A stoma on the Grand Canal

Situated here



Mysterious.


Nothing to do with blood or guts, just to say I've been on holiday to Venice (Italy).

Still no decision on the reversal procedure. Time is running out. I still can't find a good source of information.

A venetian post

If you have just been diagnosed with Ulcerative Colitis:

It is not your fault. You haven’t done anything wrong. Give yourself a break and don’t blame yourself. As I understand it the causes of Ulcerative Colitis are still not really understood. Some say that it is your genetic inheritance – and no one should be blamed for that. Some say it is a psychosomatic issue – and that is not a matter for blame. I think I’m right to say that almost everyone says that it has something to do with you immune system. I don’t think anyone can be blamed for that either. So it is not your fault.

The doctors do not really know why you have got Ulcerative Colitis, and in my experience and belief they are not really quite sure how to deal with it. This is not said with venom but as an observation. It’s a tricky disease, and the answers just aren’t yet there.

It’s possible that early visits to the doctor and an examination of your symptoms might have brought forth the idea of IBS. This is different. The initial strategy of your doctor will (I think I’m right in saying) be to prescribe certain anti-inflammatory pills and potions in a kind of ascending order of severity. I started with Prednisone. Other similar drugs include Azathioprine, Mesalazine, Sulfasalazine, Balsalazide, Olsalzine. Hopefully one, or some, of these will bring about remission. There are also enemas that you administer to yourself, and they try to get the medicine to where it is needed.

If you haven’t had one already, you will probably need to prepare yourself for a colonoscopy at some point. This is not much fun; but in fact it is uncomfortable rather than painful. I found the main difficulties were psychological. The medical profession can seem only to eager to find yet another way to invade your privacy; but in this case it is the only way to properly see what’s up (maybe I should change that phrase).

Whatever the origins of Ulcerative Colitis, and whatever your temperament, I’d say that finding a way to reduce your levels of stress is going to be important. I think most people will agree that stress is going to aggravate the situation.

Practical things to make the day to day less stressful:

Know where all the loos are in your everyday environment. You can apply for a RADAR key which will let you into locked public loos which are cleaner and easier than the cramped public bog.

OK, I know this sounds unpleasant – but prepare for the worst. I used to carry what I called my “shit kit” - just in case. You can also get cards that say things like “URGENT” and explain that you need to use a loo. The idea is that you thrust it into the hands of suspicious proprietors of cafés and shops to save time and embarrassment.

The next tip, I'm sorry to say, is not really very healthy. If you are going on a journey, or working in an unfamiliar place where you don’t know the loo situation remember the adage “An empty Bottle Will Not Spill”. I used to eat nothing, or next to nothing, before going into such situations. I’m just saying that is what I used to do.

Drinking alcohol makes it worse.

You are more likely to get dehydrated if you have Ulcerative Colitis; because your gut is not re-absorbing the water as effectively as it should.

Watch out for aching and swollen feet and legs as it seems from reading the blogs, and from my own experience, that it’s quite common to get gout like symptoms. I’m afraid it really hurts and I never found a way round it.

If you don’t get into remission, you may find yourself on infliximab, a relatively new and expensive drug. It’s a recurrent 6 hour infusion. It’s not so bad. Even if it doesn’t fix your gut it will help your aching legs. For me this was the end of the line for my gut.

The infliximab did nothing to help, and I had reached the end of the medicinal route. Gulp.

If you too are past all this, and you are facing a colectomy:

There is no denying that the prospect is terrifying and psychologically difficult. It threatens your self image, not to mention being radical and irrevocable. If you are faced with this possibility, find a way to look at it the most positive and useful way you can. Please don’t allow fear and loathing to get in the way of the person you really are.

The reality of living as an ostomate is really not as bad as it at first seems:

You will be able to eat what you like, you won’t have to worry about the nearest loo, you won’t get colon cancer, you can never be accused of farting in public, it won’t stop you from doing physical activities, they can’t give you a colonscopy, you won’t have to take drugs. What’s not to like?

OK, there are things you have to reconsider:

Clothes; I think if you wear floaty dresses and such like it is going to be a lot easier. If you wear trousers and a shirt it’s more difficult because the belt or waistband may strangulate the bag in the middle, and the upper portion can bulge weirdly. In order to solve this you need to get some good high waisted underpants that are designed to come up over the bag. You may need to loosen your belt a little as well.

