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Sunday, 24 April 2011

What next? To pouch or not to pouch?

Going backwards to go forwards? or going forwards in reverse? The old question of whether to undergo the reversal procedure or not is a vexed and complex one.

I should perhaps say, that I’m starting from where I am now, a 55 year old man with an ileostomy. If, as a 40 year old I was to have met myself as who I am now I would have been repulsed and very upset.That would have been more a matter of ignorance than judgement.

I just want to assure you, if you are facing the prospect of colectomy, that there is a good life afterwards to be had. Don’t despair! That is really important.

OK, that out if the way, let’s imagine there’s to be an election, (not sure what counting system we will use) but we are asked to rank the following in order of preferred life choice:

A: Get that bloody knife away from me – I’ve had quite enough of that and I’m happy as I am.

B: Yes please! reverse me at your earliest possible convenience.

C: It really hurts sitting on this fence!

In favour of option A:
The stoma’s not so bad, once you get over the psychological hurdle and accept yourself as you are. You can do everything you want to do – swim, cycle, walk, camp, go to parties, give lectures, take part in film making, enjoy curry houses, travel to exotic countries, and hypnotise people. I haven’t really had any problems; and certainly nothing as bad as having ulcerative colitis.

In this scenario you can’t ever get bowel cancer, and you can’t have ulcerative colitis. Your joints don’t swell up any more. No meds, preds, infliximab, steroids, colonoscopies, bog-trotting, chow-checking or buttock clenching. What’s not to like?

Problems with A:
You are reliant on surgical apparatus (which, at least in the UK, is given to you free of charge), without "the stuff" you are in fact incontinent. You can’t walk around without a shirt on. Romance, sex and nude performances of any kind are . . . difficult.

In favour of B:
Physical normality – oh yes please . . . I mean YES PLEASE! Oh to be aesthetically normal! It may be a trivial and entirely cosmetic concern but YES PLEASE!

The possibility of being “normal”, (I know –“whatever that is”) is a strong draw. To be free of what is legally a disability (although I don’t label myself as such) would be amazing, and to have something that functions properly, and is internal would be (to use modern parlance) totally awesome.

Oh to be free of all the baggage, the hair pulling adhesive, the creams, the early morning rumbling, the rare but unfortunate apparatus malfunction, oh yes please. YES PLEASE!

Problems with B:

Two more operations (in my case). That’s the first big thing to keep in mind, and as with all surgery there is a level of risk and even death. Getting a knife in the guts is dangerous; less so in modern times and in technologically advanced societies, but still dangerous.

Accepting and excepting the risk, the two operations are:

First – pouch construction- being a fairly major re-arrangement of your innards. Leaving you with a special ileostomy, and an internal pouch which is not connected but simply allowed to heal for a few months. Before continuing you will need to be tested to make sure your pouch is healthy and secure; the so called pouchagram. Which is a bit like the colonoscopy.

The second operation – the actual connection of the internal pouch- is comparatively straightforward. HOWEVER The consequences of B form the basis of C

C – ah! here’s the real rub.

If you go ahead, you have to be prepared for the long game. Operation 1 then three to six months then operation 2, then a year to let everything settle into place. So really that’s probably around a year and a half with some increased level of day to day difficulty.

I have read that immediately after the reconnection you could be bog trotting around 20 times a day, and that over the next year this should reduce to between 4 and 6 times a day.

It seems that there is likelihood of – dreadful but functional phrase – “butt burn”. This is caused by the fact that the digestive juices and acids are not dealt with by the pouch in the same way that a colon does, and therefore can burn your bum. It seems to me that frequent and extensive ablutions would sort this out. That’s OK I love bathing.

It also seems that your diet is going to be limited to some degree. Say goodbye to the spicy chicken and cashew nut, the brinjal pickle and the chilli sauce, even the innocent old colonel mustard may present a problem. Add to that a deep suspicion of any veg with a shiny or waxy skin, and you are starting to approach a limited cuisine. But maybe that’s OK if you’ve got your arse back.

