Does this sound weird?

A different view.
(Pinhole photo of New York - 2007)

I have a feeling this may sound a little cranky, I hope not, but I am aware that it might.

Readers of this blog may have noticed that I have mentioned Hypnotherapy a few times, and I have said how I found it very useful in dealing with anxiety, stress and fear.

I thought I might try and make a difference in other people's lives rather than just describing my own journey.

OK - so here's the odd bit:

I have enrolled on a course to become a qualified Hypnotherapist. The course will start in September.

Can you see me in that role? Time will tell.

I've also done another thing which is to set up a "Just Giving" page which you can access by clicking at the link above and to the right. Any money given will go straight into the coffers of Chron's And Colitis UK. A charity to help people with Chron's and Colitis.

It would be great if you could have a look.

Right - I won't mention it again

I remain

I tell the tale

Much better now I must say.

At first I thought I was going to die,
As my blood ran down the Loo;
Asking the obvious question “Why
Am I crapping blood not poo?”

I thought I’d have to say goodbye
To my family and my chums.
To perish, how undignified,
At the mercy of my bum

There must be something of this pain
Written in some book,
So in the library I tried to name
This method of the reaper’s hook.

The doctor prescribed some pretty pills
With names that I could not pronounce.
I’m afraid they did not cure my ills,
Stem the flow, or stop the spills.

So soon it sadly came to pass
That I had a great indignity.
They put a camera up my arse;
The dreadful colonoscopy

Maybe acupuncture
Could give me some relief?
Use the force of pins, and chi
To minimise my grief.

Nothing seemed to do the trick,
From enemas to rabbits ears.
I went from ill to really sick
Over thirteen really sticky years.

I knew the precise location
Of every toilet in my town,
But often in some unknown station
I became the crying clown

Strange how this thing can change your life,
Raising stress, and causing strife;
Make you wary of adventure
(And travel such a risky venture)

Six hours of Infliximab on a drip,
Would cure my strangely painful knees,
But never seemed to have the kick,
To cast out this crap disease.

“In my end is my beginning” says the poet;
And it turned out so to be.
I was eventually disemboweled.
(They prefer the word "Colectomy")

I'm getting a bit puffed out with the fine detail in this rather crass ode, but I shall return and pick away at it as inspiration suggests and time allows.

I have to go to sleep now.

Back to the start

Bangkok 1988

Where does an illness start? In your genes? In your own lifetime? In your experiences? In your environment? It’s hard to know sometimes.

It’s 2010, Nottingham. I’m 53, white middle class, and mediocre.

I’m getting out of my car, making sure I have my pad of paper and a pen . . . glasses as well – yes I’ve got them - that’s good. I’m at my doctor’s. I’ve come to read my medical notes.

I am met by a wise looking woman who is very polite and professional. She is the practice manager. She asks me to sign in, and reminds me that my squiggle on the paper binds me to discretion; that I will not reveal names, places, and details of anything I may see or hear. So in what follows I haven’t.

I Squiggle; I accept.

She shows me to a computer and runs swiftly through the MS-DOS style screen that contains my notes. It seems that the electronic notes only go back to 2000. I’m looking for something way back in 1988.

With remarkable speed she presents me with a tattered and browning wedge of notes that go right back into my childhood. Medical records in thick brown manila, fading fountain pen script, letters written on manual typewriters, actual documents that go back as far as the 1960’s.

There’s a typewritten letter from a child psychologist that documents my meeting with her, the paper old like a leaf, but the typewriter impression still fresh. This hasn’t seen much light since 1965; The red letterhead at the top still sharp.

I shouldn’t really dwell too much on this letter, as it’s not what I’ve come to find out about. However it describes me as a fair-haired child, reasonable verbal intelligence, problems with writing, and as a consequence having “behavioural problems” due my frustrations at school. Dyslexic.

Aha! What’s this? I find a card that records a visit to my doctor. At the time I am 36. Many years ago, before I had guts ache.

