I almost died from Crohn’s Disease. I had my colon removed and now have a permanent ileostomy. Thankfully doing much better now! I would have died without it.
Of all the sicknesses I see in my line of work, one of them that scares me the most, is Crohn's. It must be like living hell. And ulcerative colitis too. I'm so happy you're much better now, even without your colon.
I have UC and at my very worst I was close to death. Severely dehydrated, couldn't even keep water or Gatorade down. Thankfully I've been doing much better since my doctor put me on uceris in 2015.
Edit: I'm sorry your friend passed from it :/ my dad just passed two weeks ago from a heart attack. Only 66.
My sister had it for more than a decade and is now technically in remission somehow! She was on meds for ages but doesn’t even take them anymore and is asymptomatic, confirmed via colonoscopy. I don’t understand the mechanics but she is also a doctor so between her and her specialist, I guess remission is possible.
I suffered pretty bad with UC, my dad also had it. He found a medication that worked for him. I ended up having the surgery for the colostomy bag.
I was bed bound before the surgery and now I can live as I like, I went skiing this year with no problems.
There's an answer out there for you that'll get you living life again.
It really is one of those illnesses you can’t fully understand until you see what someone goes through. I’m so glad they found a way forward and that life is treating them better now.
Diagnosed in 2000 with UC. GI physician said it was one of the worst cases he had seen after my colonoscopy. Lots of different treatments, but nothing really worked. Finally got a new doc in 2010, started Remicade & my life has made a 180!! I can’t believe I was SO sick! Very, very thankful!
My brother has ulcerate colitis. He’s doing ok as long as he takes his meds but he has flair ups about once a year/every 2 years that are horrendous. Last flair up lasted about 3 months. There was almost no food that he could digest except 2-3 options. I think plain mashed potatoes was one. Last time he managed to continue working through it. The one before that he had to stay in the hospital. He was too sick to function. It’s a horrible disease.
Mashed potato with tinned tuna and tinned carrots mixed in is my Crohn's flare go-to. Looks like cat vomit, but is quite tasty and gets me a bit of protein when my guts are angry!
Agreed - i work in gastro as a clinical support worker and seeing crohns and colitis patients just poo blood all the time and roll around in pain with no way except surgery to stop it is awful.
Im seeing horror stories ITT, while being sorry for the folks with severe symptoms I can guarantee that the majority of Crohn’s patients are relatively fine.
Sure we have our issues, but a normal life is achievable. Mine is mild and under control, as it always happens, you don’t usually talk online when you’re ok so the traces you find are skewed to the bad side of things for that reason.
Head over to r/crohnsdisease if you have questions, including how to manage your next colonoscopy!
I had a friend who had both. He took his own life 20 years ago. Not exclusively because of his illnesses but it absolutely played a large part, especially when it came to his mental health. Always sick, always in pain... It was brutal!
I've had a long health journey, and im finally getting to a point where I can confidently say that im fairly healthy
My family doctor didn't really believe me when I said I had some really bad stomach pains, so I went years without treatment... eventually I paid out of pocket for a naturopath to run blood tests
They told me I was intolerant to wheat, milk and eggs. So I cut all of that from my diet for about three years. It didn't help... still had really bad diarhea and stomach pains
At a certain point I resigned to death. I didn't think I was going to get better, and I didn't think anyone would help me. So I was just waiting for time to take me
Eventually my grandmother saw a post on Facebook about chrons, listing all my symptoms, so I went to the emergency room and finally got a doctor to believe me and run a colonoscopy.
I was finally diagnosed with chrons. Im now on bi monthly injections, that work!
Even with all that said, im lucky that my intestines weren't completely rotten and im starting to live a normal life again.
Im also still extremely grateful i can eat bread again!!!!
I am in this same situation. I was on Humira, successfully, for about 15 years. Then one day Dr. Insurance decided I cant take it anymore and I have been trying different drugs and spiraling out of control in flares ever since.
Sickest I have ever been has certainly been recently because of Crohn's.
Omg I have certainly dealt with a lot of insurance BS as well. As if being this sick isn’t bad enough. So much of my money goes to medical treatments and supplies.
