I had my jpouch diverted to end loop ileostomy in April '15 due to pouch failure that created a painful rectal/vaginal fistula at the recommendation of a surgeon at cc in Cleveland. I couldn't function any longer so I agreed and asked them to do whatever they could to save my pouch and try and repair the fistula. After the ileostomy surgery I really never got a complete explanation of how it would/could be repaired. They scheduled me to come back in three months but have changed that now to six months. I understand that the tissue needs to heal and that the first repair attempt in the most crucial. They have been very evasive to my questions and basically just told me I was really really sick and that I just needed to heal. I was told to not stress, take up yoga and try to accept the ileostomy for the meantime. Also, the NP told me that fistulas are the most complicated problem they face. They are very difficult to repair. I feel like they want me to keep the ileostomy and forget about repairing the fistula. I had a seton drain for about a month and had it removed because it was so painful and the doc said the area looked dry. Now the pain is coming back and drainage is heavier. Any success stories in the U.S.? The Mayo in Florida performed my first jpouch surgery and cc said it looked odd shaped. I've been to two of the best I thought? I've read some good things about Dr. Beck in Loiusiana.
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