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Any UC medications After Ileo or J pouch surgery?

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Posted 2/13/2012 8:55 PM (GMT 0)
Ddd, I am concerned about the high percentage of problems with the J pouch, I hear it a lot. I have meet two people in my local area who had problems with the J pouch and then they had to revert to a permanent ileo, that really scares me.
I also know that their are many here on the board who have had success, I guess it's a crap shoot, parden the pun.....Renee
Posted 2/13/2012 11:12 PM (GMT 0)
The stats I've read are all in the 90-95% range for patient satisfaction w/the j pouch.... but when it doesn't work, people can be pretty miserable. The good thing is that there is another option in going back to the ileo.

I was scared that it would feel like colitis all over again if I had a j pouch. But they wouldn't even do that surgery for me at the big teaching hospital I was at because my diagnosis was (likely) Crohn's.... so I didn't have to make the choice.

One thing you do have to be careful about is that if you meet people on forums like this one or at support groups etc, people w/complications are over-represented, as many of the people who are fine just go back to regular life and don't feel as much need for the extra support. I don't know where you met those two people, but it is something to be aware of.

Crapshoot -- good one!
Posted 2/13/2012 11:36 PM (GMT 0)

blueglass said...

killcolitis said...
Anyone with CD here with an ileo who is off all meds?

I'm still officially indeterminate, but it's more likely that I have Crohn's, and I'm off meds. I was told that for someone w/Crohn's colitis who had never had small intestine involvement, that there was an 85% chance that surgery was a cure, and when there were complications (from Crohn's, not from surgery) they tended to be localized near the stoma and easy to treat.  This is me too - I'm so effing happy to be off the meds and not jabbing myself with a needle every Friday night, being a zombie the night of b/c of anti-nausea meds and then a ***** on wheels the day after b/c of the side effects.  I'm only 8 weeks out from surgery but I feel better than I have in 6 years (last time I was preggo!).  It's amazing and I'll display this pouch PROUDLY in exchange for not having to fun to the freakin' bathroom every 15 minutes.

Posted 2/14/2012 11:17 PM (GMT 0)
So far, I am on no meds at all.  It felt AWESOME to take the last pill and realize that I was pill free for the first time in 14 years. 

I am not sure what my fate will be though, as I have pyoderma gangrenosum that will not go away.  They say that PG is not common in people with UC after full proctocolectomy as there is nothing left to become inflamed (my pathology slides are under scrutiny at Mt. Sinai Hospital for a second opinion for Crohn's). Still, I am an exception who was a perfectly fine candidate for j-pounch and went with the ileo because it seemed to me that there are less significant complications assiciated with the ileo overall (meaning - those that require oral meds and the same roller coaster we were all on with UC).   

I am hopeful that the PG will clear up, and when it does I will be loving life even more than I do now.  As I sat in Friendly's the other day and devoured the first ice cream sundae in years, I was in heaven!!! 

I was lucky enough to have a lot of years of good health when I had UC, but when I flared it was bad.  Also, it was amazing how much I had to give up to feel good.  Now I don't have to give up anything, and I can still eat healthy (if I want to ;) and feel good. 

Posted 2/15/2012 12:00 AM (GMT 0)
     Salamore, my surgeon told me I was not a candidate for j-pouch for reasons I listed many times before.  Somehow or other, I did get the feeling (although he never said as much) that my surgeon is not a big advocate of the j-pouch.  However, I know he does perform them.

     I was ready to have the surgery, being very sick with ulcerative proctitis and prednisone dependent for two years.   I psychologically prepared myself for the bag, so when the big day came it was not difficult to get used to at all.  As a matter of fact, my surgeon's assistant recently phoned me and asked if I would be willing to speak with some of their patients, if need be, to relate how life is after having a permanent ileostomy.  I told him I would gladly do so.

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