I had surgery June 11th for a fistula on my valve. Dr. Shore was my surgeon and I was at St. Anthony's hospital in St. Petersburg, Florida. The reason for the fistula is unknown, there is no evidence of Crohns, possible wear and tear from catheter, maybe what begun as a tear. Anyway, Dr. Shore and I agreed to not repair the valve ( to eliminate a recurrence) but to replace it with a T-pouch which has no valve.

I was discharged from the hospital intubating on my own. I was on a schedule just like any other continent procedure. I am now at 4 hours, longer during the night. I am carefully watching what I eat.

I feel really good and am happy with my progress.

Dr. Shore was great. I was able to talk with him on the phone when I needed to. The people in his office took care of everything. Any questions I have, they are a phone call or email away and I never feel like I bothering them.

Dr. Shore's patients are on a floor where the rooms are private. I don't know if it is protocol or I was fortunate but for my hospital stay (13 days..a little long) I had the same 2-3 nurses in the day and 1-2 at night. They were very familiar with "pouch" patients, I knew I was in good hands. They were warm, nurturing, I only have good things to say.

That's my story..I wanted to share my experience with Dr. Shore.

Wow, I'm so happy you got to have this done and keep the continent ostomy! It would be so hard to live without after all these years. I am happy to see there are other options out there - I wouldn't hesitate to have a redo at anytime if needed to keep it.

Thanks for posting...there is little info on the Tpouch.....!!

Also, I was given a Medical Alert tag that goes on my key ring with all of Dr. Shore's contact info as well as my surgery info and a med alert card for my wallet again with Dr. Shore's contact info and his right hand woman Fran's info for emergency personnel. It also contains instructions on what to intubate with and how.

So, I certainly feel that I haven't been left on my own and what happens if.

Hi Leslie,
So glad everything went so well for you!. Can you give us a little more information as to what a T-pouch is?
Dixie

Congratulations on your success and thank you for sharing your story. Thanks, Judith

Wow Les,
A t pouch...Please explain it to us...I am intrigued!
(HOpe for the distant future?)
Stay healthy
sharon

Hello Lesrich1,

can you please explain how the T-Pouch could be continent without a valve.

I had also a fistula in the valve of my Kock-Pouch and had therefore a surgery in March 2010.

Unfortunately I live in Germany, so that I cannot have a surgery in the USA.

Kind Regards
Martin

Martin,

I guess because my doctor kept referring to it as an access site,I wasn't thinking valve. But it is a valve. It is made differently.

Here is an explanation:
A T- valve is made from a 15cm segment of small intestine. 10 cm of this segment is embedded into the pouch. It is like a tube that has been sewn into the pouch. The T “pouch” is created using ileoal flaps that get folded and sewn over this access segment from two sides. The bottom of the pouch is where the embedded “tube” drains. The way the pouch is constructed and the pressure of the pouch on the valve is what keeps the pouch continent until a catheter passes through the access segment. There is no intussuscepted bowel.

The Kock valve is made by a segment of intestine that is grasped in the middle and is telescoped into itself thereby creating a double layer that is self sealing. This is an intussuscepted bowel. If it comes apart, it is a slipped valve.
The T-pouch eliminates that problem.

I hope this explains it well enough. There really isn't any info in layman's language so I did my best with some help.

Congratulations on the surgery. Hope all is going well. Nice to know that there is a surgeon/medical center in Florida that is familiar with and takes on these type of surgical procedures. Once again, best of luck for a good recovery. If you have a chance, post your opinion and a bit more about your experiences regarding the procedure, surgeon and hospital. Get well soon.

I'm sorry that everyone doesn't know about the Surgical center in St. Petersburg, FL, Palms of Pasadena. They have been doing the BCIR for over 20 years and have the same type of technical staff as does Dr. Shore's Hospital. In fact Fran came from the Palms and brought with her the techniques that you talk about. I had my BCIR done there in 2002 before there ever was a Dr. Shore.

Ray

Ileo 1972 UC
BCIR 2002