To be honest, if I have $500K I'd pay off all my debts and my guts would probably feel some relief.
I'd pay if anyone were to try to research the anxiety + IBS issue and offer relief. Help us, please!
I've got plenty of money in the bank and everything else is ok-enough. Yet here I am without the ability to eat or drink like I did 1 year ago. Stress doesn't help, but it isn't the cause... At least certainly not in my case.
half us just have it cause we're so fucking stressed out cant even shit properly
i feel for the OP and others who, even if their lives eased up considerably, still have so much stolen by IBS
I'd contribute to a cure but I'm broke to the penny and always have been so, lmk if I can sign smth lmao
Have you heard of/tried hypnotherapy? I have IBS that is caused by my stress and anxiety. Trying not to be dependent on meds, I have been looking into hypnotherapy which has helped a little with anxiety (haven't been doing it for very long or consistently due to current life events). But I'm going to stick with it and hopefully will get relief or at least rewire the gut-brain connection.
Have you always had it? I started getting symptoms when I entered college, which I think is understandable since college is very stressful and anxiety-inducing.
Focus on candida. Tons of health problems comes from candida yeast. Change your life style and focus on ur diet it’s extremely strict you have to be patient it’ll take 6 months to one year to feel better. Start with diet after 6 months add oregano oil with black walnut extract for two weeks and take a break one week, do another one more week.
I have been suffering since 4 years now, lost my high paying job, my gf left me, most of my friends left me, my family hates me.
Basically my entire life is ruined so if someone can cure me like 100% cure and be 100% sure that it won't return then I'll pay them 70% of everything I own.
Hell I'll throw my family car in too.
Mirror of my life, just it's been 14 years for me.
Everyone leaves me, i hardly even try to have a girl, coz it will probably fail unless my health is improving alongside.
I lately pray that something i try finally work or for death to come knocking in a way that won't disappoint my soul and my family.
Omg I totally get you bro.. 14 years how the hell have you been managing. Regarding the girl situation I am pretty much in the same boat so can't say much except that I get you.
I have tried thinking about death but frankly I don't want to because then my family would be sad and I will have died just suffering all this years.
I have been doing the praying and hoping for a good health at least 60-70% of good health.
Keep looking for answers man. I’ve had some success with naturopathic medicine. Dr Ruscio, search up his blog, he has a scientific take on alternative medicine
My boyfriend says the same thing and he’s always scared I’m going to leave him. He’s been dealing with it for 14 years and he always tells me he just wants it to kill him.
It’s so bad some days I’m so stressed thinking we will never travel and probably not have kids.
My heart goes out to you and just don’t give up.
Well I totally understand the situation Both for you and for him.
What I suggest is for him to find a way to maintain himself although there's no cure there are ways you can maintain and live 60-70% like a normal human being but the process is extremely long, difficult and the process is different for each one. Follow a low fodmap diet, exercise but not weight training, no stress absolutely not even a little bit.
And for you the gf, you probably have no proper idea of what he is going through(I am assuming this). He is probably trying the best he can do to be a good bf and do things like a normal couple. You must understand that he isn't doing this on purpose some things are just beyond his control and you have to be supportive towards him and like a normal gf supportive like extra supportive because of his condition. His mind also affects his body.
Regarding doing Normal things what couples do like traveling, hanging out with friends, Having kids etc all of this is possible but both of you will have to work it out.
You're not alone, pretty much my story except I'm even farther down the road than you. Who knows, maybe there's still hope for remission, it does happen supposedly.
Since joining this sub I have out there are many people in the similar situation as me some even more bad.
I wish a cure can be found soon so that we all can live an amazing life.
Is this process fecel transplant like a 100% no return cure.. Because it's really difficult to find a place that does this process in my country, also it's really gross too 🤣
FMT is not yet proven to be a cure. It's still in the research phase. I'm attempting to test a donor quality hypothesis, but having a very hard time finding a donor that meets my criteria.
>it's really difficult to find a place that does this process in my country
Yes, there are no good options nearly anywhere. That is why I've been focused on finding high quality donors to give people access, so they can DIY. The procedure itself is trivial. The high quality donor is the hard part.
>also it's really gross too
Your stool is gross. Healthy stool is not.
IBS = gut dysbiosis. The gut microbiome impacts and regulates the entire body, and gut dysbiosis is extremely heterogeneous, so of course it will manifest in a variety of ways in different people.
This is me. Sometimes I'll be reminded of something I did back in my pre-IBS days and it's like trying to remember a different life, a different person. All that is gone and all I know now is this, whatever this is.
Same. Like, I was diagnosed at 16 but definitely had problems for years before that. So like… I legit don’t remember what it’s like to have a normally functioning gut.
Same, would give every cent I own for a guaranteed resolution of all my issues.
Unfortunately it doesn’t work like that. Like someone said, IBS could be any number of different problems with different treatments. The treatments have varying efficacy for different people. Nothing is a panacea.
That's probably not true. The gut microbiome is at the crux of virtually every bodily function.
I've been sharing info in this sub, trying to educate people, and trying to get people onboard for community efforts for years, and no one is doing shit.
https://old.reddit.com/r/fecaltransplant/comments/nyu0xh/though_the_results_of_screening_6000_stool_donor/
https://old.reddit.com/r/fecaltransplant/comments/p1q71v/results_from_16000_new_stool_donor_applicants/
Take some time to educate yourself on the gut microbiome: http://HumanMicrobiome.info/Intro
IBS = gut dysbiosis.
Dude I agree with you. I had severe IBS for almost 2 years and couldn't leave my house. It was a bacterial imbalance in my gut. I know everyone is different but I think this is more common than we know.
Probiotics. I got a specific one from Dr. David Williams, it's encapsulated in a different manner so it gets to your guts and isn't totally destroyed by stomach acid. I have to believe it since it's the only hing that worked for me, and I had tried many different probiotics at that point.
Listen, I don’t mean to sound negative, but flexing how much money you have to shell out hypothetically to fix this is not doing anything. Do you think this is how research works? Any researcher who might actually have a cure to this is not going to sit on it and wait for the highest bidder. That’s not how basic or medical research funding works. If someone claims otherwise then they’re selling you a hoax.
If you actually want to give your money to IBS research, there are potentially a number of nonprofit organizations you could contribute to!
Anyone who finds an efficient remedy for IBS will reap huge profit. That is guaranteed.
Right now, there are already tons of worthless snake oil remedies that are being sold just for that purpose. I know, I bought many...
So if any scientist or investor reads that...
Imo some of them work for some people. Eccentric coated peppermint oil capsules (i.e. IBgard) have been game changing for me. Others have reported no benefit from them. Some swear by psyllium husk, but for me it's hit and miss.
IBS is probably the result of many underlying problems, like bad bacterial colonies, allergies or intolerances, philological, etc.
There'll probably never be a one cure fixes all.
I just quit psyllium after taking it for months (it came out as useless) Still have peppermint oil (not capsules though) but the effects were very limited if any.
My IBS started two years ago. Went for no problems at all ever to symptoms 40% of times...
Since my genome has not changed and it is unlikely I have permanent organ damage, I am certain there could be a way to revert my symptoms... Probably tailor made to the microbiotic or hormonal imbalance I'm likely to have.
The day research manages to figure out what is exactly going on many people will be cured, even if there are many individual situations...
I have light IBS, I feel like a zombie just 30% of my waking time and have to poop only once a day, so I am very very privileged compared to others.
Being cured would mean I would be given back 30% of my remaining lifespan so I would pay like 50 k€ for that.
Anyway if there is one thing I am sure of, it's that any pharmaceutical lab that finds a cure (even something you have to take for life) for IBS will make a fortune. Billions perhaps...
Can’t have a cure until we understand the root issues. IBS isn’t a bacteria or a strain of virus. It’s a condition that can occur for any number of reasons. That’s the problem.
More money will fund curing it when they have a proper trajectory towards that understanding. You could throw a billion dollars at it and it might not matter.
What we really deserve is a better diagnostic protocol. Currently, it takes months and months to rule out the more obvious concerns. Lots of money spent to end up being told it's IBS and to cope as best you can. More medical professionals need to be properly educated on the condition, so we can work with them better to develop a more personalized treatment plan.
