Crohn’s disease and me.
This entry was posted on Thursday, November 8th, 2007 at 11:28 am and is filed under Living with Crohn's. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.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.
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April 9th, 2008 at 2:30 am
I do not have any symptoms of Crohn’s disease, but my mother dealt with all of these symptoms on the sever side from 2001 until her death in 2005. she had several exploratory surgeries and part of her intestines removed as they had fused together and had even fused with a portion of her vaginal wall. She was never diagnosed with Crohn’s. In fact at one point she was told that she was dying and that she should just go home and prepare. No diagnosis provided. She had one doctor who was not satisfied with that answer, but he still did not know what the problem was. I do not know everything that he did for her, but she was treated with steroids and a special diet. eventually she regained some of her health and gained a bit of her weight back. She had drank, but this doctor told her that she must stop. She did pretty good with that, but not perfect. My step-father was not very supportive of the drinking and smoking issue. She was improving and remained fairly symtom free (w/the exception of diarhea). for over 2 years. The last 6 months of her life she spent in extreme agony. She was treated through a VA hospital and had surgery w/the removal of her gall bladder and another surgery that involved the flushing of her intestines with antibiotics. non of this worked. She was in and out of hospitals for the next several months. The last week of her life we were told that she had scerosis of the liver and that if she made it out of the hospital to call hospice. She did not make it out of the hospital and she had been checked for scerosis before and that test was negative. I was always suspicious of the last diagnosis and when I saw that one of the complications of severe Crohn’s is liver scerosis it made sense.
the month after my mother’s death, my grandmother started experiencing extreme pain and other similar symptoms as my mother. My grandmother lives in California and had access to great doctors. She had a diagnosis of Crohn’s disease in a very short time. My aunt became curious and began searching on-line and discovered that all of my mother’s symptoms were the same as extreme cases and that it is suspected that it is genetic. Since all of the women in my immediate family suffer with some form of IBS she decided that she would direct me to the=is information.
While we will never know for sure if this is what my mother died from at the age of 64, my grandmother, aunt and I believe that she was a victim of both ignorant doctors and Crohn’s disease. I am not blaming the doctors, now days with the internet, we the individual must also take resposibility for our symptoms and possible ailments or diagnosis.
I just want to thank you for allowing me a place to express my feelings on this topic. The death of my mother is not something that I seem to be able to deal with and I usuallly remove myself from it since I did not live in a close proximity to her I generally live in state of denial. Since my aunt’s original search I have made sure that I am educated to the symtoms of this disease so that my own children will not have to deal with the unnecessary death of their mother.