I’m back in 1988, a small town in the East of England. A sunny spring morning. The Stranglers “All Day And All Of The Night” can be heard leaking from a tinny radio. Across the wooded park I can see the doctor’s. Never been there before. Bit nervous.

I always felt guilty visiting doctors. Never wanted to waste their time on my irrelevant problems. I’ve been brought up not to waste a doctor’s time unless it’s a last resort because there are many people with real problems.

It’s a Victorian red brick house, with a bit of a fake Doric column around the door. Inside a waiting room with a lino floor that had that smell and the usual selection of out of date magazines; dog-eared by a thousand fearful fingers and thumbs.

A cordoned off play area contained a garishly coloured collection of plastic toys. (Nowadays it would be some kind of infection risk I’m sure)

It was my turn and I entered the unknown; the doctor’s room. I had not been to a doctor for donkey’s years. He sat behind his desk and blinked at me from behind his glasses. White hair, a slightly red face. When he spoke he had a charming southern Irish accent.

“So what seems to be the Trouble?”

I started to explain, rather hesitantly, something that I could not really describe very well.

“I’ve got this feeling . . . it’s like a very mild stitch almost, but not even that bad. . . It’s just an odd feeling . . . doesn’t hurt at all. I just haven’t had it before.”

“And where are you feeling that?”

“Here” I pointed to the left of my navel, on the side. The soft bit.

“And you’ve not had this before?”

“No”

“Eating alright? Not doing anything new and strenuous? No reason you can think of?”

“No”

“And are you going to the toilet often?”

“No . . . not really just the usual you know”

Why do doctors always want to ask you about your backside or your genitals – never about your fingers or your feet or your face?

“Work?”

“Yes, I work in an Arts Centre, film and video stuff . . . some teaching . . .”

“And do you get worried much - stressed?”

“No – not really”

He pushed the glasses up his forehead, rubbed his eyes. Then took his hands away so the glasses dropped back into position. He blinked at me again.

“You know what I think?”

“No – I don’t know what you think.”

“I think you might be stressed, this might be stress related: psychosomatic.”

“Oh – right. . . It’s just that I haven’t had this sensation before. . .”

“Now. . . What I’m going to do is suggest that if it doesn’t go away in a couple of weeks that you come back and see me. But like I say – I’m pretty certain it’s psychosomatic.”

“OK – I will”

And I left feeling a better.

But it didn’t go away, so I went back a couple of weeks later. This time he said he would refer me to a gut specialist. I pointed out that I was going on a long trip in a few weeks time and he took the dates I would be away.

“And where will you be going?”

“Thailand, Hong Kong, China, Coming back through Russia; Trans-Siberian”

“Well that sounds great. You enjoy it – Now you’ll get a letter inviting you for an appointment. I’ll tell them when you are away. OK?”

“OK”

“And in the meantime if you feel it deteriorating or anything go to your chemist and get some “Fybogel”. It’s going to pad out your gut a bit and it may have a small laxative effect.”

“OK . . .”

And I left feeling a bit better.

We went on the trip. The first time Clare or I had ever been in a aeroplane, went on a trek in Thailand, got married in Hong Kong, went by train to Beijing, crossed Mongolia, hooked up with the Trans-Siberian, flew home from Moscow.

We had a great wedding party when we got home. It was great to have done the journey, and it was great to be back.

There were two letters waiting for me. One inviting for an appointment, and one expressing disappointment that I hadn’t turned up. Another date was offered but I was unable to go to that as I had work in Newcastle. The record shows that I phoned to say so. Soon I received a letter telling me I would not be offered any more appointments as I had wasted the consultants time and that it wasn’t fair to other patients.

Today, 22 years later I read the letter that the consultant wrote to my doctor. He was apoplectic with rage, and it really comes across in his writing. Really angry that I had not turned up.

I am sorry to read the letter.

