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Wednesday, 30 December 2009

Where do I go from here?

My lawn, my maze.

I think it’s time to look back and reflect a bit on this experience. Now that I have got to what must be a stop or two above base camp.

I have been trying to remember how and why I made the decision to have this surgery. First and foremost there were considerable medical grounds for it. I can no longer have Ulcerative Colitis; I may have a few new things to think about, but that has gone forever. Also I was in a high risk group of developing bowel cancer, and that too, can never happen now. So there are two excellent reasons for the decision.

There are others as well though, the most obvious of which was that 2009 saw me at death’s door twice, and that can’t be good for you. I could still stand there again for some reason or another, but the most obvious potential causes have gone.

And for the foreseeable future at least, I won’t be constantly mapping my proximity to the nearest loo, no longer worried about getting a 40 second warning in the middle of lecture, or whilst operating a camera in some loo-less environment.

There is another set of reasons, and please don’t take this the wrong way, but getting shot of the medical establishment is a plus too. No more colonoscopies, no more 4 or 5 hour infusions of Infliximab, no more weird cold stunted conversations with doctors. I am through with that. There may be more to come, but in a sense I have moved forwards and away from their grasp in the long view. Was it Winston Churchill that said “If you are going through hell keep going”? Yes it was. I just looked it up.

Looking back on the experience to date, anxiety and fear have been my biggest enemies. Worse really than the hospital experience, and very undermining to a positive engagement with the actual moment of incision. Here I want to say that, for me, Hypnotherapy has been very useful, interesting, and powerful. True I was still scared as hell as I lay on the anaesthetist’s gurney, but I did at least have one or two strategies left in my nakedness.

There were also times when, on the run up to the operation, I was feeling physically and emotionaly happy, and I had to remember to notice and keep them. It might be happening tomorrow, but they weren’t getting me today. Just one day at a time.

I also tried hard to project myself forwards in time and remind myself that it would be different, that there would be another day. I am happy to say there is.

My own network of friends; people I love, people who love me helped hugely. It was good to take comfort from the support and warmth of these people. I love you all.

As for the future; who knows what it will bring. At the moment I am trying not to focus too clearly on the mechanics and plumbing of my new life, I am just doing it. I have enjoyed setting and achieving one tiny small goal – walking into town. This is like a little plant that will grow into my new gym, I intend to walk frequently into town, have a cup of tea and walk back. When that is easy I will do a different walk. Who knows I may even manage to run again one day.

In the future there is also the question of “reversal” in which I end up with a pouch inside me made from me. This would involve perhaps two more operations, and may mean that I am back to running to the loo. On the other hand it might not.

Who knows? Maybe I will end up fitter than anyone thought I would be. For the moment I shall aim for that.

Tuesday, 29 December 2009

Moving on

A photo taken during one of my more formal lectures.
(thanks to student camera)

Today Gabriel (youngest son) became a man. 18 years old, out there and up for everything. The day starts out in our bedroom with the whole family watching Gabriel unwrap his presents.

Since I am unable to bend in half normally, one of his first chores as a man is to tie my shoe laces. I think there’s a certain beautiful poetry to that. Wow! he’s done them pretty tight!

Banquo starts working, by making all sorts of gurgling noises. Still no real substance to his spectral interjections though.

Later on we went for a little walk, was still hard to walk and stand fully upright due to the cut down my belly. Nevertheless we did a few hundred meters down the road and back, and this less than a week after the operation.

Sadly, when I got home I felt absolutely knackered out, and had to go and lie down. Not long after that I was really sick, which really hurt where the incision was made.

There is a part of the post op experience that is like some accounting exercise, in which you compare what goes in with what comes out. I need to get Banquo going properly, so I need to eat FOOD. But I’m not hungry, and the thought makes me feel queasy.

I ate a few bits and pieces but actually even a fledging in the nest would be hungry at the end of those small morsals. This is something I need to work on. I just want liquid, but I need to eat more substance.

So now starts a new part of the experience in which I try to navigate my way back to strength and my real life.

One week after the operation now, and I feel I’m making progress. Today I walked all the way into town (2.8 miles according to the internet), did a bit of shopping (lamb chops) bus home, two visitors, cooking and eating said food. It feels good to start the return to my life. It will not be the same but it will be more mine.

Sunday, 27 December 2009


Christmas Day dawns in E14. There is a noisy change-over of nurses as they wish each other happy Christmas.

