Posted 5/28/2013 10:06 PM (GMT -6)
I was diagnosed with UC when I was 13. I was put on predizone for an on and off period of a year with trials of difference maintenance medicines. I gain about 50 lbs in a very short time. The doctors put me on very mild drugs like lialda which are anti inflammotories. It never fully stopped the pain or bleeding and flares that I had throughout the years. So about every six months or so I would have a colonoscopy because the test they did on blood and samples every few weeks were never very conclusive on the issue unless they could go in and see it. Everytime they kept me on the same meds and told me it was very contained and minimal inflammation.
By the spring of my junior year of high school, the bleeding was large and amount of fluid that i was eliminating was alarming. I was hospitalize for about five days and was given a lot of fluids to help my body and the tested me for C-dif and then decided to put me on remicade. I was given a dose and discharged later that day. I felt great for a few days and thought I had dodge a bullet, but then it came back. I was admitted again to the hospital, they tried another treatment of remicade, but even with it I continued to get worse. Four days later, they did an emergency surgery and blood transfusion because of the amount of blood I lost. During that four and a half hour surgery they removed my entire colon and gave me a temporary ostomemy bag.
Three months later, I had my second surgeries where the formed the j-pouch and gave me a new ileostomy. I was hopsitalized for a bit longer than normal do to complications during the sugery from a microscopic hole in the creation of the j-pouch. The surgery turn out to be seven and a half hours and left me with a JP tube. After I left the hospital, they left the tube in for an extra two weeks to drain any excess fluid. By then I had turned 17 and was starting my senior year of high school. When I went in to get the tube removed I left in a lot of pain, me having never had that happen before thought it was normal. After about twenty four hours of me refusing to move from a chair from the physical pain of moving, I was admitted into the hospital again. I had gotten a infection that took a week and a half to treat.
A few weeks after that near the end of September I finally got my ostomy closed and my j-pouch put into use. It is currently the end of may of the succeeding year and I am still on two antibiotics treating for pouchitis. I have lost over forty pounds and am feeling beter, but I am very frustrated and wanted to know if anyone had experience prolonged pouchitis and how that was treated and how they are doing after.
If anyone can relate, it would be nice to hear from someone who knows what I am going through. I have never met anone who has an illness, much less UC. Thanks for reading!