My daughter was diagnosed with Crohn's Disease via colonoscopy at the age of 12 following a couple of months of persistent stomach flu symptoms. Then, several years later, my 15 year old son presented with Crohn's, beginning with fatigue but not yet any painful stomach symptoms or diarrhea.
Between the two of them, they have taken every medicine in the book and many more in the experimental stages. Currently my daughter is 28 and son 25 and though they have suffered from symptoms off and on over the years, they have both managed to avoid surgery. Son has been stable and relatively symptom free (it's hard to get rid of the diarrhea) on 6MP but daughter has not had a remission for over four years. Lately, because of severe weight loss and malnutrition, she had a PIC line inserted and plugs into home TPN every night. It's worked wonders for her weight but does nothing for the actual Crohn's symptoms. It's very frustrating for her. Having dealt with this as a parent for 16 years I'm pretty well informed on the disease, diet, research and aware of how many different manifestations it can take.
If my experience can help any parents out there coping with caring for a child with Crohn's, please feel free to write.
Between the two of them, they have taken every medicine in the book and many more in the experimental stages. Currently my daughter is 28 and son 25 and though they have suffered from symptoms off and on over the years, they have both managed to avoid surgery. Son has been stable and relatively symptom free (it's hard to get rid of the diarrhea) on 6MP but daughter has not had a remission for over four years. Lately, because of severe weight loss and malnutrition, she had a PIC line inserted and plugs into home TPN every night. It's worked wonders for her weight but does nothing for the actual Crohn's symptoms. It's very frustrating for her. Having dealt with this as a parent for 16 years I'm pretty well informed on the disease, diet, research and aware of how many different manifestations it can take.
If my experience can help any parents out there coping with caring for a child with Crohn's, please feel free to write.
You certainly do have wealth of experience! and I have no doubt will be a wonderful asset to the forum. Thank you so much for your offer and please drop by the parents forum, your knowledge and presence will be most welcome...
