Hi everyone...

My brother (27 years old) has had UC for 7-8 years now and has been trying every treatment (asacol, prednisone, 6-mp, and finally remicade). In the past 2 months he has had 2 episodes of infections due to being immunosuppressed (from swallow delta water while water skiing) and has a hell of time dealing with this. A couple of weeks ago he started having blurry vision, which the doctors are saying could be a rare side effect of the remicade. This really scared him and us as well so he decided to go and get a second opinion from Stanford GI specialists. Until now he has been under the care of UCSF docs, which was a recommendation from Dr. Present (a guru of UC and IBD in NY).

The Stanford doc today told him that his chances of going into remission with meds only are very slim and that he will probably need to have surgery. She told him also that he will probably not be a candidate for the J-pouch surgery since he's been immunosuppressed for so long and that he will have an ileostomy for life....****ty news for bro (no pun intended). Now this doc is not a surgeon but she is and IBD specialist.

I am an RN/NP and have been trying to be a support person for my brother and feel at a loss. I have done some research and I think and correct me if I'm wrong, that the surgeon can't even tell you if you're a candidate for j-pouch until they actually open you up and attempt the surgery.

Soooooo...my questions are:
1. Has anyone had j-pouch surgery after being on a long long course of meds (esp remicade)?
2. What has your course/life been like?
3. Anyone out there had surgery in the Ca Bay Area, specifically UCSF or Stanford? And would you recommend your doctor?
4. Any other advice???

Thanks...
Worried E

There are several of us who had UC for many years and have successful j pouches.
You are correct about dr's not really knowing until they get in.
As for a GI saying this, IBD specialist or not, she is not a surgeon.
He may be a candidate for a k pouch but unless you go to dr who does k pouch surgery you won't have that option.
That said, the best in CA is Dr Dana Launer and Dr Worsey, his associate in LaJolla. Inconvenient but will be well worth it when all is said and done.Your brother is young and understandably would not want to end up with a permanent ostomy.
Don't wait until he needs emergency surgery and is left with no choice.

I also don't agree with her. There have been many members of this site who've been on immunosuppressants for a long time before having j-pouch surgery. I'm assuming she's talking about being on the medications.

I had my second two surgeries (of three) at UCSF in 1990. My surgeon was Dr. Ted Schrock. I think he has retired. There are some good doctors at UCSF though. However, I didn't like my experience there because it's a teaching hospital. But I did write a long and detailed letter to the director of the hospital so maybe they've cleaned up their act. When I had my final surgery (takedown) I made sure that I told them that the team of doctors was NOT to come into my room. That I had had a horrid experience during my last 'visit' and I wasn't going to put up with it again. Of course, they didn't listen.... But being an advocate for your brother would be a good thing - especially since you're an RN/NP.

Good luck and welcome to the site.

kathy

This message has been edited. Last edited by: kathy smith,

Thank you for all your comments...it's a difficult time right now for him, and I appreciate all this info. I have directed my brother to this site so that he can just read about everyone's stories...good and bad. I think that he just needs to be informed right now and make up his own mind about having surgery or not.

Will keep you posted about his decision.
:-)
Thanks!
Elika

Here is my understanding:

The circumstances of his current medication regime can mean that he may not be a good candidate for a j-pouch at this time, but it does not preclude a j-pouch at a later time after colectomy. In those cases, a 3-step procedure is done, with a colectomy and end ileostomy as the first step. The rectum is left in place and closed as a blind end. After a period of healing, typically about 12 weeks, the second surgery of removal of the rectum and pouch creation is done. He should not be on immune suppresants at that time. A diverting ileostomy is generally done at that time and taken down 6-12 weeks later.

Is it possible that your brother misunderstood what was said and assumed that the end ileostomy was permanent when he was not really told that? Of course, if you were present at this appointment, then you KNOW what was said.

I had my surgery at Kaiser Hayward by Dr. Dennen, so unless he has Kaiser, that's out. UCSF can be a very good option. I have heard very good things about Drs. Garcia-Aguilar and Varma.

Jan