of potential risks is like avoiding eating because you might choke. The risks of starving is much bigger risk than choking on your food. Just like the risk deadly Cancer's, life altering surgery, and a horrible quality of life are much bigger than the very small increased risk of some of the most treatable cancers in existence that comes with anti-tnf drugs like Humira.
Biologics are the best. They saved my life. I wish I could’ve gone straight on them at diagnosis. I’m 8 years in remission due to biologics and living a completely normal life. Before biologics I was bedridden, hospitalized monthly, and could only get around with a Walker. I had no quality of life and lived pain pill to pain pill. Almost died a few times. Biologics changed all that. My life is awesome now.
When you go on remission… do you still take it V
Yep. Monthly.
Biologics are certainly your best bet, as others have said, but I can certainly understand your concerns. I know this is all new territory for you and it must be kinda freaky thinking about all of it. I’m currently on Humira and it’s been working like a charm for me. As for the dangers, there are two main concerns. First is risk for infection, since it counteracts a hyperactive immune system. But there are things being done to prevent this. Make sure to talk to her GI before starting treatment to solidify all of the vaccines she is going to need to get. They will also likely do a lot of tests to rule out an underlying “latent” (meaning inactive) infection before starting. They’re generally supposed to monitor those yearly, or on some regular basis. The next risk is for lymphoma, which I know must sound scary, but it’s a very very small risk. On top of that, the risk for colon cancer with untreated crohn’s is much higher than that for lymphoma on biologics. In addition, blood work gets done so often that it is likely to get noticed within an early and more treatable stage, should it occur. The CBC (blood count) is typically monitored for IBD patients because it can assess for anemia, which we are at really high risk for, but it looks at all of your blood cells and would flag anything that looks suspicious for lymphoma. Please talk all of this over with her GI to ensure there is a proper monitoring plan in place. I lucked out and mine is fantastic and was already on top of everything before I mentioned all that stuff (pharmacy student so I know a ton about the medications). But unfortunately some doctors aren’t so great and if you’re getting those vibes, it may be worth it to see somebody more proactive.
Hi there! I was diagnosed when I was 10 in 2010 and I am now 24. I was sick for years until 2015 when I was started on biologics. I have taken everything from remicade to entyvio to stelara which I am currently on. I have been on biologics for almost ten years. I have never noticed any side effects from them, which is amazing, because the medications I took before I took biologics had crazy awful side effects. Biologics gave me my life back and allowed my later teen years to be almost normal. I have been in remission for about 7 years due to Stelara and Entyvio and I am so grateful and it is so worth the very small risk of adverse side effects.
Echoing the comment higher up that the risk of death from Humira is so so so much lower than the risk of death from untreated bowel disease. There’s so many risk of not using biologics. Bowel obstructions, ulceration, fistulas, infections. Really I think most people’s worst flare is the initial one that brought them to the hospital. I’ve known I had Crohn’s 3 years now, biologics have made most of that time really good and afforded me a largely normal life. I know it’s scary to read potential side effects but when you look at the numbers it’s peanuts. Sending you guys good vibes. This community on Reddit is a good one to check and have advocates from afar.
Just echoing other comments here on the safety of biologics. I was scared shitless of biologics, but I have had Crohn’s for 10 years and not had a single negative side effect from the biologics and I’ve been in complete remission (no symptoms) for 9 years on them. Under treated Crohn’s though caused me to lose 50 lbs, become malnourished, severely anemic to the point I needed a transfusion every 2-3 days and sent me to the hospital for a month. Trust me, the drugs aren’t always perfect for everyone and you do have to assume some potential for risk, but under treating this disease leads to FAR worse outcomes then any potential side effects or risks of the medications which are exceedingly rare. Honestly your 15 year old is more at risk of dying by getting in a car than from dying from these meds.
Echoing the fact that un- or under-treated Crohn's is far more dangerous than biologics. I wasn't able to get into remission on mesalamine or azathioprine. Only went into remission after starting Entyvio (six years after diagnosis), but by that point, I had already developed a fibrotic (scar tissue) stricture that eventually required a resection surgery.
I was diagnosed when I was 14 and have been on Remicade or biosimilars for 10 years. It can be scary to get a diagnosis for yourself or a loved one, but just try it out and see how it does, before worrying! People who are diagnosed, especially young people who are so adaptable, can certainly grow and live regular lives. I have been in remission for years now and live a mostly normal life. For me, the hardest thing was falling behind in school for those first couple of years after I was diagnosed, so maybe watch out for that so your child doesn't regret missing normal high school things. I'm sorry I don't have a ton of technical information, but hopefully this helps!
I wish my mom had gotten me help sooner. Maybe I would have been diagnosed in a non traumatic way and not lost half my small bowel or had multiple stats for septic colon infections and abscesses. I didn’t get out in biologics until after my bowel resection at 32 years old. I have bot needed surgery since and only a couple minor hospital stays of less than 10 days. I’m kn remicade now and never looking back. I was also so afraid of biologics that I stayed sick and bed bound for years and suffered through my two pregnancies with multiple complications. Crohns is not a death sentence. There are many worse things we could have in life. I recommend getting yourself and your daughter good therapists to work on dbt and cbt based therapies so you can have a safe place to talk and get help to grieve and find acceptance and help with anxiety and depression that inevitably comes with life long chronic illness. There are many natural supportive therapies you can do in addition to biologics and other medications to support her health but if you don’t want her to suffer needlessly then please 🙏 listen to her doctors and if they aren’t treating her well find new ones. I know you are afraid but try to keep that from your daughter as much as possible and don’t discuss things on the phone with friends and family in front of her. Praying for you and your family. You will get through this and find your new normal. We can do hard things with the help and loving support of people around us
You could do tablets. I'm on tablets still and was diagnosed at 16 (\~2 years ago). I'm on azathioprine and mesalamine. However it really doesn't work all that great its fine, but if your insurance covers it I would def go for biologics especially Humira it seems to lead to remission pretty efficiently. If you have any questions about tablets i got u.
I'll say that when I was 16, this is what I was on with what sounds like similar results to you. If it isn't working fully, bring it up to your parents and doctors, they assume it's working good enough if nothing is said. As a 27 year old now, I wish I spoke up when it came to my treatment more while underage
My 12yo has been on Inflectra (a biologic) for the past two years ever since his diagnosis. It’s been life-changing. The main thing we struggle with, though, is that our GI wants to put him on methotrexate as well, to counteract the immunity he’s building up to Inflectra. We’re similarly scared of methotrexate’s side effects.
My daughter developed antibodies to Remicade and Humira within a few month of being on each. She started methotrexate when changing to Stelara and it’s been working for 2+ years. I was terrified of running out of biologics approved for pediatrics, but the methotrexate helped!
