I haven't been on in a long time. Been pretty healthy and living my life. I had my k-pouch 1 year anniversary in February. Dr. Launer was my surgeon.

For the past six months, I have had reoccurring pouchitis. Very treatable: as soon as I get on Cipro or steroids, I feel great. But then within a few days of finishing the antibiotics, the pouchitis is back. We tried steroids and cipro, same thing. Tried cipro for a month, tapering slowly off, same thing. Just recently Launer put me on this super duper antibiotic. I can't remember the name but it was almost $300 with insurance, nearly $3000 without!! I have been off it for a week now, and I just started having diarrhea again.

Now, in the past, my first sign of pouchitis has been stoma pain, then diarrhea, but I have no stoma pain at all right now, so I'm not positive if it's the same thing. I e-mailed Launer about it and he said that if this last antibiotic didn't work then it must be chrohns. I know he is the Dr but I disagree. This feels nothing like when I had the colitis before I had the colon and rectum removed. And from what I have read on this site, I have exactly the symptoms of pouchitis. And it doesn't make sense that it goes away with antibiotics. I think that I am just having trouble getting rid of the pouchtis because my immune system got really messed up from all the crazy meds I was on before the colectomy. I ended up with aplastic anemia, which was a whole other ball of wax. I am only now starting to taper off the meds I have been on for that (cyclosporin). So I just think I'm having trouble kicking the infection with my compromised system.

Anyway, Launer is pretty much blowing me off, and telling me to go see a gastro about chrohns. The problem is, the two gastros I had before the k-pouch, Dr Derezin at UCLA and Dr. Abrahm at Hoag, both said NOT to get the k-pouch. I'm sure you guys have come across anti-k-pouchers, but I certainly can't go back to them with a problem now. They will have me in surgery for a bag in no time.

So the question is: Does anybody know a k-pouch friendly gastro who can take over my care from Dr. Launer? I live in Orange County, California.

Try giving Dr. Schiller call hes in la.

Try Dr Robert Goldklang near Encinitas. He is going to do my procedure in two weeks. Don't assume Dr Launer is blowing you off. I do that sometimes because he does not respond as fast as I would like. He is trying to semi retire and also has an administrative position at the hospital. He has a lifetime commitmet to you when he puts a kock pouch in you. He told me this. If he can't help then Dr Worsey could take care of you. I have been treated for pouchitis for 1 year and it turns out that's not what the problem is. PM me if you want.
Jeanne

Just an FYI, antibiotics are frequently used to treat Crohn's, so you cannot assume that just because your pouchitis responds to antibiotics, that it cannot be Crohn's. I guess one question I would have is that if you have chronic pouchitis (Crohn's or not) and it responds to Cipro, why not just stay on a maintenance dose of Cipro.

I also would not assume that GIs that recommended against the k-pouch would be recommending its removal right away, particularly if this may be Crohn's. The goal with Crohn's is to preserve as much small bowel as possible, not remove it. Is it possible that they recommended against the k-pouch because of suspected Crohn's or an indeterminate colitis diagnosis? But, if you just don't want to go back to the guys who disagreed with your choices, that is fine too.

Obviously, you cannot take the medication that caused aplastic anemia, but there are other meds out there if you do have Crohn's. I suppose that the tapering of the cyclosporin could also be precipitating a Crohn's flare. On the other hand, it could also be making you more prone to infection. What a conundrum!!

Jan

Hi Rachel, I live in Orange CA. I've had my kpouch for 30 yrs and never had to see a gastro dr until 4/08 while in the hosp.

Dr Alaa Abousaif is wonderful. He knew all about the kpouch, did my 1st scope in 25 yrs to see how it looked. He was so upbeat and couldn't wait to tell me when I woke up that the pouch and valve looked great and left the pictures on the tray. Here is a link to his info.

http://www.sjo.org/Our_Doctors...a_Abousaif_M_D_.aspx

He'll order any necessary tests and is excellent at listening and explaining options. I cannot rave enough about him. He will also work with Dr L on treatment options.

If you need anything - I live in Orange. PM me. Best to you...Janice

This message has been edited. Last edited by: JaniceM,

Thank you all so much for your responses.

In answer to Jan's question, the doctors I saw were both very anti-k-pouch. They claimed they had all these problems with the valve, etc. Neither of them believed I had chrones. Dr. Launer assured me that they were looking at old info, and that the valves are much more stable now.

In answer to Jeannie, Dr. L always gets back to me, it is just this last e-mail from him got me scared and angry. I had done everything I could to make sure it was not crohns before the k-pouch procedure. I truly think that my problem is my messed up immune system, and I am just going to require longer antibiotic treatment. I even told him that if he wanted to pass me on the one of his collegues now, that would be fine. But he just answered that it must be chrons and to go see a gastro, and ended with best of luck, which in my angry mind frame seemed like a blow off.

I think just because of the proximity, I am going to call Dr. Abousaif, that Janice recommends. I have had to travel down to La Jolla so many times these last couple years, it would be nice to be close to my Dr.

Thanks again everyone! You guys are all so great to be on this site, helping those in trouble. I'm one of those that only comes on when I need help, and not to help others. You all rock!