I had my J-pouch created in 2009 for a then diagnoses of UC. I tried all the normal UC medications and took Remicade for 3 years before it finally stopped working. About 2 years ago I started having issues cuffitis, pouchitis, and then was diagnosed with Crohn's. I had a pouchogram completed today and the GI is very concerned as I have severe ulceration on my cuff, pouch, and small intestine above the pouch. I've taken all medications that I know of and am really worried that I am about to lose my pouch and still have the same issues due to the inflammation/ ulceration in my pouch. Here are the meds I've been on
Asacol- didn't really every help
Remicade- Failed with UC
Humira- never worked
Cimzia- never worked
Protofoam- never worked
Canasa suppository- never worked
steroid suppository cannot remember name but never worked
Tindamax- never worked
Endocort- current med
Pentasa- current med
Predisone 20mg current med
Flaygl- current med
Cipro- usually rotate to for pouchitis but didn't work last time I tried
I think that is all of them…. My GI has tried to get me to take Tysybri, but after reading the side effects I really don't want to think about trying it, and in addition I tested positive for JC virus antibodies so I really shouldn't be taking it, but my GI has still been pushing me to give it a go even with the risk of JC virus. I have no idea what to do and am at my wits end. I cannot remember how long it has been since I've been this sick and I just don't know how much longer my body is going to keep the fight without ending up in the hospital. In addition to the normal issues that go along with pouchitis, cuffitis, and Crohns, I've had a temperature every day (100-101), chills, and shivers for the past two weeks. My PCP says it's not viral and I need to call my GI, and my GI says its viral and I need to call my PCP…..
When will it ever get better? To beat it all I just finished my bachelor's degree,and graduate next week. Between school, working full time, and having a year and a half old son the past two years have been so busy, and now I finally get time to sit down relax, and spend time with my family, but all I can do is lay around in my chair sick to no end!!!!! I just want to be normal and enjoy my family… is that to dang much to ask for!?!?!?! (sorry had to vent)
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