What Next?

I have been diagnosed with PSC for a few years, before the diagnosis I have battled UC and Celiac. I would like to know what is in line for me next. I have experienced the jaundice, the itching and the many ERCP's to dilate the bile ducts. I have read that many patients experience weight loss. I am the opposite. I am not a canidate for transplant due to my weight. My specialist is wanting my weight under 170 lbs. This is stressful as I will need to lose over 100 lbs. My questions are what will I experience next? I hate the unknown. At what point will I begin to drop weight, will I lose my hair, does this disease cause dental problems? Any information will be appreciated.

Hello! My fiancé is on a steroid which typically would cause weight gain but the PSC keeps him from gaining weight. He does lose a good amount of hair at night. Recently I changed his shampoo, he’s using Nioxin and he’s commented on his hair feeling fuller so it seems to work. From our experiences and finding, everyone is a bit different. All we can do is stay on top of check ups and try to live with a clean diet, loading up on lots of liver loving foods. Stress is a huge factor in our fight. When my fiancé feels badly (sharp pains, diarrhea, cold sweat) the first thing I ask is ‘what’s on your mind?!’ and it usually turns out he’s holding in stressful nerves. Stress effect him almost immediately once he let’s negative thoughts get the best of him. Once he’s relaxed, he’ll feel a tad by better, but the rest of the evening needs to go smooth. Red meats and milk are his noise makers- bubble guts and lots of gas. We’ve been in and out of the hospital for all kinds of tests and appointments with specialist, procedures and scares. At the end of day (and hundreds of dollars each month spent on meds, specialists, testing and preventative care ) they all say, keep up with your meds and call us if something happens. So, we live day-by-day, trying to enjoy life. Good luck & God bless.

what lifestyle changes have you made to address these issues?