Indeterminate Colitis (UC+Chron's) - should I do Remicade?

I was diagnosed with Ulcerative Colitis in Feb 2008 and have been on various combinations of 5-ASAs (Apriso, Colazol, Rowasa, Canasa) as well as hydrocortisone enemas, Proctofoam, and Corticofoam. I've been in a constant flare since before being diagnosed (so let's say about 2 1/2 years) but most of the time, symptom wise, it has usually been very manageable and I am for the most part able to lead a very normal life. I had two flexes done in the last year and compared to my original colonoscopy back in Feb '08, things looked like they were improving (although symptomwise I felt worse for awhile). I just had another colonoscopy a few weeks ago, and my doctor has now diagnosed me with indeterminite colitis (I have both UC and Crohn's characteristics) but am leaning more towards Crohn's at the moment. My doctor wants to start me on Remicade since I haven't been able to get rid of the inflammation in years now and get into remission. The thing is, my symptoms in the last three months have not been bad at all. I have some urgency and diarrhea in the morning (maybe 2-3 times when I first wake up), but haven't seen blood or mucous in almost three months now. The rest of the day I usually feel great. I am maybe a little bit more tired than I used to be back in the day - not sure if it is because of my colon or just getting older (I'm 35). I just don't feel like I am at a stage where I need Remicade since I feel pretty good overall. My doctor argues that since I've been in a state of inflammation, my risk for colon cancer is just going up and up and we really need to get this under control and try stronger medications than the 5-ASA family. He also says that they have done studies with people like me (indeterminate colitis leaning towards Chron's) and that going on 6-MP like drugs (without the addition of Remicade) generally is not effective and that drug wise, Remicade is really my only option. And likely, he said he would add 6-MP to the Remicade later since that is the ultimate cocktail. I have been reading about all the Remicade side effects that people can have, and they really scare me - this is the main reason I don't want to go on it. Any advice? Thanks for reading - I know it was long!

I too was first diagnosed in February, 2008 and had mild symptoms. I took Colazol but soon found out that I was allergic to it. I really did not understand how serious UC was until a year later when I went into my first severe flare and everything hit the fan. Like you my 2nd colonoscopy indicated that I had indeterminate colitis (Crohn’s or UC).

The good news is that you are not in the middle of a severe flare. Trust me, once you are in one it is hell trying to escape it. I will not go into details but related symptoms for me varied from serious eye inflammation to crippling arthritis. Now that I am in remission I cannot take any 5-ASA drugs because of my allergy to them. And I see no need to experience the toxic side effects of the harder drugs such as Remicade as long as I can be in control of my UC and maintain remission with diet and supplements.

Your post doesn’t indicate that you have tried diet and supplements but they are worth a try, especially now that you are not experiencing a severe flare. The worst case scenario is that they won’t work and you have to go on Remicade, but this is where you are now anyway.

The number one supplement here are probiotics. There are numerous threads describing them and it may be possible to get VSL#3 by prescription therefore partially paid by health insurance. Also look at E. Coli Nissle, Saccharomyces boulardii, Primadophilus Reuteri, Ultimate Flora, etc., any, some, or all of these might help.

Vitamin D is crucial for IBD, look it up here on this forum. And if you are worried about your chances of cancer go up and up, then vitamin D helps it to go down and down (Google it).

A good soluble fiber such as psyllium husk (Metamucil),or powder also works. Anything that snuffs out your chronic inflammation before it morphs into a full blown flare.

Diet may also help. You will find good information on the SCD diet here. I prefer a more individualistic approach via a food diary, but whatever works for you is best. Here is a beautiful example of a diary posted by someone with IBD for over 34 years but now maintains remission:

Somebody said...
(Who knew) that eating a plum could make me so sick. I have been waking up at 1:30 am having to run to the bathroom and not being able to get back to sleep because my stomach was so upset for about a week now. Finally put two and two together and figured out it was the plums. I didn't eat the peel either.
It is so wierd how my diet has changed since my kidney surgery. Its like I am having to figure out my diet all over again. Oh well, trial and error I guess.
Yesterday was my birthday and I spent most of it on the couch with my heating pad. Didn't eat anymore plums starting yesterday, and today I feel much better. Geesh, guess I should start a food diary again. Hugs!

Good luck!