Anyone that knows anything about Hirschsprungs Disease can tell you the facts. The first fact is that every child with this disorder requires an operation to remove the part of the colon that does not work properly, leaving the child with a shorter than normal colon. Since Dylan has had 3 operations, the first 2 operations in the first year of his life, his colon is rather short. He approximately has a third of his colon left. This causes him to have diareaha like bowel movements because the large intestine is responsible for absorbing the water and turning stool into a solid form. As of lately his bowel movements have slowed down. My last post was about a possible partial obstruction caused by his slower than normal motility and my mistake of giving him popcorn.
After trying an irrigation and Dylan vomitting once, he began to feel a bit better, but his bowel movements still were not normal. He wasnt passing enough on his own to fully empty which causes him to get sick and backed up. I contacted the nurse that handles Dylan's case at Cincinnati, filled her in on what was going on, and asked for her opinion of trying a laxative. With the confirmation that it would be safe, we tried exlax. We were told to try 1 square, if he didnt empty on his own within 24 hours to try an irrigation and then up the dose to 2 squares. Dylan is one of those children who goes into fits at just the sight of a medicine bottle, so luckily I hid the package that the exlax came in, and handed him a chocolate square. Much to my surprise he gobbled it down and wanted more!!!!!!!.....The exlax did work, slowly he began emptying a bit at a time, 24 hours later though, he still wasnt emptying like he should, so I did another irrigation. During this time he lost 2 pounds, which shows that his colon was with holding alot of stool. The exlax caused him to have a nasty rash on his bottom that bled, so we have since stopped giving him that.
But I am now doing irrigation ever few days, just to help his colon empty. We have also tried some probiotics. Probiotics will help put some "healthy" bacteria in the colon. So yet again we are back to trial and error trying to figure out this puzzle....Will we ever figure it out? Will Dylan ever be well enough to just be able to live a normal life without irrigations, or medicines? I guess that all depends on the results of the trial and error methods we try. Until then, we have hit the "motility" road block and are not sure what to do.