Hi everyone, I'm from the UK and currently waiting for re-constructive surgery following a Ileostomy for Colon Cancer last year. I had an initial Ileostomy that was supposed to be temporary but my Op went wrong and I had to have more bowel removed resulting in the possibility of a permanent Colostomy, I sought a different surgeon at the RVI in Newcastle UK and he is going to attempt to re-join my colon or if this is not possible construct a Ileoanal pouch from my small bowel, I wont know until I wake up what Ive had. Im very nervous in either scenario as I know lots of people who have their colon rejoined have an horrendous time toilet wise and Im totally unfamiliar with the success of a J Pouch in the UK. So any advice any UK people can give me would be much appreciated.

 

Tony M

Original Post

I'm in the UK and had my ileo takedown in Feb so I've had my J pouch for about 7 months now. I'm not sure what advice to give - all I can say is that it works very well, it hasn't been horrendous at all. I go 5-6 times every 24h and have no urgency or leaks. Fingers crossed, whatever way the surgery goes, you should be fine. Best wishes.

Hi there Tony, I'm 2 weeks post takedown and my experience is similar to gb2014 , regardless of what happens all I can say is that initially after your operation your going to be nauseous. Personally my weight has gone down with a j pouch I feel like my new normal weight is 8 kg lighter than my weight six months ago, and I don't have much fat on me anyway.

Hi Tony,  There is an excellent book written by Zarah Perry-Woodford entitled Ileo-Anal Pouch Surgery for Ulcerative Colitis A Guide for Patients available from St. Marks Academic Institute in Harrow, UK, the leading UK hospital for pouch surgery. It costs £10 & you have to contact Janice Ferrari the course manager at St. Marks to buy it. 

I realise you don't have or had UC but it gives a comprehensive insight into managing stoma care, diet, lifestyle, support & practical assistance. I wish I had read it before my surgery as I had to self learn having had surgery in Barcelona without much insight into what to expect apart from "there will be some tough times ahead". 2 years on I'm fine & glad the surgery was carried out so well.

Good luck

Paul


Yeah I'm uk (southwest) and had my jpouch recently!  Don't be too concerned with all the talk from our American friends on here about Dr x or various clinics!  I'm sure they are good but we have decent health care too.  In America this sort of thing is big money, so there is a lot of hype and advertising around specific doctors, in uk it is free on nhs so no need for the hard sell. 

i don't know if your situation would allow for surgery laparoscopically (key hole), if so that is preferable, as less recovery time. Any surgeon able to do bowel surgery via key hole surgery is probably near the top of his game.  The alternative is open surgery, which takes longer to heal but is easier for the surgeon!  Would be interesting to know which one they intend.

In my hospital they had 6 surgeons able to do bowel procedures but only one did key hole. Fortunately it was him i ended up with.

I'm from Durham and had all three of my surgeries done at the University Hospital in Durham so only down the road from Newcastle. I'm around 6 months post-op, I do experience urgency but it's not that bad through the day, gets more noticeable in the evening when everything is ready to come out my system. I'm trying not to let this get me down as there's still room for improvement, some people take a year or even more to see the full benefits. I only go around 4 or 5 times a day and I'm now down to just two Imodium tablets per day as well. Consistency is alright and as it should be if I watch what I eat (I love chocolate and tea so that tends to be why my consistency changes at times).

I had my take down surgery in july 2015. Still go between 5-8x per day. Take imodium regularly. Some food is ok 1 day but can send me running to loo another day. I am alive which is main thing with no cancer. Have a few problems with anaemia, waiting to see gastro again. Last year i had pillcam which showed ulcerated pouch and problems with duodenum. Wondering if the surgery stops my body retaining iron? Anyone else have this problem? Xx

Hellbuff posted:

I had my take down surgery in july 2015. Still go between 5-8x per day. Take imodium regularly. Some food is ok 1 day but can send me running to loo another day. I am alive which is main thing with no cancer. Have a few problems with anaemia, waiting to see gastro again. Last year i had pillcam which showed ulcerated pouch and problems with duodenum. Wondering if the surgery stops my body retaining iron? Anyone else have this problem? Xx

I imagine it will have an affect considering the goodness in foods aren't being absorbed as much with you not having a large bowel anymore and also due to the fact everything is coming through your system quicker. I was anaemic before and during my operations and had to take iron tablets with my other medication. I still have a feeling I am anaemic but my surgeon seems happy with my bloods at the moment.

I'm in the UK and had my j-pouch surgery done in Edinburgh. Excellent care and a first class surgeon with a lot of experience. 

The UK and US healthcare systems are so different. A lot of the stuff you read by American posters (which gives the impression that there are only a few places/surgeons in America who can do a decent job of j-pouch surgery, and you should be wary of having j-pouch surgery anywhere else than the Cleveland Clinic, etc) just isn't relevant to an NHS context. An NHS colorectal surgeon who specialises in j-pouch surgery should offer the same level of skill regardless of where in the UK the surgery is being done.

My j-pouch outcome has been excellent so far. I'm about seven months out, average 4-5 bowel movements every 24 hours, almost always sleep through the night, have no urgency or leakage, and do everything I was doing in life pre-ulcerative colitis.

Hope your surgery goes well Tony.

Add Reply

Likes (0)
Post
Copyright © 2019 The J-Pouch Group. All rights reserved.
×
×
×
×