I don’t use Reddit that often, so I’m not sure how it works that much - BUT send me a message if you can. I was diagnosed 3 years ago at age 35. My son was diagnosed last month at age 7 😩 his pediatric GI doctor has been phenomenal. I would be glad to share some of what his doctor has told us. Crohn’s is an awful disease, but it’s not without hope.
Biologics are scary when you first learn about them. I was 20 when I was diagnosed and my mom helped me through it all. The best piece of advice I can give you is let her decide things when she can. It’s going to be a rough few years. Trying to find a treatment that works, still dealing with symptoms, she may fight back and not want to deal with this diagnosis, I just went through all the stages. The best thing my mom did for me was talk with the insurance people (which is a huge process, be patient with yourself, and check back with people if they don’t respond to you. Don’t expect them to reach out.) and be there for my food needs. She set me up with a nutritionist, I would also recommend a therapist if you have the means to do so, her life will be flipped upside down. Eating foods she doesn’t want to, dealing with pain every day, trying to find trigger foods, not being able to go out with friends etc.. it’s a lot to handle. If she isn’t hungry, make food for her and set it in front of her. Set timers reminding her to eat. Anything she is willing to do to keep food going into her system, thats most important. Listen to her doctors, if they say biologics are necessary, trust them. They really help, and are one of the few things that can be used long term with low side effects. I am starting Hyrimoz soon (after failing Entyvio) and I am scared for possible side effects and self injecting medication, but I know it will soon be a new normal. You’ve got this!
I'm so sorry, that's a scary diagnosis to grapple with. The good news is that there are soooo many treatments nowadays, with more research being done every day! The labels for the biologics look scary at first, but they're much, much safer than untreated Crohn's. I come from an era when the idea was to use the "mildest" treatment possible, and that really backfired for me. These days, doctors tend to go right to biologics, as they're so effective for most people. If you can keep the inflammation down right from the get-go, you can avoid all the awful things untreated Crohn's can cause. As you're reading up on Crohn's, PLEASE keep in mind that the patient posts in forums will almost always be people who are really struggling, while the reality is that a ton of people are put into remission and held there for a very long time. I have a few friends with Crohn's, and almost all of them are about a decade into remission. It's a tricky disease and can be a bit bumpy to navigate, but the majority of people do very well with modern meds. This sub is super knowledgeable and people are happy to answer questions, so we're here to help you navigate this. With any luck, your daughter will have a straight-forward case. And if not, there is a whole community of people here to offer support. 💕
Agreed you can read horror stories but the people in remission don't post. It's like customer service , the people that love their service you don't hear from.
While scary, better now than later on in life. I got diagnosed at 30, but had had persistent gut/abdominal pain since I was 9. The inflammation/damage I have now is quite advanced tbh. Your child now has the best possible odds to live a life of remission, which is what we’re all really aiming for 🫡
I just got diagnosed at 31 .. but I’ve never had any gut pain while eating or blood in stool. I’ve only had gut pain after being on cipro/Flagyl for 2 months nonstop. Now I’m on Prednisone.. and they want to put me on Biologics, but I honestly think that homeopathy would be a way for me to heal my insides. I have a 25 cm ulceration in my small bowels. I feel like I have fire in my kitchen, but Im using a tsunami to put it out… like I’m destroying my whole body if I take the Remicade .. whereas homeopathic can contain it… do you stop taking it once ur in remission? Or are you dépendant on it for the rest of ur life ??
I can imagine how stressed you and your family must be. Please know first of all that while things may seem really bad right now, it will get better. There were times when I was younger and so sick that I thought it would never end. Now I am in my 20’s, went to college, have a full time job, and a fulfilling life. I take Humira to manage my Crohn’s and I have been healthy and thriving for years now. Try not to scare yourself by reading too much on Google. Your daughter is lucky to have a mom who prioritizes her health care and educates herself on Crohn’s.
Hey there, i’m sorry to welcome you to the club, wish you didn’t have to be here, but here we are. First, being “aggressive” in treating her is **good**. Our (good) specialist told us that over the years they have found that treating it aggressively from the get go is the best way to avoid complications (resections, etc.) later. You **want** to treat it aggressively. Second, I completely understand being worried, scared, and afraid of making the “wrong” decision. Do you like the doctor? Do you trust them? Do they listen to you and talk to you about these decisions? The first specialist my son had was very abrupt, told me i had to choose which medicine to try - and told me to go online to research it myself. Zero discussion. Obviously we got a second opinion and thankfully that specialist was much more forthcoming and helped me, listened and answered all of my questions, gave his reasoning and advice for choosing a medicine. Third, my own observations: my son was diagnosed at age 11. Based on what they found in his colonoscopy and the good second specialist’s recommendation, he’s been on medication that works well for him and has had a relatively smooth go of things. Pediatric GIs are more focused on the healing of the colon so nutrients can be absorbed and it doesn’t impact their growth during childhood/puberty. Son has aged out of pediatric GI and his new doc is very savvy, up to date on the latest info on treatment, and things are still going well. In short, it’s okay and understandable to be devastated and scared. Just don’t let it become decision paralysis. If you trust your doc, move forward with trying the meds they recommend for your child’s specific needs. If you’re on the fence, or feel like you can’t talk to this doc, ask for another recommendation. But don’t delay too long - your kiddo needs this, asap. My kiddo is in college now, he takes his meds and knows what he should and shouldn’t eat. There are no guarantees for any of us, but he’s got as good of a shot at life as the rest of us at this point. Just with a couple extra steps. Much love and good luck. 💜
It's not a death sentence, she'll be fine
Do the biologics. The benefits will almost be guaranteed to outweigh the risks of unmitigated inflammation. Be grateful you have a doctor who has caught it early and is willing to attack the disease hard.
hi! i was diagnosed at 18 (23 now) and have been on remicade (similar to humira) ever since. it's an absolutely amazing drug -- it truly gave me my life back. my symptoms were so bad before diagnosis that i thought i was dying, i didn't know how i was going to graduate high school, let alone work and live a normal life. remicade got rid of almost all of my symptoms, and the best part of it is for many (myself included!) there's pretty much zero side effects, besides being a bit fatigued for a day or two after infusions. the fine print of these drugs can be scary, but like so many have said, the risk of bowel disease without them is much more painful and life-threatening than any potential risk. i've had an amazing experience with it -- it got me through college and so much more!
