UC or Crazy?

There's 20 years of history of suspecting something was wrong, but having to ignore it because other things in life had to take priority over my health and what I suspected would be more serious than I had time or money to deal with.

Finally, in August (2016) I saw my OB/GYN because I was having severe pain in my LRQ and lower back that kept me in bed for days. It timed with ovulation, so I assumed it was connected to that. Sonographer who did the ultrasound at OBGYN office suspected GI issues and advised that I see a doc. Chaos ensued, but about a month later a colonoscopy - that of course happened the one week that month I wasn't bleeding out my butt. Biopsy on a colonsocopy IDed "mild acute focal cryptitis." Follow up blood tests showed "equivocal" Psomething, low iron, calcium, vit D on top of already knowing I was vit B deficient. Dr put me on lialda but he never told me why and his nurse made the wicked witch of the west seem like a fuzzy teddy bear, so I started looking for another doctor, the one I found is well regarded (authored a book on IBD in fact) but I'll call him Dr. Doubtful.

Dr. Doubtful immediately questioned the colonoscopy results and wanted to perform his own. He keeps pushing me toward IBS vs the UC the prior doctor started treating me for. Believe me, I'd much prefer IBS over UC, but I have bleeding, mucus and other symptoms IBS doesn't explain. Well, unless your Dr. Doubtful who blames hemorrhoids and a need for antidepressants. Yes I have hemorrhoids but a couple times I've reduced or stopped taking the Lialda and bleeding returns, diarrhea returns, misc. pain in my joints (especially elbows shooting up or down in the bones), feet curling cramps, etc. Could Lialda be controlling hemorrhoids?

I caved and scheduled my second colonoscopy. Prep instructions say to stop vitamins with iron but since the good doctor is so doubtful I'm thinking I should skip the lialda too so he can see what happens when I do. Any thoughts on that?

Also, any idea how to be taken seriously. I don't want UC but I don't want to be easily dismissed and find out down the road that if I had been persistent I could have gotten appropriate treatment sooner.

Just do the scope and get results of pathology. You did not have UC at your 1st scope, and were only being treated for acute colitis.

"Cryptitis is seen in inflammatory bowel disease, both Crohn's and ulcerative colitis, but it also can be seen in other inflammatory conditions of the intestines. It is not a disease itself but a microscopical manifestation of several different diseases."

You path report said ACUTE. not CHRONIC. so not UC.

It would be worth temporarily suspending meds a week or so before the scope so that any masked signs are revealed as best as possible. Stopping Lialda for a week is not going to be a major problem unless you are having moderate/severe symptoms.

good luck

If this tiem the report shows CHRONIC Cryptitis as well as other vascular changes associated with chronic infection, then it ill be UC.

The mucus is not usually associated with IBS. Also some articles are starting to talk about persistent GI issues when UC is in remission, that perhaps should not be called IBS, but IBD-associated GI Distress.

The main point of that distinction is that IBS drugs focus on motility, while things tried for IBD-associated GI Distress might include broader symptoms - but there is not general recognition of this condition, or drugs, yet.

Because of beneficial effects on gut microbes often antidepressants or anti-anxiety meds can make symptoms better. A low dose would not be a bad idea.

Post Edited (DBwithUC) : 4/6/2017 4:59:49 PM (GMT-6)

DBwithUC - thanks for helping me understand the distinction. Would the umbrella of IBD-associated GI Distress possibly account for why I'm responding to Lialda?

If the Lialda is lowering your inflammation, that is why you are seeing a response. If you have either IBS or some IBD-associated symptoms that don't fully go away with inflammation, then that could be why you still have symptoms.

the enxt step is to see if there is evidence of chronic disease. I think you new doc is correct to not assume UC when you had an ACUTE colitis diagnosis.