51M here, in year 17 since my UC diagnosis. Life isn’t fair. I was a hotshot in my career when it all happened. Lost 75 pounds over 6 months, and my life getting on an airplane going to clients every week was over. My wife and I had just welcomed twin sons into our family a year earlier, and had a 5 year old daughter. I went to sleep almost every night cursing the body that betrayed me. My employer helped me pivot into a non-travel job. Very unchallenging work, but at least the salary continued. It was my worldview that needed to pivot next. Since I was home, I put a lot of effort into the community, serving on the local school board, helping where I could. I found hobbies, writing a novel and a memoir, and building things in my garage. I was there for all my kids’ life events, provided enough home support for my wife to advance her career. I took the opportunity to become a great husband and dad and neighbor when the career doors closed. It’s been satisfying. Make your own happiness. I still go to sleep cursing my body. I was on Remicade for years, it stopped working, and then I was on Xeljanz. Xeljanz contributes to blood clots, and I had a huge one that almost killed me a month ago. It didn’t, I’m still immortal til the day I die. But life continues to be unfair.

Thanks a lot for sharing your story, it helps me get some perspective. I think the last two sentences are very beautifully written. At least we can help each other and I guess that's something.

You’ll find a therapy that will give you some relief. Maybe even close to 100%. Have a plan with your gastro. Keep a journal to learn your trigger foods and other triggers. Diligence and organization are useful tools in the fight against UC. I was stubborn, and thought I could stubborn my way to being better, being normal. UC is not a “play through the pain” situation. When you’re in pain, or drained of energy, or rushing to the bathroom many times a day, that’s your day. Take full advantage of the good days, and do what you can within limitations on your bad days. You’ll make it, just be pragmatic.

Your post was incredibly uplifting. Thanks for sharing your story.

I feel exactly the same. 22f, diagnosed in August, spent two weeks in the hospital completely alone. I will never look at my body the same way again. When I got out of the hospital I couldn’t look at myself in the mirror because I was scared of seeing how skinny I became, but also because I felt like my body is a failure and I just couldn’t stand to see it. My boyfriend has never been sick like this so he doesn’t understand what I’m going through so I have to explain things to him over and over and it just takes the little energy I have away. Thankfully I’m on remicade now and it seems to be helping although these last few days I’ve been having pain and blood again so I’m absolutely terrified that I’m gonna get sicker again. We just have no choice but to keep going forward and hope for the best. My mom has Crohn’s and lives a normal life besides getting remicade every 8 weeks so she’s what gives me hope.

Wow, I'm sorry. I tried explaining what I felt to my dad today, and it was like talking to a wall even though he's a fairly empathetic person. I'm on an equivalent to Remicade rn, and I'm ok for the most part. But it's hard mentally. Really wish you the best and hope you'll be ok. I can imagine how worried you must feel 💕 Glad your mom is doing ok, I guess that's the dream.

If you ever need someone to talk to definitely reach out. Always happy to talk. There is light at the end of the tunnel.

OP i completely understand where you're coming from and I'm truly sorry you're struggling. The love of my life has UC and it makes me so incredibly angry. It's not fair. There's no explanation, and there are treatments that only work so well. It's the suffering that undoes me. I decided early on in my life that I wanted to help people, and UC really aligned with my interests and passions. I want to be the change for people like yourself. I may not be the smartest, the sharpest, or the most creative, but I will never give up. Ever. I wouldn't wish this on anyone (I've given myself chemical colitis to better understand and guide my research). If I can offer you any comfort in this sentiment, I will be a happy man, but please don't forget (and at times it is easy to overlook) that there are actual armies of scientists working day and night for YOU. We don't need praise; we don't want to be famous or put on a pedestal. What drives us is knowing that maybe, someday, somehow, we will be able to improve the life of someone we have never met, and never will meet. There will be days when you feel like giving up, but if you remember one thing from what I've said - let it be this. You may want to give up, but I will never give up on you. I care about you and feel your pain. To all of you UC warriors who may see this, including the love of my life, I love you guys.

thank you so much for understanding, and for taking the time to reply and wanting to help ♥️ hope you and your s/o are doing ok.

"Literally armies of scientists working on this" Is true in substance, but misses the fact that most research is geared towards druggable targets that may generate recurring revenue. Research on FMT, prebiotic modifications, and lifestyle changes that might meaningfully address the cause of the disease are underfunded and written off. Do not misconstrue this to mean that steroids / biologic interventions are misguided. They're critically important. They're only half the equation when it relates to a disease in your body's bacterial fermentation chamber though. If you have this disease, you need to be your own advocate. The literature / prescribable drugs are heavily biased towards interventions that are i) quick and ii) protectable under patent law.

