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

Do I have a disability?

In order to improve the running experience I have invested in a kind of cummerbund which holds me tightly round the middle and stops me feeling as if I am about to open up like a book.

One day I walked at speed to the forest recreation ground (mile and a half) which warmed me up, and then started to do the run / walk routine. Plodding so slowly and oafishly round the field whilst others seemed to spring painlessly past, carefree of their natural energy. Bastards!

I discovered that on the forest there is an outdoor gym which uses your own weight rather than weights. I sweated round all the bits of equipment and it felt really good. I felt almost euphoric as I pumped and pushed. I was me again.

I had also decided was that I was going to swim again, and so Clare and I arranged a visit to a company called Ostomart to look at some high waisted-swimmers. I was not really sure about these as have been used to budgie smugglers all my life. The thought of wearing such a voluminous garment in the water gave me black and white and grainy images from the mid 1950’s, and did not appeal.

We found ourselves in an office staffed by about 5 women behind computers, and on phones. They showed me a pair of the sail like swimmers; and these were the small ones. My god! You could catch fish with these things. I decided against them. I asked about changing my prescription to be with them and before we knew it we were in a room stacked to the ceiling with “products” and “supplies” The woman showing us round this odd new world seemed to know everything. She was easy to talk to, very re-assuring.

“People get used to a product and don’t like to change, so we have to stock old designs as well as modern ones.”

She described how some people have a rubber bag which they keep on for a really long time and which they wash out. Not what I want.

The sartorial problems of swimming seemed to half solved when I bought a pair of Bermuda shorts. These in combination with a pair of high-waisted elasticised pantaloons from Ostomart, seemed to offer the possibility of swimming again.

So yesterday I walked to the Noel Street Baths, and asked for a ticket to swim. The woman asked if had a city card. No I said, so she gave me a form to fill in.

I admit that forms can defeat me quite often but this one looked a doddle; name, address etc. But then I got to the question

“Do you have a disability?”

I was stumped and I didn’t know what to put. Does anyone out there know the answer to this question?

Having got my ticket I entered the pool area. It’s one of those really old pools that have changing cubicles all round the sides, and vitreous tiles .

I slipped into my new pantaloon / swimmer combo and opened up my new goggles. I was ready to swim. In the pool I started swimming with great pleasure. It was wonderful. I used to swim everyday. I really miss that, and the sauna too. As I got to other end I did a quick grope to make sure everything was still in place. The Bermuda shorts had slipped down to my hips, and my bag was poking out of the top like a large dog’s tongue.

I leaned against the wall and flipped up the goggles on my forehead and started to adjust everything. It was at this point that one of the goggle eyepieces slipped back down over one eye.

I had suddenly become a strange squinting man fumbling with his nethers in the shallow end. Not so cool. Shorts tightened to the max, I set off again, but at the other end I was one eyed and fumbling again.

I returned to the changing cubicle and bodged two holes in the waist band of the swimmers with my car key. These allowed my to rethread the boot lace at the front in such a way that I could really tighten them up. I emerged from the cubicle like a man wearing a whalebone corset.

BUT

In the pool I was swimming again. Brilliant.

And I’m so much better at swimming than running.

I’m happy

Learning to run again

Rome 2007, a limping Roger sweats his way around the Coliseum accompanied by The Marchioness of Basford and Sherwood.

It is now about 5 or 6 weeks since a masked man in green pyjamas cut me in half. I am feeling a lot more like the old me now. I have more energy and I have got used to the new plumbing.

One of the strange side effects of having colitis has been that my leg joints have been really painful at times. Sometimes it meant that I lurched slightly in the street, and being quite large and bewhiskered, people would cross the road in case I asked them for money.

At times I've had to use a walking stick, and I have been rendered virtually immobile. Some UC patients will have experience of Infliximab which I was on before the surgery. Apart from playing around with my immune system it also gave me a few weeks pain free walking before I would slowly seize up again.

I used to run a lot, many years ago now I admit. I used to casually run 10 miles without a thought. Then I got the Ulcerative Colitis and running didn't seem like such a good idea. It shook my guts, and as time progressed hurt my ankles and knees. So then I used to go to a gym and grunt on the machines there before swimming a lot of lengths - (100).

I was going to the gym right up to the day before I went into hospital to meet the masked man. Now, after the operation, my legs don't hurt me anymore. I can walk with ease.

