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. During this dicourse you may notice that I seem to have a bit of a problem with doctors. I don’t really, well, maybe a little but it is important to note that much of the problem I have with doctors is that they really don’t know much about Crohn’s Disease.
It must be remembered that doctors know science, which is fine but, Crohn’s disease tends to be made up different things and there are aspects of the disease which have little to do with science. Unfortunately, this fact seems to get lost with many if not all doctors. This gives rise to a situation that can make things difficult and , in my own experience, extremely difficult.
It is very important to remember that neither medical science nor doctors are perfect in regards to Crohn’s disease or, for that matter, any other medical problem you might have. Doctor’s do not have all of the answers and this of course means that the responsibility for your body and your health can only be ultimately yours.
I really don’t want to seem to be preachy but it is important to get a handle on the fact that once you understand this basic truth, you could save yourself a lot of problems. In my own case, for 25 to 30 years now I have been going to doctors whenever I flared up and for 25 to 30 years the diagnosis has invariably been that I had IBS (irritable bowel syndrome).
Eventually I came to the conclusion that the diagnosis I was getting actually had very little to do with me. It 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”.
You see, doctors tend to want to give you an answer to your problem, which is understandable but, in the case of Crohn’s and IBS there is really no answer. In actual fact they don’t know what causes it and they don’t know what it is. This lack of knowledge can and does lead to big problems.
During all this time I was never given anything to go on, no regimen to follow, no diets, no place to go to fix it. So naturally, as you do, I let it ride and this is what I mean by taking responsibility. Hind sight is a wonderful thing but I could have saved myself a lot of grief if I’d looked at it in a different way. Unfortunately I didn’t.
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. So, 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 didn’t have IBS, I had Crohn’s disease.
Unfortunately, the treatment for Crohn’s just happens to be the complete reverse to the treatment of IBS. In my case, because of the Crohn’s, the area of my bowel between the large and small intestine had ulserated to the point of almost being closed. This of course, necessitated no fiber, none, not a bit of it and boy what a problem lies there in . Imagine if you will trying to push a whole watermellon down the drainwhole in your sink.
In all fairness to my doctor, he was 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 and 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 was all up to me.
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). Within five minutes she said I needed to go to hospital, which I did. At the hospital I was immediately given a bed and was subsequently diagnosed with a blocked bowel.
Major surgery was scheduled for the following week. Crohn’s disease is rarely 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. If you have a problem of this sort, get as much different counsel as you can. 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 can be difficult and in a limited number of cases fatal but, symptoms can be dramatically lessened or even 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 the disease. There is also a psychological aspect to Crohn’s that I have yet to see anybody discuss or even mention and will be talking about that at another time as well. But, right now I have got to get back to my studio.
Thanks for dropping by.
Reading this makes me feel like I wrote this myself. Except for the surgery. They have told me for 7 years it has been IBS. It’s good to know that I’m not alone. No surgery yet hopefully Thanks, Lynn
Thank you for your information it was so helpful, I also was told I had I. B. S. for 30 years and last year I was told i had Crohn’s whole new game the flareups are bad.I have been eating everything with the most fiber that I can find and after I always have cramps and didn’t know why now I do. I think I will now change my way of eating but that is always easier said then done, any thank you. Joyce
I just started a blog tonight because I found out a teenager I know has Crohn’s. Reading your blog sounds so much like how I feel. Why is it doctors are so hard to reach about this disease? It is hard enough for the patient, but it seems that the GI MDs I have seen make it worse. I am humiliated enough and in terrible pain and they are very nonchalant about what I am going through. They diagnosed the disease, but when I talk about symptoms or how I am feeling, they seem to dismiss me. It is almost like if they can’t see or quantify the pain or the symptoms, they can’t be real. UGH.
I would be interested in talking about the psychological side of crohns disease as well. I look forward to that post. My site is crohnsdiseaseetal on google’s blogs.
My husband has Crohn’s and we have no insurance- we are at wits end add that to the psychological aspect of the disease itself
go to these websites, they may help you pay for your prescriptions……
http://www.cdfund.com the chronic disease fund
http://www.uneedsi.org patient advocate afoundation
http://www.patientaccessnetwork.org patience access network
If you have no insurance, I’m sure a hospital clinic will take you…..
gloia
Although I do not wish Crohn’s on my worse enemy, I enjoy reading about other with this disease. I’m just off a 4-day flareup-nightmare, I’m feeling as though I can run a marathon now. The pain is such severe agony.
