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

Gentle Reader. . .

A largely irrelevant picture 

A bit of a strange collection of thoughts here, but come with me, if you will, out of the city, up the path and over the hill and down to the water’s edge.

I try to imagine you; as you read, eyes jumping from word to word. Outside the window, maybe a city, or a lake, or a desert or perhaps a small town near the sea. Who knows. . .

I wonder what questions you have and what brought you here, and where you are on your journey. Your journey is always and only your journey, and this is mine and mine alone.

My room is a dark one in the centre of the house, but light filters in through the music room and is diffused by the curtains Clare has put up. I have a fireplace and a mantelpiece. Two reclining leather chairs, a worn out rug that needs chucking away and a load of boxes containing lights, cameras, electrical junk, magazines, photos, and . . . well a lot of junk I suppose; stuff I find interesting.

I wonder what kind of room you read me in. What sounds seep up the stair or in from the street, or out of your computer. I wonder what questions you are trying to answer, or what function reading a blog can have for you?

Some people must get here by accident and others are specifically searching. Some seeking to buy a hunting knife may suddenly find themselves here and wonder what all this crap has to do with the adventure they plan. Others may be seeking answers questions like what is life like after a colectomy, what is butt burn, what is surgery like and how do you deal with it. Some may seek an optical device with very sharp focus.

I read other people’s blogs as you can see from the side panel. Speaking for myself, at first I read them for information, scouring the net for signs and clues as to the path that I would take. I now realise it is not for information. It is to visualise other people and understand how others – you – deal with the dread disease.

In our separate journey’s I look for something common to us, some sign that we can survive and overcome and step forward.

I think it is mostly for connection. I think that’s why I read them. That and the fact that I’m a bit nosey to be honest.

Anyway you see the question I pose

“What are we looking for?”

It is with great pleasure. . .

You may, if you've been reading my blog for a while,remember that as a result of the dread gut disease I became interested in Hypnotherapy. 

The other day we were presented with our certificates. I am very satisfied and excited about this.

New things from bad things.

I am now a qualified Hypnotherapist.

If you'd like to see my website - here is the address.

http://www.hypnottik.com/

An almond, and the world.

In The Souk

“La Personne citée sur ca certificat a subi une opéeartion churgicale  pour retirer le colon et a une iléostomie . . . .”

“. . .Se fosse necesarrio esaminere la sacce, é richiesta la presenza di medico qaulificato . . .”

“ . . .Cualquier interferencia puede causer fugas y que la persona sufra molestias e incomodidad. . .”

The certificate firmly clasped in my hand, I stepped through the metal scanner at East Midlands Airport. No problem. Apart from the certicificate itself being scanned (unread) and I was waved through.

I had been slightly wary in anticipation of this moment for a few days now. The certificate checked and re-checked along with a letter from the doctor as often as my passport. It was the first time I had flown since my operation in 2009.

I had, in the midnight madness of dreadful dreaming, imagined being escorted to a small room and ordered to disrobe, de-bag, explain, undergo searches, and finally suffer several years of imprisonment in solitary confinement. Such is the leaping power of imagination in the dark hours.

But there was nothing to it.

Marakech is a place of smells, satellite dishes, colour, mopeds, spices, noise, snakes and monkeys. It is also hard to get away from from cous cous, chicken, olives, peppers, tagines, and salted almonds.

I love salted almonds. I love them a lot. The mysterious taste of almond which is not quite sweet or savoury. Mmmm. I wanted more and more. There is something in animal nature that knows when the body needs more of something. My mum, for example, ate coal when pregnant. There is something in almonds that I want.

After a few days of Marakech in which I am eating a low fat, low alcohol, low danger diet my body is right up to the mark.

Eventually it’s time to go home and in Marakech airport I face the security procedure again, and again I’m nervous.

I’m waved forward through the metal detector, and subjected to a thorough pat-down. I am going to jail for sure. I point out that I’m still wearing my money belt.

The man dismisses this explanation and starts feeling around my middle with methodical hands. He is giving the top of my bag a bit of a squeeze. I am feeling a rising panic about this, and reaching round to my back pocket for the travel certificate with widening eyes. This is momentarily quite invasive - I mean who wants their bags felt in public by a stranger.

“Passe”  he says.

I Got home last night late, and realised that my gut was becoming blocked.

So if you are in a similar situation; don’t worry about international security, worry about the almonds.


By the way: 
You can obtain a Travel Certificate from National Office. Either e-mail info@iasupport.org, or telephone IA free on 0800 0184 724

The certificate is printed in English, French, German, Greek, Italian, Portuguese, Spanish, Arabic and Chinese.