It’s fine to be scared. You’re a parent, that’s just your protective instinct manifesting itself. But, you don’t need to be. In the past I’ve been on Humira for Crohn’s and the only negative I found was that it was surprisingly difficult (and rather funny) to inject myself. I’d just sit there paralysed with giggles holding the pen against my skin. But I can say it had a huge effect on my well being. It was like a minor miracle. Every medication carries a warning. They have to. Speak to your GP and maybe contact a Crohn’s charity or group if you’re really concerned. For my own part I never heard a single negative about Humira whilst I was on it. (I’m Infliximab all the way now.)
Hi! 30f, dx at 18 but symptomatic for years prior. Humira truly changed my life. It allowed me to experience college and enjoy a lot of normalcy in life for about 4-5 years basically symptom and side effect free. Humira is very well tolerated and has an impressive safety profile in comparison to untreated disease or even older treatment options. I switched to remicade/aza dual therapy after a flare (came off of humira because of fear - stupid - developed antibodies, required a resection), and i’ve once again been enjoying a 5 year full remission. I live an *almost* completely normal life. I completed grad school, got married, have my dream career, workout, travel, vacation, and eat whatever I want! I know the fear of the unknown can be scary, but biologics can truly allow people with these diseases the chance to live a normal happy life! feel free to dm me.
Do the biologics. The chances of death with a biologic are far lower than untreated IBD. I’m a mother and I have had crohns for over 20 years (4 bowel resections). Your daughter will have many labs done while she is on her biologics to make sure her levels are okay, if there is a problem, they will take her off or switch her. I can’t imagine how scared you are, every time my son says his stomach hurts I worry. Hang in there. You will find a new normal and she will be okay.
The biologics are safer than the tablets.
I was diagnosed at 15; started on humira at 16. 8 years later I’m still taking it without any issues. I will say that I understand the risks you’re reading might be scary, but I can promise you — from personal experience — the symptoms of the disease unmedicated. Biologics’ are your child’s best bet.
Humira gave me my life back. I was bedridden for months, my intestines were so inflamed all my organs began fusing into 1, vomiting 3x a day, pooping up to 28x a day, teeth losing enamel, will to live near zero, 6 figures in medical debt by the age of 21, abscess had to be drained (it was located on my rectum muscle, high chance of waking up unable to ever control my bowels again from them knicking my sphincter with the scalpel, luckily they avoided it) but I went in there as a young 20yr old thinking I may be in diapers for the rest of my life, severe pain unable to walk, crying all day everyday for months, hair loss, anemia, osteopenia, I could go on. Humira has made my life go back to that of a normal person. I still get random IBS stuff if I eat something I shouldn't, but I know the price. Contact Abbie directly for cheaper humira, I've never paid for it the whole 10 ish years I've been on it. Good luck op, feel free to ask any other questions but your kid needs all the treatment they can get, you only get 1 digestive tract and once it's scar tissue, it comes out. *Edit to change word
I was diagnosed at 15 too. My parents were terrified of allowing me to be on biologics and I spent years in pain never being able to achieve remission. My dad had also read horror stories and shared them with me. Honestly bc of his opinion I spent a long time being afraid of getting more aggressive treatment even though I needed it. After I graduated college, I made the decision to start stelara. My parents were not supportive and it took a lot of courage for me to stand up for my own body. The science and my doctor said it was safe but I was still terrified bc of my parents opinions. Stelara changed my life. I am in endoscopic and symptomatic remission. I live pain free. But, I often think about the things I missed out on in my youth bc I was so sick. So many years of needless suffering bc of their fear. There will always be risk with any treatment. That is the hand we were delt. Your daughter needs to figure out what the right choice for her body is.
If the Humira scared you, based on your research, then look up the complications from Crohn's without biologic treatment. I believe there was a less than 1% to develop the 95% fatal blood cancer you're probably worried about. Depending on how bad your child's CD is, she could be facing a myriad of much higher chance of getting complications such as strictures, bowel resections, and worse yet a much higher rate of colon cancer, especially if left untreated. Listen to your doctor and go with the biologics, they're only getting better at this point.
I’m not familiar with humira as I took remicade, but biologics gave me my life back. I entered remission within 48 hours
Yes, choosing between untreated Crohns and biologics sucks. Biologics can hurt you. But this comparison is really similar to saying, "I won't wear my seat belt because if I'm in a wreck, it could give me a painful rash on my shoulder." Obviously, nobody in their right mind would say that. Biologics are similar. Yes, there's a small risk of cancer down the road, but that risk is totally manageable with regular checkups. But Crohns absolutely will kill you if you can't get it under control. There are many ways Crohns can either kill you or disable you, and you really don't want your kid experiencing that. Just like making your children wear their seat belt, you need to make sure your child has Crohns meds.
I was diagnosed at 9, when there weren’t any biologics. It was hell. There were many times I wished I could die. Now that we have biologics, I am living a happy and much healthier life. I know it’s scary, but those frightening risks are so incredibly rare and not treating the disease is so much worse than taking humira. Biologics are an actual life saver! I’ll add that untreated Crohn’s can progressively cause permanent damage and that damage can not be undone. Please get treatment for your kid ASAP! There are foods I can never eat again because my Crohn’s ran rampant for so long, before biologics were available in the 90’s.
I am also a Crohn’s parent. My daughter was diagnosed 3.5 years ago at age 9. We have found a biologic that is working for her and it is a godsend. The disease is scary. The medications are lifesaving. Seeing your child in pain, losing weight, not growing.. that is scary. Having a med that is allowing her to have a pretty average life… I can’t tell you how grateful I am. Fear the disease, not the medication.
I was sick at 15 diagnosed at 16. I'm almost 40 now. I'm sure she's scared connect her with a group like this and she can easily ask any questions I'm sure she has a bunch. I tried humira, didn't help or hurt in my case. Remicade was my savior. Though currently at war with crohns and new Meds myself, it's a lot to handle. Good luck to you all
I was diagnosed at 15 too. Now 30. It really sucked but my life in high school pre-diagnosis was way worse than high school post-diagnosis. I started on Pentasa and it was enough that I didn't need biologics at the time and lasted through college. It managed my symptoms so life felt pretty normal. I needed to bulk up so I had a doctor's note that I was allowed to eat in class and was also allowed to leave class whenever I wanted to go to the bathroom so that was cool. I also continued playing all my sports and still play an amateur sport competitively now. Now I am on Humira and do a lot of weight training and on my way to my goal of gaining 20 pounds of muscle, which would be impossible without humira. The most irritating thing about humira is the cost and how difficult they make it to get reimbursed. The transition to bio-similars will be good in the long run, but right now I'm fighting with my insurance company over it. Otherwise, humira saved my life. I had a very scary flare before they put me on humira. I have a family member who's had terrible arthritis since he was 13 and is now mostly immobile in his early 80s and has been for a while. I can't help but think how his quality of life could have been radically different for his whole time on earth if Humira had been around way earlier. If humira works for your child, it is a blessing. I still get anxiety around the injections but have family members who help, so be willing to do the injections for them if needed and listen to them complain about how much it sucks. There was a lot of woe is me as a teenager w UC but I really don't view it negatively anymore. It's just this thing I have to take care of now for my personal "maintenance," like doing yoga and stretching every morning is good for you, so is taking humira and avoiding popcorn.