You may find, especially at first, that the whole apparatus can come unstuck. This gets better as you get more adept at the process of changing it. So certainly at first I suggest that you carry spares, disposable bags, and wipes.

If you want to swim I suggest the triathlon suit. It is fantastic and nothing shows. Honestly.

I hope this is useful to someone. If anyone has other hints why not share them here.

Musenight

Brigadier Banquo

Perry Jaxman: Hello and welcome to Muse-Night, with me Perry Jaxman. It’s nearly 2 years now since the so called “Excision” of Christmas 2009, and in that time there’s been much talk of “Reconnection” by both the Pros and the Cons. To examine the various issues around the bloody and convoluted question of Reconnection, tonight in the studio we have the secretary of state for self image - Vanity Blair . . .

Vanity Blair: Hi Perry.

Perry Jaxman:  Head of Operations on the Isle of Stoma – Brigadier Banquo . . .

Brigadier Banquo: Evening

Perry Jaxman: and Commander Brian Box of Central intelligence.

Brian Box: Hmm

Perry Jaxman: But before we tackle these issues lets just take a look back at the events that have led us here with a report from our special correspondent, Kay Taydee, who looks back over the last 2 years:

Roll VT

Kay Taydee: It was in October 2009 that President Arkayeff finally signed the so called “treaty of no return” that agreed to the complete removal of the crumbling evac system, and the building of a new terminal on the Isle Of stoma.

At that time I interviewed a haggard but defiant dissident leader; Lieutenant R.Sole about the hated treaty.

(Archive footage of Lieutenant R Sole)

“It’s not just about the evac system, although I believe that with proper maintenance the system can be saved . . . I think there’s another 30 years of service to be had . . . but more than that it’s about defending our dignity . . . our sovereign identity.  We’ve been let down by President Arkayeff . . . it’s a betrayal – a bloody betrayal  . . .and I pledge that whatever happens we – the republic of the free will never surrender!”

But despite those impassioned words, on 22nd December 2009 the troops and the hardware went in, and forcibly removed the evac system. President Arkayeff  appeared in public, but despite the brave front it was clear that he was weakened. Here seen looking frail and tired he tried to fool the world by walking – slowly – 200 yards along a road.

At the time I managed to get secret and exclusive access to the militarised zone:

                                                                                                                       

Archive footage of Kay Taydee wearing flack jacket and helmet in military helicopter:

“It’s now three days since what is becoming known as The Excision. Below me a long red and angry scar that stretches from Mount Sternum to the southern reaches of The Naval Plateau. I can clearly see the steel glint of staples that hold the fragile east-west fault together. Without them the entire state would literally fall apart. To the east of the ancient city of Umbilicus lies a strange new world . . .

And I was able to gain secret access to that strange new world a couple of days later. An entirely new city had been constructed in the desert. In effect a new evac system had been built – the controversial, expensive, and man-made Isle Of Stoma.

And to this day it remains a focus of controversy, loved by many for bringing new life and energy; a permanent reminder to others of submission and humiliation. The Isle Of Stoma remains, a sensitive subject. And throughout its short history one big question remains: Should it stay or should it go?

This is Kay Taydee, from the ancient city of Umbilicus for Muse-Night.

Studio:

Perry Jaxman: So there we have it Brigadier Banquo – The Isle Of Stoma – a mark of submission and humiliation.

Brigadier Banquo: No at all, not at all. The Isle Of Stoma is nothing of the sort; it’s a mark of resilience and survival, and we should be proud of it. A fully functional evac service; integrated with every other system, allowing freedom and independence. That is the truth about The Isle Of Stoma

 

Perry Jaxman: Vanity Blair. . . . something to be proud of?

Vanity Blair: I mean C’mon. This is feeble nonsense isn’t it? We’ve thrown our inheritance down the sewers, that’s the truth. Am I the only one who remembers the sight of our boys standing to attention on the deck as we steamed into harbour? Our own flag run up the mast? We’ve given all that away for this filthy mudbath of a city. . .

Brigadier Banquo: I simply can’t let poppycock like that pass, it’s filthy work but someone has to do it. No choice. That’s simply the nature of the beast. . .