One cold night last week I was coming back from a pub, and I took it into my head to combat the cold by running. So I started to run and despite still looking a little frightening to other pedestrians (not wearing running gear you see) it was not too painful.

So a few days later I set off to run round a large park area of Nottingham called The Forest. It was cold morning and my eyes and nose and ears were cold.

I started to run very slowly the length of The Forest. It was a bit odd, I seemed to have leaden legs and I ran out of breath pretty quickly. All around me were athletic people gliding by at speed almost as if riding bicycles whilst I trailed along at petty pace gasping for breath. Some of them slips of girls that ran like whippets, some of them big muscular men in football gear nonchalantly trotting past me like horses.

Today I had another go. This time I had planned to walk for a bit, run for a bit, walk for a bit, run etc. I started by going for a walk up a hilly road to warm and loosen the legs, then on the flat I began an inelegant run. I managed to keep it up for about three minutes (That really is bad) then I walked for about the same amount of time. I repeated the walk run routine for about 30 minutes.

My knees and ankles have become very weak, and going down hill I fear that my knees will give way.

IT DOESN'T MATTER! I'm running. Just a little bit, just a step at a time.

I will run again.

One month on

Clare and I on the Island of Islay several years ago
(I found a load of unprocessed films and this was one of the frames)

It’s a month now since the operation.

Physically I am pretty strong again, and I can do all the things I need to do. Walking into town is no problem, I can drive a car, I can eat what I like. Banquo is fairly well behaved and tends to venture into soliloquy mostly in the mornings, when he can be pretty loud. But after initial griping he calms down and is quiet for the rest of the day usually. I have had a few moments of worry, for example in the cinema when, in a quiet and tense moment in the film, I have feared Banquo was going to upstage the proceedings, but so far he hasn’t.

To give a quick, sanitised, wholesome run down of the waste collection and disposal system: There is a base plate made of thick plastic and rubber, with a hole in the middle. Its about the size of CD and flexible. The back of it is sticky with some extraordinary adhesive. Banquo sticks out through the hole, which I have to cut to the right size. Added to this, there is a bag which, about the size of a pitta-bread, sticks to the base plate. This bag is actually quite a wonder of invention. It is completely water proof and is made of a kind of thin papery material. It is also totally hermetically sealed so not a whiff escapes. The bottom of the bag is sealed in the three folds, and Velcro. This can be opened to drain the bag.

It isn’t pleasant, but the trick is to have everything you need ready, turn on the radio and just do it without thinking about what you are doing. Just listen to the radio, wash your hands and re-emerge into the world. After all isn’t this what you bum-wipers do really?

I have found that I have to learn to sleep in a different position. My preferred position- a kind of recovery position - being uncomfortable now. I slept like this one night and I think my body weight and the shape of my belly must have caused a bit of a leak which was really annoying. After speaking to the Stoma Nurse (who is brilliant) I was issued with a very attractive elastic belt which holds the whole thing in position more firmly. I have also discovered that attaching the base plate whilst standing up rather than sitting ensures a better seal.

Sometimes you feel a bit like a plate spinner who hasn’t got quite enough hands to keep everything going, but its OK I have learned it now.


Psychologically it has been OK, and I have not really lamented. I have wished to go for a swim and a sauna very much and I am working on the sartorial problems involved. I’m thinking of something like a triathlon suit which stretches from the thigh to the neck. I’ll solve it soon. I miss exercise and swimming and sweating a lot. I miss the chatter and gossip too.

I was asked the other day if, knowing how it is now, whether I would have had it done sooner? The answer is I’m not sure. Many people report an almost euphoric feeling and use phrases like “I’ve got my life back” I have not really felt quite like that. It is great to not have to constantly monitor my proximity to the nearest loo. It is great not to have to constantly carry what I used to call my “shit kit”. It feels a bit weird sometimes, and I suppose I do vainly wish I could disport myself in a pair of budgie-smugglers.

My scar is nearly healed. When I went to have my stitches out (actually staples like you find in stationers) I had every other one out the first day. Did they think I was going to open up like a book?

When I went to have the remainder taken out I felt a sense of freedom. Sadly when I inspected myself at home I found that she had missed FOUR! I had to return to have them hoiked out as well.

I have also discovered a well written, witty, and truthful blog by a man called Martin who has passed this way before. I recommend it to you. You can find it at

http://numbertwos.blogspot.com/

OK. Got to go back to sleep now; it’s 6 in the morning and I’m running a workshop later.