Does anyone suffer from Crohn's or colitis?

I have had UC for 55 years, it’s been a struggle at times lessons learned along the way….
1) Stick to medicine as ordered!
2) Ask to go wean to more tolerant doses/meds once under control
3) Keep stress levels at a minimum- find ways to diffuse. (Mine is walks in nature)
4) Join a support group on FB or where ever to get some help knowing your not alone in your journey
5) use a GI Dr with interest in your condition
That’s just a few tips from an experienced IBS patient with UC specifically. Be aware of dangers of going off meds & extra intestinal manifestations of UC/Crohns.
I’m seeing multiple specialties for all the extra intestinal related problems
I wonder if I had stayed on meds as I was supposed to in past I wouldn’t have the sequela of issues.

Thank you for your response I seem to have good days & not so good days my biggest fear is I go back to work in April & I just know I want to feel normal like I did last year but everything is different now I just need to act like Crohn’s is not going to ruin my life I have to find ways to work around it! ❤️❤️

Might as well add my 2 cents as I have a happy story to report. After 40+ years with Crohn's, I have had 2 cosecutive normal colonoscopies. I stopped my sulfasalazine (because it made no difference ) in May of last year so if I had inflamation, I wouldn't have been surprised. But no, all normal. The only thing I take is Low Dose Naltrexone (2 mg). Over 80% of Crohn's patients benefit from it when they try it, so read up on it and see what you think.

Good luck in April with return to work, that’s a ways away so hopefully you’re on track.
The fact you’re having some good days should give you optimism! It takes a toll so when you get medication right it takes time to bounce back.
I have tried to read all evidenced based studies on diet and anything else I can get to broaden my understanding of the shit storm, pun intended.
Every time I’m at the university hospital for appt I’m grabbing a coffee and in the medical library digging in. Do I know how to have fun…haha.

Interesting 🤔 thanks for sharing your story I will look into that medication as well.

50 years with Crohns . CAT, MRI, Colonoscopy all show no inflammation. High level C-Protin in blood work and still have diarrhea, at times uncontrollable.
Has anyone experienced?

Welcome, @lam3. I moved your question to this existing discussion:
- Does anyone suffer from Crohn's or colitis?
https://connect.mayoclinic.org/discussion/does-anyone-suffer-from-chrons-or-colitis/

I did this so you can easily connect with others like @blu15 @fionah @jer22 @kayabbott @exitframeleft @alfresco @jgkc23 @busyyaya @suetex who can share their experiences.

Using search, you can find additional discussions on IBD and Crohn's disease. https://connect.mayoclinic.org/group/digestive-gastrointestinal-problems/?search=Crohn%27s&index=discussions

@lam3, did you recently have a C-reactive protein test that is showing abnormal results? Is the uncontrollable diarrhea a new symptom?

I don't have Crohns, mine is collagenous colitis (7 years) (aka microscopic colitis because it can only be diagnosed by microscopy of biopsies). My colon is normal otherwise. If I have a flare I have about 2 min to find a bathroom before my GI water balloon pops. I've kept a food log since diagnosis with celiac 14 years ago. I can control flares with diet; no gluten or NSAIDs, and minimal legumes, along with the usual healthy diet, exercise, enough sleep, and especially avoid stress. My GI bloodwork is fine if I avoid the stressors/food. My last flare was September; I was taking baby aspirin for a few days due to long covid cardiovascular symptoms. The flare went away after stopping aspirin.

I haven’t seen any diets for UC with overwhelming evidence to decrease inflammation/remission? I think I read a meta analysis review of multiple evidenced based studies not showing any significant evidence. Seems it’s highly individual responses. I really wonder if there was compliance issues that decreased the evidence? I’m still experimenting feeling sick on most everything most likely related to the stress of my doctor telling me I’m playing with fire not having a total colectomy with a 55 year history of UC. I’m not ready to lose my entire colon. I’d agree to a partial of problem area in descending colon but not all. I’m so upset I think it’s making me worse. I don’t want a permanent ostomy as I don’t think that will stop the storm inside of me with all the extra intestinal symptoms I have. I feel like I want to get to a root cause analysis of the immune response so I’m going to a functional medicine Dr to see if there are any other options.

While you are at the functional medicine doc, see what he (she) thinks about Low Dose Naltrexone for handling inflammation. It has been a God-send to my woes. (First diagnosed with UC in the begining 80s and then changed to Crohn's in the 2000s.) I started LDN in 2019 while I was having small ulcers in my small intestine. LDN helped me heal and get off Entacort. I have been on LDN ever since and have had 2 normal colonoscopies in a row. (Total of 3 yrs, or longer depending how you count things.) I do not take any medication for my Crohn's except LDN.