New - Introduction

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

Yes, we have one - he is hard to get a hold of and was not overly thrilled that I was asking questions - TOUGH. We have been waiting for 2 weeks for him to call us about my husband's results - when I was able to pick them up after just a few days. We will give him a few more days. He has had two blood draws in April - the doc wanted to see the second one before making a decision on biopsy. He suspects an overlap with AIH. The MELD score was low (I think 13) when I calculated it last week.

It is nice to meet you and thank you for your reply!

Fascinating Bird (Kerry)

Wow fascinating bird. That is a story for sure.

I am in the middle of trying to decide to go with the pouch or bag for my colon being removed (pre dysplasia) on Thursday. I am torn on the decision. Liver specialist says risk is high for pouchitis and I will be right back at square one in 5 years or so needing to get the bag anyhow. My psc is asymptomatic (spelling?) so he did say my liver is good to try it but pouchitis can certainly damage the liver (well it does) and hence worsen psc. I obviously don't want the permanent bag just yet at age 44. I have had psc and uc since 97. One of the nurses said once I get pouchitis and it doesn't go away with meds - I can fairly quickly get the bag and keep the damage to a minimum. No sense continuously trying to treat pouchits she said when you know your liver is being damaged. This way I can at least say I tried it. So I know my liver specialists is really pushing for the bag and the best long term health of my liver is to go the bag. I have seen a medical report/finding/study on the percentages of pouch with psc patients vs non psc patients. Odds are not great that I will be back again for another surgery but they are better than what I have been hearing (75%) within 5 years. So I was pleasantly surprised and it is pushing me towards pouch. Does anybody else want to share their experience with their decision on a pouch vs bag and how they are doing NOW if they went the pouch route? Pouchitis sounds nasty. Thanks for your time.

Fatigue is there and he was low on vitamin D…still no call from the doc… Next week will be 1 month. Crazy. Kerry

Stephen Cox said:

Hi Kerry,

I hope you are having a good day. Just wondering about your husband. How are his fatigue levels ? As you likely know, fatigue is a common side affect of PSC. It affects a great deal of patients.