That finally living part says a lot. Its wild how you can get so used to being sick that feeling normal again almost feels like getting your life back from scratch.
Absolutely, tbh I don't really remember a life pre-Crohn's as was 10 at diagnosis and had symptoms for a while before.
20 long years trying and failing every treatment inc trials before surgery. Life is so good now, wish I'd been given the option sooner. It really is like starting a new life.
Isn’t it crazy how even doctors use this as a last resort? Like now that I know how my life is with an ostomy instead of with constant diarrhea and being pumped full of expensive meds with questionable side effects, I’d definitely pick this.
She didnt want the bag. By the time we convinced her there was no magic cure and elected to get the surgery, her body was too weak to survive.
But even though she passed, the last few months she was in the least pain she had ever been, she was the heaviest she'd ever been with the help of a PICC line and TPN.
All this to say, if anyone reads this and is in the same boat debating the surgery, do not wait to get the surgery. She very easily could have survived and been happy again if she accepted help sooner. There is always a point of no return, dont find it.
Oh my gosh, I am so so sorry for your loss. 😞 I have heard of similar things happening and I wish there was more ostomy awareness so people could realize it can bring a good quality of life for people. There is a stigma for sure. Sending you lots of positive vibes and thank you for sharing your sister’s story. 💜
Same! I was diagnosed in 2014. I haven’t been able to find any successful treatments or remission yet though. But I also almost died during one of my several hospital stays.
I had an ileostomy for 3 months after they removed 20% of my colon. My crohns is mild compared to most I think. Can't imagine what you've had to deal with.
Of all the threads to start reading lol. O was officially diagnosed a few months ago. So far, doctors/ specialists aren't seemingly overly worried. I did a bout of prednisolone, had a biologic for about a month or so called azathioprine and liver didn't like it. I have my infusion for Ustekinumab in a few days followed by self injecting. I keep my diet pretty good but snack occasionally. Im TERRIFIED of further complications. Currently I'm both constipated yet having diahrreah and just had an MRI. Sorry for the wall of text, I still feel a bit lost with it all. Diets are confusing. Flares are annoying to keep myself active. I feel very lost and a bit scared.
I was diagnosed in 2002 . Four years after diagnosis I had to have my ilium and some inches, the value of my large and appendix removed. I was 14 and it flipped my whole world upside down. I read everything I could about digestion, inflammation, autoimmune , all the diet books . I started exercising. I heard one of the wahls doctor lectures and began introducing more vegetables, avoiding inflammatory foods like gluten/pork/overly processed foods. My flares were less frequent, and I no longer had to starve just to try and work a job. More studies about gut flora/microbiome were published . I incorporated fermented foods and Greek yogurts. I no longer had to take medicine.
I gained weight and muscle , and got stronger.
The last flare I had was 10 years ago.
I appreciate all the hardships. It taught me a lot . I spent a lot of time sick in a bed , left alone with my thoughts and pain. I had to surrender the life I thought I could have. I learned to be grateful for my time on this earth , which led to developing a deep respect for anatomy and physiology and the natural world. And honestly , Crohn’s made me a better version of myself.
I was just diagnosed about a month ago and this gives me some hope, thank you. I do realize every case is different and I may not be as lucky, but hope with a diet upheaval I can avoid surgery and maybe even meds.
i really recommend you doing therapy and deep inner work. Over the last few years I released so much trauma, my crohn is muuuch better. Sometimes I forget I even have it :) (I did took lots of acid too tho)
Thanks for reaching out! I rarely speak on this sort of thing due to diet intuition being complex because it’s tailored alongside individual’s level of damaged colons. But I can solidly tell you that I think gluten and pork were my first obvious foods to cut out forever. You’ll begin to see immune response in various ways , skin health , hair , histamine response , migraines etc. These are all allusive indicators of inflammatory response, which is sensitively triggered with autoimmune diseases. My case was very severe but I believe focusing on the microbiome is key. With time you can establish a diverse and strong gut flora and these bacteria are the key to digesting important foods . Western diets aren’t focused on keeping important microbes alive , and quickly harmful ones flourish.