“This man” He wrote “ seems to think the service is designed for his convenience . . .”

I am feeling so bad reading this letter.

“I think if I was to meet this man I would not be able to view the case objectively” he wrote.

How annoying to realise that even at this very early date I was in conflict with a consultant. It was the last thing I wanted. I thought I was trying to keep them informed, trying to communicate.

I am very presently aware of his anger – I have wasted his time, and deprived other patients of his attention. I’m really sorry and shockingly surprised.

Dear Doctor Goodman (fake name), if you ever read this I apologise. I certainly never meant to anger you or waste your time.

However perhaps you too had some fault. Maybe a little arrogant; in reading your letter the words you use assume that I will do as you say. That I am an underling. You consider yourself above me, and you were not, nor I above you.

Back to 1988: the odd feeling? It had gone away. Nothing to worry about at all. It was Psychosomatic after all.

On the TV “500 Miles” by The Proclaimers, looking like two psychotic Joe 90’s. I bought the CD.

I don’t know if this was the first whisper of U.C. but many years later when it was clear and present it was in the exact same spot.

F.Q.A. No. 1

Just asking

Frequently Questioned Answers

I have been thinking back on the thirteen year journey from discovering I had UC through the flare ups, under the knife, and out the other side with a stoma.

Anyone on such a journey will, on occasion, come across certain firmly put forward "answers" or assertions that will cause you to think "And yet I wonder?". These answers can be gathered into subject areas, and often start with phrases like "You should . . . " or "Yes but . . . ."

In this, the first of occasional posts, I question a random selection of "answers" that have been presented to me.

1) Answer: U.C. is psychosomatic.

Questions:

If it is psychosomatic, why can’t U.C. be cured using techniques such as CBT, Psychiatry, Counseling?


If it is psychosomatic, is it always a certain personality type that gets U.C.?

If it psychosomatic, where does this put theories that U.C. may have a genetic component?

Personally I had the psychosomatic theory served at me several times by professionals, and other very clever people. I did, and do, often question whether there is a connection between the mind and one’s health.

In fact I am fairly certain there is a link between physical well being and the mind, but I can’t believe that it U.C. is entirely a work of the mind. It seems to me that I had a genetic pre-disposition to U.C. My Grandfather had terrible guts, as does my mother and my Dad also suffered gut-trouble towards the end of his life.

I don't think U.C. is a psychosomatic disease, I think it is very physical illness whose origin and mechanism is not understood. In my experience the psychosomatic card is often played by people who are running some other agenda behind the scenes.

I must, again, say how I found hypnotherapy helpful as a coping strategy for anxiety.

It can’t be bad to try and get your mind straight, and decode yourself. Even if it won’t cure you, it will be work worth doing.

I think it best to try not to be a prisoner of your mind if you can help it.

2) Answer: Ulcerative Colitis can be cured with a change of diet

Questions:

If U.C. can be cured by a diet why don’t the N.H.S. simply tell you what to eat and save all the money they spend on doctors, colonoscopies, infliximab, stoma nurses, surgeons, hospital beds, and consultants?

I am no mathematician or economist, but surely printing a few menus and even sending someone round with suitable food would be cheaper?

Personally I agree that 15 pints of lager and a blazing hot Phal curry, topped off with a kebab between the restaurant and the front door is going to be quite disastrous for you, the U.C. sufferer. Equally a diet of mild broths, and insipid meals made from inoffensive ingredients will not give you so much of a gripe.

3) Answer: Alternative medicine can cure U.C.

If alternative medicine can cure U.C., why don’t we set up a system in which patients are routinely referred to alternative therapists?

Is there a conflict between conventional and alternative medicines over the treatment of U.C.?

For myself, I tried acupuncture when I was first diagnosed with U.C. and my experience was that it calmed some of the symptoms but it didn’t cure the disease. I really wanted it to work.