Vanity Blair: The Isle Of Stoma is an affront; an affront to our image, an affront to our nature, and an affront to our society. You talk about independence Brigadier, but you know only too well that without outside supplies your operation would leak like a sieve and stink to high heaven. . .

Perry Jaxman: It’s a bloody mess isn’t it Brigadier. . .

Brigadier Banquo: It is this kind of body fascism and nonsense - this trite obsession with the surface of things,  that holds us back. If we want to move forward we need to move on. Forget about the old evac – it was scuppered, kaput, and the ship was about to give up the ghost.  We’ve got a new, efficient way of dealing with that. Let me get on with keeping you alive, while you go shopping and looking in mirrors. You talk tough Mr Vanity Blair, but in reality you are about as rough as a frilly collar.

Perry Jaxman: You’re very quiet Commander, what should we do here? You were in command at the time of The Excision, and now you’re the head of Central intelligence, so you should know the answer shouldn’t you?

Commander Brian Box: Simply don’t get it do you. . . It doesn’t matter what decision we make. . .

Perry Jaxman: How so?

Commander Brian Box: We can’t know . . . the future. . .

Vanity Blair: It’s well known, Commander, that you have gone all spiritual on us in the last year or so. . . but surely as the head of central intelligence you should know future.

Commander Brian Box: I presume by spiritual you mean my interest in the power of the mind . . . . well at least I’m talking about our best organ. Never mind your boys standing to attention on the deck. . . as for intelligence – there is none. The truth is: no one knows; doctors, internet, even people who’ve been through it all . . . . they don’t know what’s best. . . and since the outcome is unknowable the actual decision taken doesn’t matter.

Perry Jaxman: A somewhat fatalistic point of view wouldn’t you say Brigadier?

Brigadier Banquo: I have fought on enough battle fields, and been stabbed in the back often enough to know that even at the eleventh hour you have to knuckle down and brass up. If you, Commander, wish to resign yourself to the sly threads of fate, and you Mr Vanity Blair are, and more concerned about our image at all cost, then good luck to both of you. In the meantime I’m keeping this ship running. I know my duty.

Commander Brian Box: Brave words Brigadier, and I applaud you for your passion. You remind me of a man I once knew. And do you know where he is now? In the bilges as we speak. Yes that’s right. Lieutenant R. Sole.

Vanity Blair: Traitor!

Commander Brian Box: Best bloody R. Sole we ever had.

Perry Jaxman: Gentlemen please!

Brigadier Banquo: It’s an important point - At least R. Sole had some guts.

Perry Jaxman: Last word to you Vanity Blair. . .

Vanity Blair: Look. The other day I sat in a restaurant with a much loved friend and she asked me why self-image mattered. After all, she said, no one in this room has the slightest clue. That’s not true I said. You do, and so do I and that is an affront. . . . . Look . . . . All I’m saying that we’ve taken the first step on a journey. We are too far stepped in blood now to return. You, Brigadier, should surely know that. You talk about guts? The brigadier won’t screw his courage to the sticking point in case we fail. As for you Commander, time is running out – hear the bell – for it summons us all to heaven or to . . .

Perry Jaxman: Thank you Gentlemen, that’s all we have time for. I’m sure we’ll get lots of correspondence on this.

The Voyage

Commander Brian Box.

1997:

Petty Officer R Sole:

Red alert! Red Alert! Emergency waste evac in 40. . . 39 . . . 38 . . .

Commander Brian Box:

Override that Petty Officer Sole! Now! We are working! This is no time for emergency evac. Override! I say again Override!

Petty Officer R Sole:

Sorry sir! I tried that Sir! Override has malfunctioned , evac in 32 . . . 31 . . .30. . .

Commander Brian Box:

Code Red. This is not a drill. Sound the Klaxon! All systems – Code red. GPS plot a course to the nearest loo.

GPS:

Nearest loo in 1 minute 14 seconds sir.

Petty Officer R Sole:

28 . . . 27 . . . 26 . . .

Commander Brian Box:

Legs? Status?

Legs:

Sorry sir, we are at full tilt now Sir.

Commander Brian Box:

All Systems! Heads up! We need alternatives – NOW!

Obs:

Building skip ahead Sir.

Commander Brian Box:

Legs!

Legs:

On it Sir!

Petty Officer R Sole:

14 . . . 13. . .