I get up, and move slowly like a wounded animal, down the corridor to the shower. I want to look bright and alert for the ward round, as healthy as possible.

Ivor had an intense discussion with a doctor last evening and he has discharged himself. His friends will pick him up at 8 am.

Martyn is nearly obscured by tubes, just some crazy white hair and eyes visible.

Steven has had a difficult night, and has an overactive stoma. Show off!

Another cup of tea, and I try to eat some of the hospital breakfast. There has been some stupendous farting but Banquo has yet to deliver a soliloquy.

Ward round. The doctors gather round my bed. They have been discharging everyone they can. The consultant looks down at me.

“Working yet?”

“Just farting”

“Feel OK?”

“Considering . . . yes I feel OK”

“OK then you can go”

They move onto the next bed. I start to look for my mobile and ring Clare.

How incredible. To think that I am getting out only 4 days after surgery. I am very pleased. Very pleased.

There was then a number of visits from the pharmacy, and instructions on what to do next and who to contact. It was probably only an hour and a half later that I left the hospital. Pushed down the corridors by a tiny nurse called Fatima with a scarf over her head, with Josh lolloping alongside carrying all my stuff. Out into the cold Christmas air and into the car. Back home.

The irony is that as soon as I got home I went to bed just as I would have been in hospital, but your own bed is different.

I slept.

Silent Night

There’s a strange kind of unity and bonding that happens in a hospital. The other people who lie around you, in their beds like ships sailing out into the unknown, they become almost like family.

After a few days they are no longer strangers, but people you know. You have watched them struggle through the night, seen the way they deal with people and circumstance that comes to their bedside, know their fight, know their medication, drips, preferences. It’s profoundly human to watch others, but this is not people watching in a café or holiday market. This is real – people dealing with the base reality of who they are. That really is profoundly human.

So I became quite fond of my fellow travellers.

You also get to see the Nurses and Doctors, and they can be brilliant. But somehow they are always and inevitably in a different tribe. Part of that majority tribe. Inevitably there is a power relationship of some sort going on.

When Steve the fellow “osteo-mate” asks how you are today it is not the same as a nurse or a doctor asking you that question.

My approach is to make sure that I give something (not physical but human) to every person that comes to my bedside and that I take something similar from them. To make sure that every exchange has value and meaning.

I have named my stoma “Banquo”, an unwelcome guest at the party, but essentially a good person despite his gory appearance. It was very difficult to stand up and move about at first because of the long scar down my belly which impeded so many actions. I awoke fitted with a bag, and with the scar covered by a dressing. But after a day or so the dressing was rather gory and wrinkled from being in the bed. So I took that off in that in the shower.

Eating was difficult, and I hardly ate anything at first. I mean really nothing. Why would you? Black tea was good, and I was really thirsty and wanted squash and water all the time.

Every morning there is a ward round when the senior doctors come and check your progress. Initially Banquo was not working, but for some occasional dramatic farting noises. They wanted to make sure the stoma was working before I went home.

In the dark Christmas Eve of 2009 in E14, Martyn opposite me rings for a nurse, Ivor mutters quietly in Russian, and I read through eyes that are gritty with lack of sleep.

In the early hours I eat a tiny amount of yoghurt, and some jelly. Put something in to get something out.

A nurse brings me black tea in the strange flourescent dark that you get in a ward.

"Alright?" she asks me

"I'm worried the stoma doesn't work - aprt from farting"

"You'll be fine. If you're farting it's working"

"I want to go home"

"You will; soon"

She dissapears back into the corridor, and I sip the tea slowly and eventually fall asleep.

Friday, 25 December 2009

What happened next . . .

I can't actually remember coming round. I know that I would have been in a recovery room first, but actually the next thing I can remember, after being put under, is being wheeled back into the ward. I think I must have been high as a kite. I have a blurry vision of Clare; she's told me that I kept pressing my PCA button and passing out, waking up . . . . Saying something and then pressing my PCA button and passing out, waking up . . . . Saying something and then pressing my PCA button and passing out, waking up . . . . Saying something and then . . .

I can vaguely remember some of this. Clare says I was "off my head"

I was making so little sense that eventually Clare decided to go home and let me sleep it off.

That night I actually slept on and off, waking to press the button and acquire more morphine. A surreal night of strange thoughts and images.

Wednesday morning came, and after breakfast (cold ready-brek), Clare came in and she was told quite smartly by one of the nursing staff that she shouldn't be there.