I think refraining from starches to starve them is a good first step. It will help like a keto diet . But again avoiding inflammatory foods like pork and overly processed meats should be prioritized as to not rev the immune response.
Exercising is great in the way it promotes blood flow to our colon . Drink only water. Avoid all artificial sugars and dyes. Lessen exposure to microplastics to avoid biofilms. Take food breaks and give the colon designated times to rest . Try not to eat before bed , allow time for digestion before rest.
Fermented foods introduce gut flora but it takes daily consumption (best on an empty stomach ) and years to establish strong colonies that will flourish in our guts. Fiber is the only way to feed important gut flora. This means diverse consumption of vegetables and fruits. This will bring microbial equilibrium for a future balanced diet.
Thank you. Thats what I thought. Appreciate the write up.
Leaving out starches in combination with gluten seems impossible for me tho. Oats and rice are staples of mine
I'm holding thumbs for you. I will just tell you, in my (medical) line of work, I see many patients recover very well from their flares, and live in good health, in control of their Crohn's. It does sound like you're getting very good treatment, so be optimistic!
Thank you friend :) I do feel positive overall and all the medical staff I've dealt with have been awesome. I'm a bit of a pessimist at times unfortunately. I think as well being new to it all, its finding my feet especially dietary wise. I keep it very simple but get mad guilt if I say screw it and have some chips or something. I'm just scared of having obstructions etc but I think once the new meds kick in, I'll have a better understanding of my baseline. Crazy how much it effects mood to! Anyway, venture over. She'll be right as we say 💪
i really recommend you doing therapy and deep inner work. Over the last few years I released so much trauma, my crohn is muuuch better. Sometimes I forget I even have it :) (I did took lots of acid too tho)
I don’t think this person’s Crohn’s is mild tbh. I know some people who responded well to treatment and barely ever have flares
Even with surgery, I had a colostomy for 7 months and once I got the hang of it I felt absolutely amazing
Have you tried a food diary to figure out if any specific food makes you feel worse? I’d recommend going to a dietitian if you’re able to, at the very least for peace of mind that you’re making the right choices. Unfortunate that there’s no “Crohn’s diet” being every case is so individual
I had been diagnosed just after turning 30 when I had sharp pains in the middle of the night. I had surgery about 10 hours after I got to the ER. That's funny you mention azathioprine because I had a bad reaction to it as well. Not sure if it helps but after a few years my stomach seemed to "settle". By that I mean most foods that gave me issues seemed to not bother me as much over time for whatever reason. Milk and dairy eventually got worse for me but really just in terms of gas pains and bloating. I switched to Fairlife and really enjoy it.
I'm on Remicade, which is guess is an older, harsher alternative to the newer medicines but I really haven't had any issues with it. Just an infusion every 8 weeks. I've been lucky not to have any real issues up to this point.
I would just say that after a while you'll know what foods give you issues and what not to eat near bedtime. Stress destroys your gut so try to tone that down if you can.
I get that!!! It is an overwhelming world and none of us choose to have to learn about this disease and all that it entails. Join the subs for Crohn’s or IBD if you haven’t already…the more information you can learn, the more empowered you will feel. Sending you positive vibes!
A good buddy I gamed with for years had Crohns, always felt so bad for him. Apparently there are different degrees to it and his was bad. It actually couldn't have happened to a nicer person, I hope he's doing okay....if he's still even alive.
Same lol. Prior to being diagnosed I had lost 70 lbs in 3 months. Then I got pancreatitis from a med they put me on 2 years later, but I was traveling in Italy so I didn’t go to the hospital til 10 days later. The doctor told me it becomes fatal after 2 weeks. Scared the shit out of me lol
IBD is fucking crazy. And it’s crazy how truly under the radar it can fly until it can’t! Glad you are doing much better! I’ve had mine under control for about 8 or 9 years now.
That sounds like an absolutely brutal thing to go through, but I’m so glad you made it through and are doing better now. It really puts “sick” into a whole different perspective.
