Inflammatory bowel disease (IBD) support group: Let’s connect

@valarino Is your doctor a gastroenterologist? If they took biopsy samples during your colonoscopy, it would be good to get a copy of that report. My colon looked good (at least less wrinkly than me) but the microscopic analysis showed collagenous colitis which is mostly watery diarrhea. Consider trying gluten free for a few weeks and see if that helps. Even if someone doesn't have celiac, they can be intolerant. Read labels, gluten from wheat, rye, and barley (including malt) is common. Most soy sauce is mostly fermented wheat, so gluten. Corn tortillas/tacos, rice, labeled GF pasta, and a lot of soups are usually GF (don't know if you cook). Adding bulk can help too, such as psyllium husk (active ingredient in metamucil), but it is dependent on the brand of IBS or IBD someone has. https://www.cedars-sinai.org/newsroom/gluten-free-living-gluten-crohns-and-ulcerative-colitis/ https://my.clevelandclinic.org/health/diseases/9357-crohns-disease

I was diagnosed in the Fall of 2023 with Collagenous Colitis and Exocrine Pancreatic Insufficiency, and prescribed Creon for the EPI and Budesonide for the CC. Both have helped tremendously but I still need to be careful about what I eat. If I eat raw vegetables and especially tomatoes or wheat too often my diarrhea is triggered. It's scarey/frustrating/annoying but making the effort to learn your triggers makes a huge difference.

My name is Ken. I was diagnosed with Crohn's disease about 4 and 1/2 years ago. I've had to quit my job, get on disability, and have spent weeks of my life in and out of the hospital and doctor's appointments. I can't go anywhere during the first half of my day due to my bathroom trips. And flare up still happen although I'm on a regimen of medications that seem to be helping me a little bit. I've had to have one fistulotomy surgery at the beginning so far not another one yet. It definitely has changed my entire life I can't do anything I used to do. It's so isolating.

Thank you. Yes my doctor is a gastroenterologist she took quite a few biopsies all were negative. I was tested to celiac that was negative also but I will definitely try GF for a while to see if that helps. Thank you for your response. I have been taking Metameucil for a couple of weeks and it is helping somewhat. Also, not sure if this has any bearing but I have just started on an antibiotic for a UTI and am wondering if somehow that is helping me inspite of the fact that my stool samples and biopsies have all been negative for infections.

Glad they were negative biopsies, but that does leave unanswered questions. Doctors sometimes have you take pre- and probiotics when or after being on antibiotics because they do in "friendly" bacteria as well. After your UTI has cleared it may help to stay hydrated, take cranberry supplements, and clean well down there. Cranberry doesn't do anything when the bacteria are there, but supposedly help prevent future UTIs. I have celiac and when I went GF my skin rashes, acid reflux, enlarged lymph nodes, and stomach upset bloat all disappeared. I've kept a food log for 16 years (when I get glutened or other issues) and it was helpful when I developed collagenous colitis because I was able to trace my flares to legumes (bean, peas, peanuts, etc), cashews, and NSAIDS. I used to mountain bike tours and rides and would take a baby aspirin; it was enough to cause problems. https://my.clevelandclinic.org/health/diseases/9135-urinary-tract-infections

I am suffering from IBD for last two & half years. Gastroenterologist prescribed mesalzine granules 1 gm, 3 times a day. I am continuing with that.
I have seen a news that FDA, USA has approved two medicines in 2025 for cure of IBD (cronh’s disease). Want to know if these medicines are being prescribed by medical practitioners and patients feed back on cure.

Hi, @gaur - wondering what Crohn's disease medications you are referencing? Also, how are the mesalazine granules working for you?

@kewimu - having to quit your job and go on disability is a major life change. All the time you've spent at the hospital sounds rough. I'm sorry to hear about the feeling of isolation.

How are you doing with not working anymore?

My friend was diagnosed with C-diff after taking a certain antibiotic. Now they say she has IBS. Is this something that she can recover from with proper diet? They have prescribed probiotics for a while. Thank you.

Mesalazine is managing my disease but I am told that it will not cure my IBD.
I read a news report that FDA, USA has approved early this year two me medicines to cure IBD.
I was referring to those medicines.