Poor Clare, had been under a lot of pressure, and this was the last straw. I think it is easy to forget, when you are the one on the "pointy end" of the experience, that there is inevitable stress on the people around you and supporting you.

In fact through conversations with Clare I have realised that in many ways you can drag people around you down without being aware of it. I'm sorry to have done that.

That day there were a lot of visitors and a lot of texts. A text when you are in hospital can make a big difference. It is a bridge and a connection back to your own life, and people. Small but hugely important.

The day passed and I was very tired by the time last visitor left, and the ward lights dimmed to night mode. Despite my tiredness I did not sleep very well at all. A weird bed, a leaking drip, a restless mind.

The experience of surgery really takes it out of you, and it takes longer than I want to heal up. This is not some mere haircut, this is a major piece of surgery.

Until tomorrow.

Thursday, 24 December 2009


I had expected the night before surgery to be long and tortured, I had been called in early for a blood tranfusion but whilst we were there; the blood was not. It was going to be an eight hour infusion and the blood did not arrive until midnight. But once I was connected up I was surprised that whilst I did not sleep very easily (the infusion not allowing me to get into a comfortable position) calmness came quite easily and was not infected by spectres and Heeby-Jeebies.

I found that the next morning became progressively more frightening as the process unfurled itself. Interestingly I found that I became slightly less able to cope when Clare was there. The familiarity and love being so close, but unable to "save" me.

The anaesthatist came to talk to me, asking many questions:

Any loose teeth?
Medical history?
Previous surgerey?

Etc, a fairly long set of questions. Then it was a case of explaining anesthesia and post op pain relief. I opted for PCA (Patient Controlled Anaesthetic - or was it analgesia?) for after the op. By this time I was getting some bad nerves and was sweating considerably.

The surgeon arrived, wearing a bow tie and introduced himself as "Shanks"

I was in what my Dad's generation would have called "a terrible funk".

I was first on the list so with hardly any time to orientate or re-orientate I was off on the journey down into the dark.

There was a kind of waiting room that was just like a car-park. Here there were a number of people lying on beds, presumably in a state of panic as well, maybe not? I was blind with fear anyway.

I tried to remember the experience of hypnotherapy and started to breath deeply and think of Dad. A woman loomed over and introduced herself as "mickey" and she informed me that we would be walking the last bit. So I got off the bed and walked with her.

She said I would forget her, that everyone does. But I have remembered. She was called Micky and she had red hair.

Next I was in the anesthetic room. A needle was put in the back of my hand and ....

Wednesday, 23 December 2009

Welcome to E14

Admission was always going to be unsettling. Clare and I entered Ward E14 with bags and, for me at least, that now familiar note of fear.

Clare sat on the chair next to the bed and I lay on the bed in civilian clothes. Trying to hang on to my identity until I have to relinquish it. Waves of anxiety break around me, but because Clare is there, and because I have recently been in a similar ward in the same hospital even this small familiarity is a comfort.

I have noticed, in the last year, that each different ward has its own mini culture. This one has a feeling of being on the front line, much more than the last one I was in. There is more meticulous checking, questioning, and note taking.

Because I have come in early for a blood transfusion before the operation, it becomes clear that I'm going to have to get into my pyjamas. I reluctantly get changed and emerge in the unmistakable uniform of a patient.

The time for Clare's inevitable leaving came and I hugged her goodbye. I was left to contemplate my new surroundings - E14

The area I'm in is the red area. There are 6 beds, each is provided with a privacy curtain. The design of this curtain is made from various Nottingham locations of note.

I am in bed Red 1.

Red 2 is occupied by a man called Frank, an older man, sporting tight green socks.
Red 3 is obscured by his curtain and sounds a bit like radio 4

Red 4 is a man called Steven who is also obscured by his curtain, and spends a lot of time shouting.

Red 5 is a Russian man who seems to have trouble with his legs and likes to clown about, although in repose his face looks quite un-funny.

Red 6 is an older man with long flowing hair and a London accent.

So here we all are in our strange little worlds of pain and flesh. I am really tired and I have to stop now. Tomorrow is the big day, and if I think about I will crumble.

Tomorrow my colon really will come to a fullstop.

Monday, 21 December 2009


This unexpected and early admission has got me in a spin. Suddenly everything is too fast, and ahead a long lonely night.

