Sam's History of Crohn's Disease
Sam and his development of Crohn's Disease
Sam first noticed the intial symptoms of Crohn's disease
at the beginning of August 2008, not long after he had finished taking his
GCSEs. He complained about "liquid poo". I was largely dismissive, saying that I
thought he had eaten something "dodgy" or perhaps he had a "virus".
However, when we were on holiday in the middle of August, I
commented to my husband how thin Sam was looking. He had always been slim, but
now he just looked thin. He still complained about liquid poo. As September and
the new term at school started, Sam continued to lose weight. He tried to eat
but couldn't saying he felt full. His abdomen became very tender, and he slept
most evenings in the chair due to the intense fatigue that overcame
him.
I remember going out for a meal with some friends, and they asked
what the lump was sticking out at the base of his neck. "Oh, that's his spine",
I replied. He was starting to look like a victim of a concentration camp. His
face went gaunt and triangular, like a Siamese cat.
Meanwhile, our GP
suspected either Crohn's or Ulcerative Colitis and Sam underwent blood tests
which came back negative. There was a 6 week waiting list for Sam to see an NHS
consultant, which given his dramatic weight loss of 20 pounds we felt was
too long. Therefore Sam had some tests done privately, none of which provided
conclusively that he had Crohn's. However, by the time he got his NHS
appointment, he was immediately referred for Colonoscopy, Endoscopy and a biopsy, which
conclusively confirmed the Crohn's diagnosis.
Sam started treatment
on steroids at the beginning of December. He started with 8 tablets a day,
reducing to 7 in week 2, 6 in week 3 and so on, taken concurrently with a
calcium supplement. When he got down to 3 steroids a day, the symptoms of
Crohn's began to return, and Sam returned to the consultant for a steroids top
up, so that he would be well enough to finish his AS level exams that he was
taking January 2009.
It is interesting to
note that one effect of Crohn's is gas that smells really bad.Both before and after Sam
was taking the steroids, although he appeared well whilst taking the steroids, his farts (sorry, but that's
the best word) really smelt awful, like somebody had died in
his bottom. To me, that indicated some nasty bacterial things going on in his
gut. Now we have removed lactose from his diet, his farts just
smell normal. Still not pot pourri, but not that disgusting smell they had before.
His farts smelt awful, like somebody had died, which to me indicated some nasty bacterial things were going on in his gut. Now we have removed lactose from his diet, his farts just smell normal.
It was at this time I was feeling very strongly that lactose was the cause of Sam's Crohn's. I did not have any particular reason for thinking this, other than a very strong feeling. A gut feeling (sorry, I couldn't resist). Perhaps sometimes a mother is hypersensitive to events when she can see her child in pain. I watched him eating 3 yoghurts in a row and then holding his stomach and complaining it hurt. I told Sam about my theory (this was before I had done very much in the way of research so I was just guessing at this stage.) Sam has faith in me, bless him, and decided to go lactose free. I told him that it was a win win situation. If it doesn't work, I argued, you can go back to eating cream cakes and chocolate. However, if it does work - no drugs, no surgeries, no stomas.
If it doesn't work, I argued, you can go back to eating cream cakes and chocolate. However, if it does work - no drugs, no surgeries, no stomas.
Prognosis
Sam has now been drug free and in remission since mid January 2009. At the time of writing, that makes it 4 months. [Update: Sam is still in remission now, Oct 2011, which makes it nearly three years!!!]. I think the doctor believed that Sam's Crohn's would have returned by now, especially as the symptoms recurred when he was down to 3 steroids a day. Sam opens his bowels about once a day or once every other day. He says that half the time is poo is looser than it used to be, although not liquid, more cow pat. The other half of the time it is normal. He is not tired, is gaining weight, growing very tall and has no abdominal pain. I am optimistic that Sam will remain in remission, although I am the first to admit that I cannot be certain about this.