Commander Brian Box:

Hans! Get ready with the belt!

Legs:

In the skip Sir!

Commander Brian Box:

Hans! Belt!

Hans:

Oh God! Oh God!

Petty Officer R Sole:

8 . . . 7 . . .

Commander Brian Box:

Hans! What are you playing at? Belt! We’re going down for Christ’s Sake!

Hans:

Sorry Sir! Can’t . . .

Commander Brian Box:

Forget it! Trousers! Hans! Trousers!

Petty Officer R Sole:

3 . . . 2. . .

Commander Brian Box:

HANS!

Petty Officer R Sole:

1. . Evac commencing. . . .

Legs:

Oh my God!

Commander Brian Box:

Jesus! Turn off that Klaxon. What the hell was that! Security! Arrest - Petty Officer R Sole and Warrant Officer Hans and bring them to my office – NOW! . .  Well done legs. . .

Legs:

Thank you Sir.

Commander Brian Box:

Get us out of here will you.

Legs:

Sir.

5 Years Later:

Commander Brian Box:

OK so lets review the plan: Objective – shopping here, here and . . . here. Obs; What’s the situation out there?

Obs:

Three Loos en route to shopping centre Sir: Nags Head, The Elbow Café, then a bit of a gap until we get to The Yorker Sir.

Commander Brian Box:

Legs, what’s the time frame in the gap?

Legs:

2 Minutes 13 Seconds Sir, 1 Minute 58 tops. . .

Commander Brian Box:

Hans?

Hans:

Shit Kit stowed, spare clothing stowed, Buckle on hole 3, last emergency deployment was 7 seconds Sir.

Commander Brian Box:

OK, Sargent R Sole, slightest hint of trouble sound the klaxon, Legs immediate diversion, GPS I want constant position info on my screen at all times. In the event of emergency in the shopping centre we’ll divert to the House of Fraser, floor 1, OK lets do this!

2 Years Later:

Security:

Can I have a word Sir.

Commander Brian Box:

Of course, close the door, take a seat. Now what can I do for you?

Security:

Sir, I think we have a traitor Sir.

Commander Brian Box:

What!?

Security:

It’s Legs Sir, I think he’s been tampering with the evac system Sir.

Commander Brian Box:

Legs? Not Legs! He’s been the best bloody transport officer I could wish for. Not Legs.

Security:
I got a report from our boys in white Sir, they’ve been watching him for some time. He shows up on their screen as  . . . an alien Sir.

Commander Brian Box:

Alien?

Security:

Look at this print out Sir.

Commander Brian Box:

I can’t believe this. What do you recommend?

Security:

We are going to have to reject him Sir. Nothing short of that. Sorry Sir.

Commander Brian Box:

This is madness. How . . . how will you do it?

Security:

Our boys in white will have him sir, they’ll attack immediately. There will be swelling I’m afraid Sir, he won’t be able to run anymore, nowhere for him to hide Sir.

Commander Brian Box:

Shit!

Security:

Yes Sir, Sorry Sir

Commander Brian Box:

Very well. Carry on. Oh and could you tell comms to disconnect him from me please. I don’t want to hear . . .

Security:

Sir.

3 Years Later:

Commander Brian Box:

I’ve got some bad news for all of you I’m afraid, so brace yourselves, Particularly you Lieutenant R. Sole. We are going to be on TV. . . Well specifically you Lieutenant.

Lieutenant R. Sole

Sir?

Commander Brian Box:

Your going to have to . . . let them – A team of UN inspectors -  see the evac System.

Lieutenant R. Sole

But that’s Classified, Sir. They can’t . . .

Commander Brian Box:

I’m afraid we have no choice

Lieutenant R. Sole

I won’t Sir! I’ll not let them pass. It’s against my Religion Sir.

Commander Brian Box:

I’m in charge round here Lieutenant! Do you hear me! I won’t have insubordination from the likes of you! Don’t you get it! This ship is dieing! We thought it was Legs, but it wasn’t. We’ve tried everything! Nothing works! There are weapons of mass destruction somewhere in the system. Seems the most likely hiding place is in the evac. You are going to let the UN patrol in. Do you hear me R. Sole? That's an Order!

Lieutenant R. Sole

I’m Sorry Sir, I’m afraid that’s a negative Sir, that’s an order I can’t obey. I conscientiously Object Sir! You Can’t make me!