I was diagnosed with mild Crohns 30 years ago and was taking Salazopyrin for most of that time, which never completely stopped the diarrhoea. In recent years I became aware that I was lactose intolerant, so no longer having dairy products relieved the symptoms considerably, and this year, I have become aware that I am allergic to any 200 preservative and so far my bowels are normal and I no longer take the medication. My doctor says I could be in remission but I wonder if I was misdiagnosed and that the symptoms were caused by the allergies mentioned. I’ll have a colonscopy later this year to see if there is any inflammation. I weighed 50kgs up until about 5 years ago and now weigh 63 kgs and feel so much better. I feel I have a second lease of life.
I know first hand what crohn’s is all about. I’ve had it since i was a child. However, not diagnosed till pregnant with my 2nd child back in 1988. The pain when you have flare-ups is unreal! The meds you’re given…not sure if the side effects are worth it. I’ve been thru so much with this disease, and it seems no one truely understands the devastating effects it has, not only on your system, physically, but emotionally. Thank God for a loving husband, whos always by my side. Here I am again, 6th flare-up in a yr…had surgery for obstruction in Jan. 2009. Temporary relief…but, what am I gonna do this time? My flare started in my mouth, presenting as almost blisters, that went down under my tongue, and my throat, making it impossible to eat for over 2 wks.(not to mention the horrible abdominal cramping) The blisters are subsiding now, thanks to Prednisone (again)…but what happens next??? Drug side effects scare me! Any suggestions?
I know what you’re going through and understand your pain. Unfortunately, all I can say is to relate my own experience. Personally, I have found that the the majority of my crohn’s symtoms have been directly caused by stress and anxiety. Quite frankly, when I reduced the stress I reduced the crohn’s and that was it, full stop. I’m still not completely symptom free but I am, for the most part comfortable and the condition is largely under control.
I know it sounds terribly simplistic but it comes down to a choice between being un-stressed and being in pain. I chose un-stressed and it didn’t matter where that stress was coming from or how serious the situation was. I just said no, I’m not going there and would sit down and listen to music or go for a walk or whatever.
As far as I’m concerned, absolutely nothing is worth the kind of torture that this disease can put you through. Unfortunately, we live in a world where stress is not only acceptable but also actually normal.
The average person get’s stessed and that’s fine, take a pill. But, having crohn’s means you are not physically average and you are not normal. I found in my life that realizing that in itself was a bit of a hurdle.
I think the average individual in our society might consider taking a moment, grabbing some quiet time, relaxing, taking time out for meditating or yoga are a luxury and possibly a bit of an indulgance. Not only that but if you have children and responsibilities to other people then taking time for yourself could be considered irresponsible and self indulgant.
It has been my experience, overwhelmingly, that such is not the case for me as a crohn’s sufferer. Rather, taking that time, clearing my head and not being a puppet to external forces is not only essential it is every bit as important as eating, sleeping and even breathing.
I have just been diagnosed with Crohns,after the colonoscopy I was informed that it is urgent that I was put on predisolone 45mg per day down to 5mg by which point due to the ‘urgency’ I should have been to see the consultant. Yes, you have guessed it I have not been to see the consultant the appointment I was given was for the 4/12/09 lol. Due to the decrease in steroids all I eat is going through and I mean all. It has finally beat me down, due to the steroids my neck has swollen and am covered in bruises.. Do other people not heal due to the steroids? I have a blister on my foot and it has been there for 5 wks..I have had the doctor out today as I have had to take time off work, no sleep for days, no driving.. no concentration.. Any advice on how to sleep with the tummy/hip pain and rapid heart beat? or do I just have to wait until I come off the steroids? Anyway, my GP is going to get onto the hospital, she was furious, made me feel a bit better. So I have to wait for the appointment now, she has put steroids back up to 20mg per day.. Sorry for the rant but it difficult to make others understand how I feel.. ANY advice on sleep etc would be greatly appreciated. Am slowly starving to death and also bloating which is ‘great’.. Take care all..
The way i sleep is on my back. Before i got chrons i sleep on my side, but now that just hurts to bad. Whenever i was put on steriods i ate ALOT, i was always hungry and i never was full.