Skip to main content

Hello,

I have been following this site for a while now and find it very helpful and informative.

I was diagnosed with a perianal abscess and fistula in the fall of 2012, which I personally believe may have been caused due to surgeon inexperience when undergoing j pouch surgery (had more than a couple of staples fall out). I had to suggest the possibility of either (abscess/fistula) for the proper scans and eventual diagnoses to take place.

Tried antibiotics with no luck. Eventually requested second opinion from the head of colon and rectal surgery at Johns Hopkins University, Dr. Efron. I have been seeing him since late fall of 2012. I know have a seton drain in place with a temporary loop-ileostomy until j pouch advancement surgery can be done to correct everything.

My question really is pertaining to surgeon experience and outcome. Has anyone ever had Dr. Efron perform pouch advancement surgery on them? If so, what was the outcome?.

I am really contemplating whether or not I should seek the advice of a Cleveland Clinic or Mayo Clinic surgeon before I go ahead and have anything else done. Have had 4 surgeries already and this would be my 5th and counting.

I would like to give this j pouch another shot ideally, but if cannot be fixed, am happy with a permanent ileostomy. Do not want to risk the creation of another pouch.

Would really appreciate input and suggestions!

Replies sorted oldest to newest

You may want to consider what I have. I had my entire colon and rectal area removed in 1987 and had an ileostomy/pouch for 17 years. Fun, Fun. Then I read an ad in the Parade magazine that said, "Do you want to be continent free?" I called for information, visited the facility, talked to the doctor and decided to have the surgery done. It's called a BCIR (Barnett Continent Internal Reservoir). I got rid of the "bag" and my quality of live is definitely much better. I've had this "internal Pouch" for 13 years now and know that I did the right thing. The pouch is right inside where your stoma stuck out of your abdomen. To relieve yourself, all you have to do is use a catheter and then cover your abdomen with a little gauze. There are only two places in the U.S. that does this surgery which are California and Florida. IF you are interested, you can call and request literature on the procedure. The contact person would be Susan Kay and her number is 1-800-336-0789. Good luck.
SE
I had my colon removed at Hopkins-- in 1993 due to Ulcerative colitis. I ended up not having the J-pouch until last year (2012.)

Other than insurance and employment issues, I don't know what I was thinking. Dr. Efron was amazing. I can't imagine being in more capable hands anywhere in the world and I was a bit of a weird case. A few issues between stage 2 and 3, but life is now wonderful without a colon or an ostomy.

I feel like he gave me my body back, intact and whole.
JM

Add Reply

Copyright © 2019 The J-Pouch Group. All rights reserved.
×
×
×
×
Link copied to your clipboard.
×