Posted 12/9/2012 5:22 PM (GMT 0)
Hi, I'm new here, and I am desperate. I'm 28Female with a Liver Transplant in 2005 due to Auto-Immune Hepatitis or Primary Sclerosing Cholangitis (PSC). Docs still not sure which. Developed bad diarrhea last summer, Mayish, after dealing with CMV immediately post-op and for a couple years after. Had great doctors in Utah. Now, I'm in Belgium with my husband on military orders. Docs here have been helping me, but are reluctant to give some meds for significant lengths of time (like Prednisone for too long). Prednisone, 32mg 1x/day, helps UC a ton, love it, only on it for a week or so at a time before doc makes me taper off. Also, European med Clipper works well, too; also cannot take for more than a couple weeks at a time. Started Remicade last Spring, normal dose every 8 weeks. Still had many issues. Now up to Double dose every 4 weeks. Doc wants to have me get a second opinion at big hospital in Leuven, Belgium, and he's pretty sure she will tell me the same thing he is: to get a colostomy. I am a mother of girl, 5, and extra-extra-busy boy 2. Having best relations of our marriage with my husband. Finally at a weight where I feel good at how I look; have bought nice cloths that form-fit after always being huge (pre-transplant) or no confidence post TX. I love to swim. My little sister is getting married next summer; I'm a bridesmaid (dresses!). Please, please, PLEASE, help me. I'm begging anybody out there. What are some treatments your doctors have put you on to stabilize UC? Any suggestions on daily life (I already avoid meat and high-fiber foods). I feel like I have to do all the research because my doc seems so intent on doing this surgery, but my choices here in providers is sooooo limited! I'm desperate here, so very desperate. Thank you.