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- Sep 10, 2011
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Hello, my name is John and I live in London, England. I am 39 years old and was diagnosed with Crohn's disease on 22nd August 2005. I remember the date well, though that is not even close to half the story.
I was actually first ill with what I now believe was Crohn's disease back in 1981. We had recently moved house, which was quite a stressful experience and I had started at a new school. Within a few weeks at the new school I became ill with what I thought at the time was an ordinary stomach bug.
I remember going back to school after about a week, but became ill again. Another week passed and I was still ill. Then another and another. After about 4 weeks of constant pain and diarrhoea, I had lost about 25% of my body weight and looked terrible. My GP, not knowing what to do next admitted me to hospital with a suspected appendicitis. I did not have an appendicitis and ended up staying in hospital for a week, which was quite a scary experience for a 9 year old. I have particularly vivid memories of waking up in the morning and feeling very scared and alone, just waiting for my parents to arrive to ease the fear and boredom.
Various tests were conducted and I had a colonoscopy which did not show much. At the end of it, I was told my problems were due to a lactose intolerance and to eat a diet free of dairy products. For a child this was very difficult - no chocolate, ice cream, cakes, etc, but I persevered in the belief that it would make me feel better.
Generally speaking, for about two years afterwards and while still on the diet, I did not feel better. I constantly had crampy stomach pains and just did not feel well. During this time, I started to get problems with my teeth, probably due to the lack of calcium in my diet and basically stopped growing. This was a concern for my doctors and they monitored my height and weight on a regular basis, but did not think to look any further at the stomach problems I was experiencing.
Then, somewhere around about the age of thirteen, things improved. By this point I had given up on the dairy free diet and in desperation had also visited a homeopathic doctor who prescribed some pills (not sure what was in them, they were white and tasted sugary - placebo?) I do not know whether the homeopathic remedy did anything beneficial or whether I had just naturally gone into remission, but I started to grow again quite quickly and by the time I was 16, I was back to above average height and weight.
Throughout my late teens and early twenties, I did not suffer any pain, but diarrhoea and fatigue were often a problem. As a student at University, I put this down to my lifestyle - too much boozing, late nights, lack of exercise and poor diet, but there was clearly a deeper problem. Over time, chronic illness forces you to adapt and you develop coping strategies that can turn even quite serious issues into "background noise".
I got through an undergraduate degree and then decided to do a PhD. During this time, things got a little worse, I remember sitting at my desk trying to write my thesis and found myself heading to the toilet constantly. My stomach felt sore and inflamed and I developed an abscess and fistula which later required surgery on multiple occasions to fix.
At this point, I really should have sought more medical help, but did not, partly out of fear and partly because I had become quite adept at coping. I saw my GP and got some antibiotics for the abscess which partially cleared it up and things felt a little more normal again.
In 1998 I finished my PhD and moved to London. Starting work really highlighted how low my energy levels were. I'd often be sitting in meetings in the afternoon and struggle to keep my eyes open. After a day at work, I could barely find the energy to cook dinner and often went straight to bed after getting in from the office.
Then in 2001 my father, who'd suffered with ulcerative colitis earlier in life, became terminally ill with lung cancer. This was a real wake up call for me and persuaded me to get my problems investigated further. That year, I had surgery on my fistula and a series of investigation to determine the underlying cause. My surgeon told me that he thought I might have Crohn's disease, but the tests (biopsy), to my surprise came back negative.
Over the next 4 years I continued to suffer with a peri-anal fistula which was eventually fixed on the third or fourth attempt with a seton stitch. My surgeon at that point referred me to a gastroenterology specialist, who after a barium meal came to the conclusion that I had Crohn's disease based on the fact that I had other internal fistulae.
So, on 22nd August 2005, I was told that I had Crohn's disease. The doctor seemed genuinely concerned for me and very sympathetic that he was telling me some life changing news. For me though, he was just putting a name on a problem I'd lived with for a long time, nothing had changed.
I immediately started on a course of azathioprine which largely kept my peri-anal disease in remission successfully. In the summer of 2010, after a long discussion with my doctor, I decided to stop taking azathioprine as I was not convinced I needed it any longer. I was still getting occasional bouts of diarrhoea, but nothing serious so I wanted to see how I would get on medication free.
That went really well up until July this year when I became ill again on holiday in Portugal. For a few weeks before, the warning signs had been there. Out of the blue I had a migraine. Then I started to get the tell tale signs of fatigue, anxiety and diarrhoea. On holiday I started to get severe crampy pain and bloating and could not eat. Then I started vomitting and ended up spending 48 hours in bed unable to get any further than the toilet.
On my return, my doctor felt my abdomen and immediately sent me for an urgent MRI scan. This showed active Crohn's disease and fistulae in two new place, so I was immediately put on a course of ciprofloxacin, metronidazole and azathioprine.
Right now, I am feeling ok, just fatigued with intermittent diarrhoea. I found this forum, because after 30 years, I have had enough of this illness and want to do whatever it takes to get rid of it permanently. Hopefully you can help me get there.