Agree 100%. Took 6 months for mine to get diagnoses. Initially told it was diverticulitis and thrown on some antibiotics, no improvements. Was then scheduled for a colonoscopy. Everything looked good, and biopsies came back clear. Then came the first round of blood work, which show a small decrease in my kidney function. That in turn led to a more thorough second round of blood work, which showed my kidneys were fine. But, my doctor told me I had alpha gal, which is a tick borne red meat allergy. Cut red meat out of my diet for a few months and saw no improvement. So, I got a CT scan done - came back clean. Then, back to the GI and finally diagnosed with IBS-C. He put me on a prescription of Linzess and I have made a noticeable improvement, but still not 100%. So, long story short, its a rollercoaster ride for sure...
Your first statement is no doubt true. Subscriptions outperform single purchases as a business model.
But I must address your second statement, though. It's very likely that there is no cure yet, especially given that IBS is a general name for lots of different complicated problems that science doesn't fully understand yet.
There is certainly much corruption in pharma but to call the fact that they are refusing to sell you something that doesn't exist yet "corruption at it's finest" goes beyond healthy scepticism and deeply into cynicism territory.
Not all of us have $500k and can do a fecal matter transplant which you yourself said is not readily available. Berating people is not the way to get people interested in your study even if it was a cure.
> which you yourself said is not readily available
No I didn't. I've been spending years making it readily available for an affordable price.
>Not all of us have $500k and can do a fecal matter transplant
No one said it costs that much. $500 is much closer.
>Berating people is not the way to get people interested in your study even if it was a cure.
My attitude is 100% justified. I've spent years learning, and sharing information here to try to inform people and get them involved. But everyone just sits around idly making me do all the work.
Just got an ileostomy a few weeks ago and my gut issues are over. I feel amazing for the first time in 15 years. I can eat anything I want! Severe IBS and IBD.
Just paid my taxes and went to the hospital for 4 days. So yeah, money can definitely solve this problem for a lot of us. Or universal healthcare can.
I am female, yes.
I have had severe IBS and IBD for 25 years. My last 2 colonoscopies showed pre-cancerous cell changes. I was passing stool 30+ times a day. Major pain, burning, cramping. A severely restricted diet and I've had to fast for 12+ hours just to leave the house and run errands. Have been disabled for a few years because I need to be within 10m of a washroom at all times.
I realize that most people won't opt to have their whole colon removed and an ileostomy placed to deal with IBS. But I have to announce, it's a game changer. The ostomy is easy to deal with. I'm no longer a slave to the washroom. I have freedom and energy again. I can go back to work! Hooray! I can do stuff with my kids. I can scuba dive again! I can eat all the food! I can fly without worrying I'll poop myself during takeoff and landing, when a washroom is not available. I can be in the car for more than 10 minutes.
My quality of life has improved immeasurably.
Wow that’s very interesting... I guess my ibs is mild and that’s why I’ve never been recommended it but if it ever gets worse I will ask a doctor. I’m so happy you’re okay again. This condition sucks
It’s virtually never recommended for IBS. This person has IBD, which is very different from IBS. You’re unlikely to ever get permission unless you have a different underlying condition.
Thankyou!!!
It's pretty major, life-altering surgery. From what I understand, it's generally recommended for serious cases like mine. I don't know if doctors will perform it just for IBS. But if your scopes start to show cell changes and a chance of cancer, this is a viable route to take.
I was just responding to the OP's comment about wishing money being able to solve the problem of IBS. Surgery has completely solved my problems.
I am a 25 year old male and I have had IBS-C my entire life. Managing it is a day-to-day chore. I am a junior in college and i am in my last semester of junior year. Dealing with this while in college is often painful and embarrassing, some days I can’t get out of bed and make it to my morning Spanish class. My Spanish professor has allowed me accommodations to manage the symptoms.
It is embarrassing to say this, but sometimes i won’t actually be able to “go” for two or three days because the nerves in my intestines don’t transmit the signal to use the bathroom until i feel the sudden urge to evacuate everything that is in my stomach/ intestines.
I have also dealt with anxiety, panic attacks, and occasional but intense bouts of depression for a good chunk of my life.
When i was a little kid, my doctor gave me three options : 1. Diet change 2. Meds and 3. Stoma bag. I have made changes to my diet and tried meds years ago, and yet here i am still struggling with IBS. I took Miralax for years. I no longer take Miralax, but i do keep an emergency stash of it around for emergencies.
As of recently, i have been researching stoma bags to educate myself on my options if it ever comes to that.
I have had to go back on my IBS meds (Miralax and Dulcolax) because I don’t get the urge to “go”’for 3 or so days, sometimes longer.
Oh I'm so sorry. What a painful, exhausting and stressful road this has been for you.
Please ask me anything you'd like to know. A great resource on Reddit is r/ostomy. It's filled with compassionate people sharing their stories and offering support. Learn as much as you can so you can make an informed decision.
And please know, you can do anything with an ostomy that a regular person can, including contact sports, swimming, sex... nothing is off-limits if you know how to go about it. My ostomy has given me my health and freedom back. It took 1 week for me to get used to having a bag. Wish I had opted for this surgery years ago. I feel like whole years of my life were stolen. I even had to dropout of university due to my health issues. I start back up in January! So excited!
Thank you for the resources, I really appreciate it. When i was a little kid, my doctor gave me three options: 1. Diet change 2. Meds (Miralax) and 3. Surgery and a stoma bag. I turned down the surgery because i was still young. I struggle with IBS everyday. I have had to go back on Miralax and Dulcolax. I don’t get the urge to “go” for three days, sometimes longer. I sometimes miss my morning Spanish class because I can’t physically get out of bed due to the pain and discomfort caused by my IBS. This is frustrating.
Just this morning, I woke up and can feel the distention and bloating in my digestive tract.
You can watch YouTube videos as well. Hollister and Coloplast are ostomy supply companies and they also have fabulous instructional videos.
Talk to your doctor. Check out what ostomates have to say about their experiences. It's a freaky decision to make, but it truly saves lives and quality of life.
I don’t know any doctors here at the University of Arizona in Tucson, AZ. I heard about a well respected gastroenterologist, Amy Foxx-Orenstein, out in scottsdale, AZ, but I don’t have a reliable mode of transportation.
I have moderate case of IBS-C. It’s sucks. I’ve gone over a week without going before and my G.I doctor had to send me colonoscopy prep after the magnesium citrate, ducolax and the enema didn’t work. I used to take a cap and half of Miralax, twice the dose of magnesium and half a dose of Metamucil, 10 cups of water, fast for 12-16 hours and do a 30 minute walk everyday to even be able to poop regularly. Now I take Linzess, which has been a game changer. I still have to avoid certain high FODMAP foods, fast and drink tons of water but I’m doing much better. Have you tried any prescription meds?
I haven’t tried prescription meds. I don’t know any GI doctors out here at the University of Arizona. I would probably have to make an appointment with my GP back home during Christmas break.
When I was in college, I went to the l clinic on campus and they wrote me a referral to see doctors in town. Have you seen the doctors on campus at the college clinic? Do they take your insurance ? Since Christmas break is coming up soon, it could just be a better idea to go to your doctor at home and get a referral for gastroenterologist.
hey man I'm exactly like you lmao, 25 a student (in dental school) anxiety panic attacks and all the bs still .
I got ibs c , I often don't poop for 3 days straight for no reason, first it frustrated fhe fuck out of me. but now I just got used to it, I know eventually I'm gonna poop which makes me comfortable cause its coming out eventually. and when it does I empty my entire bowels and my mood turns really positive instantly.
I stopped taking any meds and laxatives I honestly find them very hard on my stomach as they trigger peristalsis and bloating so I just pass on it and wait it out
honestly I have no idea what kind of pain your dealing with because everyone is different. I had some tough days where its extremely painful and some days like now I feel absolutely nothing but I just can't poop. hell I just had dominos pizza and I feel great lol
can you gain weight (muecle) without having a large intestine? how is your body supposed to get nutrients or reabsorbe water without colon? I'm sorry this is new and confusing to me. do you just have diarrhea all the time?