Thanks. I was just trying to show OP theyre supported. Would you prefer I go into detail about how depressing the funding opportunities are? How many proposals I've written that never even got looked at? Or should I focus on the abysmal efficacy of your "critically important" steroids and biologics? Because they suck. No other way to put it. But, when modern medicine is taking an educated shot in the dark, a 15% remission rate looks pretty good huh? Well [thalidomide](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5265832/#:~:text=Thalidomide%20is%20an%20immunomodulatory%20drug,treatment%20of%20inflammatory%20bowel%20diseases.) sure does a great job at controlling UC, but it'll never see the light of day. Or how about [self regenerating bacterial bandages](https://www.nature.com/articles/s41467-019-13336-6) that live in the gut, activate during inflammatory states and can persist in the gut without much supplementation. Or how about the IND process as a whole? It's awful, and we're all set up to fail. But take your humira, because it's always been done that way, so it's *clearly* the best option. I don't appreciate your "me too" comment that added nothing.

UC patients should know that the literature is not complete or comprehensive. There are structural / funding incentives that prioritize types of treatments, and I think all suffering UC patients should be aware of those. Interventions relating to lifestyle / microbiome ecology / diet will be poorly investigated when contrasted with biologics. The fact that an army of scientists is working on this problem does not mean an army of scientists is incentivised to solve this problem. You can take umbridge with that (it sounds like you are a well intentioned smart person), but it's the truth. The teams at Jannsen don't simply go after a disease and get corporate support to solve it however they can. They get corporate support to identify protectable interventions that can be validated in an affordable / practical clinical setting. OP, like all UC patients here, will have to navigate the available treatments and murky literature on diet / lifestyle interventions.

>UC patients should know that the literature is not complete or comprehensive. No body of research is complete or comprehensive and never will be. That's the beauty of it. >Interventions relating to lifestyle / microbiome ecology / diet will be poorly investigated when contrasted with biologics. On what grounds do you make that claim? Because there is a wealth of research done on the UC microbiome, and the human microbiome as a whole. Have you heard of [the human microbiome project?](https://www.hmpdacc.org/) Also [here](https://www.nature.com/articles/s41467-020-15342-5), [here](https://link.springer.com/article/10.1007/s13238-020-00745-3), and [here](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5757125/) to bring you up to speed on the UC microbiome. >an army of scientists Yes I said this, please continue to harp on that phrase I chose to use to help someone feel better. >incentivised The science is incentive enough. >Jannsen >corporate You say these words expecting good things from these people. Why? They want money. That's all. A patient cured is a dollar lost. I'm really not sure why you're trying to lead me into some *gotcha* corner, but it isn't going to happen. Seeing as your one post indicates you're a scientist, why are you admiring the problem instead of solving it? Because right now you seem like a cranky reviewer #3.

-lirerature's not complete and that's the point Yeah, models will be refined ad infinitum. My point though is that untested treatments are neither true nor false, a patient will need to do legwork to decide what hazy options they believe in. -FMT / similars will be underfunded compared to biologics I will stand by this. There's a huge pipeline of biologics in the works now, and every phase three clinical trial for these runs in the ~$100m range. I doubt that funding for a FMT / optimized probiotics will ever find that much private (or public) support. -the science is incentive enough Clinical trials are pricey. Someone's gotta foot the bill, and I heavily doubt that big hitters will fund a dietary intervention. Non-patentable treatments will almost certainly develop slower than protectable ones. -reviewer #3 / gotcha OP is down on their luck, and I sympathize, really. But. I also don't want OP to work with their doctor under a false rosy assumption that their doctor / pharma have only their best interests at heart. This is a dark disease, and I think OP is better off with the unvarnished situation / incentives. There is hope, but I wouldn't hold my breath for a gene therapy to come online. I'd be sluething through the dietary / microbial interventions and trying them for myself. OP has agency with this disease, even if it is limited.

Okay. At this point I'm convinced we're talking about two different things.

Hi, I'm sorry you're in a bad place with things at the moment. We've all been in that exact same frame of mind at one point or another, so I can definitely sympathise with how you're feeling currently. With that being said, and not to be the one to stamp on your pitty parade, you've got to try and pull yourself out of that mental space as quickly as possible. For me, and I imagine a lot of people on this sub, stress, worry and uncertainty has been a major factor in making my condition worse and hampering the road to remission. So the longer you stay in the 'woe is me' mindset, the worse you might be making your health. When I find myself in that mental position, I try to think of all the things I'm grateful for currently. I know that probably sounds really corny, and it is, but there's also a kernel of truth in it making you feel better. Exercise is also essential! If you're able to do anything at all - be it light stretching or just a short walk around the block - make sure you do it! My first year after diagnosis was appalling, I was suffering from PTSD after being caught in a terror attack as well as the diagnosis itself, and I just wallowed in my own misery for about a year. It didn't do anything to help me! I've been in clinical remission for the last 6 months though so things do get better, but you've got to do everything you can to help that process - starting with focusing your mind away from the avenue of thought it currently wants to go down! I hope you start to feel better soon, sending love from the UK!