I arrive at the hypnotherapist's street eased already by the familiarity. It is muffled by snow, I get the Christmas/Thank You flowers out of the car and scrunch my way towards her house. Opening the wrought iron gate sqeaks on its hinge.

In the room, now familiar noises greet me. The hiss of the fire, the tick of the clock, and now a Christmas tree as well. She used to be a nurse and so is familiar with the kind of process I am facing. This inside view is very comforting.

At first it is just a conversation but as always she asks questions which make me think, reach back into my memory, and reach forward in my mind. Not as simple as it seems - this conversation.

Then relaxation followed by a journey in the mind, some of which I don't really remember. A journey to a peaceful calm place.

Next a drive home crawling through the rush hour traffic trying to steady my thoughts. Back home cook some egg fried rice. Eat. Then shower letting the water heat the skin and calm the nerves.

Saying goodbye to my oldest son, who is engaged in some weird game.
"Until we meet again" I say
"Only a few days" he says

Leaving the house with a lump in my throat. Clare drives, I try to breath like the hypnotherapist has said. The journey into the dark has started.

Everything changes so suddenly.

The unexpected trips me up.

I'm sitting here all stressed up in anticipation of tomorrow, when the phone rings.

It's the hospital with an unexpected ball to bowl down my alley. They want me to go in this afternoon and have a blood transfusion as my hemoglobin is low.

But this afternoon is too early for me I'm afraid. I just can't quite take that. I have got my brain all set for tomorrow. And I'm going to see the Hypnotherapist this afternoon, and I need her help. So we agree on 6.30.

It's going to be a long and lonely night, and I will think of you, and you, and you, all my precious people.

Until I see you again, remember:

Love is Life

Sunday, 20 December 2009

High Anxiety

I have to admit to some moments of very high anxiety in anticipation of Tuesday, I suppose you would a fool or psychopathic if you did not. What can you do to minimise the pre-op nerves?

Of course it is not something that has physical form so the stone age body that we have is at a loss for a response to the surges of adrenaline. So going to the gym for a good pedal on the exercise bike and swim and hot sauna does help. It gives your body something to hit out at.

The hypnotherapy helps too, although you have to remember to use it when you are in the grip of anxiety. Deep breathing and remembering the image, and using the anchor.

I also have remind myself that there are 150 people a year going through this at this particular hospital a year, that it only takes an hour under the knife, and that I am on an "enhanced recovery scheme".

And I have to remind myself that one day in a few weeks time I will wake up and I will have got used to the new me and everything will be OK. That in a few months time I will sit at the edge of my garden pool with a glass of wine and some friends.

OK that is that for now.

(Written on my Mum's computer in Gloucestershire, and without any image capturing device to allow the inclusion of a pic. Maybe later when I get home.)

Thursday, 17 December 2009

The Heeby-Jeebies

I awoke with Heeby-Jeebies, and went for a gym-and-a-swim session to work it off. It is strange seeing the mark on my tummy indicating the site of my stoma to be. I got on the exercise bike and peddled fast.

Then I sat in the steam room and tried to use my head.

I have a comforting image that the Hypnotherapist has activated in my mind. I am a child, and it is early morning; about 5.30 am or something. It is a summer morning but the air is cold and stings my nose. I am with my Dad, and we are going to milk the cows. I am sitting on the mudguard of the tractor (never be allowed now) and we are chugging through the fields. The grass is fresh and green and Mary, a sleek black Labrador, runs along side the tractor. A pigeon flies over head and Dad makes his fingers into a pistol and pretends to be a cowboy shooting it out of the sky.

The image changes and he is standing next to me, he's wearing the green coat that I now have. He is my guide and will keep me safe in the dark. He tells me why it will be better after the operation:

"Well, at least you won't be goose-stepping to the loo every couple of hours, and you'll never get the big C up your B; you'll be able to eat any damned thing you want, and best of all you'll never have to have a camera up your backside again. So hold my hand - I'll come with you."

I hold his leathered and weathered hand which is rough with wear.

And it helps the Heeby-Jeebies subside.

Wednesday, 16 December 2009

Pre-admission assessment

To be honest I found this a rather unpleasant experience. It wasn't because of the people, they were all doing their jobs, it was because it makes you focus very clearly on what is going to happen and it really brings home the fact that it is going to happen.

The first person we met was a Stoma nurse, who talked us through the mechanical details of a stoma, the procedure and other such details. This made feel faintly sick and actually consisted of information that to be honest I mostly already knew. I could see that is important to have this conversation from a systemic point of view.

