UC in remission but can’t get IBS-D fixed

My teen son has had constant, uncontrollable diarrhea for 15 months. He was diagnosed with UC a year ago. Humira finally put it in remission 6 months ago, but the diarrhea never got better. Imodium helped for a few weeks, then stopped working. Metamucil didn’t help at all. Anti-spasmodic helped a little for a few weeks then stopped. Anti-anxiety helped him mentally but not physically. He takes probiotics, which help with the cramping.

He’s trying a bile acid binder now. He finally saw a small improvement with them so they doubled his dosage, but it didn’t improve things. We need to decide on which med to try now. Has anyone had this type of pattern where these meds affected them the same way? If so, what finally worked for you? He’s so frustrated and depressed about this.

Thx Troubled, he has tried non-processed foods, gluten free foods and several other diet variations and has seen no changes. The only thing he’s figured out is that a meal with a a larger portion of bread (whole wheat or white) seems to help a little.

If the diarrhoea hasn't got better at all since starting Humira, I would also question whether your son is in remission. Given all the things he has tried and which hasn't worked, I think I would request another colonoscopy to see what's going on.

It could also be an infection, so I would ask for stool tests as well.

Perhaps you can do a fecal calprotectin to see if there's need for a scope. You can do that at the same time as normal stool tests... If the FCP stool test is in the normal range, then you know it's likely not to do with inflammation. At that point, a GI who's very experienced with IBS might be a good option. Have you tried different probiotics? I hope whatever is causing his symptoms, that it's easy to get controlled. There is an IBS board here, you may be able to get some answers there.

Ditto all of the above. Insist on stool tests for pathogenic causes (like c diff), get some sort of endoscopy (a flexible-sigmoidoscopy or colonoscopy) with biopsies to see if there is any underlying inflammation lingering from his UC. Don't except "oh it must be IBS-D" without clinical proof thereof via endoscopy. It's only IBS-D when there are no signs of inflammation at all (as IBS-D is absent inflammation by definition).

FCP and CRP tests aren't nearly as accurate as endoscopy, and I've had both FCP and CRP say normal when underlying inflammation persists. FCP and CRP are great for detecting moderate/severe inflammation but not so good at detecting mild/minor inflammation.