J pouch surgery

HamishMember

Hi all
New to this i apologize in advance if i post this on the wrong section.
Sub total colectomy roughly 9 years ago for UC with the hope of a J pouch creation few months after surgery i mentioned i'd been constantly tired so mu consultant at the time sent me for a white cell scan which came back indicating inflammation,My surgeon then decided it was Crohns and not UC so the J pouch op went out the window for over a year i was treated with a range of meds including Infliximab and methotrexate it got to the point i felt the meds were doing me more harm than good and went to my GP to request a referral to another hospital outwith my area,that was 4 years ago and since moving my new consultant stopped all meds i was taking suggesting i had been given to many potent meds in short a period of each other
I met my new surgeon who repaired a prolapse i had and has since done two more ops to repair parastomal hernias last op was to move my bag to other side of abdomen that was in March and now a hernia has decided to appear there !
I , had my rectum stump examined few months back and it was all clear thankfully and i had a follow up with my surgeon on the 23 Dec an urgent CT scan has been ordered to look at the stoma hernia bloods also taken along with a stool sample
There was a slight mention of a j pouch and as to why my previous surgeon didn't do the op and when i asked why she mentioned that her reply was to examine all possible solutions to the hernias
I've had my bag as i said 9 years or so and wondered after that length of time is a J pouch even possible at this late stage ? I'm 49 and yes i would jump at the chance if given it
anyone have any thoughts on this

12/25/148:04 AM

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Scott FMember

I don't think the long delay necessarily rules anything out. Many surgeons won't contruct a J-pouch if they think it's Crohn's disease, though. I had to shop around for a surgeon who would operate on me (surgeon shopping is usually a terrible idea). I've been very lucky so far, but the rate of complications and pouch failure is higher with Crohn's than UC.

12/26/149:36 AM

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HamishMember

I have read of some of the worst case scenarios and that's what frightens me but I've also read some great outcomes from j pouch surgery I hope in a way I'm given the option

12/26/1410:57 AM

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Former Member

Hello Hamish,

I'm a few years younger than yourself, also male and residing in the UK.
I had an End Ileostomy created years ago and I've recently had a J pouch created.

I'm due for reconnection surgery soon.

I know exactly what you mean by jumping at the chance.
I was initially diagnosed with UC during 1990s but after a severe flare up, I had the Ileostomy created, on the proviso it was temporary but within months of surgery I was told I had Crohns.

At the time, due to post operative complications, poor quality of life and the possibility of pouch failure, surgeons were reluctant to create a J pouch on patients diagnosed with Crohns.

I now fall into the category of "indeterminate" meaning specialist can't determining whether I have Crohns or UC, but close to 10 years without a flare up and not receiving medication to control my condition; my surgeon and consultant believe I had UC all along and not Crohns.

Surgeons specialising in such conditions tend err on the side of caution and patients diagnosed with Crohns or like myself, categorised as "indeterminate" would not normally be considered for J pouch surgery.

I'm lead to believe, that during the last 10yrs theres been many patients diagnosed as indeterminate or with UC who have undergone J pouch surgery and develop Crohns later but despite their condition, they have responded well to treatment and endured a good quality of life with a J pouch.

It's due to such results that surgeons now offer a J pouch to those who were once considered unsuitable.

It may be worth reading my initial thread to this forum; when I was considering J pouch surgery.

http://j-pouch.org/eve/forums/...1071921/m/3037049926

The answers and opinions received helped me make my decision to opt for a j pouch.