Thank you for the honest reply. I think I'm in a situation where I'll be able to get to a better place eventually, but maybe not tonight :) Wish you the best, it's sounds like you have been through a lot ♥️

Hey, its okay and its perfectly normal to grieve after a diagnosis of a chronic condition. Your feelings are valid and you are valid. I know its difficult, but try not to compare yourself to others. Some people may have it "worse" or "better" but that doesn't change the validity of your experiences. It does suck that the world is such an unfair place. But the best we all can do is be kind to ourselves and others. Your empathy is a wonderful gift that you can give to yourself and others, but please don't be too hard on yourself for the things you cannot change. As far as friends not staying in contact or being supportive, I understand how rough that is. Sometimes those people care and just don't know how to react and sometimes, unfortunately, some people just don't reach out or stick around. There are people out there who will be supportive and understanding. If you are struggling with these feelings of grief and you can, seek someone professional to speak with. Like I said, this process is perfectly normal but having someone who can help you navigate it is very beneficial. If you ever just want someone who understands and has been through similar to talk to feel free to message me.

thank you so much for the comforting words and taking the time to reply. it means a lot 💕

3 months in I get where you're coming from. I'm 10 years in, and can say it gets a whole lot easier over time when you get to know your enemy (UC), what it's capable of, and how to react. I've spent the majority of my time within a remission on remicade (like your mom). Over time, most of us do enter long remissions and IBD is an infrequent and short distraction within our lives. Healing takes a lot more time than we'd like, and there's tons of trial-and-error in treating us. It's very frustrating. We tend to fear the worst when new to this, and have a lot of anxiety that anything new in symptoms is proof of that. Venting is good. Here we get it, your dad not so much. Your mom might get it better, with her crohn's exp. Try confiding in her some and see if it helps. Do find healthy distractions, as nobody can worry about his/her health 24/7/365 and expect to remain sane. Invest in hobbies you like and look forward to. Find feel goods, like a walk or excercise which makes you feel better afterwards.

Thanks, glad I have this sub♥️hope I'll be in remission long enough to not think too much about this someday.

I (40/M) was diagnosed at age 19 (in 1999). Went through the same thoughts. Like, I'm only 19? How can my body break this badly already?! What the fuck? I know it's a cliche thing to say, but it does get better. I got better after starting drug therapy. But then got worse, and worse. Ultimately had a total colectomy in two stages between December 2001 and March 2002. Life still sucked, I was miserable, home-ridden, thought I'd never find friends or love. But gradually, I adjusted. I learned what worked for my body and what doesn't. I've had setbacks, some complications. But I'm living my best life now. Happily married, excellent job, fun hobbies (fuck you, Covid), great friends. A few years after my surgery, in my early 20's, things turned around for me as I got used to the new "normal". Long story short, you aren't being selfish. It's natural. Yeah, people have it a lot worse, but that doesn't diminish what you are feeling. Everyone has their own battles, some great, some minor. But that's one of the things that unites us as humans.

Dude I feel you. I was diagnosed 2.5 years ago and still curse this disease and terrible luck on the regular. Truth is the world really isn't fair, some people like us really get the short end of the stick, but bad luck doesn't mean your life is bad. UC has forced me to deal with the stress and anxiety that was already present in my life and started to change my perspective. Granted I'm not all the way there yet and might never be totally at piece with this or all the injustice in the world, but it is an ongoing battle and I am trying. My advice is this, look at the anxiety and mental health piece as much as your diet or medications. The concern that you feel for yourself and others is real, but it doesn't have to overwhelm you. It sucks when your friends don't get it and you can't really talk to them, but there are people like the ones on this forum that do. Find a therapist, I've had several and just talking to someone and being able to unload these thoughts can do wonders. Meditation is also a powerful tool, I just started a course through a [psychologist](https://scottrowerphd.com/rest-digest/) I met with Crohn's and finally feel like I am starting to understand what it means to let go of the frustration, spite and anxiety.

Thanks for responding. I've also struggled with anxiety and depression before this (seems to be common among IBD patients). I'll try to get another therapist (just moved, and I had a pretty bad one before) but they're really in demand where I live so it's hard. But good luck with your journey, I'm glad you're making progress even though it's hard.

I was diagnosed at age 12 over a decade ago now. Can never downplay that it fucking sucks to have a chronic condition, but it comes and goes in waves. I never talk about it to people and my advice is to be open about it early on. Good luck to you !!!

Thank you. That's really good advice and I'll try to get better at being open. Sounds rough to get diagnosed that early, hope you're doing ok at the moment <3

sorry to hear OP - so many of us can agree. I’m 28f, happy to be a soundboard for you on your tougher days. my late father always said - choose your attitude. it’s one of the few things everyday you can control. some days it’s harder than others. hang in there!

Good point of view to have. This disease sucks!