The experience of alternative therapy seems to me to have a shamanistic aspect to it as well as any other therapeutic effect. My acupuncturist took time to talk to me, did not frighten me, and only stuck very small pins in me.

I think there may be a great mutual misunderstanding of the two tribes; scientific medicine and “humanistic” (for want of a better description) medicine.

4) Answer: Surgery will “give you your life back”

Questions:

If surgery can give you life back, can I please take off this bag and pose in the nude on the fourth plinth?

What do you mean by “give you your life back?”

Before surgery I thought it was the worst thing that could happen to me. I viewed it as the ultimate submission and failure of the medical process and my personal resolve. I could not easily bear to contemplate being so weird and disfigured.

I was, in a way, corralled into the decision because I did not want to stroke the cat of death again.

Now, on the other side of surgery, I feel that I am still me and I am not as hideous as I thought I would be. I don’t have a rack of pills by the bed, and I can walk and go to the gym and swim. I don’t have emergency bog moments, although I am aware of my plumbing. This may mean that I have my life back, or not.

It depends on your criteria.


If you have any Frequently Questioned Answers I would love to hear about them.

A New View

The hospital corridor is filled with trolleys containing files, Mr Fitch is extracting one of these files and talking to a nurse. In the distance my original consultant also extracts information from a similar trolley.

Earlier this year, in a similar situation, my heart rate would have escalated, and adrenaline would have coursed through my veins; but not today. Today I feel quite relaxed and at ease.

A nurse calls my name and Clare and I are ushered into a white room, sporting a computer, a chair, a bed covered in paper, and what looks like a vacuum cleaner for the body. However none of these things strike fear into me. Not even the title of the room “demonstration” in a discreet sign attached to the door fills me with trepidation.

My old consultant enters, clutching a large file. I immediately stretch out my hand and she takes it. I have had a strange, sometimes difficult relationship with this woman. She has wanted me to be disembowelled for a long time, and this has always been a matter of contention. Now it is done and we seem to be on a more level relationship. I am genuinely pleased to see her, and she is genuinely pleased that I am healthy. Brief conversation and then she leaves. “Back to the grindstone” as she puts it.

Next Mr Fitch enters with my notes. A large file held shut by a long brown rubber band. He removes the band and starts to twirl and twist it around his extremely clean hands.

After preliminary conversation, about whether I am getting on OK we move on to discussion of the future and possible surgery. Reconnection is the word they use.

“I think I want the full broadband 100 megabytes” I explain. The rubber band twists around his fingers tighter and tighter.

“I presume if it all goes wrong the worst thing that could happen is that I end up back where I am now?” I ask.

“No; the worst thing that could happen is that I could kill you” he says quite calmly. He assures me this extremely unlikely.

Later on we even have a joke and a laugh as he describes being in hospital himself one Christmas and being brought NHS sherry. NHS Sherry?.

"It was horrible and brown" He laughs loudly. I actually quite like this bloke.

I am not worried about the future whatever it may bring.

I must have travelled quite a long way in the last year. This would have freaked me out a few months ago.

Block Party and Swim

At my Gutless Rog party dressed as Dr Love, Talking to Dr M.
(We know how to party!)
(Photo by Frances Lee)
(Apologies for mis-nomer)

Sartorial elegance itself

I decided to have a “Gutless Rog” party to celebrate the end of 13 years with UC, and the coming of spring. I used to have lots of parties but not for a long time now.

The day of the party saw me preparing a number party plates; and baking potatoes. This smorgasbord of culinary delight included coleslaw, and Russian carrot salad. The evening arrived, and brought with it lots of old friends from different quarters of my life, and a jolly good night it was too. However parties are not the point of this blog. Lets stick with the nitty-grrrrritty.

The day after the party came and there was quite a lot of salad left over. Reasoning to myself that in the last year or two I had avoided salads and seeds on account of the old gut, and given that I no longer have the offending item, it seemed the sensible and healthy option to pile into the salad. Reasonable surely?

