Dance Your Own Jig

How does everything fit together?

Do you sometimes feel that your skin doesn’t fit?
That the arms are too long,
or the legs are too short.
That the eye-holes are tight and itch just a bit
That your hands are on backwards,
and your hair’s the wrong sort?

Do not heed to the teasing,
You can fly like a fish.
Do not weep for the wanting,
you're as wise as a stone.

Find the keys you are missing,
Be as big as a beetle.
Wear what you want to,
Be a cat with a bone.

If the words in your heart are friendly and true,
but sharp words come out,
and break at your feet.

If you've looked in a mirror
and a stranger stared back
If outside you are scruffy,
but inside you're neat.

Do not wish to be wanted,
Be as brave as a chicken.
Do not cry if you loose,
Be as bold as a duck.

Don’t hide in the shadow,
Be as bright as a spider.
Play the jazz that you want to,
Break a mirror for luck.

If you once had wings,
but were taught not to fly,
Or a heart like a drum,
too big and too loud,

Or a song in your head,
but were too shy to hum.
Or hate to be part of a crowd.

Never mind what they say,
Sing the song of the lizard.
Do not care who is looking,
Dance the dance of a snail.

Find the words you were seeking
Soar like a pig;
Hear your own fiddle,
And dance your own jig.

(©Roger Knott-Fayle)

Mind body split

I blame Descartes; for it was he that concluded that the mind and body were separate. According to Descartes physical things such as hat-stands, blancmanges, and houses have “extension” in various directions into the physical world. Thoughts, however, do not.

The mind according to Descartes is a non-physical thing that thinks; and is entirely separate from the body.

This causes a problem though, because clearly the mind can have an effect on the body. Think of a lemon and your mouth may water, think of your fingernails being pulled off and your heart rate may rise, think of jelly down your trousers and you may start to laugh.

But how can this non physical thing have a causal effect on the physical body? This is the so called "problem of interactionism." It was thrown up (if that is the right word) by Descarte’s (Where to put the apostrophe?) musings on the split between mind and body. It caused him a problem because undermined his theory. Merde! Combien incommode!

In order to fix this glitch Descartes decided that animals were in fact automata, and that us humans were different as we possess the pineal gland located the centre of the brain between the two hemispheres. The only part of the brain not duplicated. He, incorrectly, believed that animals did not have the pineal. Others tried to resolve the matter by arguing that mind / body interactions were the result of interventions by God -no less.

At this point I think we can see the mess that splitting ourselves in two can lead to.

Common experience demonstrates to us that there is a great connection between the mind and the body. We know, for example, that anticipation of a difficult experience can make the heart beat faster, your armpits and forehead sweat, and bring about the urge to find a loo.

In some eastern philosophies the mind body split does not seem to appear so much. I believe that Buddhism talks of mind body unity although I’m not sure about this. In western medicine we have stitched ourselves together rather cruelly by using the word Psychsomatic.

There is still debate as to whether Ulcerative Colitis, for example, is a psychosomatic illness. For example in 1983 Milton Rosenbaum MD wrote a paper (Ulcerative colitis, Psychosomatic illness review: No. 10 in a series) in which he says there is extensive clinical evidence which shows that in someone who suffers from Ulcerative Colitis, emotions and personality will play a large part. In particular he suggests that there are intrapsychic conflicts which lead to regression to anal behaviour, and dependant immature emotional relationships – especially with Mum. Thanks mate.

The difficulty with this kind of description is that it appears to be a bit judgemental, and implies blame. Maybe it is because words like immature are considered, in ordinary language, to be insulting. In medical language it may be a precise term.

Thinking of my own experiences, and trying to see beyond the language I’m starting to wonder whether there is some truth in this. Only recently in my mid 50’s have I started to realise that I may actually have abandonment issues.

At the age of 7 I was sent to a boarding school. Nothing has frightened and hurt so much since. The sight of our clapped out grey Cortina disappearing down the school drive, and the feeling of undiluted fear is seared into my being. Add to this the fact that my home was in the same village, and that I could actually see Dad driving the tractor about the place, see the house I called home, yet I could not go there, was a Tantalus too far.

In the Journal of Psychology, 2004, 49, 683 – 705,  Joy Schavarien has an article entitled “Boarding School: The trauma of the privileged child”. This articulates very well the strange schism I felt. In particular, the difficulty of balancing the idea that this experience was an expression by my parents of how much they cared for me. That in being rejected I was loved. That they were sacrificing so much to send us all to good schools was hard to understand.

At such a school there is a really inconsistent view of the relationship between the mind and the body. On the one hand they are separate; physical weakness and pain can be simply ignored by a disciplined mind. On the other hand they are intimately connected; a mind that is weak and feeble can be fixed by physical punishment.

A track or a trace is left in the mind, a habitual way of thinking, a stream of self-doubt, a morbid fear of authority, a fractured resistance.

You know how when you are scared you feel it in your guts, like a serpent writhing inside. I felt that a lot, not just at school but often afterwards. I certainly was, and maybe still am, a little unsteady.

I’m not suggesting that everyone else with UC has necessarily got the same kind of connection. That is for each individual to decide. For myself I think there is.

My speculation is that these experiences, in conjunction with my genetic inheritance, may have been at the root of my Ulcerative Colitis.

Furthermore I speculate that by a harmonious balance between mind and body, both will benefit.

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.