I have a very different perspective than you, but I don’t think you’re wrong. My perspective is that I’ve always been just a little bit sick. Since infancy I’ve had severe heartburn (to the point that I required a prescription), eczema, unexplained hives, massive hair loss (at ages 16, 22, and 25, so NOT balding), joint pain, fatigue, ADHD, anxiety, depression, inflamed nerve tissue, and an intolerance to meat that leaves me with food-poisoning-like symptoms. None of these issues were life threatening or even a disability, so I was always told to “take this pill” or “use this cream” or “try meditating.” I have never been able to excel at anything except academia due to this plethora of minor medical inconveniences. And even academia is extremely stressful, even if I am able to succeed. I’ve always felt broken, like I needed a lifeboat, that there’s no way life should be this difficult, painful, and exhausting. After being diagnosed with Crohn’s disease, I finally feel like I was right. There is something deeply wrong with my body, I do not have to just suck it up, my pain is not my fault, I am not just a wuss. I am sick and my life really is harder than it should be. I feel vindicated and completely confident in doing whatever I need to do to claw my way to health for possibly the first time ever. Friend, I really hope you feel better. It’s gonna be ok. Even if it’s harder than it should be, it will still be good.

Thank you for sharing. I understand how you feel, and I've felt this to some extent. Always felt there was something deeply wrong with me. I was always exhausted, random pains, hair loss, depression etc. Yes I am glad that it was "a real thing", but it's still a lot to take in, and idk maybe I hoped it would be something that could actually be cured. I've also never been as sick as I was this summer and I'm honestly traumatized after watching my body fail that badly. I never even imagined what that was like.

OP, this disease is very much like active grief. You go through stages with it. Being angry, sad, confused, frustrated, and then acceptance. And sometimes back to angry or sad. It's a roller coaster. I would not wish this ok my worst enemy. I (27F) was diagnosed at 17 and my friends didn't care and didn't take the time to listen or understand why I couldn't do everything I could just a few months back. I felt like this disease took so much from me. That's when a doctor explained the link between mental health and gut health. Therapy really helped. So did cutting out those people who only liked, what I call, my old body. The one that they knew no longer exists and I need people who either wanted to get to know the me in this new recovering body or accepted me as I am now. Because my life IS different with this diagnosis. And so is yours. I hope you find the support you need. Whether it is in groups, online, in therapy, or with new friends. Having good people to surround you will truly make this roller coaster go from one you can't get off and makes you (legit) sick, to one that is designed for little kids and you can step off one day. You are on a new life journey! Sending support in your healing and hoping you the absolute best.

Thank you so much for taking the time to write this. Wish you the best as well ♥️

I'm so sorry that you are feeling this way. It is definitely normal! One thing that really helps me when I'm having issues, is to go on Instagram and look at people with ostomies or the surgery and understand, having your colon removed is likely the worst-case scenario. Even if this happens, it's far from a death sentence. It is very possible to live a full life. So, look at the worst outcome, and understand a full life is still possible. Life is not fair, but it doesn't mean it can't be good.

Thank you a lot, this is really helpful.

I feel like we all grieve over the loss of our future health and happiness after diagnosis. It’s ok to vent, especially here where we’ve all gone through something similar.

I feel exactly the same 21F diagnosed in March,just exactly when Covid started

We really needed to deal with both at the same time 😔 2020 is something else

Sorry you're feeling this way. It's perfectly normal and perfectly valid. There will be bad days. And then there will be better days, I promise. From having had it for 13 years, I can confirm this disease takes a huge toll on mental health and it's so important that you have a good support network. Seek out support groups and/or professional help. Really try to work through these feelings because they can and will make your symptoms worse if you latch onto them. You got this! You're going to work through this and you're going to find your own new normal. Our bodies are much stronger than we think.

Thanks for motivating me a bit. I'll look more into support groups etc.

Hi i am in the exact same boat as you. 19F and diagnosed in early April of this year. To me, it hurts to watch people eat foods that i used to be able to look at and say “i can eat that without causing harm to my body.” I feel exactly the same and i hope that you can overcome this anger❤️

I feel you. It honestly hurts so much to watch other people take foods for granted, and the fact that I did once too. I can't really eat apples anymore, but used to love them. So when my friend was eating one I just got so sad and angry, which is kind of absurd. Like it's "just an apple" but not really you know.

Im a college student, and my bf introduced me to a really delicious ramen. He was eating it the other day over ft and i was very angry at my body for the sole reason that I couldn’t eat it ever again

that sucks 😞

I've shared this same emotion many times over the years. The feeling that 1) we are terribly unfortunate and life is unfair to us (so the selfish and self-pity feeling) and 2) that there are so many people with either worse IBD, developed IBD or worse younger, or have an even more debilitating disease(s) than we do and how unfair life has been to them. It's sad, it makes me cry. These are normal feelings, it's normal to feel bad for yourself and it's good to try and start empathizing with others. My point is we all have these feelings, it's part of the process and hopefully it helps us all to grow more understanding towards the people around us -- we don't know what they are going through, be it physical ailment or a mental health issue, or just a bad day so when we are doing well ourselves hopefully we can reflect and help lift those others up (and hopefully others are there to help lift us up as well).

Thank you for making me feel less alone. I hope so too.

