I’m new here and new to PSC if that what I have.
My journey began with the birth of my daughter with a 4th degree tear and a diagnosis of Crohn’s dx. I had several repairs for fistulas and another major surgery which removed my appendix, gallbladder and uterus.
I continued to have major complications from my Crohn’s dx and tried remicade which I had a reaction from, 6-mp and maintained with medications for diarrhea and nausea for several years until June of 2020 when the found another fistula and in doing this they discovered stage 2 rectal cancer and had to remove the rectum. During an MRCP they discovered my biliary duct (intraheptic and extra bile duct dilation to the level of the ampulla) nothing was obstructing it. I was dilated to 2mm at this point in time. They watched it, 4mm, 8mm, 12mm, 14mm then last year I had a spinal cord stimulator implanted that I developed bacterial meningitis and had emergency surgery to have it remove and had 5 weeks of vanco and another one IV. After the infection my liver enzymes spiked. (Let it be noted I was diagnosed with NAFLD previously) my GI ordered a MRI and noted “PSC” on the paperwork. After the MRI she sent me a message stating I had PBC that my immunoglobulin M was positive, ANA positive, C-reactive, C-reactive high sensitivity, positive, alkaline phosphate, ALT, AST elevated. Bilirubin fine.
When I went to see her she backtracked on everything, basically said you don’t have either. Your use of pain meds for your Crohn’s dx off and on is your problem. I haven’t taken a pain pill in 2 years, mind you. She suggested a endoscopy to get an accurate measurement because everyone measures differently according to depending on the radiologist.
I am at a teaching hospital in Salt Lake City, Utah. I would like to have a second opinion at either IHC in Murray, Utah or Mayo Clinic in Phoenix, AZ. However, my insurance is Medicare and because I am disabled I don’t know how I’d pay for what Medicare doesn’t cover at Mayo Clinic. Mayo Clinic is where I was originally diagnosed with my Crohn’s dx. My family all lives there.
If anyone has any suggestions I’m all ears. Thanks so much for taking the time to read my story.
Sounds like if anyone has ever been through the ringer, you have . That is a long road with some major health issues you have faced.
You do not indicate if you are seeing a hepatologist or a GI doc. I would highly recommend you go to a hepatologist, as they are liver specialists. GI are generalists.
PSC can sometimes be difficult to diagnose. The gold standard is an ERCP, an invasive procedure that images the liver up close and personal.
So get to a hep doctor and request an ERCP.
I do not know about how to go about getting second opinions at the hospitals you mentioned, let alone about Medicare. If they have a number for you to call, I would call them.
Jeff
Thanks for responding, Jeff. Very much appreciated.
I found my way through the medical system and found a very good hematologist/Gi at IHC (Utah) whom after a MRCP, Colonoscopy, endoscopy, CT we discovered that yes, it is PSC. In addition to the biliary duct(s) dilated to 14mm the pancreatic duct is 4mm and my liver enzymes have fluctuated since 2018. He said he could do the ERCP but i recently just got over pancreatitis and I guess it can bother the pancreas? All information, In his opinion, points this way. For now monitor and colonoscopy every year and bloodwork every 3 months.
I thought I would feel relieved that the “mystery” was solved like I did when the Crohn’s was diagnosed yet I feel so sad. I am in a liver group already that is incredible with 4 of us with different diagnosis. I have a chronic illness group I attend, as well. Nothing prepares you for what the future holds. What if any advice could you give a 48 year old advice to take care of their liver proactively? Thanks again for responding. I very much appreciate you.
Lasardo,
With the “official” diagnosis, at least you now know what you have; you’re not dealing with an unknown.
Your doc was right to be concerned with you just getting over pancreatitis. ERCP’s can sometimes cause pancreatitis.
Know that PSC will test your sense of humor, your flexibility and your stamina. The mental aspect in dealing with PSC is just as important as the physical part. Several things helped me with them mental part. I learned with a previous fight with UC that any day you’re not in a hospital is a damn good day.
I learned to focus on the long term, knowing I still had to get through the daily stuff, but thinking long term helped get me through the daily stuff. Listen to your body and do what it tells you to do. Being an (ex) runner and having gone through UC, I became very sensitive to what my body told me. That will pay dividends if you can do that.
The bloodwork every three months sounds reasonable. Did the doc tell you what your MELD score is?
As far as being proactive, just eat healthy, do not drink alcohol, don’t smoke, keep hydrated, avoid fried foods, exercise- strengthen your abs/abdomen/core muscles.
Do your best to live your life the way you want.
Jeff
Great advice and you’re right… any day spent out of the hospital IS a good day. Having Crohn’s dx I can relate. I’m trying to stay positive. I find I’m incredibly tired and my hair is falling out but trying to have a sense of humor about it all…
no, nothing on the score just yet. I see him oct 17th so maybe then he can tell me. I’m sure the ERCP a will be scheduled at that appointment, as well.
thank you, jeff, for responding. I appreciate you very much doing so.
Leslie
Lasardo,
You’re very welcome.
I hope you get good news on the 17th.
Keep in touch.
Jeff