Hello I am going true a hard patch it’s been over a year since i almost lost my life due to PSC. And I am woundring what do you do with your pain, I’ve been in constant pain for so long. Any advice would be greatly appreciated
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Neta,
Thanks for your post. Can you please describe in detail what kind of pain you are having and where the pain is located? What other symptoms are you presently having?
Hello fcmmark Sharp pains in my upper right side of my stomach
What is your latest bilirubin level? Also, go to this link and fill in the data and let me know what your current MELD is please. MELD calculator - OPTN
Mark
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Neta, let your doc (s) know what you are going through and ask for some help. Is your doc a hepatologist? Better a specialist than a GI generalist. Constant pain should get their attention, but about the only thing that got my doc’s attention was my bilirubin level. When that too high, he wanted to do an ERCP on me.
The pains I had were sharp, but tended to not last more that a few seconds, although there were some notable exceptions!
Jeff
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Pancreatitis is a pretty common pain with this disease. It seems that once you have gotten it, it will reoccur more often with fatty foods and a poor diet. At least that’s what I am experiencing.
Let us know when you get your blood levels tested.
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Hi Neta,
Ask your doc for help. My GI doc and my helatologist got me referred to a pain clinic. I have had daily pain since diagnosis but my pain doctor is amazing. There are many options, not all involving taking pain medication if that is something you are afraid of. My UC is in remission but that is always something you want to make sure of first- that the pain isn’t from an active problem that needs fixing. But if your like me and your disease is stable, there are treatments.
Hang in there,
Kori