Theresa, my son was diagnosed with UC at six years of age.  Our gastro said the something.  Worst he ever saw on a young child.  All three sections were effected.  He didn't have surgery until he was 23.  He never took Remicade.  He took 6-mp as well as ascacol and sulfasalizine.  Then as a teenager they put him on something else, I forget.  Unfortunately, he refused to take it.  He thought he was fine and no one explained to him about the internal damage he was causing.  His flares were more acute than chronic.  He went from the age of 14 until 23 without a flare.  My point is she may not need surgery yet.  I don't understand why they put her on TPN.  That's a tough deal.  My son was on it this winter.  Very difficult.  I'm surprised they have not tried asacol or something else. 

Dianne

Just my personal opinion, but I think that a doctor who tells you "that's the worst he's ever seen" is a lousy, inexperienced doctor and you should find another, more qualified GI.

Theresa, I was on Remicade for almost 4 years, bringing my severe UC under control. It was about 8 years ago, but as I recall I was on Prednisone initially to get the inflammation under control. The REMICADE gave me 4 good years, though I did have a few relapses In that time, when I had to go back on prednisone. For the most part , my Dr. adjusted  the dosage and intervals to get me into and maintain remission. Unfortunately, it stopped working after the 4 years. I then tried Humira to no avail, and finally pursued J pouch surgery 8 months later. Good luck to her! Hope the TPN helps her get stronger.

laurie

I have never been on Remicade (although it has been suggested to me as a "last line" of treatment for pouchitis if antibiotics fail), but people in my CCFA support group with UC report good results with it.  It takes a while to kick in from what I hear (perhaps weeks), but if her colon is in bad shape like her Doctor says, it could help to improve her condition so that surgery, if eventually needed, will go better for her, if not induce a total remission.

Your sister is correct about UC being treated differently now than it was 25 or more years ago, mainly because all of the biologics on the market now were not available in the 1970s and 1980s.  I had UC from 1972 to 1992 when I had my colectomy, and in that time the standard treatment was prednisone and azfulfidine and cortisone enemas.  Remicade and 6 MP did not exist.  Imuran, the predecessor to 6 MP, was introduced towards the end of my time with UC and I was attempted on it, but my liver chemistries went haywire and I had to be taken off after a month or so on it. 6 MP is a more designer version of Imuran without the same side effects, as I understand it.  So your sister does have these options.  I have a close friend with UC who is doing well for a few years on 6MP.

My understanding is that at least 4-6 infusions would be required before any improvement is evident. So it would be too soon to gauge whether she is responding to the medication. I would press for a referral to a colo-rectal surgeon regardless, just to have that as a back up, but in the meantime there is no reason not to continue on the remicade. Your sister may in fact improve on it if given a fair trial, hopefully preventing or at least delaying surgery for a long while. Surgery is usually only recommended as a last resort or if dysplasia is present. She is likely not at that stage now, and more conservative, although still effective, treatments do remain available to her.

My case was acute and severe. Remicade was still a relatively new drug in Canada at the time I was diagnosed (2005) and unfortunately it was not offered to me.  As others have said, there are many treatments available now that were not available even 5 or 10 years ago, let alone in 1988. These days there are many more options. Obviously I will never know if biologics would have changed my outcome or not, but my opinion is that all avenues should at least be be tried if they are available.  Many people respond wonderfully to remicade, even those with very severe cases, and your sister may be one of them.

Thanks for the replies.  My UC was possible chrohns  and I think my sister has the same diagnosis.  I remember my doctor said I was in the gray area but we decided to call it UC because it was a better diagnosis for me to handle mentally.  I just want her to have an excellent surgeon waiting in the wings just in case so she doesn't end up with peritonitis and 4 surgeries in 5 weeks which is what happened to me.

Theresa

My sister and I also have UC in common and now we both have j pouches. Hers 23 years ago and mine 5 years ago. It's  great she has you looking out for her best intrests. And I agree with you....she should at the very least have a surgeon in mind that she would trust just in case.