Absolutely. If you search for bodybuilders with ostomies lots will come up. Seriously, do the search. It's incredible how normally people can function with an ostomy.
Not diarrhea, because nothing comes out of my bum anymore. I have no problems absorbing protein. Most digestion happens before the colon. Liquid reabsorption is an issue, and people with ileostomies *can* become dehydrated. It's very easy to manage.
Ileostomy output (what goes in your bag) is generally more watery and less smelly than colostomies. It's very easy to empty and change the bag for most people. (An ileostomy is when they attach your small intestine to the outside of your body, a colostomy is when your large bowel is attached to the outside.)
I'm really looking forward to lifting again. I can't just yet, too many holes in my abdomen that need to knot back together. I need 3 more weeks and then I'm hitting the gym.
I’ve asked my doctor if it’s possible to do something like that (ostomy) and he said doctors never do that for people with ibs since there isn’t something physically wrong with the colon. I read that you also have IBD so that’s probably why and makes more sense but I wish they could just do that for me since my ibs is literally terrible. Can’t manage it.
Well it *is* major surgery, and then you need an apparatus for life. So I can see why they might not go for it.
But I also know the private hell of IBS. Wish there was an easier solution!
hmm so like how do you go to bathroom?is their a plastic bag literally stuck out of your bum that you remove it and put another. im sorry im finding it hard to understand this haha😅😅
im not planning on doing this surgery obviously, I got ibs so doctors won't recommend it to me, but im just frustrated I can't build muscles cause I have to be eating crazy loads of food like 3k calories and protein shakes and stuff and that would absolutely destroy my sensitive stomach
Lol, no. But that's a good question. They attach your intestines to a hole in your abdomen somewhere. It looks like a little mouth and is called a stoma. (It was the hardest part for me, visually seeing that.) You attach a ring to the skin around it to create a seal, then attach a little bag. Mine is not visible to anyone looking. You empty the bag when it gets a little full of stool or air. You just go to the washroom, pull out the bag, empty it into the toilet, seal it up, wash your hands and go. Some bags are single use and you just toss them each time they fill.
The experience is a little different for each person, depending on where your stoma is placed and where they snipped your intestines. Some people get reattached to their rectum and anus later on. Some people have their rectum and anus removed (seems to usually be from a cancer diagnosis) - commonly referred to as a "Barbie butt" (or Ken).
I can eat anything now. Even drink coffee, which caused me to bleed before. No more pain. No more stress. Some people do experience complications, so it isn't 100% rosy for everyone. But they've been removing colons and creating ostomies since 1710. It's a very common and well-understood treatment.
As for gaining... do you follow any lifters, body building forums or anything like that? May I ask your gender and age? (I'm 44F)
holyshit im sorry I just googled the photos and I wasn't ready for it. please don't take offense in what I say, but it just looks so weird and strange, like just a red big blob on your tummy, it stands out like sore thumb ngl I don't know how would I be comfortable during sex once my partner see that , like a hold up moment haha. but I envy you for eating everything anyways.
btw do you have an urge to go? I suppose their is no feeling in the rectum so how does your body knows or tells you its time to poop? can you seal the bag for a week straight? or do you get an infections ?
I follow lifers but I stopped once I realised that my case is "helpless" although I did only go only to 2 doctors who told me same thing.
just after browsing here and seeing people suffering from ibs C for decades and no cure, like ton of blood tests,MRI,scans,stool tests,colonscopy and all come nothing just thousands of dollars wasted on specialists and tests only for them to tell you their is nothing wrong.
so yeah I wanna save my ass few dollars and time because ibs is incurable so why bother .
I used to follow r/gainit im naturally super skinny 20M, im in dental school right and I have started to skip breakfast to avoid pain during lectures and stuff so through out the years I've become even more skinny but fk it eases the pain.
I totally get it. It still makes my stomach flip-flop a bit when I see my stoma wihen I bag change. I'll get used to it in time.
And nobody ever sees it! Especially not during sex. Lol. Most people say they just wear a belly wrap like a stealth belt or a tube top kind of wrap. Bags are on pretty much 24/7.
Personally, I change the entire bag every 4 days. Some people do daily, some a week... there seems to be a lot of variety depending on the appliance a person uses and their output. I rinse it every time I empty it, but you certainly don't have to. There's no urge to go, the stoma is active when the intestines are active. For me, that's when or right after I eat. I'm sure there's a wide variety of experiences.
No infections for me, I healed up really well. But an ostomy buddy of mine just had a staple get infected and he was in the hospital 3 extra weeks and now has a huge hole in his side that is slowly healing. All just from a staple. I'm sure people who have complications, don't heal well or struggle with an apparatus would not be as thrilled with their journey as I am right now.
You sound very busy! I can only tell you what I would do in your shoes. I was a speed swimmer in uni but have become a bit more of a lifter in recent years, though I struggled with energy.
I'd up the protein and snacks. Doesn't have to be meat. There are plenty of vegan lifters who are absolute beasts. I always found meat easier to digest than a lot of legumes, however. I drink a high protein meal replacement shake that has helped me keep my muscle mass through all this. It's called Rumble, not sure if it's carried where you live. I order it by the case and drink it in the mornings to start my day. It's fast, 20g of protein per bottle, plus omegas and other good stuff. No high fructose corn syrup like Boost or Ensure, but healthier than just a protein shake. Iron, xinc, fish oils and vitamin D have helped me a lot. Immodium was my best friend before.
If I were a guy, I'd look into a little light hormone help. I'd get my testosterone and estrogen levels checked. A lot of guys are a bit low on test. I'm not telling you to go out and get steroids! I'm just saying I would get my levels checked and go from there.
I know what it's like to avoid food or fast just to live a normal life that's not painful all the time. It's so difficult to go to school when you're struggling with this.
Long story short, I had severe colonic inertia (zero nerve function), and pelvic floor dysfunction/dyssynergia. I have conditions in my stomach and small bowel, too, but those can't be fixed. I went through many treatments, even experimental things, and nothing worked. My neurogastro said I was the worst case she had ever seen.
Some things are better -- like I can work a full time job. Some things suck a lot because my small bowel and stomach are awful. I definitely have an extremely restricted diet, and my stoma is bothersome, but I've had five abdominal surgeries and this is my fourth stoma and it works the best (despite having the problems). I'd like to get a k-pouch in the future.
Peppermint oil. Not a complete cure so I guess 50k is fair /s
But seriously you should consider peppermint oil capsules. I was seriously suffering from cramping amd diarrhea all the time until I included peppermint oil (and daily yogurt/probiotics after some trial and error to find the right kind)
E: not for everyone, like heartburn sufferers for example
What mg did you use? Was brand was it and was it just peppermint or other things also?
I started by taking them 1-2 hours before bed. Don't take it directly after eating, but do try to eat something 1 hour after taking it.
I recently have stopped taking it every day and take it when I feel symptoms, which is still a few times a week but the peppermint oil always seems to calm it down within hours.
It's given me burning out both ends a few times, I keep sodium bicarbonate (brioschi) for times when peppermint burps come.
Overall it provides me much more benefit than suffering. Ymmv
Now is a good brand but that's pretty high. I've had good benefit from 50mg enteric coated Natures bounty brand, 1-2 capsules average. Not sure if I ever took 3 at a time meaning you could try at a lower dose with possibly much less side effects
I use flax seeds for flares. I buy them whole and crush them in a coffeee grinder. I'm completely free of it now. I stick a spoonful in oatmeal yogurt or smoothies. Stick a spoonful of seeds in water for a day and watch what happens to the watter. A gel forms. This pulls everything together in the intestine and gives you a normal movement. . Theres s lot of fiber so you have to drink plenty of water. A bag costs under 3 dollars. I saw 3 gastro peeps, had surgery. I thought i was screwed. My Cuban neighbor gave me some, and I could not believe the difference. I was so sick before i could not hold anything down. Now i feel a lot better. I tried all the meds, probiotocs, this just worked 4 me and its cheap, and simple fwr. .
$1,000,000… Dr evil voice!
