Last week, in this diary, I described my son's journey over the last four years with Ulcerative Colitis. As I was putting the finishing touches on that diary, I found more information on one of the drugs that he is currently taking.
Also, among the comments, it was requested that I provide more information on how Mom and Dad worked to handle the information. Finally, I did want to provide a bit more information on the disease itself, and the related Inflammatory Bowel Disease(IBD).
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First, the recap: My youngest son (the Younger W) suddenly developed frightening symptoms at the beginning of his eighth grade school year. It took months to get it properly diagnosed and to get his condition stabilized through medication. He now has the diagnosis of Ulcerative Colitis, a condition similar to Crohn's Disease, and together the two diseases are known as Inflammatory Bowel Disease.
IBD should definitely NOT be confused with Irritable Bowel Syndrome. While IBS can be annoying and difficult, it is not remotely of the severity of IBD. Also, most authorities on IBD do not believe that diet causes or contributes to the IBD flare-ups.
Of the two IBD conditions, UC actually does have a cure. The bowel can be removed and a part of the small intestine can be modified to perform some of the most important functions of the bowel, and does not require the need for a colostomy bag. While the same procedure may be done for Crohn's, there is a possibility for problems to occur in other parts of the digestive system with Crohn's, so the operation is not considered a full cure.
At this time, both IBDs are thought to be caused by problems with the immune system. It seems that something (unknown at this time) causes the immune system to activate in the colon despite no foreign invaders. There also appears to be some genetic links as to the susceptibility of triggering the UC. Both of these, along with other biological causes are still being investigated.
As for the Younger W's current treatment, he takes Lialda with azethioprine. Just two weeks ago, the FDA issued a new safety alert for azethioprine and other drugs that are prescribed for UC, Crohn's, and some forms of arthritis (including rheumatoid arthritis), may have a higher occurrence of something called Hepatosplenic T-Cell Lymphoma. I have asked the Younger W's pediatric gastroenterologist to try to find out more about this before our next checkup. That way, we can discuss if it's best to keep him on the drug regimen that has kept the flare-ups in remission, or if it is best to try to find a new combination. His first opinion, after a brief study, is that it is best to keep him on his current course. However, the doctor assured me that he will bring it up in discussions with the entire team.
Finally, as for Mom and Dad, we probably have taken it harder than the Younger W, at least most of the time. We find that we probably keep a tighter rein on his activities than most of his friends. Most of the time now, we don't stop him from usual teen activities, as long as he remembers to take his medications.
We also worry every time he has a fever or flu-like symptoms, as these can be serious based on his history and the medications he has to take.
He probably was most upset because we wouldn't allow him to take a Japanese Club trip to Japan later this spring, even before the complications of the earthquake and nuclear plant problems. We just had a problem with him being out of the country in case he had a flare-up while there.
If there is one good thing about all of this, we are less worried about him becoming addicted to alcohol or other drugs, as these would mess with his system and probably cause flare-ups that he wants to avoid.
In the end, while it hasn't been easy for the Younger W, he has handled this amazingly well, and probably better than either Mom or Dad.