Dylan began struggling with having too many bowel movements a day, it was almost like having diarreaha on a daily basis. He then struck ill with stomach virus episodes, usually these symptoms would only last a day or so but they were terrible. Finally after dealing with these problems on and off for a year and a half we saw his surgeon again in August of this year. I was determined at this point to do anything to help straighten out Dylan's bowel habits. At this point he was two years old and potty training wasn't anywhere in the picture due to his bowel movement being so loose and so often. Dylan's surgeon finally realized what were dealing with, we described all the episodes of the stomach virus symptoms and the fact that Dylan had never had a formed bowel movement. Dylan's surgeon felt that since Dylan was 2 1\2 years post surgery that his bowels should be formed and slowing down by this point. He suggested trying a dairy free diet for a week to see if maybe Dylan had an allergy to milk products and call him with the results. We tried this, there was no change in the bowel movements. He then felt it was nescessary to do a colonoscopy, this would show him the entire colon and identify any problems if there were any.
(fast forward to September)
As parents we wondered if this test was really needed, we wondered if we were putting him through this for nothing but then realized its better to know if there is a problem then to let things get worse. We had the test done, while waiting, I was really positive we would get good news and maybe start on some type of meds to bulk up the stool or even maybe try a bowel management program. Dylan's surgeon came out with pictures in hand, his first words were "Well, I'm glad we decided to go ahead with this colonoscopy. I've found the problem." My heart then sunk into my stomach, here I was being so postive that nothing was wrong and that I was probably over reacting al; along. Turns out his doctor couldn't even complete the colonoscopy, he entered the rectum with the scope and could only get 50 cm into the large intestine before running into an adhesion, possibly more scar tissue but this time it was even more rare, never before had he seen these type of results this high up in the colon. He explained he got a biopsy from this area and was testing to see if this was possibly Inflammatory bowel disease or if it was indeed a rare ischemic stricture, which is a blood vessel that is damaged and dead, which causes scar tissue to build up and no oxygen to get to that part of the intestines.
We waited impatiently and nervously for these results. It was quite scary considering if it was indeed an ischemic stricture Dylan would need another surgery to remove this part of the intestines. His surgeon had admitted himself that he had never treated a case of this before, and he had been a surgeon for 25 years. But of course, being the most rare diagnosis and so uncommon it was indeed the results of the biopsy, this specimen showed this part of the bowel was dead. Dylan's doctor then began setting up for us to see Dr. Marc Levitt in Cincinnati. I had researched Hirschsprung's Disease so much that I had remembered reading about Dr. Levitt and the fact that he was a pro at treating Hirschsprung's Disease, he had done several surgeries, world wide for this rare disorder and help establish the only Colorectal Center for children in the United States. This man dedicated his life to children who have defication disorders. I was very confident that he could fix Dylan's problems.
At this point we were playing the wait and see game. Dylan had a few test done and we were in the process of conversing with Dr. Levitt's office to set up a consult and more test so he could diagnose the problem himself. Like I said, we played the waiting game for the most part, very nerve racking from a parents perspective to just wait things out when your child is possibly sick with a rare problem. At this point Dylan's bowel movements had slowed down to every few days and this was signs of a partial obstruction. We were still in disbelief of the new problems Dylan was diagnosed with. We stayed positive and waited to hear from the medical professionals in hopes that they could get Dylan taken care of before the problem turned into anything more serious.