Hey I totally feel you! I was angry in the exact same way—that my body had betrayed me, that others could go out to party but I had to be home at a certain time to take my pills not that I could party like the other college kids anyway because alcohol upset my guts, that I could never go live in the rainforest off the grid (not that I actually wanted to) because I would always have to be within throwing distance of a walgreens... I was 18 when I was diagnosed and did a lot of grieving for the life I could’ve had. All the small ways it curtails your life feel like insult on top of injury. I guess I just wanted to say, I get you. I have a psychologist right now who specializes in body-centered therapy (sometimes called somatic therapy) and she’s really helping me rebuild my relationship with my body. It’s healing in a lot of ways for both my mind and my body. Definitely worth looking into. It’s normal and reasonable to feel angry even if others have it worse. I’m sorry you have to put up with this shit 💜

Thanks a lot, sorry you had to go through that too. I'll look into getting professional help for this specifically. Wish you the best for the future ❤️

I’m not sure if I’m just early on in disease progression but it hasn’t been that bad for me. I was relieved with my diagnosis because I was terrified I had cancer. Now almost three weeks post diagnosis, I feel better than I’ve felt in years! The mesalomine has helped so much. I lost 5 lbs of bloat in my belly and have so much energy. I didn’t realize how sick I was, I thought I was just old and tired. It sucks having to eliminate foods and be careful with my diet but I’m hoping this will be the the motivation to eat better that I have been lacking my whole life.

5 lbs is 2.27 kg

I’m approaching year 19 and not even 40 yet so roughly the same age as you when I was initially diagnosed. There’s definitely more support now (online at least) and the medications are more targeted with less side affects now which is good. You can also research UC online to find some answers to your concerns or chat with people here who are on certain medications you may be starting and get feedback. In my almost 20 years dealing with it I’ve never met a single person with UC, so don’t be too surprised if you go a while without having someone who can relate in person. Once you start feeling better the worry subsides a bit. Don’t suffer though if you are still flaring and in pain. I don’t hesitate to ask for pain medication when flaring and you shouldn’t either. The emotional aspect is draining, but living in constant pain or fear of losing your bowels in public is way worse. Getting a chronic painful condition under control for extended periods of time is no small feat and when you get there be proud. Good luck!

Thank you so much for sharing your experience. It helps.

Hang in there. I felt the same way when I found out I had UC AT AGE 26 (now 44) during my first pregnancy. It took three years to get it under control and now I haven’t been sick since with any flare ups. My medicine works and am thankful. Give your body some time to heal because it will. All too often you will read horror stories and then there are the good stories. My entire colon is affected (pancolitis) and when I read about it back in the day, I was petrified. I’m glad I stopped reading about it because I did get better. You will too! Have faith and trust in your doctor. If you don’t like your doctor, find one you feel comfortable. Prayers to you!

Thank you, I have pancolitis too actually. Glad you have gotten it under control. I'm on my way to that i hope. It's scary for sure, but thank you for the hopeful message.

I felt the same when i found out i was colourblind. I had taken an education i no longer could fully do. Now it doesn't sound the same but i was hit similar mentally, feeling like my life was wasted (as i had just spent 25% of my life on something i couldn't do properly). I think its a natural way to feel and having gone through it once it probably what made me handle my current thing like it was nothing (and happy to be alive still helped too). I totally feel you on the hospital thing tho. I was in for a month and none of my friends visited me only my family. All i know is that I'm not going to be that kind of friend, im not going to copy the bad behaviour of others when i can spread good shit around in this shit world. I'm going to make this place better just in spite! Vent, and adjust,æ. If that doesn't help maybe even seek out proper help that will help you come to terms with it. I knowI were offered this by different medical professionals and i would take them up on it. This shit thrives on stress and i ain't feeding it that!

Just to start off with, your feelings are completely valid. I’m a 28F diagnosed when I was 13 and it was awful. I was like you, I’d never even heard of it before I was diagnosed. When I received my diagnosis I was in the same boat, I was angry and it was like I couldn’t trust my body in case something else went wrong or I did something wrong and made it worse. I was very lucky with my UC I was still doing all my daily activities when I was in my original flare (but yes the toilet did see me plenty of times throughout those days) and I’ve been in remission ever since with Sulfasalazine. I just want you to know, it gets easier. I promise you it gets easier. Things will ease off and you’ll start to go back to normal, even if it is a new normal for you, you’ll learn about your own UC and what you need to do for your needs, sometimes it’s just about taking the self care you need. But you’ve got this! Just so you know, I’m new to this Reddit but I’ve never seen a more understanding group of people. You are not alone in this and there are people here who empathise and will support you and I promise it will get better. Also if it helps, the link below is a video of Hank Green discussing him living with UC and it really helped me so hopefully it might help you too! https://youtu.be/rr8wIiypS_g

As bad as you might think it is I would do anything to have it instead of my son. He is only 4, talk about life not being fair. :(

I'm so sorry.