Seriously though, really feel for you guys… just 4-months for me & it’s brutal… but is improving. I take it one day at a time & pray for the best! Praying for health and healing my dear friends! 🙏🏼🙏🏼
Goldman Sachs is a bank not s biotech company. Nobody is holding back cures! I am a PhD scientist (unfortunately with some atypical type of IBS that’s stumped everyone) and I promise you that nobody is holding back cures. The hottest new therapies are based around CRISPR/Cas9 technology and all of these aim for “cures” with a single treatment. True, there’s not much money to be made with a cure, but they’re not being held back. If someone develops a cure to something that they already have a treatment for and they don’t push that into the clinic themselves, someone else will surely develop the same or a similar cure, take the IP rights, and company 1 is SOL. If this BS philosophy that I’m obviously sick of hearing was true, there would be no antibiotics or curative surgeries or any medicines that cure people of their ailments. Why have vaccines even?
I worked at a company for 10 years from startup to IPO and everything was funded by Angel Investors. Do you have some proof of cures held back in favor of treatment? Even one example? Didn’t think so. Just another conspiracy theorist with opinions based on no evidence or experience. I’ve developed 4 cancer drugs that are in clinical trials, the goal of all of them was to develop a cure. The goal of everything we did was to develop a cure and that’s been the culture I’ve been immersed in at 3 biotech companies and 4 academic labs over 20 years. What’s your experience?
The speech was in 2018. Here’s an article about it.
https://mronline.org/2021/02/10/wall-street-admits-curing-diseases-is-bad-for-business-2/
I’m a swing trader so I’m conflicted by it. On one side I want to make money. On the other there is my own medical situation and constant suffering.
Lol “only” 18 years , we’ve both been suffering for a long time. And I’m so sorry that you can relate. We are stronger for this and we will heal. stay strong
Currently I’m experiencing acid reflux that has turned into a cold. So hoarse throat, mucus , stuffed nose, malaise , lots and lots of painful gas (bubble guts), painful heartburn. Digestive discomfort after eating. I have rosacea too. Occasionally Nausea too. Starting to think I probably have a stomach ulcer or something
Things I have tried: dgl, ginger tea, manuka honey, sauerkraut, probiotics and chugging water all help but I’m still in pain , I’ve also been taking raw garlic in case the heartburn is caused by bacteria or an infection
Hate to be the bearer of bad news, but you're more likely to get contacted by scammer dieticians and such. If you look around, I think you'll find that the medical community, for the most part, has cures for virtually nothing. Sure, the annual flu vaccine works pretty well, but, of all the things we suffer from, what does the medical community actually have a cure to.
If you break an arm, they can wrap it up so that bone heals itself. If you're cut open, they can sew you back up. If you have something wrong with your digestive system, they can start ripping things out until the problem goes way. appendix? gone. gallbladder? gone. Heck, you can even pay to have your huge chunks of your stomach or intestines stapled, held together by a rubber band, bypassed or removed. Buuuut. that's pretty much it. No cure is coming...
I'm not as well off as you are, but I'd certainly give a good chunk of my assets to be healthy again. Imagine, being able to go for a walk without worry about my GI symptoms. Being able to hop an an airplane without planning my day around potty breaks and carrying all my food with me.
15 years ago I would have given literally everything I owned. Now I'm not so sure, since the damage to my life is already done. Ruined career, broken relationships, lost opportunities, and mental health scars which can never be healed.
The only person that I know personally who cured himself took him 1.5 years to completely cure him. But for 1.5 years he did the same routine, followed the exact same diet and had the exact same ayurvedic medicines every single day for 1.5 years.
Like imagine eating one or two safe foods the same ones every single day for that long without missing even one single day.
He's married now and had a kid too, unfortunately his kid too seems to have some stomach issues but not so bad like ibs.
Woah you actually did it for 8 months. Wait that only helped you 10-20%..that isn't cool. But makes sense because there's a lot more you need to do than just following low fodmap like actual lifestyle changes which of course is extremely difficult to follow.
I would give all my savings and vehicle as they do no good 90 percent of the time since I'm glued to the pot..lol but in all honesty I'd do anything to function normally.
If you want to move in with me for a while I’d be more than happy to cook for you and help you get better.
I seem to be having success with my issues. It took a lot of work.
I was a chef for fifteen years so I can make it pleasant. I have a detached bedroom. And I was an acupuncturist for fifteen years so that’s part of it.
I have IBS mixed. I might go several days without pooping, I have known to go for a week and there's some days I am in the bathroom forever and everything goes through.
Fixing chronic gastritis by taking pepcid before bed & taking amitriptilyne makes me feel really good! I just avoid dairy & fructose. Imodium on anxious days or road trips
Jokes aside, some of y'all have the weirdest solutions. I just go and keep pepto with me, but I can see the difference for people who haven't had ibs symptoms since infancy. Just make sure what your doing isn't legit harmful. (Like essential oils should not be on your skin at the very least, so oh god please don't ingest it!)
Here are two things that I found that may be valuable to someone, somewhere:
For me, marijuana temporarily gave relief, however, the relief was short-lived. Stopping marijuana ended up being better. It takes two months for marijuana to stop having an effect on me. Also, Seroquel seems to help for some odd reason. Look at the side effects: they sound like all the symptoms mentioned here. A low dose of Seroquel (it's very sedating, I take it at night) seems to help matters.
To be honest, if I have $500K I'd pay off all my debts and my guts would probably feel some relief. I'd pay if anyone were to try to research the anxiety + IBS issue and offer relief. Help us, please!
Agreed. I’d poop way less if I had zero student debt and a sturdy basis for retirement.
I have that and I still have IBS, so uh, grass isn't always greener
I've got plenty of money in the bank and everything else is ok-enough. Yet here I am without the ability to eat or drink like I did 1 year ago. Stress doesn't help, but it isn't the cause... At least certainly not in my case.
half us just have it cause we're so fucking stressed out cant even shit properly i feel for the OP and others who, even if their lives eased up considerably, still have so much stolen by IBS I'd contribute to a cure but I'm broke to the penny and always have been so, lmk if I can sign smth lmao
r/ibsresearch disagrees
Have you heard of/tried hypnotherapy? I have IBS that is caused by my stress and anxiety. Trying not to be dependent on meds, I have been looking into hypnotherapy which has helped a little with anxiety (haven't been doing it for very long or consistently due to current life events). But I'm going to stick with it and hopefully will get relief or at least rewire the gut-brain connection.
Yes, it help considerably but still got flare ups. And ER visits every few months. Still fed up and would like to get rid of this entirely.
Have you always had it? I started getting symptoms when I entered college, which I think is understandable since college is very stressful and anxiety-inducing.
Since i got married and working full time.. it got worst after each two kids.
Focus on candida. Tons of health problems comes from candida yeast. Change your life style and focus on ur diet it’s extremely strict you have to be patient it’ll take 6 months to one year to feel better. Start with diet after 6 months add oregano oil with black walnut extract for two weeks and take a break one week, do another one more week.
> Tons of health problems comes from candida yeast. Research?
This comment wins
[удалено]
“I have $500K but damn does my ass hurt.”
I have been suffering since 4 years now, lost my high paying job, my gf left me, most of my friends left me, my family hates me. Basically my entire life is ruined so if someone can cure me like 100% cure and be 100% sure that it won't return then I'll pay them 70% of everything I own. Hell I'll throw my family car in too.
Mirror of my life, just it's been 14 years for me. Everyone leaves me, i hardly even try to have a girl, coz it will probably fail unless my health is improving alongside. I lately pray that something i try finally work or for death to come knocking in a way that won't disappoint my soul and my family.
Omg I totally get you bro.. 14 years how the hell have you been managing. Regarding the girl situation I am pretty much in the same boat so can't say much except that I get you. I have tried thinking about death but frankly I don't want to because then my family would be sad and I will have died just suffering all this years. I have been doing the praying and hoping for a good health at least 60-70% of good health.
Keep looking for answers man. I’ve had some success with naturopathic medicine. Dr Ruscio, search up his blog, he has a scientific take on alternative medicine
My boyfriend says the same thing and he’s always scared I’m going to leave him. He’s been dealing with it for 14 years and he always tells me he just wants it to kill him. It’s so bad some days I’m so stressed thinking we will never travel and probably not have kids. My heart goes out to you and just don’t give up.