Commander Brian Box:

Security! Place Lieutenant R. Sole under arrest. He’s suspended from duty!

3 Years later:

Lieutenant R. Sole:

You sent for me Sir?

Commander Brian Box:

Yes. Come in. Close the door. Sit down.

Lieutenant R. Sole:

I’d rather stand Sir.

Commander Brian Box:

As you wish. As you wish. What do you understand by the term “duty” Lieutenant?

Lieutenant R. Sole:

Unconditional charge of care to the ship and it’s crew Sir.

Commander Brian Box

Well put, Lieutenant. And sacrifice? How do you feel about that Lieutenant?

Lieutenant R. Sole:

Sacrifice Sir. . . Well it comes with the job Sir.

Commander Brian Box

Uncannily well put, Lieutenant. I’m afraid I’m going to have to ask you to make a very big sacrifice. It won’t be easy, but the ship, the crew, all of us are going to have to rely on you. We've had our differences sometimes in the past I know. . .

Lieutenant R. Sole:

Yes Sir, I’m sorry Sir. . .

Commander Brian Box

Think nothing of it. I respect your integrity, and that’s all behind us now. I’m Sorry Lieutenant but I’m going to have to ask you - with regret-  to make what may be the ultimate Sacrifice. Do sit down please. . . I have to tell you something – man to man. They are. . . they are going to take out the evac system. (Silence)

Lieutenant R. Sole:

But Sir. . . how will . . . I mean . . . I don’t know what to say Sir.

Commander Brian Box

They are going to take it out, and they are going to divert everything out of the Isle of Stoma.

Lieutenant R. Sole:

Isle Of Stoma Sir? Never heard of it . . . You cant just . . .

Commander Brian Box

It’s a new docking terminal they are gong to build. Listen. . . the evac is shot, kaput, broken. We are all going to die if we keep the evac. We have no choice Lieutenant. And I’m afraid that means that you will be – disconnected.

Lieutenant R. Sole

After all I’ve done! I don’t believe this is happening to me. I’ll be . . . I’ll be down there in an empty bilge all by myself.

Commander Brian Box

I’m sorry Lieutenant, we have no choice. . . I’m really very sorry. But listen Lieutenant, you will still be there, holding the fort so to speak. There is a chance, a slim chance, that you might be reconnected. In a year or so . . . In the meantime. . . I’m afraid it’s goodbye Lieutenant.

To be continued . . .

The advantage of having a stoma is . . .

Coldplay

 Don McLean

 Paul Simon

Us

For those who might read this without knowing of Glastonbury Festival (I notice some readers from such exotic places as the U.S., Canada, Sweden, Finland, France, Saudi Arabia, South Korea, India, and Italy) I should perhaps explain this odd British phenomenon.

Every year a huge quantity of people – over 150,000 in fact, cram themselves into a farm near Glastonbury in Wiltshire to woop and scream their way through musical performances from some big and less well known names in rock and roll, comedy and caberet. This year for example: BB King, Don McLean, The Kaiser Chiefs, Pulp, U2 Coldplay and many many more.

Punters camp in tents that they bring themselves, and as it often rains they churn the entire farm into a sea of mud. They also consume huge quantities of food and drink; all of which will inevitably make it’s way through a thousand miles of guts and must, ultimately be “dumped” somewhere. The result is the messiest, love filled, “shlittle”* of humanity you have ever seen.

The purpose of this post is simply to say that having a stoma does not exclude you from taking part. For the first time in my life I am legally defined as disabled; so we could camp in the disabled field, which was less muddy and had slightly better (bigger and less dirty) loos.

Here I learned that there are advantages to having a stoma, in such a situation. One can do everything standing up; thus not having to lower oneself on to the fetid loo seat above the stinking midden of the Glastonbury bog.

It may be a little extreme to have your guts ripped out just so you can go to Glastonbury festival and never sit upon the loo, but I feel one should celebrate the positives of every predicament one faces.

There was some excellent music as well. Personally I loved BB King, the Kaiser chiefs, John Hegley, and Coldplay. U2 were slick and polished, and Elbow made a great contact with the audience.

*Shlittle is one of a number of invented words. It describes an over filled, out of control flow of any substance through a narrowing.

Life is for living.

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. 

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.