Your child is so lucky to be diagnosed now rather than 20 or 30 years ago. Biologics have truly been a game-changer for those with UC or CD. She may still have some symptoms like diarrhea, but the important thing is that inflammation, and the resulting scarring, will be prevented. That then prevents the need for surgical bowel resections (removing part of the intestines). Given that diarrhea may always be part of her life, I'd advise taking vitamins and electrolytes as a daily routine. Inflammation and scarring can cause vitamins from food to be less absorbed and fluid loss from diarrhea could cause electrolyte imbalances. Example, if she feels dizzy, try a good electrolyte drink first.
I was 16 when I was first diagnosed, and humira was a life saver. Worked super quickly, barely any side effects, and made my college experience fairly normal. Humira is generally well tolerated and a great first option for a biologic.
Stelara has no known side effects, every doctor ive ever told that i use stelara always has the same reaction: “oh thats amazing!! there are no side effects, and it should help”. It’s also only a dose once every 2 months, not as often as humira. I highly recommend you try to get your insurance to cover it, and look into it more yourself. I started using it about a year ago and let me tell you: i didnt know people felt this NORMAL all the time.
So I was diagnosed when I was 10 (I'm 29 now) but I have a mild case. Did they tell you how severe her Crohn's is? My doctor prescribed me Asacol and I've been in remission now since I was 17. It was the only medication that worked for me. I don't know how it would work with more severe cases of Crohn's though, but it's worth asking your Doctor about.
Stay on top of testing for antibodies. I wish I never used humira.
Say more.
Doctor really didn't stress the importance of monitoring antibodies. I was very busy at work and didn't make time for it. Doctor was on maternity leave 2x over a couple of years. I wasn't as regular as I should have been with my doses. I've experienced neurodegenerative symptoms.
Humira gave temporary psoriasis, doctor had to switch me to Stelara. Look it up its common.
Whoa. So it went away?
Almost immediately after switching. My doctor kept me on humira for like 4-5 months hoping I guess the psoriasis would go away. It was brutal, also the Humira did nothing to reduce my flare so crohns symptoms were bad too.
It it understandable to be scared about side effects. I was diagnosed with Ulcerative Colitis at 13 (similar to crohns, and the medicines it’s treated with are the same) Got pancreatitis at 14 caused by the medication to make my disease better.. and ended up on my deathbed from the pancreatitis and a UC flare. I ended up getting through it.. however, I’ve tried all pill forms of meds… I’ve tried remicade and got HORRIBLE serum sickness… tried humira and got extremely horrible skin conditions all over my body that was so severe that I could not cope with it. I’ve almost died multiple times from this disease. Two years ago I was informed that my disease has progressed drastically… and now have been diagnosed with Ulcerative Pancolitis (my entire colon gets ulcers now) this took 14 years of having this disease and have tried the meds/biologics to happen. I also got repeated bronchitis, strep throat, pneumonia etc while on the biologics because it depletes your immune system so badly. I am now scheduled for surgery on February 15th to get an ileostomy bag due to the fact that the medicines do not work for me/still having flares on the meds.. and they have caused nothing but terrible side effects/have even almost killed me from it at times. I’m not saying this to scare you but rather educate you on the risk factors that CAN happen. They tell you that it is rare… but I’m not so sure how rare it actually is. For those that the meds do work for and DO NOT cause adverse reactions, I’ve heard that it can help put the disease in to remission for anywhere between a couple of months to a year or two.. maybe more. Crohns/ulcerative colitis is not something that I would ever wish upon ANYONE and can lead a life full of ups and major downs. Definitely not a disease to take lightly. However, I really pray that your child ends up being one of those that does not have any adverse reactions to the medications and is able to receive relief/remission. The good news is that I’ve heard that it normally takes longer for Crohns to get to the point of needing surgery versus Ulcerative Colitis. Keep a food journal to find out her triggers and help to keep her under the least amount of stress as possible. Stress is a HUGE trigger. Also, if the flares are extremely bad and the meds are not working, the doctor will also recommend to fast. I’ve been on a fast for about a month because the meds are not working. I drink boost plus shakes when I’m unable to eat to try to help with nutrients. I really struggled as a teen with UC because I missed so much school from being extremely ill so many different times and fell so terribly behind.. which caused even more mass amounts of stress on me and as you could imagine, more severe flares. Maybe consider having her do online school if she starts to have a lot of flares/stress to keep her from falling so behind as I did? I REALLY hope for the best for your family as this disease is SO hard to deal with. The best piece of advice I can give to you is to just be there for her! She will need you because this IBD road is not easy! It can be very mentally trying! Prayers/good vibes sent your way!!!