There was one slightly strange bt of dialogue when John said

"We are very good at causing pain, and we're very good at taking it away again . . ." which I have to say I found a little unsettleing; reminding me of a scene from the "Marathon Man" - the torture scene between Dustin Hoffman and Laurance Olivier:

Olivier to Hoffman:
(Having just drilled into Hoffman's tooth)

"Simple oil of cloves and how amazing the results. Life can be that simple; relief - discomfort. Now, which of these I next apply, that decision is in your hands, so ... take your time and tell me. . . . is it safe?"

There was also considerable discussion of, and viewing of bags. This made me feel even more odd, although I had seen some before. We discussed how to maintain, empty, replace, pay for these "fashion" items.

"Now I have to site you" he said


"We have to decide the site of your stoma"

I had to pull up my shirt and the position of my waistband, was noted. We had a brief conversation about lifestyle which included things such as my daily swimming, and he drew a black blob on my tummy to the right and below my navel. That done we were off upstairs to another department.

Upstairs I was welcomed and we were shown into another small office where a very professional, intelligent and human nurse went through more details.

I have been put on a fast recovery plan, and I was given some drinks with lots of "good things" in them to drink before the operation. She took my pulse and my blood pressure as well.

Then she brought up the question of MRSA - had I had it at all? and other such questions. Then she said I was going to screened for MRSA and that this would involve a swab up the nose (fair enough) and a swab of the perineum (How do they manage to come up with such elegant forms of humiliation?) I started to feel really nervous about that.

Then another nurse came in to do the MRSA swabbing- the swabber. I was OK with the nose which tickled but all the time I was thinking "Yeah . . . ? And . . .what about the next bit . . . " Luckily I was allowed to retreat behind a (hideous) curtain and do this myself.

Next it was a doctor who came into the room and interviewed me. The stuff you would expect really. Medical history, relevant medical history of relatives, smoking, drinking, allergies, etc. Then there was an examination on the little bed.

On spotting the dark circle made by John she asked

"How long have you had this mole?"

"What mole?" I looked down my body - "Oh! Hah! you got me there- anyway it will be bigger next Wednesday. Ha Ha!"


This time I wasn't sure she was joking, and I reflected that she seemed very young and that many of her questions had seemed a little odd. Not only that I had seen her with an older doctor earlier and he appeared to be briefing her.

It is a teaching hospital, and I of all people believe in learning and teaching, but I have to say I felt a shiver of . . . well actually it was fear.

FEAR for my tiny little fragile self. How pathetic! "Pull yourself together man!"

And here is the thing; I might look like i am 53, 6 foot, hairy, and all that other grown up stuff; but inside we are all vulnerable and emotional children. That includes the doctors.

After that it was just a matter of blood tests and an ECG. A piece of piss you might say - oh no I did that earlier.

I am fit for surgery!

I can't wait. . . .

Tuesday, 15 December 2009

The Hypnotherapist

This morning I went to see my hypnotherapist. Does that sound a bit new age and odd? As they say - don't knock it till you've tried it.

 I first saw her sometime ago as I was trying to deal with the prospect of a colonoscopy (that seems mere bagatelle now) and I can tell you that for me it was very powerful.

A beautiful and peaceful antidote to what I saw as the clinical brutality of the modern medical machine.

Hypnosis in reality is not like it is in films. They don't wave a watch on a chain in front of you, and the world doesn't go all wavy to the sound of a Theramin.

Instead I found myself a very comfortable chair in a warm room, speaking to a quietly spoken and understated woman. She uses the technique of progressive relaxation. You close your eyes and she asks you to relax; your neck, your shoulders, and so on all the way down your body. Then she asks you to go more deeply still.

Here is the interesting bit, you know what's going on, but you are very much in a small perfect world of your own. Everything is clear and possible. She gave me "anchors" and these got me through the colonoscopy really well. I was able to get through the experience without even sedation.

Even now, 3 or 4 years later, if I drive past the hospital I feel some of the anchors come into play. A medicine to equal Medicine.

Hypnotherapy gives me a way of using my own mind and strengths as a repost to the procedural coldness of the medical experience.

So, I have seen her quite a few times on my journey to this point, and it has been a most gentle and effective way to deal with very brutal and intrusive experiences.

