This is a question which I have been asked before and some friends have expressed (quite naturally) some concern over whether I am doing the right thing to opt for the ileostomy. This blog post is intended to get across my thoughts on it, and to construct the argument for surgery in my case.
In many respects I have been quite lucky compared to many others with Crohn's. My symptoms over the years have been relatively mild when I consider some of those I have heard of people having to deal with. For example, a common problem is for the development of 'fistulae'. The definition of a fistula is an abnormal connection or passageway between two organs or vessels that normally do not connect. In a Crohn's sufferer this can mean that the intestine becomes connected to the neighbouring anatomy - I recently read of a poor young lady who had developed a fistula connecting her bowel and one of her fallopian tubes. Other fistulae can develop where the gut "burrows" it's way to the surface of the skin, perhaps to the abdomen or around the anus. This can create sites of waste leakage and severe infection can result. There are also several other common problems which I have not (yet) suffered from with my Crohn's. Whilst I, obviously, am grateful not to have suffered such problems, it becomes a little dangerous for me because I often consider myself not to be as ill as other sufferers. I know that I naturally tend to convey this impression to family and friends. I also know that this is partly because I don't want them to worry unduly about me.
Of course, I must not forget that I have been suffering from many other symptoms of my Crohn's for 7 years now, in varying degrees mainly depending on how active the disease is. Jeez, if I wasn't ill I wouldn't be going to the hospital to speak to my consultant every few weeks! I must also not forget that I have actually had other significant medical problems, I'll talk about them now.
About 5 years ago, when I was in the last 3 weeks of the final semester during my MSc at Edinburgh University, I began to feel quite dizzy and nauseous. I decided I wanted to be at home and hopped in a taxi. About 500 yards from home I knew I needed to throw up and ordered the taxi to stop - I duly did the "techni-colour yawn" at the side of the road, counted to ten and got back in the taxi for the remaining short journey. I can't remember if I actually paid the taxi driver, but if I didn't perhaps he was just grateful not to have had to clean up my mess from the back of his cab! When I had been home for five minutes I realised that I had a fluttering in my chest - I was pretty sure I had an irregular heart beat, it felt like a butterfly panicking to escape from my chest. To cut the story short, I ended up in hospital for two days on a drip to re-establish the correct rhythm. I had suffered an episode of 'atrial fibrillation' (AF for short). This would be the first of around five episodes to date, the latest being June 2012 when it was quite serious and I was 'cardio-verted' i.e. shocked back into rhythm with a defibrillator at the A&E department.
The other major event in my medical past came in August 2011. One evening I was suffering bad chest pain and my wife and I called NHS 24. They were sure I wasn't having a heart attack, but asked me if I could be taken into the Royal Infirmary in Edinburgh to see a doctor that night. My wife duly obliged and after the doctor saw just how much pain I was in I was taken straight through to A&E. It turned out that the pain I was suffering was probably a combination of mild pneumonia and the fact that two small blood clots had formed in one of the main arteries to my lung. The latter is known as a 'pulmonary embolism', and the doctors seemed to be really bothered about this...I later found out that these 'PEs' are a pretty serious business, and can very quickly become life threatening. Thankfully mine were small and did not cause a severe blockage in the artery. I would complete a 6 month treatment of Warfarin to thin my blood.
The reason I'm telling you about these two medical conditions is because the senior medics I have dealt with all say the same thing - my Crohn's, tendency to AF and my PE episode are all inter-related. In that sense I can think of the AF and PE to be "caused" by the fact I have chronic inflammatory processes going on all the time in my body, i.e. my Crohn's. These events are a major cause for concern for my GI consultant. He is not only trying to help me with dealing with the "direct" Crohn's symptoms, but also trying to do his best to prevent episodes of AF and PEs. We have tried all the approved (and some unapproved) medications in the arsenal against IBD but none of them have worked. My inflammatory markers remain sky high, even when I'm feeling well on steroids (to put numbers on it, for 'fecal calprotectin' - a test based on a stool sample to indicate bowel inflammation - 50 is the upper limit of normal and I have been at 600-700 for the past 3 years). Simply put, until this number reduces I am living with an increased risk of further episodes of these other, serious conditions.
The hard truth of it:
I have three options:
1). Try to reduce my inflammatory markers with unproven drugs
2). Try to reduce my inflammatory markers by a combination of unproven drugs and/or "alternative medicine" (e.g. homoeopathy, applied kinesiology, meditation, acupuncture - the list goes on...)
3). Remove my bowel and get an ileostomy.
For me the decision to go for the ileostomy is quite simple, opting for options 1 or 2 would mean gambling unnecessarily with AF and a potential PE. Perhaps some melodrama is justified here, I could be gambling with my life.
A little bit on alternative medicine:
I have absolutely nothing against it and I am sure that there are many people who derive significant benefits, and I'm not just talking about treatment of Crohn's here. I was just talking to my sister who has used the homoeopathic treatment Arnica during three caesarian sections, citing her speedy recoveries. The big problem for me, right now, is that very rarely are alternative methods backed up by hard proof of efficacy. From my experience, anecdotal evidence is often abundant in the argument for alternative methods but very rarely against it. This is a result of people finding (or believing to have found) things which help them. Quite naturally they want the world to know of their success, and they want others in similar circumstances to benefit too. This is fantastic and must continue. However it does skew the perception of efficacy towards being beneficial; in truth you don't actually know how likely it is that trying a particular alternative method will work. Are the odds 50%, 10%, 1%....0.1%, 0.01%, maybe less? I believe that people facing difficult medical decisions, like me, have to seriously consider what an undertaking it is to "go down the alternative route". Ask yourself, "do I have time to try something alternative?".
For me, as I've already illustrated, it's about a ticking time-bomb. I simply don't have the time to explore unproven methods. I have been offered a procedure which is proven to have very high success rates in significantly reducing or eliminating the symptoms of a Crohn's colitis sufferer. There is a very good chance of a permanent remission and the big "carrot at the end of the stick" is that I can reduce my risk profile with respect to AF and further PEs.
Wow, this has become quite a long post and I hope you're not bored to tears. I'm going to wrap it up now but, as always, thank-you for your support and for helping me through this process.
"We're all in the gutter, but some of us are looking at the stars" - Oscar Wilde