Hello!
I was recently diagnosed with PSC during a routine MRI. I have Jpouch because my colon was removed in 98 due to UC. Now I have Crohn’s.
In the last 5-8 years I have had a strange thing happen, and it happens every time I eat an oily fish, and once when I ate an oily pasta. It has happened with salmon, with black cod, and another one I can’t remember. I have a Jpouch, so I am very aware of my bowel moments, as Im sure you are, if you have an ostomy or a Jpouch. A few hours later, after I had digested the oily food, and up to the next day, I saw waxy green small balls when I pooped, like the size of green peas and a bit larger. Each time I saw around 8-15 little “balls”. They felt just like hard wax when I squeeze them inside toilet paper, and are not water soluble. The last time I ended up in the hospital with a “mystery” fever I had eaten very oily Cod the night before, and I remember seeing the waxy poop too.
As I have studied about bile ducts, I might be seeing a connection between bile, fat, compromised bile ducts, me having a Jpouch so my plumbing is different, etc. Has anyone else experienced this?? Could there be a connection? Was this a sign that I was getting PSC, even before they saw it in the MRI? For years now I’ve been getting these “mystery” fevers which I always thought was related to Crohns, but maybe they were always related to PSC.
I’d love to hear from anyone with PSC and a Jpouch. Thanks! Carolina
Hi Mathis,
Perhaps I did, but I guess there’s no way to tell now. I got the Jpouch back in 1995 at the Mayo Clinic and it was “assured” to my parents back then that it was UC. Only in 2006 a doctor mentioned that it was probably “indeterminate colitis”, and then they said it’s Crohns because I developed fistulas. I try not to stick to the actual dx too much, especially since I have no Crohns symptoms other than 2 fistulas I got back in 2001.
Hello, Carolina.
Fellow jpoucher here (UC). There is a strong connection with bile and our poop, pouch or no pouch. As my psc worsened, the poop had a habit of turning chalky/grayish. There were times I got those little balls as well but I could not attribute them to anything I ate.
PSC does cause fever when the bile gets blocked by a clogged or deteriorating bile duct and the body tries to fight off the ensuing infection called cholangitis. It is usually accompanied by jaundice.
I usually get that greenish poo a few times a year, even before being diagnosed with PSC.
I know exactly what you are saying!!! Even had to take a picture. I did the exact same experiment. Could not believe my eyes when I saw that for the first time!!! I explained it as plasticine blobs together. Hard. I told him it was a clean poop. Trying my best to describe it. I will share yours. I have PBC with PSC overlap.
Carolina