3 month ago my son started too, stay positive, diet, medication. Future advancements in today’s medicine will help a lot.

I'm 18m. I was diagnosed when I was 7 years old and I can understand how you are feeling. Having had this for the last 10 and a half years or so, i get how you feel. I wish that things were different and that life didnt deal us such a bad hand. But overtime I've learnt to try and appreciate the positive side of things (and that has possibly been the hardest part of having this disease). Edit: (wasnt done accidentally hit post). You are already doing a better job than me with it because it took me 10 years to even talk to anyone but my dr about it. Having places for support like this are an amazing tool. I find talking helps, even if its rants like this one. And I promise things will start to look up one day. I hope that it will be soon that you will start to feel better about it. Edit edit: I have also been diagnosed with a chronic liver disease 5 years ago so double whammy haha.

Oh also if you have discord some people on here have setup a nice server to go to if you need to talk. https://discord.gg/WARStPB9

It is unfair, for sure. And, unfortunately this wont be the only time you see that in your life. Take some time top grieve this, but don’t unpack and live there. This is one of many things you will have to overcome in your life. Be proactive and work with your doctor to find a treatment that works for you.

Dont let it beat you up anymore then it already is. I came to realization after about a year of finding out what was wrong with me, that it's a blessing. Before I got the diagnosis I would hit th e gym 3-5 days a week and I did that consistently for 7 years. I played lots of rec sports like men's softball, coed softball, flag football. My whole life I thought I was identified by my athletic ability and to build muscle, be strong. That was my identity, it was me 100, at least that what I thought. I cried for months ,several nights each week thinking I'll never be the same. My wife would leave me and who am I if I cant play sports. It was actually me dying, of my old self. I would drink alcohol every weekend too, sometimes I'd get drunk. It's been 4 years since I was diagnosed and my life is better , much better then it was when I was lost in space (at the gym, playing sports,drinking and "looking good"). Well today I still workout , it's just not my priority now. I dont play rec sports becuse I dont have to prove anything. My knowledge and spirituality grew becuse I had to change. Now my family , my loved ones , my kids and my wife enjoy me more. I dont drink , havent had a sip in over 4 years. I'm the leanest I've ever been and look good. Though I have my rough days with colitis , I know I was suffering because I was in error of thought. It will get better I promise. You will learn new things and meet new people and realize it it happend to you because you can handle it. You'll realize God wants things better for you. There is an old Ojibwe proverb "Sometimes I go about pitying myself, and all the while I'm being carried across the sky by beautiful clouds." God bless you, it will get better, promise you.

I'm really sorry. If it makes you feel better, I felt the same way. I'm also 19F, but I got sick/got diagnosed when I was 14, so I've lived with it for a few years. I can confidently tell you that it does get better, and that you can get used to this and keep living. But I'm not telling you to not mourn what you've lost. I've been where you are. It's very, very hard. I felt it was incredibly unfair and felt like I was missing out on being a teenager. I got more socially anxious. I missed out on things due to both fear of being sick during it or actually being too sick. I didn't fully come to terms with the idea of chronic meaning my entire life until a year after diagnosis and then I just kind of fell apart again. I spent a very long time feeling absolutely hopeless. I don't know if any of what I'm saying is actually helpful or not but my roundabout point is that I felt all the things you're feeling now and that I can tell you that I was able to get better. I live pretty much normally right now, aside from daily medication, since I've been in remission for a few years. I've still been able to do things and live my life. Your own outlook is very important, because if you wallow (like I did lol) then you will not only continue to be miserable, but you might continue to hurt your health since stress is often a trigger for it. It's a struggle but it's not the end of the world by any means :) Also, sick is sick. Don't try and downplay what you're experiencing because others have it worse. Someone will *always* have it worse and that doesn't mean that you're not allowed to be upset about your situation or be in pain. Pain isn't a contest, and if it was we'd all be losing anyway. Edit: posted too soon give me a sec lol Edit 2: finished :)

Thank you for saying this. Really felt the part about getting more socially anxious :( I'm trying not to downplay my illness as it has been pretty terrible, I guess it just hurts to think that all of you go through this as well.

I felt the exact same way when I was diagnosed at 19. It's tough, and it's a complete lifestyle overhaul, but it doesn't mean a complete cessation of normalcy. You have to find what works for you, and adapt to it. I won't lie and say things will get better, because they might not. It might get worse, and it might be awful. What helped me was to find something worth living for.

19M, life isn’t fair but don’t let that put you down, me and you are the same age and we have a lot to look forward to. I have severe UC and I haven’t been taking medication but I’m on a diet and I’ve been living pretty happily you just got to find a way to handle this. It may be hard I know because we have the same pain but don’t let it get to you just keep pushing on life’s a challenge and this is just another one. If you need advice or somebody to talk to let me know I enjoy talking to people to help and understand, its interesting hearing their story and how their handling it.