Surely not. Pain. With every wave of peristalsis considerable pain, and no word from Banquo. Not even a mutter. It was really horrible. Clare whipped around the internet reading up on the condition and promptly pronounced me blocked. The worry being that everything could gum and you can end up being nauseas and worse.

I rang the Stoma nurse, and she told me that it would probably unblock in a day or so. Clare prescribed hot water and rest. Which is what I took. On the Wednesday I was teaching and found it quite hard to keep going and I had to keep sitting down.

Anyway, eventually it unblocked thank god. So there was a lesson for me.

Followers of this blog may also be aware of my attempts to get back into swimming and exercise, and the sartorial problems of having a scar that stretches from my ribs to my whatsit, a hole in the side, and a bag.

The answer is a triathlon suit. I got mine from from Swimwear On Line, but I didn’t buy it online as I wanted to look at it and feel how stretchy it was. I phoned them up and spoke to a very helpful man. It would be fine for me to come the factory and look at the garments, and buy one there and then. I mounted my motorbike and set off for Sutton In Ashfield.

As an aside I have to mention that I passed something I had never been aware of before. The Sherwood Observatory.

In the factory I discovered the man, surrounded by piles of swimwear, a line of women operating sewing machines, and the occasional computer. He eyed my up and down and pronounced me 6 foot and about a 33 inch waist. I felt slightly trapped under his microscope for a moment. However I left with a garment stowed in my rucksack.

A few days later I joined a new gym. I felt that the old one was falling apart at the seams, and also that I would rather go somewhere people didn’t know me at all. A man without a past seemed more to my liking.

So it was that I entered the new gym, triathlon suit in my bag, and some excitement in my heart. I was amazed to be given a towel free of charge (this never happened in the old place – 50p they used to charge). The changing room sported an iron, hair dryers and a centrifugal spinner to dry your swimwear! The place had a range of machines that all worked, the pool was small but nice, and there was also a sauna and steam room.

So here are the results of the gym experience:

I was able to use all the machines without anything coming unstuck. The swimwear was perfect – both covering everything up and maintaining a good profile through the water. I’m delighted too, to report that the heat of the steam and the sauna also did nothing to loosen or dislodge any of my “apparatus”.

So, gentle reader, all is good in the world.

“Image de corps”

A short film by N Ozzer-Poison

(With subtitles)

Interior. Night. A bedroom somewhere in the attic of a dreaming head.

Dimmed lighting, and the mournful rasp of a horn drifts low from the ancient hi-fi, muted and sinuous on a bed of lilting piano and bass. The camera tracks slowly across the bedroom, over a discarded uniform cast over the back of a chair, coming to rest on some riding boots and sword; silently standing guard.

ARKAYEFF lies, hands behind his head, his attention is focused on the fan that turns relentlessly on the ceiling. He is inscrutable.

The camera is now on the ceiling looking down, through the fan blades.

ARKAYEFF (voice over):
“Basford sanglant”
“Bloody Basford”

PROTO NYMPH enters the room all lacy and see-through, slips under the cover like a velvet cat. ARKAYEFF turns to look at her, silent for a while then:

ARKAYEFF:

Est-il possible que nous soyons dans l'amour ?”
“Is it possible we are in love ?"

PROTO NYMPH looks at ARKAYEFF with knowing eyes; blue gleaming jewels. Unreadable.

PROTO NYMPH:

“Tous les hommes ont deux choses : Un bâton et un sac”
“All ze men‘ave two fings: A stick and a bag”

ARKAYEFF says nothing but rises from the bed, and in the dull glow of the light from the alarm clock and the radio. ARKAYEFF starts to peel off his shirt and . . .

N OZZER POISON
“Coupe ! C'est désespéré"
"Cut! zis is 'opless"

N Ozzer-Poison is not happy, incandescent with rage he walks out of the room throwing the script on the floor.

Fin