Today is the day after I went to see my surgeon.
I am always on my guard when I see these people, they heal through cutting. Everytime I have ever met a surgeon there is always mention of cutting me open for some reason or other.
I hate 21st century drive by care provided to adults in the NHS, coupled with the fact I spent quite some time in hospital as a child I have kept it at arms length unless completely necessary. I have been crohns and medication free since my sub-total colectomy at 14 years old.
The idea of a 'reversal' was rebutted 10 years ago though I had the promise from my original surgeon that the ileostomy was temporary. In this time I got on with my life shared my secret with a very special woman, had children and moved to a new part of the country. Moving gave me a new gastroenterologist whose concern was to get rid of my rectum due to the cancer risk. It wasn't until I was referred to a new surgeon to discuss this when the possibility of an ileoanal anastamosis became an option. Any surgery at the time was not convenient. I had a kid - wanted more (the risk that surgery could mess with erectile nerves) responsibilities, a business.
I chickened out and went AWOL from the NHS again.
Two years later I realised there would never be a convenient time. Once I made the decision to proceed I discussed it with my wife and she typically said she's help me through it. She was rightly concerned with the practical implications but thankfully agreed we'd figure it out. I contacted my consultant's secretary in January and received an appointment a day later in the post for 5 months time.
I know clinics can be over-booked by secretaries at their discretion. I telephoned and convinced her it was necessary to see the consultant as soon as possible , the rectum came in handy here, she decided to overbook a clinic and the appointment date was brought forward 2 months.
The meeting with the surgeon was very business like. I explained I understood the risks and have done plenty of research. 40% of this sort of surgery with people with Crohns succeeds, that is the statistic I intend to help. I asked how many procedures this surgeon does, enough to put themselves in the premier league. I was told that we will go the slow route - formation of the pouch and a loop ileostomy and monitor the healing closely, test the pouch is water-tight then 3-6 months later connect it all together. I will be in hospital for a week after the surgery (hopefully less if I can help it).
I signed the consent form - which to me felt like a contract with myself to commit to going ahead with this. The risks were explained in detail but writing this now I realise that they never cover the potential benefits. Its a system built around limiting liability for the NHS. In order to focus on the positives I will also highlight the potential benefits of proceeding.
The exact procedure as stated on the form says:
Renewal of rectum, formation of ileoanal pouch, ileostomy for Crohns disease.
Intended benefits: to restore bowel
Frequently occurring risks:
Death <10%, Pouch Failure <10%, Pouchitis, Crohns Reactivation, Leak from join in bowel, bowel
blockage due to adhesions, fistula, impotence, urinary problems, blood clots in legs/lungs, pneumonia.
Well, that's pretty comprehensive and frightening but lets take a look at the potential benefits:
Rid of a stoma that was stupidly sited above my waist as the stoma nurse who sited it believe I would grow in to it!
No more bags
Less or no more accidents - I have about 3 per week during the daytime and about another 3 at night.
Ability to wear clothes properly
Ability to go swimming more frequently
Ability to have a bath without worrying about leakages
Ability to stay away from home without worrying about accidents
Not having to do so much laundry
I could add reams to this list but quite simply I want a chance at getting shot of this bag. I do not hate it, it has allowed me to get on with living. I despise waking in a pool of runny poo. I owe it to myself to try and sort this out. If it doesn't work, fine. At least I will have tried.
I have not had a date for the surgery yet but I expect it to be some time in the summer.
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