Thursday 27 March 2008

Physical Preparation

There is no doubt that any kind of surgery is a major test of physical endurance.

My surgeon was partly right, 'don't smoke' is very good advice. If you smoke I think your a pretty stupid person, you must hate your life as its a fact it will shorten it. If you smoke and you are expecting an operation you are a complete idiot. Smoking increases the chances of complications – simply if you smoke and don't quit long before an operation you could die. Smoking messes with lung function during and after anaesthetic. A smoker has a much higher chance of developing pneumonia after surgery than a non-smoker. Needless to say it, I don't smoke.

There are other things I am doing to prepare myself for pouch surgery. I've been in remission from Crohns Disesase since my subtotal colectomy 16 years ago so my body is in fairly good shape but I want to give myself the best chance at overcoming the odds. If you are not already aware pouch surgery does not have an excellent success rate for Crohns suffers and some surgeons point blank refuse to even discuss the idea. So what am I doing? Physical preparation involves two main areas: Fitness and Diet.

Fitness

The fitter my body the better the chance I have to get through the surgery successfully. I intend to strengthen my muscles and cardio-vascular system. The better these are the faster I hope my recovery will be. I would ideally like to limit my down time so I can get back to being with my family and moving my business forward. By increasing my level of fitness my heart will be stronger and this should mean I require less oxygen. There is also the added benefit of boosting my immune system and keeping my endorphins at a nice level to bat away negative state of mind.

I started my self prescribed regime of swimming daily at the local pool. Its two miles each way so I'm walking the distance at a brisk pace. On Tuesday I swam 10 lengths at a leisurely pace in the slow lane (remember this is not a race, its a marathon.). On Wednesday I swam 12 lengths and felt quite puffed at the end of that session. Today was a different story that I will go in to more detail on my post about Mental Preparation, anyway I swam 10 lengths at a racing pace in about 8 minutes. Daily my stamina is improving and as I type this I feel I'm already using more of my lung capacity. I seem to be a little more efficient working to!

I also do full contact martial arts for 2 hours on a weekly basis. It involves warming up, conditioning, sparring and some Qi Gong (http://en.wikipedia.org/wiki/Qigong) at the end for relaxation and breathing. Its a good workout and great fun. Over the years its improved my confidence and if someone goes to hit me in the abdomen I will break their arm in 5 places before they make contact Smile. Of course I would never do that but i'm not so flinchy and paranoid about abominal and stoma injury as I used to be. I realise I will have to take a break from this for perhaps a year after surgery which is fine so I will do something more sedate like Tai Chi - which I would strongly recommend to anyone with IBD.

Mid morning I do some light anaerobic exercise. To begin with 2 repetitions of 10 pushups – I do these quite slowly to get the most from them (youtube has some decent personal trainers: http://www.youtube.com/watch?v=8fCQsxzsLH4) These work on my core strength aswell as my arms and shoulder muscle groups. Some pull-ups and 30 crunches. If you don't already know sit-ups can be damaging to your back, crunches work on a group of abdominal muscles, I'm not bothered about having a 6 pack but I am enjoying doing them as I know it will be quite a while after the op before I will be able to do them again.

I'm walking everywhere I can and at the weekend I took my eldest for an hour walk to explain the operation and what to expect but that segues in to practical preparation and I want to talk a little about diet right now.

Diet

I remember how ill I was 16 years ago, malnourished, in pain. I was seriously lacking the fuel to a speedy recovery. I was doped up with 60mg of prednisolone daily. My scar actually opened up after the nurses removed the staples which was pretty traumatic! My body just didn't have the bits required to nit the skin back together.

This time its different. Night and Day. My diet is 'balanced', well as balanced as a diet can be for an ileostomist, after 16 years of testing I know the things that don't agree with me. As i'm building up muscles density i'm consuming more protein than usual – normally this will be a lean chicken breast or some fresh fish. I am looking in to Carbo-loading (http://en.wikipedia.org/wiki/Carbohydrate_loading) for the week prior to each of the operations. I expect I will fast a day before surgery and it will be a couple of days before my bowels reactivate after the shock of the surgery puts them in to stasis. It'll mean my body will have a bank of reserves to call on to help with healing and also so I don't feel too ill afterwards.

