Does anyone suffer from Crohn's or colitis?

I know a few people that have had Chrohn's for many years and it doesn't limit them (other than being cognizant of where bathrooms are). Managing stress, diet, and exercise are important. There is a grieving process with illness as well; it hits you physically and emotionally. Collitis flares/inflammation can go into remission. Hopefully your doctor will monitor your progress and adjust your meds as you heal.

Bathrooms are vital. Everywhere I go I make note of them because your colon is not your friend. Make sure you get a Gastro. who listens to you and is good at communicating

Do you have the HLA-B27 genetic marker? In addition to Crohn’s Disease(CD) it is also a marker for Ankylosing Spondylitis (AS) and for Uveitis. AS is another chronic condition. For me Uveitis has been one discrete event, but can repeat. You’ll want to learn about all three conditions and watch out for them.

I have AS (47 years) and CD (9 years). My one Uveitis flare was just before my CD diagnosis. I probably had CD much longer - maybe as long as AS - but mistook cramps as pain from AS. Unfortunately, no one ever warned me to watch for CD.

You’ll find you need to be proactive and learn about these conditions on your own. There was no internet when I was diagnosed with AS. Fortunately there is now, but now the problem is filtering out all BS.

I have been on Humira for about 6 years. Has been like a miracle. Except for the fused vertebrae has “cured” my AS. (I’m stuck with that.) And my last colonoscopy showed no signs of CD. But I was warned that each of the biologics tend to stop working after awhile and I’ll need to try another.

Other than Humira I just try to eat healthy - no alcohol and avoid additives.

Hello, I was diagnosed with severe chronic ulcerative colitis about 29 years ago when I was 40 years old. I saw Dr. William Tremaine at the Mayo Clinic for the official diagnosis after being hospitalized near my hometown in Iowa twice. I was near having to have surgery but he wanted to try one medication first - that was azathioprine along with a moderate dose of Prednisone (for three months to diminish the inflammation). I was started on the lowest dose possible of 50 mg/day. I have maintained that dosage for nearly 29 years. Each new GI doctor doesn't believe it is a therapeutic dose and does a test and sure enough - it is a therapeutic dose for me. I have been in remission for these nearly 29 years. That is not to say that I didn't have a week or two of cramping or a night of diarrhea. This was usually due to something I ate - diet is important. I did not have any side effects - and there are many possible - until this past year. A minor skin cancer and that was taken care of promptly by my dermatologist. Originally, I believe it was not recommended to be on this medication for a long period of time. Then, over time, the medical community changed their opinion on this. Dr. Tremaine told me 29 years ago that I would be on this medication for the rest of my life. So far, that has held. My Medicare won't pay any part of the new biologics and other meds seem to have far greater side effects and cost. All you can do is communicate your side effects and worries to your GI doctor/provider. I have a cousin who could not tolerate the azathioprine and she was prescribed something else. It might take a while and trial and error to find the right medication. I wish you well and I do understand your concerns about taking this or any medication. Big hug to you.

Very interesting information I didn’t know anything about the HLA-B27 testing? That makes sense though! I have back issues & arthritis in my hips due to a fracture in lower L3 & L4 area.. my brother in law in my chiropractor. He says I have
spondylolisthesis. I do believe that’s the name wondering if there is any relation to it??

Good to hear about your CD.. but I hope everything else gets better it sucks we have to suffer with something geez life is hard enough!

Just wanted to tell you I got food poisoning back in November and I just never got feeling better for weeks and then mid December I was as super sick couldn’t stop going to the bathroom then it got to throwing up and I couldn’t take it anymore so I went to the ER got admitted for 4 days.. I was so sick with colitis and lost 27 pounds in less then a month. Had endoscopy & colonoscopy done he said I have severe crohns!?!? I just don’t understand how? Why? It has turned my world upside down but I’m on the mend today gaining strength & weight back . But there are days my stomach hurts even when I touch it? Strange and some days I feel completely fine.. so I’m just dealing with it. Sorry for long post I just want to know more about why I feel the way I feel & will I ever be able to go off these medications it sucks!

I agree my GI doctor seems very knowledgeable and helpful I hope he will be good for me on this Crohn’s journey! 🤷‍♀️🙏

Yes it’s been super depressing but I’m going to fight through it I have no other choice! 🙏🙏

I hope that you can escape the stress. Hobbies, interests, and friends are very valuable. It takes time to adjust to the changes, and worries about bathrooms being close enough.

@fionah Welcome to Mayo Clinic Connect! I’m glad that you’ve joined us. There are lots of different discussions, not all disease related. Just look around and give good advice or helpful hints where you like.
You sound like you have a good handle on your disease-any helpful advice?

Stay strong for the people going through this and pray everyday that it’s going to be better for everyone! 🙏