Happy Friday everyone - I am Fascinating Bird and I just joined. Looking for support as my husband and I get used to his diagnosis & progression. My husband has PSC. Here is a bit of his story:
A diagnosis at age 19 of Ulcerative Colitis was the beginning - shortly thereafter his liver enzymes were elevated. At the time no one was concerned and life went on.
Fast forward to 2010 - our twins have just been born and he is having a UC flare - there was definitely no shortage of stress in our house! Off to the doc and blood work showed elevated LFTs - this time they flagged it - nearly 12 years later. A few more appointments, some meds to control the UC and one MRCP later we had a tentative diagnosis of PSC. Say what?? I go into "Google" mode and we both flip out a little. The first GI in Minnesota we saw about this was not thrilled with me asking questions - so he was quickly dismissed. This would be the first of several doctors to be dismissed - much to the (I am sure) embarrassment of my husband.
Since a move to NJ was imminent we proceed on with our plans, load up the family truckster with all 3 kids, and move to the smallest state with most amount of people. Come July - he is experiencing pain which he believes is stomach-related and eventually it gets so bad we head to the ER. Labs come back ugly - LFTs insane, pancreatic numbers off the chart. After a diagnosis of Pancreatitis he is admitted for a week.
This is really where things kick up. Multiple tests over multiple days - confirm the PSC, confirm the diagnosis of the Pancreatitis, confirm the need for new meds, etc. Discharge, new doctor, dismiss doctor, get new doctor. Start Urso.
Below is a timeline to where we are now:
1998 - Diagnosed with UC, Elevated LFTs (liver function tests)
January 2010 - UC Flare,
February 2010 - MRI with Contrast, Elevated LFTS, Colonoscopy Preliminary diagnosis of Primary Sclerosing Cholangitis,
July 2010 - UC Flare, Pancreatitis (5-day hospital stay), MRI Cholangiogram, Esophagogastroduodenoscopy with Biopsy, Colonoscopy, Ultrasound of abdomen, CT of abdomen, discharged with meds to try and control bile
December 2013 - UC Flare (ran out of meds)
January 2014 - Magnetic Resonance Cholangiopancreatography (MRCP), showed extensive system of strictures, no tumors, positive for cirrhosis
March 2014 - Colonoscopy (neg. biopsy)
April 2014 - Lab set 1 - drastically elevated LFTs from 2010, Lab set 2 (post-doc visit) - same result with slightly different counts.
The doctor suspects he may have an overlap disease - Autoimmune Hep. We are waiting (impatiently) for the doc to call us about the results. He wanted to see them again before deciding on a biopsy.
So that's our story!
Fascinating Bird