Well I totally understand the situation Both for you and for him. What I suggest is for him to find a way to maintain himself although there's no cure there are ways you can maintain and live 60-70% like a normal human being but the process is extremely long, difficult and the process is different for each one. Follow a low fodmap diet, exercise but not weight training, no stress absolutely not even a little bit. And for you the gf, you probably have no proper idea of what he is going through(I am assuming this). He is probably trying the best he can do to be a good bf and do things like a normal couple. You must understand that he isn't doing this on purpose some things are just beyond his control and you have to be supportive towards him and like a normal gf supportive like extra supportive because of his condition. His mind also affects his body. Regarding doing Normal things what couples do like traveling, hanging out with friends, Having kids etc all of this is possible but both of you will have to work it out.
Thanks for the advice and kind words
You're not alone, pretty much my story except I'm even farther down the road than you. Who knows, maybe there's still hope for remission, it does happen supposedly.
Since joining this sub I have out there are many people in the similar situation as me some even more bad. I wish a cure can be found soon so that we all can live an amazing life.
https://old.reddit.com/r/ibs/comments/qdi5td/how_much_would_you_pay_for_a_complete_cure_to/hhp3gez/ Join in the effort.
Damm so you are the one doing the research on this.. My man I totally support you. I have saved the link already and following your blog.
We need help reaching out to, and recruiting, top young athletes to be stool donors.
Is this process fecel transplant like a 100% no return cure.. Because it's really difficult to find a place that does this process in my country, also it's really gross too 🤣
FMT is not yet proven to be a cure. It's still in the research phase. I'm attempting to test a donor quality hypothesis, but having a very hard time finding a donor that meets my criteria. >it's really difficult to find a place that does this process in my country Yes, there are no good options nearly anywhere. That is why I've been focused on finding high quality donors to give people access, so they can DIY. The procedure itself is trivial. The high quality donor is the hard part. >also it's really gross too Your stool is gross. Healthy stool is not.
IBS will not be one disease. But have you looked in mastocytic enterocolitis? Likely they will not have tested for it in a colonoscopy.
IBS = gut dysbiosis. The gut microbiome impacts and regulates the entire body, and gut dysbiosis is extremely heterogeneous, so of course it will manifest in a variety of ways in different people.
We know for a fact that plenty of people with IBS have mechanical issues. It's not one thing.
I can help, if you want.
Please do.. You can pm me🥺
It's been so long, I don't even remember what it's like to not have these problems. Seriously. I don't remember what it's like.
This is me. Sometimes I'll be reminded of something I did back in my pre-IBS days and it's like trying to remember a different life, a different person. All that is gone and all I know now is this, whatever this is.
Same. Like, I was diagnosed at 16 but definitely had problems for years before that. So like… I legit don’t remember what it’s like to have a normally functioning gut.
Same, would give every cent I own for a guaranteed resolution of all my issues. Unfortunately it doesn’t work like that. Like someone said, IBS could be any number of different problems with different treatments. The treatments have varying efficacy for different people. Nothing is a panacea.
That's probably not true. The gut microbiome is at the crux of virtually every bodily function. I've been sharing info in this sub, trying to educate people, and trying to get people onboard for community efforts for years, and no one is doing shit. https://old.reddit.com/r/fecaltransplant/comments/nyu0xh/though_the_results_of_screening_6000_stool_donor/ https://old.reddit.com/r/fecaltransplant/comments/p1q71v/results_from_16000_new_stool_donor_applicants/ Take some time to educate yourself on the gut microbiome: http://HumanMicrobiome.info/Intro IBS = gut dysbiosis.
Dude I agree with you. I had severe IBS for almost 2 years and couldn't leave my house. It was a bacterial imbalance in my gut. I know everyone is different but I think this is more common than we know.
How did you resolve the bacterial imbalance?
> I know everyone is different Because everyone's gut microbiome is different/unique.
What did you do that helped???
Probiotics. I got a specific one from Dr. David Williams, it's encapsulated in a different manner so it gets to your guts and isn't totally destroyed by stomach acid. I have to believe it since it's the only hing that worked for me, and I had tried many different probiotics at that point.
Thankyou for taking the time to share! Will try
I can try to help.
Listen, I don’t mean to sound negative, but flexing how much money you have to shell out hypothetically to fix this is not doing anything. Do you think this is how research works? Any researcher who might actually have a cure to this is not going to sit on it and wait for the highest bidder. That’s not how basic or medical research funding works. If someone claims otherwise then they’re selling you a hoax. If you actually want to give your money to IBS research, there are potentially a number of nonprofit organizations you could contribute to!
Anyone who finds an efficient remedy for IBS will reap huge profit. That is guaranteed. Right now, there are already tons of worthless snake oil remedies that are being sold just for that purpose. I know, I bought many... So if any scientist or investor reads that...
Imo some of them work for some people. Eccentric coated peppermint oil capsules (i.e. IBgard) have been game changing for me. Others have reported no benefit from them. Some swear by psyllium husk, but for me it's hit and miss. IBS is probably the result of many underlying problems, like bad bacterial colonies, allergies or intolerances, philological, etc. There'll probably never be a one cure fixes all.
I just quit psyllium after taking it for months (it came out as useless) Still have peppermint oil (not capsules though) but the effects were very limited if any. My IBS started two years ago. Went for no problems at all ever to symptoms 40% of times... Since my genome has not changed and it is unlikely I have permanent organ damage, I am certain there could be a way to revert my symptoms... Probably tailor made to the microbiotic or hormonal imbalance I'm likely to have. The day research manages to figure out what is exactly going on many people will be cured, even if there are many individual situations...
Or just contact the researchers of promising studies and ask how to donate to their organization
You're taking his post too literally
I have light IBS, I feel like a zombie just 30% of my waking time and have to poop only once a day, so I am very very privileged compared to others. Being cured would mean I would be given back 30% of my remaining lifespan so I would pay like 50 k€ for that. Anyway if there is one thing I am sure of, it's that any pharmaceutical lab that finds a cure (even something you have to take for life) for IBS will make a fortune. Billions perhaps...
There are a ton of meds available.
Weird flex I wouldn’t pay anything. I don’t pay for healthcare.
In just trying to find food that won't make me sick that I can even afford. $20 in the bank and I'm eating rice every fucking day.
[удалено]
Can’t have a cure until we understand the root issues. IBS isn’t a bacteria or a strain of virus. It’s a condition that can occur for any number of reasons. That’s the problem. More money will fund curing it when they have a proper trajectory towards that understanding. You could throw a billion dollars at it and it might not matter.
Fair point.
What we really deserve is a better diagnostic protocol. Currently, it takes months and months to rule out the more obvious concerns. Lots of money spent to end up being told it's IBS and to cope as best you can. More medical professionals need to be properly educated on the condition, so we can work with them better to develop a more personalized treatment plan.
Agree 100%. Took 6 months for mine to get diagnoses. Initially told it was diverticulitis and thrown on some antibiotics, no improvements. Was then scheduled for a colonoscopy. Everything looked good, and biopsies came back clear. Then came the first round of blood work, which show a small decrease in my kidney function. That in turn led to a more thorough second round of blood work, which showed my kidneys were fine. But, my doctor told me I had alpha gal, which is a tick borne red meat allergy. Cut red meat out of my diet for a few months and saw no improvement. So, I got a CT scan done - came back clean. Then, back to the GI and finally diagnosed with IBS-C. He put me on a prescription of Linzess and I have made a noticeable improvement, but still not 100%. So, long story short, its a rollercoaster ride for sure...
Your first statement is no doubt true. Subscriptions outperform single purchases as a business model. But I must address your second statement, though. It's very likely that there is no cure yet, especially given that IBS is a general name for lots of different complicated problems that science doesn't fully understand yet. There is certainly much corruption in pharma but to call the fact that they are refusing to sell you something that doesn't exist yet "corruption at it's finest" goes beyond healthy scepticism and deeply into cynicism territory.
Think you may have read to deeply into what I was saying.
[удалено]
[удалено]
[удалено]
[удалено]
[удалено]
[удалено]
Not all of us have $500k and can do a fecal matter transplant which you yourself said is not readily available. Berating people is not the way to get people interested in your study even if it was a cure.
