UC, now will distal illeum issues. So confused.

Hi everyone,

It has been years since I've commented on here. In 2008, I was diagnosed with UC in a large portion of my colon leading directly to my rectum, which was also inflamed. I had surgery in 2010 (ileorectal anastomosis) in which most of my colon was removed and my small intestine was reconnected to a small stump of colon leading to my rectum. That surgery was a game changer and I had my energy back and a new lease on life, only having to go to the bathroom 3-5 times daily with little to no urgency vs. 20-25 times daily before that.

I retained some inflammation in my rectum, but when that would flare up, I would treat it with steroid foam (Uceris) or hydrocortisone suppositories, although not always successfully.

This past weekend, I began to experience extreme bloatedness in my lower abdominal area and sharp waves of pain in my lower-right abdominal area that would accelerate after I ate.

The pain became severe enough that I went to the ER and had a CT scan done. The results said this:

"Mild segmental dilation of the distal ileum leading to the anastomosis, with mild wall thickening and mucosa hyperenhancement of the distal ileum proximal to the anastomosis and continuing into the rectum. This could represent infectious proctitis and ileitis, but much more likely related to known IBD. No significant bowel obstruction."

The tiny portion of my ileum that's dilated and shows thickening is the portion directly adjacent to my large colon stump, where the resection occurred (and where I have long had some inflammation).

I've never had small bowel inflammation up until this point, and while I know that these characteristics are common with Chrons, I dont have any other Chrons symptoms (no irregular patterns of inflammation, no fistula or absesses).

I'm going to try to see my GI doc later this week for scope and biopsies, but I did research and find there's a form of ileatis associated with UC called "Backwash Ileatis (BWI) where only the terminal ileum is impacted and no other portion of the small intestine or esophagus.

Has anyone else with UC also had these issues in the terminal/distal ileum without it being Chrons? I'm just very confused now.

Thank you.

Thank you for sharing. Was the treatment the same for you? I suppose it would be if you already had pancolitis. I'm wondering if there is a specific treatment that's more effective for targeting the terminal ileum more specifically.

Again, thank you for that information. It's very encouraging that I'll likely be able to get this under control. My rectal inflammation is mild and intermittent and doesn't bother me too much, but the abdominal pain from terminal ileum inflammation packs quite a punch when it occurs. It's amazing how even inflammation in one very small part of your overall anatomy can cause a great deal of pain.

UPDATE: I had a flex sig done on Friday, which basically mirrored the CT scan:

* Mild rectal inflammation
* Two pseudo polyps
* Pseduo polyp and stricture in the terminal ileum

My GI doc talked to me directly afterwards, right when I woke up from the sedation, so I don't remember anything he said (I'm calling his nurse tomorrow).

But here's the thing: I began taking the ultra-potent antibiotic combo that the ER doc had prescribed me: Flagyl and Levaquin - and my symptoms immediately ceased. My lower-right abdominal cramps went away completely and my abdominal tenderness and distension went away completely as well. I'm finishing up the 7-day prescription now with just a day or so left and have had no issues - 100% better.

Is that normal? Or does that indicate my terminal ileum issues might have been the result of a bacterial infection, which my CT scan indicated was a possibility?