Children who suffer with these problems need lots of emotional support. These are “lonely” diseases, dealing with a sensitive part of a childs anatomy.
Crohns disease is an autoimmune disorder. It can be devastating to anyone, but especially children. This is not an easily diagnosed disease. Ulcerative Colitis is similar, but different in its symptoms. No one knows the cause of these disorders, though there is a theory that a virus may act as a trigger to the latent problem. Other studies cite certain medications or environmental factors. Psychologically, this is very, very difficult for children to deal with.
I developed Crohns Disease around the age of 7. It remained undiagnosed for many years. The onset involved sudden, severe bouts of intense abdominal pain, fever and diarrhea, so serious, I lost 40% of my body weight, ending up weighing 30 pounds. I stopped growing in height and couldn’t regain the lost weight. My joints would swell and redden, leading them to diagnose rheumatoid arthritis.
Fever remained, in spite of antibiotics, and truly world class medical care, at 100 degrees, for years. I was wheelchair bound for the entire 7th year of my life, due to pain and weakness. The symptoms continued off and on, until my 27th year, when I almost died from intestinal obstruction, and the diagnosis was made surgically. It’s taken 5 major surgeries and 2 prolonged bouts of chemotherapy to put me in semi-remission.
These are all classic worse case scenario Crohns symptoms. Any child who is experiencing the following cluster of symptoms needs to be followed closely by their pediatrician:
Ulcerative colitis is similar in some ways to Crohns, but profoundly different in others. It is not an autoimmune disorder. The intestinal lesions, present in both are very different. In Crohns, the lesions skip , they don’t form a continuous line throughout, but skip, leaving healthy tissue in between.
The ulcerations penetrate all the way through the intestinal wall, whereas in ulcerative colitis, they remain on the outer layers of the intestinal wall, and rarely perforate. The fever is different too. In ulcerative colitis, a wildly swinging temperature is often seen. Diarrhea alternates with bouts of constipation, causing tremendous pain. There is no joint or systemic involvement, as with Crohns disease. In many ways, this is an easier disease to diagnose, because the symptoms can present so dramatically, especially in children.
Children who suffer with these problems need lots of emotional support. These are “lonely” diseases, dealing with a sensitive part of a childs anatomy. They are often embarrassed by the diarrhea, cramping, and sometimes incontinence. Medications like Prednisone can cause “moon” face, brittle bones and lowered resistance to infection.
Surgery for obstruction can be intensely painful and scarring. If you have a child with one of these diseases, reassure them that with good medical care and planning, they can often lead normal, productive lives. You can point out, that some early onset cases of Crohns, appear to burn themselves out, by a childs 18th birthday. Not often, but this can give the child some hope of future relief. Join a Crohns support group to get some help with your own feelings, and to keep up with the latest advances in treatment.
Finally, let your child become an active partner in treatment from a gastroenterologist. Encourage him to be frank about feelings and opinions on treatment options, and most of all, to ask as many questions as he needs to feel comfortable. After all, this is his life, his problem. Let his friends help if they want. Explain Crohns isn’t “catching”, and that he needs their friendship and support. All of this will help your child learn to live with his disease in a more balanced, comfortable way.
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