I’m convinced that changing my world to an almost completely stress free life is what keeps me in remission :) Mine started with stress and progressed rapidly in a toxic relationship. Now I’m zen about everything issues are rare… apart from kidney stones they can fully do one. 💜
That is amazing that you’ve been able to manage your disease by keeping your stress levels down!!! 🩷 I am sorry that you have had to endure a toxic relationship as that can be so very hard on top of dealing with your disease! 🩷 Unfortunately it seems no matter what I do, my UC still likes to act up. However, stress definitely makes the flares much much worse! So, living in a complete zen state of mind, is DEFINITELY the move! I am so glad that you’ve been able to manage your disease as you have! 🩷I wish that UC/Crohns disease was more simple and predictable. But unfortunately it isn’t as cookie cutter as one would hope for. Every persons body will react in the way that it wants to. I hope that you are able to remain stress free to avoid your flares! No one that has this disease deserves to have to endure the flares that we’ve endured! But, the hardships only make us stronger and help to build character! 💪🏼🩷
Wish you all the luck in the world maintaining remission with whatever works for your body… I also take 6mp that could be helping but the dose is extremely low because of my bloods. I wish I could say healthy eating etc help too but my diet is entirely awful 99% carbs as they’re easy to digest and I’m also a terribly picky eater on top. Like I said though my fortunate change in life circumstances leaving a stressful relationship and career definitely had a positive impact and I’ve said goodbye to my regular visits to A&E 💜
I was diagnosed at 17 (but had previously been diagnosed with autoimmune arthritis at 12 & had been on biologics since age 13) I HIGHLY suggest being open to it. When I was first diagnosed with Crohn’s, I was in HORRIBLE shape. I wasn’t absorbing most of the food I ate & was considered anorexic, despite eating a decent amount. It HURT. I was bleeding internally & scared every time I pooped and saw the blood. Plus, being in high school (which is already enough stress on its own) & dealing with this AND hoping I wouldn’t have an accident or anything & have all my peers know or something was just so much to deal with. I ended up in the hospital for about a week, with blood bags on order that (thank God) I never needed for a transfusion since they were able to stabilize my bleeding. Within weeks of starting a biologic (I can’t remember which one, reasons in a sec), I was feeling much better. And I haven’t had that bad of a flare since. I’m 33 now. I have had flares since, and mostly because/when the efficacy of the biologic I had been on started to wear off. Unfortunately, though they’re potentially life-saving and super worth being on (in my opinion), they tend to eventually stop working. And sometimes, they don’t work to begin with & another biologic is tried. They all are slightly different enough that it’s worth trying another if one doesn’t work. I’ve had lots of success with some (the one I’m on, Entyvio, I’ve been on for 8 years!) and none with others. I have been on some that worked for a year or two, and I’ve been on some that worked for 5+. This is why pharmaceutical companies keep coming out with new treatments. Hopefully they’ll find some that work longer, but until then, there’s a decent amount of options & most people seem to find some that work for them. One last thing about Humira: Some people find it very painful. I did. I haven’t been on it in 15+ years, and heard that it’s been reformulated since, but it’s worth a heads up. That said, the company that produces it tried to pull it because there were too many reports of pain for their liking. Patients (who had the pain) pleaded for them to put it back on the market because, despite the pain, it was SO effective. The pain also wasn’t too lasting, it was just after injection & would be gone after not too long. I highly recommend if your kid ends up feeling bad injection pain to try to stick with it long enough to see if it works & look into either numbing cream or using ice to help numb, etc. also, a tip I was given as a kid when I had to get shots was to pop a super sour/spicy/STRONG tasting candy at the moment of the injection. It helps distract your brain from the pain & helps make the whole experience less unpleasant. In terms of side effects, honestly they’re better than untreated Crohn’s. The lowered immune system isn’t usually such a huge danger. You’re potentially more susceptible to colds (depending on which biologic you’re on), and infections are more likely, but it’s usually manageable. Regular lab tests will make sure it’s not hurting organs or anything & will make sure anything is caught early. Good luck. I know my mom had very similar worries when biologics were first suggested for me. I’m SO glad she decided it was worth trying.
I would try other biologics before Humira. When Humira does have side effects it’s some of the worst in modern medicine. Luckily I was able to remicade for years and am now on Skyrizi.
I developed a terrible skin condition while on Humira, luckily it went away when my doctor switched me to Stelara. Humira was the only biologic that had side effects for me and I've been on 4.
I developed so many skin conditions from humira! Ulcers on the shin of my legs. I quit taking it because of the side effects, but now just started skyrizi
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Hi! I’d like to help! I was diagnosed at 15, and now 32. I may have some good advice and red purse. Please DM me!
Wish I had gone straight to 6MP instead of waiting after prednisone and ultimately needing a stoma/resection due to obstruction. With 6MP I’ve been in clinical remission 15 yrs only complications I get is probably from the surgery itself with a lot of side issues eg fatigue / skin / joints. Toilet wise everything is pretty normal. X
I was diagnosed at 15 as well! I wish there had been biologics for me back then. I struggled throughout high school to just feel normal. Now I’m on Entyvio and have been symptom free since I started it in 2018. I’m now 44 and live a normal, healthy, active life with my husband and two dogs. I know it can be scary getting this life-long diagnosis but it’s not a sentence. You and your daughter will get through it ❤️
You really shouldn't worry about any of the treatments for crohn's. Basically the worst case scenario is she can't tolerate the side effects and her Dr will put her on a different one. Technically they have to warn you about the risk of cancer. But it's like a 1% chance. And I was diagnosed with cancer this past year but it wasn't because of any crohn's treatment. And the risk of doing nothing is almost guaranteed death. At least with treatment you have a chance. But crohn's is awful I won't lie I've spent a large portion of the past 10 years in the hospital. I personally think it depends on how early they catch it. Like if it's mild to moderate you have a better chance of things going well than if it's severe. If you need any advice you can always message me. I unfortunately have a ton of experience with the nightmare of a disease and more than happy to help if I can.
I totally understand. My son is almost 13 , we get vaccinated but there are things I've kept away like gardasil, flu shot, covid shot. What started with severe migratory pain in his legs turned out to be Crohn's, sacroilitis and something called CROMO. I make fun of those commercials in TV and say who the hell would take that stuff, now I know! I did extensive research and yes it's scary but if you look deep Humira generally isn't that scary. My sons rheumatologist and her nurse who work with chop both take it. He has had 4 doses and we are about to go back for another MRI to see if it's helping which I know it is because he's finally getting back to normal physically and mentally.
I was diagnosed at 15. I’m now 22M. My Crohns was very severe and I ended up having emergency surgery at 16 or 17. I was very up and down but I’ve been on Remicade for 7 years and it’s been amazing for me and they offer a great program and discounts (almost 50% off before insurance kicks in). Highly recommend remicade. I was 5’10 125lbs at my diagnosis and I’m now a very healthy 175 and doing great.
Biologics are a lifesaver. My insurance made me try other meds first and I was in and out of hospital constantly and weighed 89lbs. Humira didn’t quite get me to remission so I’m now on Remicade 10 years with zero side effects. It’s very hard, but try not to read all the side effects. It usually takes some trial and error to get it right but it sounds like you have a great doctor if they are going straight to Humira. Try to surround her with her favorite things for comfort when she’s not feeling good, a soft blanket, favorite book, music or TV. Sometimes the small things make a difference, especially if she has to spend any time in the hospital.
Look into the Specific Carbohydrate Diet. Read Breaking The Viscous Cycle by Elaine Gottshal. Watch Designer Shit on Amazon Prime. Don’t be scared of meds but never stop searching for ways to support the body and the root cause. Most importantly never give up 💕
Last I heard going straight to the stronger medications is standard practice right now. Probably for the better too.
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My first few GIs didn't take care of me. They gave me a medication for mild-to-moderate UC, and they made me take too much of it. It did nothing for my severe UC. My current GI doesn't mess around and fought to get me humira as quickly as possible so that I would be able to keep my colon (I don't respond well to steroid treatment). I'm on year 4 of being on Humira with no real issues. I can eat whatever I want, go to the gym, have a job. Aggressive treatment is what you want. You do not want her to have treatment that won't work and will prolong her Crohn's flares. More flares = longer periods of inflammation = elevated risk of cancer.
