Crohns, Remicade, and pouch excision

LisaTMember

Hi everyone,

Well, I had my 2nd Remicade infusion and I am still the same pain that I had before a 19 day stay at the hospital for PTN, bowel rest, steroids, fistulas,,, and my first Remincade infusion. I've had two in the past three weeks. The docs. are 98$ sure that it's Crohn's, but without the presence of granulomas, there is still some doubt.

I also have inflammation at the afferent limb which is, according to them, the main culperate in my overall condition.

My doc told me that if this doesn't work then it's so-long to my pouch and a perm. ileo.

They told me that REmicade is the "gold standard" in Crohn's treatment and it's effects would be "immediate". Well, I'm still experiencing pain(just like before the hospital, although not as intense. I know that there are 3 loading does, so an I being too over anxious?
Remicade users, what has your experience been?

I also have interstial bladder cysytis, and I wonder if some of the pain could be from that? I'm scheduled for a bladder cysoctopy on the 8th.

Ahhh. so many things to think about.

Some days I think it would be so much easier to go ahead and get the pouch removed, so i can go on with my life.

Any words of experience or advice? MANY thanks to those who have taken the time to respond to my posts in the past, it's VERY comforting.

Thanks,

Lisa

10/20/1212:16 PM

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Original Post

Lynne2Member

I’ve been on Remicade for about a year for chronic pouchitis that became antibiotic-resistant. No clear diagnosis of UC vs CD, but the docs say it doesn’t matter at this point since the treatment options they recommend are the same: Remicade and, if that doesn’t work, I will opt for perm ileo and total removal of pouch.

The Remicade works fairly well, but has not been the silver bullet I was hoping it would be. Nonetheless, my symptoms did start improving right away, even though I was told it could take a couple of infusions for it to really kick in (during the building time of infusions at weeks 0, 2, 6, if I remember correctly). I do get diarrhea for the first couple of days after infusions, and then things improve. My goal is to be able to get through a work day with only one bm and I am currently doing that no problem for the first 4-6 weeks after infusions, as long as I watch what I eat.

I’m not sure what kind of advice you’re wanting, but I do want to mention that I was completely ready and very much desiring a perm ileo and, after having the surgeon consult and researching some on my own, I learned more about what a big surgery it is and how many/how significant the potential complications could be. So, I decided to hold off. My GI sees the perm ileo as the go-to choice if nothing else works. There are people on this board, though, who have had very positive experiences – Jill M. is one for sure. Once again, if we only had a crystal ball before choosing our therapies. . . . .

Make sure you have good doctors, do your homework, choose positive people to be involved in your life during this important time, and make the best decisions you can with the info you've got. You will find so many varying perspectives and experiences and there's seldom a clearly "right" path for everyone.

Best wishes to you.

10/21/1212:25 AM

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