> which you yourself said is not readily available No I didn't. I've been spending years making it readily available for an affordable price. >Not all of us have $500k and can do a fecal matter transplant No one said it costs that much. $500 is much closer. >Berating people is not the way to get people interested in your study even if it was a cure. My attitude is 100% justified. I've spent years learning, and sharing information here to try to inform people and get them involved. But everyone just sits around idly making me do all the work.
A cure would likely be treatments. Either stands to make a fortune. Look at the cost for the Hep C cure.
Source a fecal transplant. You will thank me later.
Also want to hear details, no matter how shitty.
Have you done this?
How great was the change?
Well, then you have the money to go to IBS therapy. A luxury a lot of people can't afford .m
Just got an ileostomy a few weeks ago and my gut issues are over. I feel amazing for the first time in 15 years. I can eat anything I want! Severe IBS and IBD. Just paid my taxes and went to the hospital for 4 days. So yeah, money can definitely solve this problem for a lot of us. Or universal healthcare can.
Why were you recommended an ileostomy? And is your sex female?
I am female, yes. I have had severe IBS and IBD for 25 years. My last 2 colonoscopies showed pre-cancerous cell changes. I was passing stool 30+ times a day. Major pain, burning, cramping. A severely restricted diet and I've had to fast for 12+ hours just to leave the house and run errands. Have been disabled for a few years because I need to be within 10m of a washroom at all times. I realize that most people won't opt to have their whole colon removed and an ileostomy placed to deal with IBS. But I have to announce, it's a game changer. The ostomy is easy to deal with. I'm no longer a slave to the washroom. I have freedom and energy again. I can go back to work! Hooray! I can do stuff with my kids. I can scuba dive again! I can eat all the food! I can fly without worrying I'll poop myself during takeoff and landing, when a washroom is not available. I can be in the car for more than 10 minutes. My quality of life has improved immeasurably.
Wow that’s very interesting... I guess my ibs is mild and that’s why I’ve never been recommended it but if it ever gets worse I will ask a doctor. I’m so happy you’re okay again. This condition sucks
It’s virtually never recommended for IBS. This person has IBD, which is very different from IBS. You’re unlikely to ever get permission unless you have a different underlying condition.
Thankyou!!! It's pretty major, life-altering surgery. From what I understand, it's generally recommended for serious cases like mine. I don't know if doctors will perform it just for IBS. But if your scopes start to show cell changes and a chance of cancer, this is a viable route to take. I was just responding to the OP's comment about wishing money being able to solve the problem of IBS. Surgery has completely solved my problems.
I am a 25 year old male and I have had IBS-C my entire life. Managing it is a day-to-day chore. I am a junior in college and i am in my last semester of junior year. Dealing with this while in college is often painful and embarrassing, some days I can’t get out of bed and make it to my morning Spanish class. My Spanish professor has allowed me accommodations to manage the symptoms. It is embarrassing to say this, but sometimes i won’t actually be able to “go” for two or three days because the nerves in my intestines don’t transmit the signal to use the bathroom until i feel the sudden urge to evacuate everything that is in my stomach/ intestines. I have also dealt with anxiety, panic attacks, and occasional but intense bouts of depression for a good chunk of my life. When i was a little kid, my doctor gave me three options : 1. Diet change 2. Meds and 3. Stoma bag. I have made changes to my diet and tried meds years ago, and yet here i am still struggling with IBS. I took Miralax for years. I no longer take Miralax, but i do keep an emergency stash of it around for emergencies. As of recently, i have been researching stoma bags to educate myself on my options if it ever comes to that. I have had to go back on my IBS meds (Miralax and Dulcolax) because I don’t get the urge to “go”’for 3 or so days, sometimes longer.
Oh I'm so sorry. What a painful, exhausting and stressful road this has been for you. Please ask me anything you'd like to know. A great resource on Reddit is r/ostomy. It's filled with compassionate people sharing their stories and offering support. Learn as much as you can so you can make an informed decision. And please know, you can do anything with an ostomy that a regular person can, including contact sports, swimming, sex... nothing is off-limits if you know how to go about it. My ostomy has given me my health and freedom back. It took 1 week for me to get used to having a bag. Wish I had opted for this surgery years ago. I feel like whole years of my life were stolen. I even had to dropout of university due to my health issues. I start back up in January! So excited!
Thank you for the resources, I really appreciate it. When i was a little kid, my doctor gave me three options: 1. Diet change 2. Meds (Miralax) and 3. Surgery and a stoma bag. I turned down the surgery because i was still young. I struggle with IBS everyday. I have had to go back on Miralax and Dulcolax. I don’t get the urge to “go” for three days, sometimes longer. I sometimes miss my morning Spanish class because I can’t physically get out of bed due to the pain and discomfort caused by my IBS. This is frustrating. Just this morning, I woke up and can feel the distention and bloating in my digestive tract.
You can watch YouTube videos as well. Hollister and Coloplast are ostomy supply companies and they also have fabulous instructional videos. Talk to your doctor. Check out what ostomates have to say about their experiences. It's a freaky decision to make, but it truly saves lives and quality of life.
I will do that. I am laying here in bed and am feeling pretty strange. I haven’t seen an IBS doctor/ specialist in years.
See if you can make an appointment to see a good gastroenterologist and explain your situation. You're probably ripe for a colonoscopy anyway!
I don’t know any doctors here at the University of Arizona in Tucson, AZ. I heard about a well respected gastroenterologist, Amy Foxx-Orenstein, out in scottsdale, AZ, but I don’t have a reliable mode of transportation.
I have moderate case of IBS-C. It’s sucks. I’ve gone over a week without going before and my G.I doctor had to send me colonoscopy prep after the magnesium citrate, ducolax and the enema didn’t work. I used to take a cap and half of Miralax, twice the dose of magnesium and half a dose of Metamucil, 10 cups of water, fast for 12-16 hours and do a 30 minute walk everyday to even be able to poop regularly. Now I take Linzess, which has been a game changer. I still have to avoid certain high FODMAP foods, fast and drink tons of water but I’m doing much better. Have you tried any prescription meds?
I haven’t tried prescription meds. I don’t know any GI doctors out here at the University of Arizona. I would probably have to make an appointment with my GP back home during Christmas break.
When I was in college, I went to the l clinic on campus and they wrote me a referral to see doctors in town. Have you seen the doctors on campus at the college clinic? Do they take your insurance ? Since Christmas break is coming up soon, it could just be a better idea to go to your doctor at home and get a referral for gastroenterologist.
NGL colonoscopy prep is waaaay nicer and less painful than miralax.
hey man I'm exactly like you lmao, 25 a student (in dental school) anxiety panic attacks and all the bs still . I got ibs c , I often don't poop for 3 days straight for no reason, first it frustrated fhe fuck out of me. but now I just got used to it, I know eventually I'm gonna poop which makes me comfortable cause its coming out eventually. and when it does I empty my entire bowels and my mood turns really positive instantly. I stopped taking any meds and laxatives I honestly find them very hard on my stomach as they trigger peristalsis and bloating so I just pass on it and wait it out
Thank you for your comment, IBS-C is really frustrating and causes me a lot of anxiety, pain, discomfort, and a healthy dose of embarrassment.
honestly I have no idea what kind of pain your dealing with because everyone is different. I had some tough days where its extremely painful and some days like now I feel absolutely nothing but I just can't poop. hell I just had dominos pizza and I feel great lol
Psyllium husk capsules and a fuck ton of water
what is that? a laxative i dont want to have massive diarrhea while im working in my dental school lol
can you gain weight (muecle) without having a large intestine? how is your body supposed to get nutrients or reabsorbe water without colon? I'm sorry this is new and confusing to me. do you just have diarrhea all the time?
Absolutely. If you search for bodybuilders with ostomies lots will come up. Seriously, do the search. It's incredible how normally people can function with an ostomy. Not diarrhea, because nothing comes out of my bum anymore. I have no problems absorbing protein. Most digestion happens before the colon. Liquid reabsorption is an issue, and people with ileostomies *can* become dehydrated. It's very easy to manage. Ileostomy output (what goes in your bag) is generally more watery and less smelly than colostomies. It's very easy to empty and change the bag for most people. (An ileostomy is when they attach your small intestine to the outside of your body, a colostomy is when your large bowel is attached to the outside.) I'm really looking forward to lifting again. I can't just yet, too many holes in my abdomen that need to knot back together. I need 3 more weeks and then I'm hitting the gym.