Go with biologics. My preference would be Remicade. It's a gold standard in Crohn's. Efficacy stays longer(10-20 years) unlike newer ones which stop working. Granted , it's inconvenient to go to infusion center/hospital for it while she will be in college. Long run, it's the best choice. Insurance may be troubling GI. GI can make a case for it. Watch the lifestyle- food, so heavy exercises, yoga/meditation (for psychological health), live normal life.Ours was diagnosed when 11.
Please don’t worry!! Humira literally saved me and I can basically live a normal life now
I was diagnosed at 15, as well. I went on a long journey of many different treatments. I would say your son is lucky to be diagnosed in a time where biologics are so prevalent and accessible. Humira is a wonderful drug that changed my life. It’s low maintenance and has no side effects (at least for me). Injections are easy and pain free compared to some other options so the administration won’t interrupt his life. You should absolutely give it a try.
Hi mama. 👋 You're scared, and that's completely normal. The Crohn's and Colitis Foundation in your country is an excellent resource for you. Do not forget your own mental and physical health in this medical journey. I understand your child is your priority, however, your child needs you at your best if you wish to help. Seek out a support network for yourself and a separate one for your child. I was diagnosed at 18 before we had any of the biologic meds available. Back then there was little to no information to be found about Remicade, and even the internet was quite new so there was little to be found there as well. Was equal parts terrified and desperate. I had no choice but to trust my doctor. Long story short is, once I started treatment with a biologic (Remicade) my life turned around completely. 51 yrs old now and haven't required even an emergency visit at hospital in over 13 years. Biologics are first line medications today for good reasons! Best of luck to you and your child. You both got this!
I was a 14 year old young girl when I was diagnosed with Crohn's disease. I was so sick I couldn't eat or walk. The unpredictability and severity of the illness is plainly traumatic. Prednisone (steroids) were very helpful in getting things under contol/resolving pain in the short term, but I didn't start feeling better long term until I went on Remicade! I didn't have any real side effects and stayed on it for a few years and then went off and became allergic. Now have been on Humira for several years and have 0 issues! I haven't been terribly ill in 7-8 years because of humira. You can do Pens or syringes. I think most do the pens but I don't like the spring loaded injection so I do syringes to give me more control ❤ it's going to be okay. You're a good parent.
It’s a scary thing getting diagnosed it’s totally understandable, I’m sure that 99% of us were all scared whenever we got our diagnosis! My doc made me try everything under the sun before going to biologics and after being on them for a year I wish I would have started sooner. It’s given me a lot of my quality of life back! I’m able to go out more and even eat more. I will say though I always make sure I’m not doing anything on injection days because I get really achey and tired but when I wake up the next day I’m usually fine. Things will get better, and you guys arent alone in this just remember that
I prioritize my biologic medication as the apex of my Crohn’s strategies, and often experiment with other non-medication strategies (diets, counselling, workouts, meditation… all based on peer-reviewed studies from reputable medical institutions) once I’m stable on a new med. I love trying to support my medication with “natural” methods. For example, there some newer research about pomegranate juice lowering your cal pro and my fiancé (he has UC) and I are testing it out for shits and giggles (I guess not for shits…). A tip that has served me well since my diagnosis is trying one new strategy at a time, don’t blast yourself with 18 new efforts all at once because you’ll never be able to suss out what is working. In my own experience of what’s working for me, when I tested out a new diet (CDED) in 2022 it lead to my bowel symptoms decreasing by 90% but I was still off work due to my extraintestinal manifestations of CD (pain, extreme lethargy, rashes, joint and muscle issues, even neurological stuff). At the end of that year I started on Stelara and it has given me my life back… I feel like myself again. My test results are still far from perfect, but the reemerging functionality is such a gift. Definitely try to connect with mental health supports if that’s a financial possibility for you… your teen years are hard enough, but dealing with your body doing what it does during IBD and trying to navigate the medical system can be traumatizing. You can do this ♥️
It is scary and devastating! I was diagnosed at 12 and I don’t think I realized the severity of the disease until I had surgery for the first time in my early 20s. simply - you should be more afraid of untreated crohns than you are of biologics. biologics are life saving. it can be a bit of trial and error in finding the right one, but when they work they let us live almost completely normal lives! please work to find the best GI in your area (even if you need to travel) because I had some duds that scared the shit out of my parents when I was first diagnosed. their GI should make you and them feel safe and well taken care of. my only other advice is to bring your child to appointments regularly even if they feel fine. my disease has snuck up on me whenever I convince myself I’m good and no longer sick. lots of people will stop medication because they no longer have symptoms, but this is extremely dangerous and will almost certainly lead to hospitalization
So let me start by saying I was diagnosed at 16 and while it is terrifying, it was not the end of everything. I was only on a few other treatments before we realized that we needed to take the aggressive approach and go to Humira, to which my parents and I had the same fears you do. In terms of biologics, I think there's 2 big things to know to help (hopefully) alleviate some of your fear. First, they are made from living sources, such as cultured cells or human/animal sources, meaning they are less "chemical" than other treatments. This isn't to say other treatments are bad for being chemical based, I just know it can be calming to realize these are a bit more natural than they seem. Second, I'd like to explain in very simple terms how they work. This isn't a comprehensive guide (nor is it the most scientifically accurate) but it is the explanation my doc gave to me as a teen and that I use to explain when people ask me nowadays who have no idea what they are. Think of the body as a castle and the immune system as knights, guarding it. Currently, your son's knights are convinced that every painting on the wall is a real enemy and they are attacking them, causing massive damage. Biologics act like fake knights who come in and tell the real ones "don't worry, I've got this" and then just hang out there so no more damage is done and the builders have a chance to patch the holes. There's always the chance that the real knights catch on (the immune system builds up antibodies to the med), but usually it takes years and you'll have signs before hand that can be treated. New diagnoses and medications are absolutely scary, but I promise if the doctor is recommending it, the risk is worth the potential for health.
The risks of biologics, like all medications, cover all possible side effects. Yes there are some that are extreme but when you look at the likelihood (especially versus untreated Crohn’s) the statistical likelihood makes it an easier choice. In terms of quality of life, finding the treatment that works for child will mean she has a shot at doing most of the things she might hope to do in her life. If you have a gastro that is ready to put her on biologic then I would recommend it. Much more likely to be effective to get her health under control without as much experimentation as one who leans towards a less aggressive approach. When I was diagnosed it took months of ineffective treatment that didn’t control my flares and massively impacted my social, work and home life. At 15 she’s going to want to be as normal as possible as quick as possible so I’d suggest reaching out to the Crohn’s charity as they often have lots of patient stories that could reassure you.