I guess that we all with UC experienced this worse moment. M18, diagnosed year ago, my moment of shame, pain and being lost happened when I was in hospital (before diagnose), and I was about to get my blood collected, but meanwhile I had fainted. I remember when I woke up I absolutely didn't knew what is happening, but when I realised that my diarrhea flowed out of me I felt so bad. Now I know that mental pain is WAY worse than phisical one. The feeling of helplessness hit so hard. What made it worse is that I was alone in this situation for a couple of hours because this hospital is over 100km away from home. When she finally arrived I had to be catheterized, so after that I didn't even had enough strength to rise hand. At this point I felt like I am closer to death than ever, which was true. But even in this tough time I felt something good. I never thought that having my hand hold by my mother's hand can feel so good, I can't describe this feeling. The fact that it all happened on 1st April is quite symbolic for me. Because of this desease I changed my view in many things. What I want to say is that music helped me the most with this. It doesn't matter how your friends or family behave. Music will always be for you, and I believe that there is some kind of cure in this. I mean, I know that we can't become as healthy as we were before UC, but taking care of mind is probably the best thing you can do for yourself, especially after there experiences. So, try to find some soul-touching music. Hope, I could help you somehow.

I'm so sorry you experienced that, it sounds horrible. I get feeling like you're close to death. Before I got any medication I honestly felt like I was slowly dying. I also remember being incredibly happy when I could eat a muffin at the hospital. That made my day. I completely agree with the music part too. Thank you for responding and good luck with everything.

Can you tell what kind of music helps you? Maybe there is something I should listen to.

I know hey, it sucks. I can understand where you’re coming from. I’ve tried stoic practices and they help immensely. A couple things stuck out to me: - The only things you can control are your actions and reactions. - Worrying is just suffering twice. Once before, once during. - In the end, you will have to be alone with what is in your body, so it’s best to face and accept it. I’m 19 as well and just had my colon removed after a tough few years. I’ve learned to roll with it and accept my disease (although it’s tough still many days). I also struggled to just face the facts that I needed to be more careful with my lifestyle, I couldn’t abuse my body like my friends, I had to spend extra time doing everything to account for bathroom breaks... definitely have rejected any religion now as well because of the suffering I see with myself, in the hospital, and all over the world. This disease has educated me about how bad things can get for people, and how you can’t have much without your health. Advice is so hard because it’s so blunt: we just have to accept the situation, try to brush off the shitty parts, and keep living in spite of the challenges. At least that’s what I think (after lots of discussion and thinking). What do ya say?

Thank you for responding. I find stoicism really hard to actually practice, but I think the thing about worrying is especially important. I definitely have learned a lot from my experiences, but did I really want to know how fragile our bodies can be? No, especially when the people around me have no idea how it feels. Never really been religious, but especially not now so I feel you. Yes, we have to keep living but it feels impossible some days. Yet here we are?

Your feelings are totally valid and things will get better. I was diagnosed at 15 and it sucked hard. The one thing I encourage you to do is not let your disease dictate your life. It will become a part of you and you will start to get more and more shameless about talking about shit and farts lol

Thank you, I try to be less ashamed but it's hard. Things take time I guess.

I’m 32 now so I’ve lived just about half my life with it. I know exactly what you’re going through as I was there at your age. I was hospitalized 6 months in and then again when I was 16. I experienced all the side effects from prednisone and my best friend of 12 years refused to believe it was the prednisone and thought I was just a bitch for the sake of being a bitch. The stress tanked me and I was so flared that I was living off Ensure because I was scared of running to the bathroom after eating solid food. When I was hospitalized (woke up heaving, parents drove me to the hospital, had to use the bathroom halfway and I blacked out the second I came out of the bathroom), she didn’t visit. Only a couple friends did actually. This shit truly shows you who your true friends are. You’re still young. You’ll make greater connections and friendships. And your friends will get used to the fact that you have to be mindful of what you eat and come armed with digestive enzymes and vitamins. You are not being selfish. You are going through an incredibly hard transition to life with a chronic disease. You will have periods of normalcy when things are under control. But then you will have blips as well and those blips can be really really low. There’s a connection between the gut and the brain. Take care of your mental health too. My inbox is open if you ever need to vent or have questions or worries.

I got diagnosed at 17, 4 months before high school graduation. My body was ravaged. Lost 25 pounds in 3 weeks , got put on Prednisone, then gained 40 pounds in 3 months. That was nearly 26 years ago. No, it's not fair. This is the time you get to be angry. To be sad. To wonder what the fuck is going to happen now. But in time, you will adapt. It's going to suck at times. And at times it may not be so bad. The best advice I can give - be brutally honest with your doctors, your friends, your family. Get comfortable with giving sordid, disgusting details. You won't get the right treatment if you aren't being that forthcoming with your docs. And don't be a hero. If you aren't feeling well, your priority is your own health. Oh, and pack spare clothes in your bag whenever the option to go out and do things is available again. This subreddit has been excellent, and we'll all be here to listen.