The real problem is that it is really hard to get clear objective knowledge of the risk factor.

I went to my Doc the other day, he’s a good bloke, and a very experienced GP. I asked him where I might drink from a good source of information. He brought up Google and after a few taps recommended “NHS Choices”. He was in the same boat as me it seemed.

He did say that as part of any consent procedure I should ask my surgeon about the risk factor I faced, what his success rate is, and how many complications and surgical mis-snips he has. The thing is, I want a good overall picture before we get to that conversation. General ignorance accompanied me into the theatre for the colectomy, but then I didn’t really have choice.

I have found some information on the internet which you may wish to look at; search for “Ileoanal reservoir guide” or take a look at

As always it is important to remember that no one thing you read is the whole truth, and therefore not to over react to what you read.

For example I got quite disturbed reading a study of 58 people whose problems started with Ulcerative Colitis; 23 of whom had J pouch construction surgery. The outcomes were:

1 Death
4 Pelvic Sepsis
2 Bowel construction
1 Leaky internal pouch
3 wound sepsis
9 anastomic stricture (Narrowing, usually by scarring, of an anastomotic suture line.)
5 Pouchitis
3 incontinence

To read this pdf click here. It's called

Ahmed Abdel-Raouf, Mohamed El-Hemaly, Tarek Salah, Emad Hamdy, Omar Fathy, Nabeih Anwar, Ahmed Sultan
Gastroenterology center, Mansoura University, Egypt, 2008

Doesn’t sound good does it; but it’s not the whole picture, I may have too little medical knowledge to understand what I’m reading, I don’t know how Egypt and UK compare in terms of surgery, and I don’t know if there is a hidden agenda in the paper. One study isn’t the whole picture.

So it’s just more info to add to C

By the way I did hear from Martin (numbertwos) a while ago whose description of success with the operation seemed fabulous. He was pretty well back to normal, but then he’s younger, and had a different operation and started from a colostomy not an ileostomy. . .

So the wheel continues to turn.

Listen; I have to go and mend Clare’s puncture – on her bicycle I should add.

Be well.


  1. Tough decision. The best armor is knowledge, and I'm glad to hear you're going into this process armed to the gills.

  2. By considering openly and frankly such a huge and tricky issue and filtering in valuable information, by explaining your thinking and writing so clearly,you remind us, Arkers, what blogs are for, or should be: to exchange useful information and help each other through life's difficulties, as well as to celebrate the good stuff. A+

  3. Gloria,

    I thank you for your comment most sincerely.


    I thank you not just for this comment but your poem on your beautifully wobbly site. :-)


  4. It's a hard decision...the right choice will present itself to you ... probably when you least expect it to. The problems with blogs as you said before is that people only post when times are hard...we rarely hear when people are doing well. Great posting though :D

  5. a difficult decision. Thanks for posting. I've escaped having to think about this for the time being, but it is good to keep informed just in case.

  6. My son just got his colon removed. Had UC for 5 years and medication did not control it at all. Almost ruptured, but has an ileostomy. Still has rectum and sigmoid colon. He does not have a J Pouch yet. Doctors are pushing him to get one. He's not unhappy with the bag. He is very comfortable with it. His surgeons are just pushing and pushing the idea of a J Pouch on him and he told them he wants to live now... thank you very much. It certainly will divide the shallow people from the not shallow people in dating situations. If someone really loves you, they will take you as is. There are all sorts of contraptions to hide the bag. He has a low stoma below the bellybutton, so it's easy to hide his bag. Oh and he's the type that would walk around naked with the bag on! He doesn't care, but he does care about pelvic sepsis because his aunt died from it. That cured him of wanting a J Pouch. He's keeping his rectum and sigmoid colon, hoping for better solutions in the future.

    1. Hello Anonymous. Thanks for dropping in. I've only just seen your comment; you make many good points for me to chew on. Thanks.


I'm always interested to hear any thoughts or stories of your own. Please do comment.