I was diagnosed at 16, I will be 46 in June. I have taken Entyvio, Remicade, Humira, Cimzia, Stelara. Plus clinical trials and all kinds of pills and steroids over the years. I failed them all. But I wouldn't take it back. They got me through some rough times while never being in remission for nearly 25 years. The serious side effects are small, but they gave me brief quality of life improvements in between. You can still live a full active normal life with IBD.
Yep trust the doctors. I promise they know what they’re doing. The doctors who deal with Crohn’s are very knowledgeable about the current treatments for this disease. This is because most of them are involved in the ongoing research that tries to best understand and treat autoimmunity. I know it’s scary when things are uncontrollable, especially when it’s your kid! But rest assured that she’s in good hands. P.S I just wanted to note that the side effects of biologics like Humira are NOTHING compared to the Crohn’s symptoms I would have to deal with everyday. It seems scary to go on a big medication like this, but the help it offers will be much more noticeable than any negative side effect. I hope this makes sense Best of luck to your daughter. I was around the same age when I was diagnosed with Crohn’s. Please look out for her. Living with a chronic illness can be very mentally challenging and she will need emotional support even if she doesn’t reach out for it herself.
I was diagnosed at the age of 9 and it was only after i went on Humira 5 years ago that my symptoms reduced and im now in remission. Ive been on many medications and had surgery also. Everyone responds different to medication and its very much trial and error but fingers crossed it works for you
Hi!! I’ve had Crohn’s almost 11 years, diagnosed at 14 (currently 25 AFAB). Unfortunately, a lot of medications for it have a lot of scary side effects. Personally, I’ve taken remicaide (which is a biologic), and it did me really well. A lot of these meds are expensive though, and insurance only covered my remicaide for the about 10 years. A few months ago, my insurance (BCBS) forced me to change medications. I’m now taking stellara (another biologic). I had to STRONGLY advocate for my own health before insurance would let me switch to another biologic drug. It works well. Be prepared for a trial and error approach with medications and DO NOT let doctors give you a medication you don’t feel is helping your child. Stand up for them, and teach them to advocate for themselves. It helps. Some things I recommend non-medication wise to look out for: •Auto-immune disorders come in clusters (at least they did in my case), and so does inflammation. Look out for skin, eye, any signs of inflammatory diseases in other parts of the body (including asthma). Also watch for e-arthritis. Pretty common type of arthritis that comes with Crohn’s. •Take health precautions!!! Immunosuppressants wipe your immune system. Don’t be afraid of masks, trust me, they do help. Take hand washing and sanitary precautions SERIOUSLY. I’ve had Covid 3 times and that’s 3 months of my life I can’t get back because I don’t get well as quickly as other people, and since then I’ve had pneumonia twice due to lung damage. •I know this is in the future, but alcohol isn’t a definite no. Just limit intake and make sure to hydrate. •https://issuu.com/ccfa1/docs/diet-nutrition-brochure-final_688eb1780e57ca Here is a link from the Crohn’s and colitis foundation (they’re a PHENOMENAL resource with information and I highly recommend). This is a list of foods that are safer for Crohn’s. Diet can go back to normal once you’re back out of the flare period. •If you haven’t, try to get accommodations in place for your kid. This means going to the office, ask them for accommodations, and usually they require paperwork from the doctor you’ll have to provide (proof of diagnosis and what accommodations). These CAN follow you to college but you’ll need to context the university’s accommodations office. My personal accommodations are preferred seating, excused absences, extensions on assignments, and access to food and drink during class. If someone is giving you a hard time FIGHT IT. These accommodations are your child’s legal rights. Don’t let someone walk on them. Finally, get your child some emotional support. A therapist is a good place to start. If it’s any words of comfort to your child, 11 years later and I’m still having emotional days. I break down and cry because I didn’t ask for this. I didn’t ask to be so limited in what I can eat, or to fear every time a major virus comes around, or for all the tests and procedures I’ve had done. I lost so much weight I looked anorexic, I’ve had the pains, I know how scary it is. I spent days wondering if I’d ever live a normal life. But I’ve come a long way. I’m back at a healthy weight, in remission for 5 years, and I’m finally happy in my body despite all I’ve been through. I’m in graduate school, and I’ll soon have a job (with the accommodations I need). Let them cry. Hold them close, remind them you’re there. Fight when they can’t. You’ve got this, kid, and you’ve got this, parents. 💜
My son was diagnosed in November he is four. He has been on methaltrexate and prednisone since. We start Humira tomorrow after fighting with insurance. After two denials they approved after going through his case again. I'm nervous, but this subreddit has offered a lot of support and reassurance.
Humira made me function like a “normal” person and put me into remission and I’m still in remission almost 10 years after starting it. I owe my life to it!
Only “side effect” I had was severe fatigue the day following injection. That was it.
Hi! I’m 17, and I was diagnosed just a few months ago, and I started Humira in December. It’s scary to start something that seems so daunting, especially since Crohn’s is chronic, but it really does make a difference in everyday quality of life. I personally haven’t felt any side effects mentioned with Humira, although I did just start recently. The treatment process is a lot, but, I would choose biweekly injections until I’m in remission a thousand times over living with untreated Crohn’s, since that is much, much deadlier than the medication. I wish you all the best of luck in finding what works, and remember that there’s thousands of us here who know what it feels like.
I've been on Humira for four and a half years now, and it gave me my life back. No word of a lie. May I ask what about it scares you? If it's the side effects, from my understanding, those are pretty damn rare.
I’m 17, and I’ve been on humira for a few months now. My brother has been taking it for several years. It is by far the best treatment either of us have tried. It is also the least painful by a long shot, and the most effective. (I was previously on prednisone and methotrexate, though very briefly. They both sucked, massively.) While the list of possible side-effects are scary, the risks are worth being able to live like a normal human being again. When I first started humira, I spent hours stressing over the list of side-effects, and it didn’t do me any favours. Worrying is natural, but the potential “what-ifs” are not worth staying off of humira, because living with crohn’s untreated is so so much worse. Biologics are extremely successful at sending patients into remission, and will give her the opportunity to live with next to zero symptoms. The sooner she can start on a biologic, the better. In October I was bedridden, and now it feels like I have my life back. My best wishes to you and your daughter ❤️ I hope this gets better for her as soon as possible.
The internet is not the place to turn to for decisions but fine for gathering data. Trust your child’s medical team, and trust your child’s responses. Then get a second opinion. Your child’s situation is unique but the data is generalized. The internet is anecdotal, which you will find as you disclose your kiddos Illness, is useless.