John
I was actually first ill with what I now believe was Crohn's disease back in 1981. We had recently moved house, which was quite a stressful experience and I had started at a new school. Within a few weeks at the new school I became ill with what I thought at the time was an ordinary stomach bug.
I remember going back to school after about a week, but became ill again. Another week passed and I was still ill. Then another and another. After about 4 weeks of constant pain and diarrhoea, I had lost about 25% of my body weight and looked terrible. My GP, not knowing what to do next admitted me to hospital with a suspected appendicitis. I did not have an appendicitis and ended up staying in hospital for a week, which was quite a scary experience for a 9 year old. I have particularly vivid memories of waking up in the morning and feeling very scared and alone, just waiting for my parents to arrive to ease the fear and boredom.
Various tests were conducted and I had a colonoscopy which did not show much. At the end of it, I was told my problems were due to a lactose intolerance and to eat a diet free of dairy products. For a child this was very difficult - no chocolate, ice cream, cakes, etc, but I persevered in the belief that it would make me feel better.
Generally speaking, for about two years afterwards and while still on the diet, I did not feel better. I constantly had crampy stomach pains and just did not feel well. During this time, I started to get problems with my teeth, probably due to the lack of calcium in my diet and basically stopped growing. This was a concern for my doctors and they monitored my height and weight on a regular basis, but did not think to look any further at the stomach problems I was experiencing.
Then, somewhere around about the age of thirteen, things improved. By this point I had given up on the dairy free diet and in desperation had also visited a homeopathic doctor who prescribed some pills (not sure what was in them, they were white and tasted sugary - placebo?) I do not know whether the homeopathic remedy did anything beneficial or whether I had just naturally gone into remission, but I started to grow again quite quickly and by the time I was 16, I was back to above average height and weight.
Throughout my late teens and early twenties, I did not suffer any pain, but diarrhoea and fatigue were often a problem. As a student at University, I put this down to my lifestyle - too much boozing, late nights, lack of exercise and poor diet, but there was clearly a deeper problem. Over time, chronic illness forces you to adapt and you develop coping strategies that can turn even quite serious issues into "background noise".
I got through an undergraduate degree and then decided to do a PhD. During this time, things got a little worse, I remember sitting at my desk trying to write my thesis and found myself heading to the toilet constantly. My stomach felt sore and inflamed and I developed an abscess and fistula which later required surgery on multiple occasions to fix.
At this point, I really should have sought more medical help, but did not, partly out of fear and partly because I had become quite adept at coping. I saw my GP and got some antibiotics for the abscess which partially cleared it up and things felt a little more normal again.
In 1998 I finished my PhD and moved to London. Starting work really highlighted how low my energy levels were. I'd often be sitting in meetings in the afternoon and struggle to keep my eyes open. After a day at work, I could barely find the energy to cook dinner and often went straight to bed after getting in from the office.
Then in 2001 my father, who'd suffered with ulcerative colitis earlier in life, became terminally ill with lung cancer. This was a real wake up call for me and persuaded me to get my problems investigated further. That year, I had surgery on my fistula and a series of investigation to determine the underlying cause. My surgeon told me that he thought I might have Crohn's disease, but the tests (biopsy), to my surprise came back negative.
Over the next 4 years I continued to suffer with a peri-anal fistula which was eventually fixed on the third or fourth attempt with a seton stitch. My surgeon at that point referred me to a gastroenterology specialist, who after a barium meal came to the conclusion that I had Crohn's disease based on the fact that I had other internal fistulae.
So, on 22nd August 2005, I was told that I had Crohn's disease. The doctor seemed genuinely concerned for me and very sympathetic that he was telling me some life changing news. For me though, he was just putting a name on a problem I'd lived with for a long time, nothing had changed.
I immediately started on a course of azathioprine which largely kept my peri-anal disease in remission successfully. In the summer of 2010, after a long discussion with my doctor, I decided to stop taking azathioprine as I was not convinced I needed it any longer. I was still getting occasional bouts of diarrhoea, but nothing serious so I wanted to see how I would get on medication free.
That went really well up until July this year when I became ill again on holiday in Portugal. For a few weeks before, the warning signs had been there. Out of the blue I had a migraine. Then I started to get the tell tale signs of fatigue, anxiety and diarrhoea. On holiday I started to get severe crampy pain and bloating and could not eat. Then I started vomitting and ended up spending 48 hours in bed unable to get any further than the toilet.
On my return, my doctor felt my abdomen and immediately sent me for an urgent MRI scan. This showed active Crohn's disease and fistulae in two new place, so I was immediately put on a course of ciprofloxacin, metronidazole and azathioprine.
Right now, I am feeling ok, just fatigued with intermittent diarrhoea. I found this forum, because after 30 years, I have had enough of this illness and want to do whatever it takes to get rid of it permanently. Hopefully you can help me get there.
John
