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12 replies

Pouch Re-do (update)

P Pouch4WfMember
This is an update on the post below.
Original Post

This post is an absolute dream to write. We are 16 days post-takedown of our pouch-redo surgery and my wife is doing fantastic.

Quick Background: My wife had horrific problems for 1.5 years after J-pouch surgery that was determined was the result of retained rectum, 7cm, during the first surgery. Problems included incontinence, incomplete emptying, extreme pain and BMs of 20-40 times per day.

Complete Pouch redo was performed in February 2014 and takedown on July 11th, 2014. A three night stay and the hospital and by discharge my wife was having 6-8 BMs per day with no frequency or pain. Life is good.

By week two BMs actually increased to around 10-12 per day and surgeon believes this is due to cutting off pain meds. Lomotil was started and BMs down to about 8 per day. Light exercising resumed during week two and just trying to hold back activity during first 6 weeks post-op. What an amazing change from last 7 years of hell. Our prayers may have finally been answered!! Thank you all for your support and I know that no matter what happens with continued recovery that this site and its members will be here. Time to go live!!

Dan
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Scott FScott FMember
She thought the evidence was stronger for Crohn's than UC. Mayo's surgeons have generally declined to perform J-pouch surgery for Indeterminate IBD. I think they are misinterpreting their own data, but they haven't asked my opinion. In my particular case I'm very, very glad I had the J-pouch constructed in spite of being advised against it by several surgeons.

The various Mayo locations seem to mostly have no staff in common. I was just interested to see that their doctors sometimes move from one location to another.
P Pouch4WfMember
Scott,

Our experience at Mayo Clinic was very interesting. While the doctors at the institution are extremely progressive and confident in their abilities, they also have great respect for existing literature and outcome statistics.

In other words, they use their vast pouch-problem experience to make the best judgement calls, but when they feel like they need to be conservative, they literally just quote some research article.

We are incredibly thankful that we had access to Mayo as it was truly a last chance at avoiding a perm ileo. After being passed up the food chain of doctors and surgeons for 8 years, being at Mayo finally have us a level of confidence that was very peaceful.

By the way, have you seen Young-Fadok's single incision YouTube videos. She does 100% of surgery through ileo site, no lap wounds, no incision to excise colon... Pretty impressive.

Dan
TE MarieTE MarieMember
That is an interesting question Scott. I have the same GI as I did for my 2nd opinion on my UC diagnosis in 1997, except now he's the director of the clinic.

I would imagine when positions become open that doctors from one facility could apply with the other. I think some would rather work in AZ or FL rather than Minnesota. The winters can be brutal Cool

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