My Journey

Hello All,

I am a 32 year old woman, lving with PSC and Chron’s Disease. I was diagnosed in 2006 and since then my health has been a bit of a roller coaster ride! I will do ok for a while and then BAM I will flare up and 9 times out of 10 end up in the hospital for a few weeks. Most of my issues up to this point have been Chron’s related, I’ve had a fistula, C-Diff,numerous bacteria infections and just the typical Chron’s flare ups. Most recently I had a very scary episode, that started out as really bad stomach cramping that woke me out of my sleep one night. It was a different pain, not typical cramping. It moved when I moved, I couldn’t walk and I was suddenly running a really high fever 103! I went to the hospital of course at the time I had a PIC line for TPN treatment I had been on for about 8 months. They ruled out infection in my PIC line and noticed fluid around my left ovarie and fibroids. They said there was a simple fix, they would drain the fluid and had started me on several IV antibiotics. The procedure was scheduled for 2 days away, but by my second day in the hospital the fever would not come down, I felt like I was melting in my skin! But the doctors continued as planned. I went to sleep that night and woke up 3 days later in ICU. I was intubated, confused and in pain. I had gone into full sepsis shock, my organs had started to fail. Long story short they removed my left Fallopian tube and ovarie, the strain had caused damage to my heart. The believed my Chron’s had caused everything. Since then I have been doing better until about 2 months ago, my normal irritating itching went from bad to unbearable and I was extremely fatigued all the time with yellowing in my eyes. My blood work showed significant increase in my liver enzymes, so I had a liver biopsy done. The results showed chronic inflammation, fibrossing and something about mechanical damage. I have had a stent place in once to open back up the main bile duct and had about 2 episodes over the years where they treated me with antibiotics for blockage in the ducts, but other than that the PSC appeared to be moving slowly.

I am extremely scared at this point, I am watching and feeling my body break down and the doctors say there is nothing else treatment wise we can do right now. I am wondering what others are experiencing in terms of treatment, has anything been successful? How often should biopsies be done? This was only my second one since being diagnosed in 06’. Is there a clear way to find out the “stage” of your disease? What does everyone do to help with the itching? It is driving my crazy and my skin has become rough and damaged from the years of scratching. Is there anything I can do to help with the fatigue? On some days I am dosing off uncontrollably even though I have had ample sleep the night before.

I apologize for the long story! But this has been my journey so far and right now I am looking for advice, answers and just to hear from others that are going through the same things, on how they are managing everything. I have only met one other person in person with PSC and I’ve noticed majority are men and it seems that it is even more rare in the African American community. Thanks for any feedback and for taking the time to read my story.

What a roller coaster ride. Chons is bad enough but to have psc,too? Some people who post here have colitis and psc.

so you're in good company.

I have read a gender breakdown with psc are 2/3's men, 1//3 women, but I don't think I have seen one based on race. Anyone seen a breakdown by race?

Fatigue is an issue I deal with too, I get pretty tired in mid-afternoon, and about two to three times a week, I sleep for an hour when I get home. And have been known to take three naps on Saturday AND Sunday. But I have read on this site that even with the extra naps, we generally don't feel more refreshed/energized.

Quite a few people on this site can recommend several medications for the itching. There are quite a few threads that deal with that.

Sorry you have this fight.

Jeff

I'm sorry you've had to put up with all this--it sounds like you've had a really rough ride on this roller coaster.

Remember the oral Vanco you took to treat the C-diff? There are a number of prior and ongoing studies into the use of it long term as a treatment for PSC, UC, and in at least one case Crohn's disease. It doesn't appear to work for everyone, but it works to normalize LFTs, eliminate symptoms, and roll back the damage for a number of patients.

From my experience, biopsies generally have little utility with PSC. They can be used to figure out the stage of PSC but staging really isn't all that important due to the unpredictable nature in which it progresses. Even when getting near transplant, doctors are concerned with blood test numbers and symptoms rather than the stage of the disease.

For itching there is Atarax, Cholestyramine, and Rifampin. There are pros and cons to each and it can be hit or miss as to whether they will work.

I believe PSC occurs in higher rates in Caucasian and Asian populations with the Scandinavian countries and Japan documenting the highest rate of cases.

Thanks everyone for the feedback, I’m sorry that any of us are having to deal with this disease but it helps to be able to talk to someone who can understand what you are going through.
JeffDC- your exactly right,even though I try to get extra sleep by napping or going to bed earlier and even with the added hours, I don’t wake up feeling refreshed and recharged! It’s so frustrating!

jtb- I do recall the vanco(I actually had to drink the IV form :-)) I think I recall seeing an article a while back that mentioned using vanco as a treatment. I will have to do some more research on that. I just started the Cholestyramine again for the second time. I was on it for about a year before to help with itching but I didn’t have any improvement so the Dr. took me off. This time I am taking it for other reasons but I am really hoping I get a bonus and it helps even a tiny bit with relieving the itching.
Stephen- right now I am seeing a GI and she has been consulting with the hepatologist that works in the same medical center. I used to see a hepatologist as well but I changed doctors and she has been following both diseases for me. Now that things seem to be progressing I plan to ask her about referring me to one. It works easier in my opinion if both doctors are in the same center, it’s easier for them to communicate that way everyone is on the same page regarding your care.

I have a great support system in my family, I wouldn’t have gotten through half of this without them. I’m working on improving my diet, not that I eat very unhealthy now. I don’t do much meat especially red meat and I stay away from the fried fatty foods but there are other things I can do that I want to work on.

Thanks :slight_smile:


JeffDC said:

What a roller coaster ride. Chons is bad enough but to have psc,too? Some people who post here have colitis and psc.

so you’re in good company.

I have read a gender breakdown with psc are 2/3’s men, 1//3 women, but I don’t think I have seen one based on race. Anyone seen a breakdown by race?

Fatigue is an issue I deal with too, I get pretty tired in mid-afternoon, and about two to three times a week, I sleep for an hour when I get home. And have been known to take three naps on Saturday AND Sunday. But I have read on this site that even with the extra naps, we generally don’t feel more refreshed/energized.

Quite a few people on this site can recommend several medications for the itching. There are quite a few threads that deal with that.

Sorry you have this fight.

Jeff