Also getting travel insurance with a medical condition is tricky; without moving into advertising I thought I would just point out this company actually know about insuring people with pre-existing conditions. 

Any moment

Clare brought me the phone and mouthed the word “hospital” at me. I took the phone and said hello. It was Fitch’s secretary. Did I want the operation on the 17^th  of any-moment-now. I gulped a couple of times like a fish in a net. This had come out of the blue. Seems to be the way round here.  

I looked at my diary and realised that my final two days of training as a Hypnotherapist would be in the way, but perhaps I could get round that. Also I had been waiting to be put in touch with someone who’d made the journey through J pouch construction.

Martin, of Number Twos has ceased his legendry transmissions from the front line. I had not met anyone. I felt that the 17^th was too soon. I needed – need- a bit more information.

I had imagined that despite two ops, and a bit of time, I was going to be fixed and as good as new. BUT then I read the forums, and scanned the net. And I realised it’s not that simple.

I did find someone to speak to on the phone who has been through it all. A very nice man with a gentle voice, and refreshingly un evangelical in either direction.

What shall I call him . . . ?  Mr Jay’s description of life on the other side seemed to fall short of the ruddy duck I was –am- hoping to be. He said he was glad he’d made the decision, and gone ahead with it, but there was sand in the Vaseline.

"Butt Burn", a diet of pasta and potatoes, limited appointments with Bacchus (it’s nice to see him occasionally), eight bog stops a day.  .  . He did point out that forums tend to be a bit of a self selecting commentary box. . . but nevertheless. . . I realised that there are advantages to life with Banquo. An insight in itself.

Is it vanity that drives me to be prepared to submit to the masked man in green pyjamas a further two times? I’m not sure I know the answer.

Occasionally, not often, Banquo will shake his gory locks and embark on an unscripted soliloquy. He does occasionally protest at quiet moments in certain films, and has once or twice tried join in with a hypnotism. Mostly though, he keeps his council.

I don’t want to pollute your mind with uncalled for imagery, but even I sometimes want to anoint my body with scented oils, slip into something more comfortable, turn down the lights, slip a little Mantovani onto the turn table. Advance upon a lover like Lesley Phillips. That’s part of life isn’t it. I might one day, want to actually get a tan on the French Riviera, or sit around a pool sipping a long cold drink in nothing but budgie-smugglers and a smirk.

I wasn’t planning to start performing in the nude, or join a nudist colony. 

But . . . Do I want to spend the rest of my existence in this un-natural state? 

Then again . . .

Do I really want “butt-burn”? Do I really want to be bog trotting 8 times a day again? Do I really want to live on a bland diet of pasta and potatoes for the rest of my mortal?

I agree with Mr. Jay; if you are having a wonderful life, and everything is fine, there is no motive to post on a forum or write a blog. The result is that most of the information and first hand reportage I can find, is actually a bit off putting.

I would really like to find someone with a positive experience of reconstruction. If I find a few I will be happy to have the knife, you see. 

There must be examples out there. If you are  such a person; please drop me a line.

Brainwaves

Catch some alpha waves.

The possibility of measuring brainwaves with an EEC machine in real time (Strange phrase) means that researchers and neuroscientists have, in recent years, been able to see our brains in different states. Pop on the strange electrode peppered skull cap, and perform certain tasks, or enter different states of consciousness and the machine can see the difference.

Did you know, you generate four distinct types of brainwave?

Beta for busy. When you are involved in vigourous rapier sharp debate, on stage, playing chess, or deeply engrossed in sodoku; that’s when you are generating beta brain waves. These waves are fast and made of little waves (small amplitude high frequency)

Alpha waves. When you relax your mind and let your body go limp, when you are moving slowly and smoothly in the moment, when you are staring at the flickering flames of a fire, or find yourself staring from the window, or in a kind of dream watching the sea. Or indeed when you are in a hypnotic trance or in meditation. That’s when you are generating Alpha waves. Stronger but slower (Bigger amplitude, lower frequency.) It’s interesting to note that you don’t have to be inert to generate alpha waves. It could happen when you are “in the flow” – cycling, walking, running, playing an instrument, etc.

Theta waves: You are asleep and dreaming, or possibly in a state of deep meditation or deep trance. Even slower frequency.

Delta waves; dreamless sleep. When you are asleep but not dreaming, when you are unconscious. Very slow frequency.

Don’t go any slower or you are dead.