 Today I went to see her for the second time on my approach for the much feared, and anxiety inducing colectomy. I arrived in the grip of the heeby jeebies with the prospect of being disembowelled boiling angrily in my psyche.

I sat in the familiar chair and felt the warmth of the hissing fire on my face. As always, we had a bit of a conversation first - a conversation which as usual brings me into close connection with her, and which is in itself calming, non threatening, and positive.

Then I closed my eyes and I relaxed and went into the strong and enabling world that she brings out of me. And although I still feel anxiety, and although I understand I have new and difficult borders cross, I drove away feeling that I had a way of coping that belonged to me, More able psychologically to deal with the impending challenge.

So if you too are about to experience something really challenging and difficult I suggest that you consider finding a really good hypnotherapist.

For me it has been good.

I hope we all live to be 100.


Sunday, 13 December 2009

Dear Roger Knott-Fayle . . .

"Please attend the Pre-Admission Unit on F floor, west block on Tuesday 15 December at 1400.

You will be examined by the doctor and any necessary tests such as blood samples, X-rays, or ECGs will be undertaken to ensure you are prepared for admission. You will have the opportunity to discuss the details of your operation and hospital stay with the nurse and doctor in the unit. The appointment could take up to four hours depending on tests required."

Letters like this are really frightening in their casual and bald statement of fact.

The letter goes on to tell me that on the day of admission for surgery I should arrive at between 0700 0730 hours and that I will go straight into theatre from the admission lounge.

Lounge? how do they come up with these phrases? Do they think I'm going to be casually lolling about in my slippers reading newspapers and chilling out?

Well at least they didn't start with the words

"We are pleased to inform you . . ."

The heeby jeebies come and go.

My head tells me I will be OK but the primal part of me feels as if it is going to be executed.

Friday, 11 December 2009

Nicky Nacky Nocky Noo

For A laugh and joke on the topic please follow this link to a documentary song of jollity and fun that enumerates all the things that have gone wrong with me this year.

"Nicky Nacky Nocky Noo"

Thursday, 10 December 2009

"Hello . . this is Mr Fitch's Secretary speaking . . ."

As I lay in bed, in the secure and safe surroundings of my own house, all wrapped up in my own little life. The phone cut through the morning quiet, and it was the surgeons secretary.

My heart rate changed, although I had had a message from her on my phone the day before.

She wondered if I wanted the operation before Christmas?

I was just umming and gaping like a fish that had just landed on the deck of a boat.

"How about the 22nd of December?" I gasped a little more and tried to say something sensible

"It wont be Mr. Fitch, it will be Mr. Shanks . . . is that alright?" How would I know? I don't know anything?

"would you like to think about it for a bit?"

You bet I would. I would like to think about it for the rest of my life.

"Yep . . . that would be great . . . I'll have a think about it . . ."

"Will you be getting back to me today? It's just that I would like to sort out all the lists today. I go at 4 today by the way"

"Ok I'll ring you later"

Oh shit.

The day continued - I went shopping, I went swimming. Constantly calculating and recalculating the days, and trying to estimate the earliest I could get out of there by. Clare rang lots of people up who knew people who worked as nurses etc. She ascertained that the care would be as good at Christmas as any other time. She started to make jokes about the surgeon being dressed as santa and all his nurses etc dressed as elves. Very funny.

Later I rang the secretary back and I committed myself to 22nd December 2009. Shit! Shit! Shit! I feel as if I am suddenly very high up in a plane and very soon they are going to open the doors and throw me out.

It's going to be an interesting Christmas.

Luckily I bought myself o hat on E-Bay, and it arrived yesterday. I have found that wearing it makes me smile a bit, and that in turn pushes away the heeby-jeebies.

Yikes! The hospital just rang me again. They are on my case already. I have to go for an assessment to make sure I am fit to undergo surgery. Next Tuesday! Yikes and double Yikes!

Sunday, 6 December 2009

My "Stoma Buddy"

The bed I was in at Queens Medical Centre earlier in 2009.

I had been given the number of someone who had been through the operation that I could ring and ask questions. My "Stoma Buddy" as my wife referred to him.

It was with some trepidation that I rang, as it's not usual to discuss the minutiae of personal plumbing with someone you have never met; however one thing that UC can help you with, is coming to terms with yourself and your bodily condition. So I rang the number.

A busy and positive voice answered the phone. The first thing he said was that I could ask him anything I wanted, and he reassured me that there was nothing that could embarrass him.

