It has been confirmed, my sphincter muscles were irreversibly damaged during my initial surgery. Very frustrating. On top of that I've been having pouchitis issues. So I'm totally incontinent.

One top surgeon on the West Coast is suggesting that I get an temporary end ileostomy, leaving the j-pouch and anus so that my body can heal and get stronger after more than two years of being sick and fighthing, before I pursue a continent ostomy.

I emailed a top Kpouch surgeon and gave him my basic story and let him know what the other top surgeon had suggested, and the Kpouch guy said just by the email he wouldn't suggest an end ileo first. I'm working on getting insurance approval to have a face-to-face meeting with this dr very soon.

My question is, did you all do a temp ileo if you were going from a problematic j-pouch/sphincter issues to a k-pouch? If so, how was your result and recovery? For those of you who went straight from the j-pouch to the k-pouch, how sick/weak were you before surgery? How was your recovery?

I know that obviously everyone who has to transition from a failed j-pouch or sphinchter issues had a big decision and was probably very sick. Any thoughts you all have would be great. I want to make sure that this time I have everything going for me -- the best dr, right mind set, etc.

Thanks in advance for your help.

Hey sorry to hear about your problems. I basically had the same problem as you. I have an S-pouch that had to be reconstructed, but even after that still have had problems emptying my pouch. After a year of trying different medicines finally decided to try a k-pouch. I went to the cleveland clinic and talked with Dr. Remzi. He suggested that I go to a temp. ileo first to get healthy. Before any of my surgeries I was about 6 feet and 145 pounds. When I went to him I was about 116 pounds. He wanted me to gain my weight back up before doing the k-pouch as it is a pretty big surgery. I had my surgery at the end of January and am now back up to 138 pounds planning on having the k-pouch done sometime in August.

I to had failed j-pouch. I had all my med. records sent to Dr. Schiller and he said he could go ahead. So I went straight to BCIR.

Thank Mark and Dyna for your responses. As you know this is such a big decision.

Dyna, how was your experience with Dr. Schiller? I want to meet with him as well as Dr. Launer in San Diego. i think they are the two experts in this area.

Dr. Schiller has been great. He cares a great deal for his victoms. It doesn't matter what is going on, if you have a concern you can call him anytime and HE WILL RETURN YOUR CALL WITH IN HOURS. I have no regrets from this surgery.His staff has been fantastic as well.

I had a failed j-pouch that Dr. Launer turned into a koch pouch last November. I couldn't be happier with my pouch now. I feel its infinitely better than a conventional ostomy as I had a end and a loop ilio for a year and a half combined. When I needed to talk to Dr. L I would shoot him an email and get an answer or if I needed more immediate advising he or his nurse Llana were never more than a call away as I live 6 or more hours from La Jolla. This fall I hope to return to school and start my tenure at University of Alaska Fairbanks. I feel confident to leave to pursue my academic and life goals with little worry of my health.

Allison,
I am glad that you are working towards a Kock Pouch. I have seen both Drs. Launer and Schiller and I believe they are very much qualified. All the testimonies here confirm this also. It appears, from this site, that anyone that has had a conversion to the Kock is so satisfied. You need a break from all the major problems you've been going through.