Nov 08 2007
Crohn’s disease and me.
My main problem with doctors.
Because I’ve had Crohn’s disease for most of my adult life I thought it might be a good idea and a help to others if I wrote about a few of my experiences. It may seem during this discourse that I have a problem with doctors, I don’t really, well, maybe a little bit but it is important to note that a lot of the problem with Crohn’s is that they don’t really know what causes it. My main problem with doctors is that while they don’t know what causes it they still need, in their heart of hearts, to give you a diagnosis. Difficult to give a diagnosis on something that you don’t know anything about. The other problem with doctors is that they know science which is fine but in my experience Crohn’s disease tends to be made up of different aspects of both mind and body, a fact which seems to get lost with many if not all doctors. This can make things difficult and in one particular instance extremely difficult.
The responsibility for your body and your health is ultimately yours.
It is very important to remember with Crohn’s disease or in fact any other medical problem you might have that neither medical science nor doctors are perfect. They do not know all of the answers. The responsibility for your body and your health is ultimately yours. I really don’t want to seem to be preaching but the point is that once you understand this you could save yourself a lot of problems. For 25 years now, maybe 30, I have been going to doctors whenever I got a flare up and for 25 to 30 years the diagnosis has always been that I had IBS; irritable bowel syndrome. I think possibly that I am not alone in this experience. You see, doctors tend to want to give you an answer to your problem which is understandable but the major problem here being that in the case of Crohn’s and IBS there is really no answer. In actual fact they don’t know what causes it, they don’t know what it is and that does cause problems. After the number of years I began to come to the conclusion that the IBS diagnosis I was getting was simply a way for the doctor to say yeah you got something but I don’t know what it is therefore IBS is as good an answer as any. During all this time I was never given anything to go on, no regimen to follow, no diets, no place to go to make it better. So, naturally as you do, I let it ride and this is what I mean by taking responsibility. I probably could have saved myself a lot of grief if I’d looked at it in a different way but I didn’t.
…
…The big Crohn’s disease flare up!
I was young, the flareups came and went and life went on. Eventually and not that long ago I was hit by the big one. The big flareup. I dutifully went to my doctor and he predictably gave me the same answer that I have gotten for all these years namely irritable bowel syndrome. OK, fine I took his prognosis. For the treatment of irritable bowel syndrome the accepted wisdom is to fill your system with fiber and that’s what I did. You know, whole-wheat brands, fiber supplements, high-fiber fruit and veg and so on. The big problem here was that in fact and unbeknownst to me at the time, I don’t have IBS, I have Crohn’s disease and the treatment for Crohn’s in this instance just happens to be the complete reverse to the treatment of IBS. Crohn’s disease necessitates no fiber, none, not a bit of it and boy what a problem there in lies. If you think of a balloon being filled with air then that was my bowel. All that lovely fiber had to be pushed through a very small hole and it just weren’t doing it. In all fairness to my doctor he is a very nice man but unfortunately not a terribly good doctor. The long and the short of it was that for about six months, four to five days a week, 12 hours a day I rolled around on my bed in complete agony. Imagine eating too much, getting too full and all the discomfort involved and then multiply that by 100. I do not exaggerate. Again, if I had half a brain in my head I would’ve gone to a different doctor. Admittedly with the English medical setup that can be difficult but ultimately I should’ve explored different avenues. My point being, again, it’s all up to you.
Major surgery was scheduled!
Anyway, eventually I could no longer take it and called the night clinic. I talked to a doctor who, after hearing what was happening, actually did a house call (which I don’t think they do anymore) and with in five minutes said I needed to go to hospital which I did and after which I was immediately given a bed and diagnosed with a blocked bowel. Major surgery was scheduled for the following week. Crohn’s disease is not a fatal illness so I don’t want to frighten anyone but this time, because of my own and my doctors mistakes I think I came really close to popping my cloggs for real. Just goes to show you. Again if you have a problem of this sort get as much different counsel as you can and doctors are not perfect, they are human. I have to say in closing that I do not in any way want to frighten anyone about Crohn’s disease. It’s can be difficult but it can also be for the most part not a real problem and / or problems can be avoided. There are now many ways that can lessen the effects of Crohn’s disease and make it very livable. So, don’t let me scare you. I will be writing up various experiences that I’ve had, some bad and some funny because there can be a funny side to Crohn’s. There is also a psychological aspect to Crohn’s that I have yet to see anybody discuss or even mention. I will be talking about its at another time as well. But, right now I have got to get back to my studio.