His story, in brief, was that he had had Ulcerative Colitis from 1987 - 2004; and as he said (and as I have discovered over the last 12 years), you can adapt to anything.

During his time with UC he was not really in pain most of the time, such is the case with me. Nevertheless he developed a load of coping strategies. Just as I have done; just as anyone with such a disease will do.

In 2004 it all came to a head for him, and he was admitted to hospital where he was administered to for 2 weeks. Then the consultant (my consultant as well) said it was really time for him to have the op. He was in a very bad way, and he had no choice. I, at least, am not in an immediately bad way; I'm not in pain, and I have got a kind of choice.

He described how the consultant waited with him for the ambulance to take him to the hospital where the op would take place. He spoke with great admiration of how she looked after him, administering the Temazepam at just the right moment. I tried to imagine her doing that.

So my "Stoma Buddy" had no chance to prepare himself physically or psychologically for the operation, as I have.

He said something very interesting about forums and researching Ulcerative Colitis. The trouble was, as far as he could see, that the forums were dominated by the same questions and the same problems, and these were mainly negative. He felt it was shame that there were very few positive experiences of hospitals, doctors and surgery described on these forums.

He was offered a choice of anaesthetics, but of course he didn't know what was best, so he asked the anaesthetist what he recommended. Epidural was the choice, so he took that. Afterwards he was on morphine with some kind of pump that he could control himself to give pain relief.

Recovery, he said, in his experience consisted of about three horrible days, and then you feel better. However he developed a hole in his stomach - a fissure - and this meant that he spent more time recovering.

But he also said that after the operation he felt amazing, and felt as if he could run a marathon.

Life with a bag, he says, has its problems. Learning to accept it is the most difficult thing, he felt that everyone was looking at him all the time, and that it was difficult to be intimate with his wife. He had a few accidental leaks, and sometimes a bag would come off. But this was solved as he got more used to dealing with and using the bag. Cutting the hole in the neck of the bag the right size seemed to be crucial (2mm wrong and it could be a problem). He would always have a towel on the floor when he was showering as he could easily spring a leak and he talked about it taking about 45 minutes a day to get sorted and dressed.

He has since had a pouch constructed, and now feels absolutely fine.

Tuesday, 1 December 2009

Meeting the surgeon

Today I met the surgeon. It is a strange feeling having a rational conversation with the man who will cut your guts out. It was OK, and he even cracked a couple of jokes. So I felt a bit better.

So here's the hard information:

1 ) I am having a number of drugs such as Infliximab, Asacol, Thiamin etc. I am going to be carrying on with these until after the surgery.

2) I was concerned about my level of fitness, and I explained that I do about 1 hour of cardio vascular most days, and I am told that I am more than fit for the op. In fact many people who have this are in a pretty bad way. The good thing about being fit is that you get out quicker. That is what I want. In quick - out quick.

3) I'm also hoping to actually meet someone who has been through this surgery and I was assured that this would be possible soon. That will be really helpful I think.

4) I am warfarin as well, so this is going to have to be addressed before surgery.

5) I don't have to take bowel prep! Brilliant - I hate that stuff. It's like drinking cold sweat! Yeaach!

6) It is going to be open surgery. They will cut down between the stomach muscles - the ones that form a six pack if you have one. He said if it was him doing the op it would take about 1 hour. You get the op the day you go in and it takes about 6-7 days to get out. The fastest he ever saw was a woman who was running an aerobics course 1 week after the op. Wow!

7) They will take out most but not all of the Colon.

8) The position of the stoma depends on your lifestyle and your clothing. It is a bespoke scar just for you.

I hope this may help anyone else facing this experience. It really is a bit odd. If you too have UC I hope you live to be 100 and I sign off until I have more news.

Sunday, 29 November 2009

Ulcerative colitis is a shit! It robs you of confidence and mobility and more. I am 53 and I have had it since I was 40. This year I have had two mortal scrapes, I don’t plan to have a third.

So after many tortuous hours of soul searching I have finally submitted to the knife. I am going to be disembowelled.

This is the story of that journey.

At the time of writing this post I have simply put in process the chain of events. Now I am in a kind of limbo, next Tuesday I will meet the surgeon and my consultant and the process will start for real.

Yes, I’m scared. I am a big hairy man. I am grown up, I have kids and a wife, I’m not phased by giving a lecture, I have had operations before. But I am scared. There’s no denying that.

Come with me on this journey and maybe we’ll all learn something.