Interesting, but so what?  What does this mean for someone turning up for a session of hypnotherapy?

First thing to get straight is that a proper Hypnotherapist is not going to get you to run nude around the room imitating a chicken. Second thing: they couldn’t make you if you didn’t want to, in fact they can’t hypnotise you unless you want to be. Also you won’t get “stuck” in hypnosis – if nothing happened you would return to beta land in a while, and if there was an emergency you would pop back in an instant.

Research into hypnosis, hypnotherapy and neuroscience seems to fall broadly into two categories. One area is about what happens in the brain when you are in “trance” like states, and includes the study of things like the brainwaves mentioned above.

The second area is concerned with the effect of suggestions made to someone in a trance. There are hypnotic suggestions (which act during the hypnotic state such as “now I wonder if you can imagine the view from your window”) and post-hypnotic suggestions (which act after the hypnotic state is over, such as “when you next put your hand into your pocket and feel the edge of the cigarette packet you might take your hand out and decide instead to drink some cool clear water”).


So you might arrive for your session and there might be a fair amount of talk first, perhaps about the previous session, or how things are progressing, or how you feel about your presenting issue. Next there would be the hypnotic part of the session. You would be in a nice comfy chair, and you might be asked to relax and breathe more slowly, or something like that. The Hypnotherapist would probably speak a bit slower than usual, and you might close your eyes and go on a meditative journey.

This is where your brain waves would most likely change from beta to alpha waves. You probably wouldn’t fall asleep (although you could), and you would probably be actually very focused on the words and the voice and the journey. At least that’s what I experience.

In the alpha wave state you are very relaxed and receptive to ideas and connections and so on. If you were asked to imagine the colour Yellow you would probably (but not necessarily) really “see” yellow. Not the same as imagining it now while you read this. It’s also possible in this state to get rid of unwanted noise and clutter and really focus on one specific thing.

For example you might have seen this thing on some brain trainers where you have to point to the blue lettered word:

BLUE      YELLOW

In our normal beta state our conscious mind is momentarily confused as it runs between two sets of conflicting data, we can’t easily turn off our automatic word reading function that we have built up with years of practice. One part of your brain is reading the word yellow, and knows it conflicts with another part of the brain which identifies the colour yellow.

It’s called the Stroop effect. But under hypnosis it might be suggested that the English words were meaningless squiggles and then it would then be easy to spot the word written in yellow, because the automatic reading would be turned off.

So if, in hypnotherapy, it was suggested that all doctors are not bad, and that you can see them as people rather than functionaries, and that next time you go to the hospital you might notice the human underneath the white coat (post hypnotic suggestion) it is possible that in reality you may well see “them” in a different light. (By the way that was my presenting issue at one point -I'm not saying that doctors are bad.)

Equally if your were relaxed into a very calm and peaceful state of consciousness, so that you were chilled as an ice cream, and then you were asked to pinch your forefinger and thumb together, you might find that afterwards, back in beta land, that if you pinched your forefinger and thumb together you might feel all calm again. (This is an anchor)

Not so weird when you think that if you heard one of your most favoured teenage tracks from way back when (that’s a long time ago for me) you might be transported back to . . . that time and place. Ahh . . .

So then, after a while, the Hypnotherapist would encourage you back into beta-land. You might be a bit “blinky” for a couple of minutes, and you might need to adjust for a short time. There would probably be some more talk at this point.  You might find that you had a distorted idea of how long it all took, and it’s true that some of the details might have faded.

So if you had, for example, Ulcerative Colitis, which was being whipped up by certain stresses in your life, you can see how this might be a good way to combat the stresses. In experiencing less stress you would have less of the stress hormones in your bloodstream.

Alarm response, resistance, exhaustion. This is the stress cycle. Something worrying happens you have an alarm reaction and flood yourself with adrenaline etc. If the stressor goes away you are able to return to normality, but if it keeps going you will have to resist. So you will constantly be releasing stuff into your bloodstream and feeling bad. If you have Ulcerative Colitis, and you are stressed by this, you may have to cope with it for several years with horrible peaks of stress during flare ups. Eventually you will be exhausted. And that is not good for you.

Even just generating alpha brainwaves, or being in a situation that brings them on could, I suggest, be a very useful thing to experience.

You can also catch some alphas in many other ways:

Meditation, yoga, listening to music to name but three.

So. . .

Just thought you might be interested . . .

I’m exhausted myself now – time for a nice cup of tea.

Oh by the way - I can't see a way to the follow this blog but I reccomend http://blog.dugnorth.com/
Most fun and interesting.

A