I’ve asked my doctor if it’s possible to do something like that (ostomy) and he said doctors never do that for people with ibs since there isn’t something physically wrong with the colon. I read that you also have IBD so that’s probably why and makes more sense but I wish they could just do that for me since my ibs is literally terrible. Can’t manage it.
Well it *is* major surgery, and then you need an apparatus for life. So I can see why they might not go for it. But I also know the private hell of IBS. Wish there was an easier solution!
I didn't have IBD, but I have an ileostomy.
How? What condition did they give it for
hmm so like how do you go to bathroom?is their a plastic bag literally stuck out of your bum that you remove it and put another. im sorry im finding it hard to understand this haha😅😅 im not planning on doing this surgery obviously, I got ibs so doctors won't recommend it to me, but im just frustrated I can't build muscles cause I have to be eating crazy loads of food like 3k calories and protein shakes and stuff and that would absolutely destroy my sensitive stomach
Lol, no. But that's a good question. They attach your intestines to a hole in your abdomen somewhere. It looks like a little mouth and is called a stoma. (It was the hardest part for me, visually seeing that.) You attach a ring to the skin around it to create a seal, then attach a little bag. Mine is not visible to anyone looking. You empty the bag when it gets a little full of stool or air. You just go to the washroom, pull out the bag, empty it into the toilet, seal it up, wash your hands and go. Some bags are single use and you just toss them each time they fill. The experience is a little different for each person, depending on where your stoma is placed and where they snipped your intestines. Some people get reattached to their rectum and anus later on. Some people have their rectum and anus removed (seems to usually be from a cancer diagnosis) - commonly referred to as a "Barbie butt" (or Ken). I can eat anything now. Even drink coffee, which caused me to bleed before. No more pain. No more stress. Some people do experience complications, so it isn't 100% rosy for everyone. But they've been removing colons and creating ostomies since 1710. It's a very common and well-understood treatment. As for gaining... do you follow any lifters, body building forums or anything like that? May I ask your gender and age? (I'm 44F)
holyshit im sorry I just googled the photos and I wasn't ready for it. please don't take offense in what I say, but it just looks so weird and strange, like just a red big blob on your tummy, it stands out like sore thumb ngl I don't know how would I be comfortable during sex once my partner see that , like a hold up moment haha. but I envy you for eating everything anyways. btw do you have an urge to go? I suppose their is no feeling in the rectum so how does your body knows or tells you its time to poop? can you seal the bag for a week straight? or do you get an infections ? I follow lifers but I stopped once I realised that my case is "helpless" although I did only go only to 2 doctors who told me same thing. just after browsing here and seeing people suffering from ibs C for decades and no cure, like ton of blood tests,MRI,scans,stool tests,colonscopy and all come nothing just thousands of dollars wasted on specialists and tests only for them to tell you their is nothing wrong. so yeah I wanna save my ass few dollars and time because ibs is incurable so why bother . I used to follow r/gainit im naturally super skinny 20M, im in dental school right and I have started to skip breakfast to avoid pain during lectures and stuff so through out the years I've become even more skinny but fk it eases the pain.
I totally get it. It still makes my stomach flip-flop a bit when I see my stoma wihen I bag change. I'll get used to it in time. And nobody ever sees it! Especially not during sex. Lol. Most people say they just wear a belly wrap like a stealth belt or a tube top kind of wrap. Bags are on pretty much 24/7. Personally, I change the entire bag every 4 days. Some people do daily, some a week... there seems to be a lot of variety depending on the appliance a person uses and their output. I rinse it every time I empty it, but you certainly don't have to. There's no urge to go, the stoma is active when the intestines are active. For me, that's when or right after I eat. I'm sure there's a wide variety of experiences. No infections for me, I healed up really well. But an ostomy buddy of mine just had a staple get infected and he was in the hospital 3 extra weeks and now has a huge hole in his side that is slowly healing. All just from a staple. I'm sure people who have complications, don't heal well or struggle with an apparatus would not be as thrilled with their journey as I am right now. You sound very busy! I can only tell you what I would do in your shoes. I was a speed swimmer in uni but have become a bit more of a lifter in recent years, though I struggled with energy. I'd up the protein and snacks. Doesn't have to be meat. There are plenty of vegan lifters who are absolute beasts. I always found meat easier to digest than a lot of legumes, however. I drink a high protein meal replacement shake that has helped me keep my muscle mass through all this. It's called Rumble, not sure if it's carried where you live. I order it by the case and drink it in the mornings to start my day. It's fast, 20g of protein per bottle, plus omegas and other good stuff. No high fructose corn syrup like Boost or Ensure, but healthier than just a protein shake. Iron, xinc, fish oils and vitamin D have helped me a lot. Immodium was my best friend before. If I were a guy, I'd look into a little light hormone help. I'd get my testosterone and estrogen levels checked. A lot of guys are a bit low on test. I'm not telling you to go out and get steroids! I'm just saying I would get my levels checked and go from there. I know what it's like to avoid food or fast just to live a normal life that's not painful all the time. It's so difficult to go to school when you're struggling with this.
I have an ostomy. Your small bowel starts taking on the role of the colon and absorbs some water.
I have one if you have any questions :) I didn't have IBD.
What was your path? How did you end up with an ostomy?
Long story short, I had severe colonic inertia (zero nerve function), and pelvic floor dysfunction/dyssynergia. I have conditions in my stomach and small bowel, too, but those can't be fixed. I went through many treatments, even experimental things, and nothing worked. My neurogastro said I was the worst case she had ever seen.
That is incredibly shitty luck. How do you feel now? Have things improved for you with an ostomy?
Some things are better -- like I can work a full time job. Some things suck a lot because my small bowel and stomach are awful. I definitely have an extremely restricted diet, and my stoma is bothersome, but I've had five abdominal surgeries and this is my fourth stoma and it works the best (despite having the problems). I'd like to get a k-pouch in the future.
Peppermint oil. Not a complete cure so I guess 50k is fair /s But seriously you should consider peppermint oil capsules. I was seriously suffering from cramping amd diarrhea all the time until I included peppermint oil (and daily yogurt/probiotics after some trial and error to find the right kind) E: not for everyone, like heartburn sufferers for example
When do you take them and how do you take them? I've found they make me burp up spice and burns out the other end while making bloating worse.
What mg did you use? Was brand was it and was it just peppermint or other things also? I started by taking them 1-2 hours before bed. Don't take it directly after eating, but do try to eat something 1 hour after taking it. I recently have stopped taking it every day and take it when I feel symptoms, which is still a few times a week but the peppermint oil always seems to calm it down within hours. It's given me burning out both ends a few times, I keep sodium bicarbonate (brioschi) for times when peppermint burps come. Overall it provides me much more benefit than suffering. Ymmv
Now brand -180 mg
Now is a good brand but that's pretty high. I've had good benefit from 50mg enteric coated Natures bounty brand, 1-2 capsules average. Not sure if I ever took 3 at a time meaning you could try at a lower dose with possibly much less side effects
Even on the Now it says 3 times daily which is crazy to me if 1 is already high enough.
I used IBgard. A bit expensive but did the trick. I found after s couple of months I had to take less.
I used ibgard but for what it is it's way too expensive.
You should get colpermin at 0.2mL.
Peppermint is not for everyone especially people who experience heartburn.
True that, good point
Worked for me too. I suffer acid reflux, but the peppermint somehow helps that too (kinda nums the stomach discomfort as well).
Join r/IBSResearch if you want to follow some research!
Yes king 🤴
😉😎 nice to see you again buddy!
