Anyone in the UK?

Hi, I am also from Wigan and have had a pouch for 14 years now. I've not heard of anyone local who has had surgery before, so thought I would reply to your post. My experience has been all good, not all totally plain sailing but generally really positive, the main drawback being that you never meet anyone else who has a pouch and feel slightly isolated at times. I had mine at the Royal Liverpool, under a fantastic surgeon who I still see every year but never need any treatment now, haven't had any since the op. I've had a baby since surgery, am really well and the only real problem I have had was a hernia. Anyway, hope your surgery goes well and if you want to speak to someone local, contact me though the site, would be happy to
I am not in you neck of the woods...just across the pond in France...but I have a really good surgeon who is open minded and has a good imagination when it comes to K pouches and quick fixes...and I do get that 'lonely feeling' with my k pouch over here...have only met one person who knew what it was...his wife had had one...for over 30yrs.
So if you need any advice...just let me know.
Sharon
re goody2shoes

Sorry I had missed your post.
My surgery in Middlebrough was 40 years ago.
Yes things seem to have changed. Yes things have gone backwards in my opinion.
I fail to understand this and have been told only John Radcliffe in Oxford perform this surgery.
This is not helpful for me when I have problems.
I felt this was a giant step forward following a year with an iliostomy. Just cannot make sense of the thinking behind this. The few of us that had the surgery new it was in early stages but wanted to help thing progress for the future. As far as I new all our surgery was successful.
Hi all I am from Widnes Cheshire and had my op at Warringtom Hospital I had my first part of the J Pouch surgery 3 weeks ago, I though my procedure was only going to take 2 stages but when my stoma nurse came to visit me at home afterwards she advised it would be 3 stages.
I was cut length ways from just below my breast bone right through the belly button down to my lower abdomen, had 52 staples I was in hospital 5 nights had the drain and catheter removed day 3.
How long is the recovery period after the first stage I am still uncomfortable walking long periods and bending over.is this normal?
I am getting pain in my left rib a sharp stabbing pain and also in my lower abdomen and underneath.
Have others had the 3 stage surgery if so what was there recovery time and also how long between each stage?
Reading others they talk about take down what is this?
Any help greatly appreciated as feeling abit overwhelmed and down with it all
3 stages seems like a lot of work! Mine was just done all in one go! Take down is normally when everything is plumbed together again and and have to get the ol' bum in action! Haha
I had my stoma for 4 years and then went from this to everything getting done in one surgery for my reversal, it's been a year now and everything is a lot better but I really struggled to begin with!
52 staples is immense! I was only 32 and they started the cut at my belly button!

Know your not alone!

Steph xoxo
Hi,
I am in Stratford upon Avon. Currently have a failing j pouch and am discussing k pouch at Oxford with the DUDE Prof Mortensen.

Cornwalldream - The three stages are:
1. removal of the colon and formation of ileo
2. the build of the pouch
3. takedown (or reversal)where they replumb you back through your bum.

In the UK they generally prefer to do this in 3 ops, but sometimes (including me) they will do 2 and 3 together. Though this reduces the number of ops, the recovery from the last op can be pretty rough, but gets it over and done with. Sometimes they will try to do 2 and 3 together, but can only manage to do 2 so you can wake with a stoma when you thought you wouldn't.

I had it all done in two stages, the colon came out as emergency, then had the pouch formed and reversal in one go 5 months later (but I did have a dodgy ileo). Your experience of the first stage sounds like it went pretty normally. The op is massive and stuff inside can take a really long time to restructure itself. As the scar tissue builds up it starts to resupport all your internal bits and bobs again, this can take months, but it will get there. Progress can't really be noticed daily, but I used to think back to how I was a month before, and the differences are there.

Good luck with it all.
Scouser here! I have FAP, diagnosed in 2003 along with bowel cancer. Operation performed in Jan 2004 when large bowel was removed and small bowel re-structured to form an S-Pouch. Take down was 4 weeks later as surgeon was concerned about renal failure as my temporary colostomy's output was too high!

Abdominal Desmoid Tumor removed in 2006.
Nose tumor removed in 2009.

Undergoing tests for a lump in my right hand hip area, awaiting MRI. Also waiting for my annual gastroscopy and pouchoscopy.

Fun days for us pouchies!

Anyone want to discuss health matters please PM me. I'd really appreciate another pouchie to talk with about pouch concerns/tips.

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