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

www.ostomy.org/ostomy_info/pubs/IleoanalReservoirGuide.pdf

www.fowusa.org/newsite/pdf/UOAIleoanalGuide.pdf

http://www.j-pouch.org/diet.html

http://www.cheltenham-colorectal.org.uk/Patient_information.html  (and choose ileoanal pouch)

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

"OUTCOME OF POUCH SURGERY FOR ULCERATIVE COLITIS: SINGLE CENTER EXPERIENCE."

by

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.

A Very Brief History Of Ulcerative Colitis

A wise man should consider that health is the greatest of human blessings, and learn how by his own thought to derive benefit from his illnesses.

Hippocrates

Natural forces within us are the true healers of disease.

Hippocrates

Whenever a doctor cannot do good, he must be kept from doing harm.

Hippocrates

I have often wondered about the history of Ulcerative Colitis. I mean these things don’t just suddenly appear do they? It must have been with us a long long time. So here is a brief stitching (Frankenstein style) of what I found when I went on a little search around the internet.

The first description of Ulcerative Colitis dates back to 640 BC and many physicians up to 170 AD including Hippocrates described a condition with a type of chronic diarrhea associated with blood and ulcerations of the bowel.

There are some suggestions that Bonnie Prince Charlie – the young pretender may have had Ulcerative Colitis, which was aggravated by milk. This casts quite a different image of him, quite at odds with the rather dashing figure of history, film and folklore.

The Surgeon General of the Union Army, during the American Civil War, referred to Ulcerative colitis. 
Colitis as a specific pathology was first described by Wilks and Moxon in 1875; they called it "Inflammation of the large intestine or idiopathic colitis".

During the 1920s “colitis” was a strangely popular (amongst doctors) diagnosis, for a wide range of gut stuttering diseases. The number of individuals suffering from colitis increased steadily until the 1980s, after which the number has leveled out. Most recent reports show a kind of see saw effect, in which as the number of people with Ulcerative colitis decreases, the number of people with Crohn’s increases.

Crohn's disease was recognised as a unique and separate entity on May 13, 1932, (I don’t know the exact time) as this is when Dr. Crohn presented the paper on "Terminal Ileitis" to the American Medical Association.

In 1930, it seems, Ulcerative Colitis was seen as primarily a psychosomatic disease. I have strong views about this label as it seems to make the disease the fault of the sufferer. 

It’s interesting that this view seems to have kind of coincided with the increasing popularity of psychoanalysis. Now, I’m not saying there isn’t an interplay between mind and body, I’m sure there is. I just find it annoying that this view seems to imply some kind of judgment about the person as being feeble minded or hyper sensitive or weak.

(OK I’m going to step down from this particular soap box now before I get high blood pressure.)

The mind / Body debate continued for many years. In 1962 a paper entitled “Three Decades in the Observation and Treatment of Ulcerative Colitis” was published and here is an extract of an abstract of it:

“Whenever possible, the patients were interviewed psychiatrically by one observer; when this was not possible, data were obtained by means of a detailed questionnaire and correspondence. Abstracts of all data were computed by this one investigator for uniformity. Findings were systematically reviewed with respect to psychiatric diagnoses and changes in status.

The psychiatric diagnosis proved to be a most reliable variable in prognosis for both the mental and physical status. More than half of the patients coming to operation and almost two-thirds of those who died were diagnosed as having schizophrenia although schizophrenics comprised only one-third of the total group.”

(http://www.psychosomaticmedicine.org/content/24/1/85.abstract)

The current view of UC doesn’t seem to purport know the cause,dancing around the three corners of a medical hat labeled "psychology", "genetics", and "environment".

In the supermarket, the other day, the self checkout’s electronic voice intoned at me.

“Unexpected item in bagging area”

“Your telling me” I muttered.

Read more:

http://www.medindia.net/patients/patientinfo/ulcerative-colitis.htm#ixzz0nQnJiz00

http://www.bmj.com/content/2/5261/1226.3.extract

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2466707/?page=1