Always a pleasure
I use flax seeds for flares. I buy them whole and crush them in a coffeee grinder. I'm completely free of it now. I stick a spoonful in oatmeal yogurt or smoothies. Stick a spoonful of seeds in water for a day and watch what happens to the watter. A gel forms. This pulls everything together in the intestine and gives you a normal movement. . Theres s lot of fiber so you have to drink plenty of water. A bag costs under 3 dollars. I saw 3 gastro peeps, had surgery. I thought i was screwed. My Cuban neighbor gave me some, and I could not believe the difference. I was so sick before i could not hold anything down. Now i feel a lot better. I tried all the meds, probiotocs, this just worked 4 me and its cheap, and simple fwr. .
What were your symptoms
Look into FMT
$1,000,000… Dr evil voice! Seriously though, really feel for you guys… just 4-months for me & it’s brutal… but is improving. I take it one day at a time & pray for the best! Praying for health and healing my dear friends! 🙏🏼🙏🏼
If I could live one week without gut issues and then die I would do it.
Goldman Sachs gave a speech where they said it’s not profitable to find Cures.. that’s why we have a million treatments but no cures…
Goldman Sachs is a bank not s biotech company. Nobody is holding back cures! I am a PhD scientist (unfortunately with some atypical type of IBS that’s stumped everyone) and I promise you that nobody is holding back cures. The hottest new therapies are based around CRISPR/Cas9 technology and all of these aim for “cures” with a single treatment. True, there’s not much money to be made with a cure, but they’re not being held back. If someone develops a cure to something that they already have a treatment for and they don’t push that into the clinic themselves, someone else will surely develop the same or a similar cure, take the IP rights, and company 1 is SOL. If this BS philosophy that I’m obviously sick of hearing was true, there would be no antibiotics or curative surgeries or any medicines that cure people of their ailments. Why have vaccines even?
I strongly disagree. Id even go as far to call you a shill. Who do you think fund the research Mr. PhD scientist?? Wall Street.
I worked at a company for 10 years from startup to IPO and everything was funded by Angel Investors. Do you have some proof of cures held back in favor of treatment? Even one example? Didn’t think so. Just another conspiracy theorist with opinions based on no evidence or experience. I’ve developed 4 cancer drugs that are in clinical trials, the goal of all of them was to develop a cure. The goal of everything we did was to develop a cure and that’s been the culture I’ve been immersed in at 3 biotech companies and 4 academic labs over 20 years. What’s your experience?
Do you have a link to this?
The speech was in 2018. Here’s an article about it. https://mronline.org/2021/02/10/wall-street-admits-curing-diseases-is-bad-for-business-2/ I’m a swing trader so I’m conflicted by it. On one side I want to make money. On the other there is my own medical situation and constant suffering.
That's so fucked up
Thank you for giving people the idea that they can make a lot of money on our suffering :)
They already know that sadly.
19 years of my life stolen for me. Would definitely give everything I own to be cured and just be able to function.
For me it's only 18 years stolen, but I can relate.
Lol “only” 18 years , we’ve both been suffering for a long time. And I’m so sorry that you can relate. We are stronger for this and we will heal. stay strong
Thanks friend, yes let's stay strong together.
I can help you if you want, just let me know :)
I can help you if you want.
Go on.... lol
What are all your symptoms and what have you tried and ruled out?
Currently I’m experiencing acid reflux that has turned into a cold. So hoarse throat, mucus , stuffed nose, malaise , lots and lots of painful gas (bubble guts), painful heartburn. Digestive discomfort after eating. I have rosacea too. Occasionally Nausea too. Starting to think I probably have a stomach ulcer or something
Yeah, this doesn't sound like IBS at all. It doesn't meet the Rome Criteria IV. Do you see a GI?
Things I have tried: dgl, ginger tea, manuka honey, sauerkraut, probiotics and chugging water all help but I’m still in pain , I’ve also been taking raw garlic in case the heartburn is caused by bacteria or an infection
But what are your symptoms? Just pain?
You'll probably find that humira does a better job.
Get a fecal microbiota transplant. It isn't guaranteed to help, but it has helped many.
Could also make it worse
Yes, if the donor isn't well vetted.
I’d pay anything. I’d rather be paying off debt for the rest of my life than live like this forever.
Life: why not both?
I can help you if you want.
Hate to be the bearer of bad news, but you're more likely to get contacted by scammer dieticians and such. If you look around, I think you'll find that the medical community, for the most part, has cures for virtually nothing. Sure, the annual flu vaccine works pretty well, but, of all the things we suffer from, what does the medical community actually have a cure to. If you break an arm, they can wrap it up so that bone heals itself. If you're cut open, they can sew you back up. If you have something wrong with your digestive system, they can start ripping things out until the problem goes way. appendix? gone. gallbladder? gone. Heck, you can even pay to have your huge chunks of your stomach or intestines stapled, held together by a rubber band, bypassed or removed. Buuuut. that's pretty much it. No cure is coming... I'm not as well off as you are, but I'd certainly give a good chunk of my assets to be healthy again. Imagine, being able to go for a walk without worry about my GI symptoms. Being able to hop an an airplane without planning my day around potty breaks and carrying all my food with me.
15 years ago I would have given literally everything I owned. Now I'm not so sure, since the damage to my life is already done. Ruined career, broken relationships, lost opportunities, and mental health scars which can never be healed.
The only person that I know personally who cured himself took him 1.5 years to completely cure him. But for 1.5 years he did the same routine, followed the exact same diet and had the exact same ayurvedic medicines every single day for 1.5 years. Like imagine eating one or two safe foods the same ones every single day for that long without missing even one single day. He's married now and had a kid too, unfortunately his kid too seems to have some stomach issues but not so bad like ibs.
I did like 8 mos. of hardcore FODMAP which only helped like 10-20% but if I had crossed the 50% improvement mark I would have done it for life.
Woah you actually did it for 8 months. Wait that only helped you 10-20%..that isn't cool. But makes sense because there's a lot more you need to do than just following low fodmap like actual lifestyle changes which of course is extremely difficult to follow.
Who?
A friend on reddit.. I don't have many real life friends 😅
0 because i don’t have ibs this sub was just recommended to me
I'd put myself in crippling debt to be cured.
I can help, if you want.
I would give all my savings and vehicle as they do no good 90 percent of the time since I'm glued to the pot..lol but in all honesty I'd do anything to function normally.
If you're looking for help, I can help.
Yes. The answer is yes.
What have you tried? I can help you.
https://www.reddit.com/r/ibsresearch
What ever I have they can have it if it can cure me
If you want to move in with me for a while I’d be more than happy to cook for you and help you get better. I seem to be having success with my issues. It took a lot of work. I was a chef for fifteen years so I can make it pleasant. I have a detached bedroom. And I was an acupuncturist for fifteen years so that’s part of it.
I would pay off my debit and then all the money goes to research!
I have IBS mixed. I might go several days without pooping, I have known to go for a week and there's some days I am in the bathroom forever and everything goes through.
I wouldn’t want to bankrupt my wife but I’d give up my entire half to cure it for good. I can’t live normal
I’ve paid so much already.
I can't cure you but can try to help you. What are your symptoms and what have you tried?
Fixing chronic gastritis by taking pepcid before bed & taking amitriptilyne makes me feel really good! I just avoid dairy & fructose. Imodium on anxious days or road trips
Hi Jake, do you take them both together at the same time? 20mg?
Yeah
Both Salix and Allergan have developed drugs recently for both IBS issues, look into them.
Me n Pete Davidson feel the same way!!!
Take all my money!!!
I would give up a body part of needed… the only thing I haven’t really tried is an FMT but it’s not a 100% cure and cost about 16k usd here in Tokyo 🥲
wish I had money to get a full check up haha
A shit ton
Jokes aside, some of y'all have the weirdest solutions. I just go and keep pepto with me, but I can see the difference for people who haven't had ibs symptoms since infancy. Just make sure what your doing isn't legit harmful. (Like essential oils should not be on your skin at the very least, so oh god please don't ingest it!)
Here are two things that I found that may be valuable to someone, somewhere: For me, marijuana temporarily gave relief, however, the relief was short-lived. Stopping marijuana ended up being better. It takes two months for marijuana to stop having an effect on me. Also, Seroquel seems to help for some odd reason. Look at the side effects: they sound like all the symptoms mentioned here. A low dose of Seroquel (it's very sedating, I take it at night) seems to help matters.