New to the forum, have some questions

Hey there,

I had my first flare up of UC in April 2015. It happened very fast, sudden urgent diarrhea with blood and mucus, lots of cramping, and nausea. I was going about 10+ times a day and sometimes it was only blood and mucus. I was tested for all kinds of infections via bloodwork and stool samples and everything came back negative. My doctor told me I probably just had some virus and that he would send me for a colonoscopy. It took 6 months to get a call back to schedule the colonoscopy and by that time I was feeling fine so I never made the appointment.

I had a few more of what I called “episodes” after that and was again referred for a colonoscopy by a new doctor in July of 2017 and this time I went because I was still feeling kinda crummy. The doctor saw inflammation in my rectum and sigmoid and Dx me with UC. The Bx report showed “active colitis with mild permanent changes” in the rectum and sigmoid and everything else was normal. The doctor put me on Lialda 2 tabs a day and sent me on my way.

When I went back to my clinic for follow-up care they told me to take the Lialda for 2 months and then stop. As someone who works in the healthcare field I should’ve questioned them but I was honestly in denial about having a chronic illness. I was fine for about 6 months and then had another flare up so I started taking the Lialda again. Things slowly got better so I again stopped the Lialda after a few months. This cycle repeated a few more times until I got better insurance and got to see a real GI doctor, one whose care I would be under and not just for a scope and never see them again. This GI scolded me for stopping the Lialda, which I deserved, and had me do a sigmoidoscopy on July 31st 2019. She said she was able to go further into the colon and was concerned because I had some inflammation up near the splenic flexure that wasn’t there before. The rest of the colon appeared normal, including the area after where she saw the inflammation (60c). The Bx report showed chronic active colitis at 60cm, chronic inactive colitis in the left colon and sigmoid, and patchy chronic inflammation in the rectum with “regenerative features”. It lists cryptitis, crypt distortion, crypt abscesses, and increased inflammatory cells in the lamina propria at the 60cm area. The conclusion says “findings are compatible with IBD.”

My GI doctor increased my Lialda to 4 tabs a day and I had been doing well up until right after Christmas when I started another mild flare. I think it’s from the stress of holidays, a new job, and because one of my family members just passed away. The flare isn’t bad at all, only a few BMs a day right now, some dark bloody mucus, and mild aching/cramping on both sides of my abdomen. It’s getting better every day since I’ve been trying to relax and de-stress. I haven’t stopped the Lialda since I got a scolding from my new GI even though I hate taking pills every day.

Well, I’ve been thinking about this for a while and just want to know exactly what the biopsy results mean. How can there only be active inflammation at 60cm and the rest is inactive? I’ve never used rectal meds and have never been offered them. Also, why would the rectum have patchy inflammation? My GI doc has a heavy accent and I don’t always understand what she’s saying to me, and she doesn’t explain things very thoroughly.

Anyway, sorry for the novel. I apologize if this makes no sense and is jumbled up. Writing isn’t my strong point. Thanks!

Have you asked your doctor directly if she thinks it could be Crohn's?

I don't know why you say you deserve being scolded for doing exactly what your old doctor told you to do -- stopping the Lialda.

Anyway, I think you should get a new doctor if her accent is so strong that you can't understand some of what she is saying! You deserve someone who explains things well, too!

You have what you have....denial changes nothing. You came here....not in denial really.

UC doesnt heal in that pattern....classically. Time will tell eventually....but you aren't on enough meds in general.

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