(CONT'D)
For the next few months, I experienced a lot of pain. I had a bunch of tests multiple times such as CT scans, ultrasounds, barium x-rays, and even scopes of my new pouch. None of the tests showed anything that would be causing all of my pain. I took Tylenol 3, then straight codeine, and even demerol pills from December until March. In March, we decided that something had to be done so I had laparoscopic exploratory surgery. A lot of adhesions and scar tissue were found so they were cut in hopes of helping the pain.
It seemed like a miracle, that helped. But before long enough, the pain was back again, interrupting my normal 13 year old activities. I took a lot of pain meds once again and like before, none helped. I had pouchitis in May which caused some bleeding and more pain, and then I started to bleed from higher up in my intestinal tract. They did a scope from both ends to see how the pouch was, and what was going on higher up and found that my duodenum, the first part of my small bowel, was very inflammed. It bled just from barely touching it. Biopsies were taken from both the pouch, and the duodenum and the pouch came back as pouchitis which was already known. The duodenal scope was inconclusive. I was kept in the hospital and had yet another picc line inserted, this was my third one. I had TPN, and no food or drink to see if it would solve the inflammation higher up but it did not. I spent the majority of the summer of 2000 in the hospital. There, i had tests, received IV pain meds, and more.
In august, we decided to go ahead and do yet another laparoscopic surgery to cut the adhesions. School was to start soon and I wanted to be there for my first day at High school. This time, the surgery worked, but not as much as it did the first time. I had some problems getting off the narcotic pain medication after that, as I was on it for a year straight. I was given time release morphine, and cut it down gradually. 2 months later, I was finally off of it.
I did not do too bad for those few months but scopes once again in October Revealed that the Pouch inflammation and the duodenal inflammation was still there. Biopsies started to show small signs of crohns, or some other type of inflammatory bowel disease anyway. Doctors believe there are other forms that have not yet been discovered and named and therefor, I just have IBD. I was put on something called Budesonide (Entocort) which is a steroid that is pretty new and is supposed to be good because you do not get as many side effects as you do with Prednisone, but on the other hand, it works topically so is not as effective. We decided to give that a try but it did not work.
I was then put on 40mg of prednisone orally, and did that for 2 and a half weeks. In that time, I had scopes from both ends, and it was found that i still had inflamation in my pouch, as well as my duodenum.
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