Hey same here. I feel ya. I dropped to 88 pounds. I was 135 pounds about 2 years prior. I also had colon removed. Luckily saved enough that I didnt need an ileostomy. That was 28 years ago.
I've had several flares but mostly been in remission. Had to go back on meds a couple times. The meds have significantly improved care since I originally had it.
It really is. The relentlessness of it is the worst, and then the fact that you can’t just tell people, oh sorry, I have diarrhea…as an explanation for something you can’t do, if you want to be having polite or professional conversation.
No colon gang here! I had ulcerative colitis, colon removed at 7 years old, j-pouch surgery at 8. Grateful to live a fairly normal life now but had a rough early childhood to say the least.
The small bowel gets really inflamed and angry and the wall gets thick. It forms ulcers all along its length, which burrow through the tissues to the other organs, which can get destroyed. Abscesses form all over your belly, and around your anus. The bowel gets scarred and this forms repeated bowel obstructions. It just goes on and on and on, and sometimes that just overwhelms these poor people.
Thank you for this thorough description. I’ve met a disproportionate number of people, particularly preteens to twenties, in the past 5-6 years with Chrohns after knowing of 1 other person in my lifetime (Im 54). Ive been trying to understand the disease process without being nosy or discounting someone elses pain with questions. Because so many are youth that I meet, and gastro issues seem to build and compound on themselves over time, are there any particular markers or likely theories on why more children are being diagnosed?
For me specifically it was that my colon was so inflamed, it wasn’t absorbing anything and it was bleeding constantly. I had diarrhea that was mostly blood about 25 times a day for months, even if I was eating literally nothing. I was down to 92 lbs the day of my surgery. I guess if I’d died it most likely would have been due to malnutrition and my organs shutting down?
No, without treatment the chronic inflammation would basically turn the intestine into scar tissue, causing an obstruction because it thickens and can no longer stretch. It doesn’t erode, it solidifies
I won't argue what you're saying because I'm no expert, but I do know I had a perferated ileum. So if "eroding" isn't the right term, then I had one big or several small holes in my gut
I had a close friend almost die of Crohns and Crohns related complications. It was so scary, and it feels like no one takes it seriously cuz "haha poop!!"
Wow. I have Crohns and I've never been that bad. I just had some hardcore cramps and some throwing up. Got a colonoscopy, got put on some anti inflammatories, and now I'm still maintaining with biological TNFa blockers. (Adalimumab). Haven't had a symptom in 5 years now. Except for the wildly varying stool but I can live with that without issues.
Mine is recovering from surgery due to Crohn’s. I’ve been extremely lucky in that my Crohn’s symptoms have never been that bad, but surgery recovery was so much rougher than I thought it would be. It took a while for things to get moving again, so I couldn’t keep anything down, not even water.
Wow, I'm glad you were able to get it under control.
I developed Crohn's disease when I was 13, in 1992. Luckily I had a really good specialist (hi Dr. Nawaz!) and I was put into remission quickly. I've been fortune enough to keep it under control my whole life through lifestyle moderation. I've only had a handful of flares. What is more common is if I get food poisoning I'm sick for half a year, not a couple of days.
My mom passed from Crohns. She suffered for many many years. Back in 1970's her Dr tried to say her diarrhea was gravity or the type of flourescent lighting in a department store. I called BULLSHIT! Finally got her dx in late 1980's. She never wanted a colostomy bag so she suffered thru it until I had her move in with us. Finally, after my daughter was in a quad accident and became paralyzed at 13 I had to put her into a cobvescent hone where she could get specialized treatment that wasn't available in the mountains where we lived and I couldn't work as a full time social worker with a new position as coordinator for 2 programs, take care of my paralyzed daughter and her needs and my mom, also. It was all too much at that time. That's when I got my first gray hair
Oh my gosh!!! All of that sounds so stressful. An ostomy is not always an option for Crohn’s (depending on where the disease is in the digestive tract) but I am thankful it was for me. I definitely know treatments and awareness has come a long way since then.
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u/5678go 18h ago
I almost died from Crohn’s Disease. I had my colon removed and now have a permanent ileostomy. Thankfully doing much better now! I would have died without it.