American Doctor Thinks I May Not Have "Real" UC, Please Help

Hello All,

I was diagnosed with UC (rectal and sigmoid) in December in Europe. It was described as moderately active and colonoscopy and biopsy were done which revealed typical ulcerations. I had a long recovery process which included steroids, but I've been pretty good since March. I never, ever had blood. I take two Lialda a day and it seems to do the trick. In June, my last European colonoscopy and biopsy revealed no signs of colitis at all, which suprised my then doctor. I still continue to have problems with gas, discomfort, belching and occasional bouts of controllable d. Overall though, I'd rate myself as pretty darn good when compared to what a flare is like.

Now I'm back in the US, and my new doctor is skeptical that I need to be on Lialda. He said, often these kinds of cases of proctitis tend to work themselves out over time and aren't really the same as ulcerative colitis. He wants me to half my Lialda and has scheduled me an upper GI scope to check out my indigestion issues.

I've been following this forum for months and have done plenty of deep reading about UC online and have never come across anything that indicated that you can have "not real colitis" when you previously were hospitalized for a week, had a biopsy done that showed real ulcerations, and then had a long steroid-filled recovery process that was necessary to get a proper stool again. Anyone have thoughts? I'm a little scared to drop my Lialda down to 1 pill a day, but I've decided to do it.

the main goal is to see what happens when I take 1 lialda...i suppose...

Olive read a few sources that say the standard treatment of initial proctitis is to avhieve remission and then off the meds. Apparently there are enough cases where it doesn't come back that this is a standard treatment. My GI had me try this. I decreased my meds...slowly...and could tell it wasn't a good idea so went back up in dose. I tried this a few times until I and GI both agreed that mine was here to stay.

There's also a difference between proctitus, which is not lifelong, and Ulcerative Proctitus, which is lifelong. They are two different animals.

I still agree with your original thoughts on the subject. They are the most likely to be correct.

Where in the small bowel was the inflammation? Duodenum?

My daughter's EGD had similar findings and her ped GI said that inflammation in the duodenum was not a pathological finding. I never pursued that very actively because my daughter needed to treat her GERD.

justwantofeelnormal said...

Well yeah, doc, but what if said inflammation is kind of always present---shouldn't we address that???

Frustrated...

The prospects for you and your doc forming an effective treatment team look dim. I think this would have been a great question at you last visit. Pressing her/him on the feeling poorly issue. In most relationships of any kid, once things take on a kind of sarcastic mocking tone, things usually do not improve. Maybe you can find a physician you feel more rapport with.

Lialda has absolutely no effect outside the colon, so it makes sense to have a trial without it. If you get more typical UC early fare type of symptoms, you can resume the Lialda - you already know you tolerate it.

Meanwhile the Omeprazole may get you feeling better.

Good luck

Yup, they told me I had anxiety for 4 years before my diagnosis, didn’t even scope me.. hope you start to feeling better!!