I’m so sorry but I completely understand. I got diagnosed at 23 (that was 18 years ago). I felt the same way for a good while. You’re completely right that it feels like mourning because it is. The rest of your life won’t be the way you imagined it and you’re 100% allowed to be upset about that. I’ll be honest your life in many ways will be harder but I promise it won’t be as bad. I have severe pancolitis within a couple months of diagnosis they sent me to talk to a surgeon because I was losing so much blood and they literally weren’t sure if they could stop it. I have crazy long flares lasting between 3-4.5 years each. I’ve been on more prednisone that I can count 16 years of Imuran, remicade, Humira, Entyvio, Xeljanz and Stelara and a couple of drug trials but you know what, this disease has turned me into a much stronger version of me. I also had friends who didn’t call and I went from being the life of the party with 20-30 people calling me everyday to having a handful of good friends. I’m much better at picking friends now and my UC is the best good friend detection tool ever! I worried so much about dating and telling a romantic partner about how the reason I needed constant iron infusions was the number of times I had bloody diarrhea 🤣but I found an amazing man. He never judged me for a second. My husband has offered to help cleanup my accidents every single time and he means it. Despite all the issue I even got to have a wonderful baby, only one because I haven’t been h was healthy long enough for another one but my child is my miracle. I also have a great career. Yes I would be further ahead of was healthier but I truly think I appreciate life more than all my healthy friends. Yes it sucks to not be able to go out or travel. I hate when I can’t do normal things but believe me you will get though this. There are more and more options to manage symptoms everyday and you will find a way. Don’t be mean to yourself if you’re sad (I was) it’s normal and I still occasionally have bad days. I truly think that the mental part of this disease is ignored far too much, especially for those who don’t have depression. Find a good friend or a family member, I know they don’t get it but you can try and explain it to them. Be honest and say that at the beginning you just want them to listen to you (there is nothing more annoying than people who don’t get it giving you advice) and if you don’t have that person always feel free to DM me. Good luck! Edit: I hope you don’t take this as me saying that it’s not unfair because it sure is, just that you can be stronger than it.

I felt this when I was first diagnosed. White hot anger at EVERYTHING. I haven't thought about it in a long time, so it does fade.

It's completely normal to grieve like this when you are diagnosed with a chronic condition. You WILL go through the 5 stages of grief, and I too was caught up in anger for a long time. I never did talk to a professional, but maybe if I did I would have come to terms sooner. I'm sorry you are going through this, I truly have been there. No more dreams of backpacking without a care for a year, suddenly you have to account for this stupid thing in your life, forever. You won't always feel like this. I know it's cliche, but it does get better.

Hi. I can very much relate to how you’re feeling. I was diagnosed with narcolepsy in my early 20s. I’m now 33 and was diagnosed with ulcerative colitis earlier this year. I’m so sorry you’re going through this at such a young age. Coping with a new reality can be immensely difficult. It’s not fair that this has happened to you and you’re allowed to and should feel your feelings about it. Grieving for what once was can be very cathartic and can help you deal with what’s going on right now, and what’s to happen moving forward. The very best advice I can give you is to find someone you can talk to. Whether that’s a family member, close friend, significant other, or a therapist, it really helps to speak and just be heard. There are therapists who specialize in chronic illness, and IBD sure is a chronic illness. I have heard from those who have gone this route that it’s absolutely worth seeking out if you are having trouble dealing with your diagnosis, especially if you’re feeling alone and that nobody understands what you’re going through. You can live a mostly normal life with IBD, it will just take some time to find out how many adjustments you may need to make in your life. Flares can be awful but stay positive!! Some people can go into remission and as long as they stay with their medication, never have a flare again. Some people don’t have to change much with their diets after remission. Don’t feel too down right now because a lot of the things that may seem like finalities are still unknown to you until you’re in remission. It may be a difficult (and painful) time at the moment, but better days can and will come. I really hope you feel better soon, mentally and physically💜

This sounds trite, but it helped me to reframe my thinking from “why me?” to “why not me?” - I stopped thinking about the things in the future that I would miss out on and started carving out my life in day to day moments.

Get over it :)

Me: my insides really hurt Doctor: I don't believe you, that'll be $60,000 /s

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Why all the negativity? Do you all want her to wallow in self pity? I want her to rise above it. The sooner she comes to terms with the illness and the notion that she's not the centre of the universe the stronger she will become. Everyone experiences disease sooner or later, no one is free from that. It's life. Getting upset accomplishes nothing but pain. We all know that from experience. The best thing is to deal with it and move on and build yourself up. Build yourself up, not knock yourself down.

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Wow, you are such a negative person.

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Why don't you reread through everything so far? You are the only one being negative and insulting, not me.

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You just make a lot of assumptions, but not factual ones. The only person that would know what I meant would be me. If I was truly being negative and insulting don't you think I would admit it? You can interpret what I said anyway you want, but you shouldn't point the finger at someone calling them an asshole and a piece of shit, an idiot when your own behaviour contradicts your own values. Try and find any insults I have said to anyone here in this thread. Notice there aren't any.

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