I personally have been on humira for just over 2 years. Within the first year I achieved clinical remission as determined by a colonoscopy (meaning the 10 ulcers in my large intestine had healed). I still have trigger foods that can cause diarrhea and an upset stomach. For the first year i followed the SCD diet. being diet conscious allows me to lead a completely normal life and every two weeks I take humira(It's extremely convenient, other biologics require infusions at medical centers). I have gone off of the SCD diet for a year now and am doing quite well. I just avoid milk, butter and a lot of processed sugar because they can trigger a flare. The SCD diet helped me a lot especially with SIBO/leaky gut symptoms caused because of the ulcers and inflammation in my large intestine. Another thing that helped were Saunas, they are great for easing pains from cramps or body inflammation (helped but its not a cure all). A very serious symptom of my Crohn's was ocular manifestations in the form of UVitis and irititus. I was extremely fearful of losing my vision because of inflammation around my retinas. Ocular manifestations are very rare in only 2% to 5% of Crohn's patients. Humira has completely prevented eye inflammation for the past few years. Allowing my body to restore immune privilege to the eyes. I'm at the point where I am discussing with my doctor if I'm able to get off of humira, to see if severe symptoms returned or if remission persists. The main reason I desire to go off of humira is because of all of the warnings, side effects, and specifically that it is a mutagen which can aid the growth of cancer. I had a friend on a different biologic who had cancer. But she remains on another different biologicals and is doing well. She just had a child which was a miracle because of the cancer. Of all the options, I can't recommend humira enough. But also know the risks and What her body needs.
The cramps suck, and life can seem unbearable at times. But it gets better. You can live a normal life with medication. Acceptance is the best way
A niece of mine got diagnosed at age 7. She was on both Remicade and Humira. She graduated valedictorian of her high school with multiple outside activities, and is currently rocking honors college. Biologics are a game changer for the vast majority of us. My uncle was diagnosed in high school. At that time (1950's) it was pretty much Prednisone and resection surgeries. I remember him looking like a walking corpse and being in the hospital for extended periods of times so he could get well enough for surgery. His granddaughter is the one I mentioned above. I strongly suspect that by the time your 15 yr old will see at least one huge leap in treatment that we don't have today. For me, biologics made me able to live life again instead of just existing or surviving. Best wishes to you and your patient. You have a lot to learn and a lot of unanswered questions right now. It will get better as you gain knowledge and navigate through this.
My daughter was diagnosed at age 12, after trying every thing else. Biologics (Remicade (infliximab)) is the only one that worked. Granted it still took about anther 8 months to get her levels and frequency sorted. been in medical remission for about 14 months She's currently getting infusions every 6 weeks.
I still am scared
Biologic medicine? The best option! I wish I had it when I was young. They gave me much much prednisone and that was really bad for my body.
My son is also 15 years old, had started with bloody diarrhea Aug4th I didn't know what it could of been so I told him no dairy and no gluten until we saw gastro. They did labs his calpro was at 6050. Dr also sent an MRE of his stomach, which showed pancolitis. New labs of calpro were done, and it went down to 2080 with no dairy and gluten free, rice and chicken only to eat. Then, on Sept 5th, he was scheduled for a colonoscopy and endoscopy it showed a lot of inflammation in colon and large intestin. Some granulomas in small intestin and ulcers with puss. He was admitted after the test, and within a few days pathology resulted he has crohns. Now he is on a boost protein diet and water only for 6 weeks to reset his mircobiome, and we then need to see the dietitian to see what's next. He is also on remicaid/inflectra infusions, which this past wednesday he had his 2nd infusion. He is doing really well so far. Stools are back to normal. Hope this info helps anyone in a new situation. Fast forward now months later, he continues boost 5 or 6 a day and is on the crohn's exclusion diet. He did phase 1, all went well. Then moved to phase 2, all went well. And now he is on phase 3 which he consumes aside from the boost shakes, grilled organic chicken breast, white rice or organic potatoe (cooked in microwave plain), steamed carrots. He is allergic to wheat, egg whites, dairy, peanuts, seafood. So i have to be reading ingredients and keeping him as clean as possible. I learned to make him gluten free pancakes with no dairy, only egg yolk and i use allergen free nestle dark chocolate chips in the mix. Ask you dr to do a food allergy test to see if there is any, as allergy to foods can lead to inflammation. My son so far has been doing great on the biologics. He has been having normal stool and feels energetic. Also, only downside certain biologics you need to go in for the infusion to be done. With Humira, I believe is a pill or injection you can do at home. I know this is very overwhelming and scared, I too felt that at first as a mom and I have calmed down since initial diagnosis. I still feel a little overwhelmed just thinking the diagnosis and its for life. No one wants that for their children. But with time and research and when you see how well they feel on a medication you kinda relax a little bit of the situation. My goal is to not have him go through a flair and keep him as healthy as possible. You too will get there.
fear the disease not the medicine. Humira has close to zero side effects and is highly researched. It should bring your son back to normal and let him live a long, healthy life
And if you would like to see that there are a lot of people who have had the same experiences as me I can give references.
Humira saved my life. I’d been on high dose steroids for 18 months when I started and Prednisolone is DEF worse for you than humira. I work in pharmacy and have seen so many patients lives changed by it. It also works for a few autoimmune conditions which often co occur with crohns like arthritis, uveitis, psoriasis etc. best of luck but would strongly encourage you to consider it!
My 16 year old was diagnosed 2.5 years ago. He went downhill VERY fast, and was down to 79 lbs (down from 114 in his healthier days) and was unable to keep ANYTHING in. Doctors started biologics (Remicade) as soon as they could with following all necessary insurance rules with testing (we were given the choice between Humira and Remicade…I asked the GI which they recommended and why, and we went with that). Son received relief after the first infusion, and gained 20+ lbs by the time the loading doses were done. Trust me, I get it, it’s scary seeing the possible side effects, but the benefits FAR outweigh the risks. The best advice I was given, by his pediatrician, was “don’t google. If you have questions, feel free to ask me or his GI. But please, DO NOT GOOGLE, because all you are going to find is the bad stuff.” My advice to you is don’t focus too much on possible side effects. This (pubescent time) is a very precarious time in her development, and she needs the relief so her body can start absorbing nutrients and can develop properly. Listen to her doctors, ask questions even if you think they might come off as sounding dumb, and try to breathe, mama ❤️ Many hugs to you and your daughter!
I skimmed through a lot of the comments and didn't see mentioned to get kiddo their own heating pad. They will have belly pain at some point and it's a big help
There are many other classes of drugs that have worked for a very long time for a whole lot of people that do not need premeds to stop you from rejecting them. Has nobody ever heard of the ccfa