Ulcerative Proctitis - questions.

Hi Everyone,

I have been in a UP flare since March 2011, was put on all sorts of meds until I was diagnosed in August - then just had Pentasa (1g enema) nightly and cortifoam in the am for 2 months. Had a few bumps in the road between August and December (both stress related). Finally got to see my GI doc in December and he put me on Pentasa tablets (2g twice daily), and enemas mornign and night (or suppositories in the am if I can't manage an enema due to time). Anyway generally been feeling a lot better.

Saw my GI again in Jan, and he is feeling pretty negative about our ability to control my UP with just mesalazines. He really wants to avoid oral steriods (as do I), and so he is looking into alternative treatments or clinical trials for me. Up until that meeting I thought it was just a matter of time before I went into 'remission' but now my doc says that some people never do, and he thinks I may be one of those people. Anyway, I have been on the new reigime of treatment for 4 weeks and am going to the BR twice a day, some abdominal pain, but my main symptom is mucus. lots and lots of white spider web type mucus all over my first lot of stool.

So my questions are: this mucus is sign of flaring right? but why no blood? (I have always had blood before). and 2. have any of you UP suffers taken this long to get into remission? am I really looking at being in 'flare' for the rest of my life (or until I can have surgery) or is their still hope and 3. is there anything I can do in terms of diet to reduce the mucus/inflammation. I have removed dairy and been re-introducing, the only thing that seems to have a negative effect is yoghurt (although I haven't re-introduced milk).

Thanks for your help

"Anyway generally been feeling a lot better."

That's important. Some gastroenterologists rank these subjective feelings as important or more important than histological (tissue related) appraisals.

"Saw my GI again in Jan, and he is feeling pretty negative about our ability to control my UP with just mesalazines. He really wants to avoid oral steriods (as do I), and so he is looking into alternative treatments or clinical trials for me."

Practice guidelines at the teaching institution at which I'm being seen are first mesalamines, then steroids, then alternatives. No one wants to have to prescribe steroids but better than immuno-suppressive measures that may turn an infection into a horror show. I'm uncomfortable with you being put to clinical trials in light of these guidelines, particularly when you are feeling better. What's to lose with a little more time when the direction is positive.

     What disturbs me most about your post is your statement that your GI doctor is so negative about your reaching remission.  Is he some kind of genie who can look into a crystal ball and determine your future?  While I agree with him about controlling your UP with just oral Pentasa (personally I never took that medication), I would give the rectal meds some time to work.  My doctor was never a big advocate of oral steroids but prednisone was the only med that helped me achieve remission.  However, after suffering with UP for twelve years, being on 6MP for seven of those years (not helping much), trying Remicade (failed after 3rd infusion) and then Humira (no change after three months) and becoming prednisone dependent for two years....I had to have the surgery.  It actually saved my life.  I was almost 64 yrs old at the time of my operation.

     My GI never recommended VSL#3 but I have a friend with UC who is having wonderful results using it...give it a shot too!!!

     The best of luck to you!!!