Calorie Restriction

I mentioned fasting, which is a little something I discovered by accident after a few bouts of stomach bugs that I have experienced over the years. The week immediately after the stomach bugs I noticed (we see these things) that my digestion improved and my energy levels were higher. I experimented with just not eating for 24 hours and noticed the same results. For the past 6 months I have fasted on a monthly basis, in this time I have noticed skin conditions clear up and colds seem to be much less of a problem, having a child at school means more germs coming home. I've batted away colds within 1-2 days. From research I have done CR (Calorie Restriction) is a proven method for improving health and some research states that it actually has life extending properties. I am planning on intermittent fasting on a fortnightly basis. During fasts I consume water continuously and recently been lacing it with a couple of teaspoons of Aloe Vera juice which has a cleansing effect. I view fasts as giving my bowel a chance to rest and recuperate. More information here: http://en.wikipedia.org/wiki/Calorie_restriction

Sleep
Rest and recuperation is so important, I realise this after being a recovered workaholic. I am being disciplined about going to bed when I feel tired and (everyone look away now) in the day I take a nap after lunch. I awake feeling energized but a little guilty. If this were another county it would be called a siesta but here its 'slacking'. Its healthier than a cup of Starbucks and cheaper too!

Water

About 65% of the human body is made up of the stuff. Its hard work keeping hydrated as an ileostomist. From those stays in hospitals after seriously dehydrating bugs and a nice dosage of a litre of intravenous re hydrating saline solution I know i've been lacking in this area for years. I recall the nurses telling my mum to give me a drink whenever I felt thirsty, which was bad advice. Thirst is a sign of dehydration. Most people in a low level state of dehydration. I'm carrying a 75cl bottle everywhere, I get through 2-3 of these a day at the moment. I seem to be visiting the toilet to pee it out more frequently (lets call this toilet endurance) and the colour of my urine is healthy ie clear. Somewhere it says you should drink 2 litres a day. I am happy with my 1.5 litres of water. A glass of orange juice in the morning and the all the fresh fruit and vegetables I eat I am satisfied with my current hydration levels. Skin problems (dry skin) and nasal congestion seem to be clearing up already.

Kegels

Thanks to the wonderful people in the ia forum I learned that these exercises of my pubococcygeus muscles which will give me more control when it comes to the time for the 'go-live' date of my pouch. I have the jump on advice I will be given after the surgery so intend to build these muscles now. http://en.wikipedia.org/wiki/Kegels

A healthy diet, a healthy body, a stronger immune system - these are all things I am aiming for to achieve my goal. I do not take these well days for granted. I remember the time when the healthy days were scattered few and far between the swamp of sick days/weeks/months/years. If you are reading this and are not in a fit state to work on these aspects of preparation like me, don't worry. Its better to under-achieve than not achieve at all.

My next post I will cover my mental preparation for surgery.

Friday 21 March 2008

Preparation for Pouch Surgery

The fact that I have a notice period before surgery puts me at much greater advantage than someone who has to undergo an emergency operation. I did ask the surgeon what should I do to prepare and all they could suggest was 'just don't smoke'. I don't smoke but I do realise that I am in a good position to prepare for a major assault to my body. Over the next three posts I will go in to detail about what I intend to/am doing to prepare myself – the physical, mental and practical things that I hope will stack the odds in my favor for a speedy recovery.

Thursday 20 March 2008

The Next Step

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.

Wednesday 19 March 2008

My Story

I have had an ileostomy for 16 years. It rescued me from 3 years of turmoil, pain and medication due to Crohns Disease. I am 30 now. Have a wife and two beautiful children. This is the most selfish act that I will ever make but it is a dream I intend to fulfill - I have started the ball rolling to get rid of the ill fated rectum, rid of this blasted stoma and restore what's left of my bowel.

I have read the research papers and understand the risks, my mind is made up. One day soon I will break wind in the right and proper way.

I hope to record my story here as life unfolds.