The first 5 years post-tx were great; a model recovery.
I had another cholangitis infection two weeks ago. This is the fifth one in three years.
The docs thought that the Roux-Y tube (the tube connecting the liver with the small intestine) was the culprit, possibly with some back flow coming back into the liver, causing the infection. With this hospital vacation, they did an ERCP. I had been told that an ERCP can’t be done post-TX, but they had a specialist who used a pediatric colonoscope.
The Roux-Y tube was in great shape, with no indication that it was a contributing factor.
With my follow up appointment on Thursday, the doc thinks I have afferent loop syndrome, where the Roux-Y tube somehow gets kinked. Only 1% of transplant recipients get this. Just my luck.
So evidently she will present my case at a multi-disciplinary conference in a week or two to get ideas on where to go from here.
Transplant 4 years ago, very rough course but mostly good 2 years out, however started having intense 48 hour fever episodes every couple months.
They stented a couple of times but were never sure there was a stricture. The last time the duct was definitely open, so we went with the same “backwash” explanation.
My episodes seem often to be after heavy fatty meals. Occasionally my alk phos goes up with them but usually just for a day or two.
Jeff, so sorry to hear of the infection recurrence again. That’s interesting, they did an ERCP instead of a wire/tube through your side directly into the bile ducts via interventional radiology. Are you on Vancomycin? What you are explaining sounds exactly what happened to me several years back when I was in and out of the hospital so much with reflux going up my Roux-N-Y and causing the infection. I’ve been on 250mg 4 times a day plus now down to 250 mg of Cipro once a day and it’s held now for over a year. We are in discussion with Infectious Disease at Duke to see about tapering down the Vanco and then maybe try going off the Cipro. I’m nervous and afraid I’ll end up back in the hospital, but all these antibiotics keep my stomach in a mess most days. Take care.
Found out today that my doc had discussed my case at a multi-disciplinary conference. They advised against surgery but recommended antibiotics-two weeks on, two weeks off to help ward off the antibiotic from losing its effectiveness. No idea yet which med it will be; she wanted to talk with their pharmacist.
I was so glad they did not recommend surgery, and I am not on vanco.
Jeff,
Yes, I pray you don’t have to have surgery. I can’t recall if I told you or not that when I was so sick a few years back I ended up having to have major surgery twice that year. Once in March and the second time in November. The first surgery they found a cyst pushing the duct close which was removed and the second time because of all the reflux with recurrent infections my surgeon decided to move my Roux-n-Y down further hoping that would help. Didn’t help so thus the long course of anitibiotics. I was thankful to celebrate 10 years post transplant this past July. Take care my friend. I really appreciate all you are doing to moderate this forum and welcome our new members. I might mention that one of our Ben’s Friends Interns Kevin is going to start reading posts on the PSC forum and familiarize himself. He won’t be moderating just yet but he’s a hopeful for more help in the future. Take care.
So sorry to hear that, Jeff. I have not had what you described. I’m 13.5 years since transplant. My challenge is the bile produced by my new liver causes diarrhea. I take Cholestyramine to absorb the extra bile. Sometimes, hard to manage.
Paul,
Good to hear from you again. I’ve had the same problem you are having and still battle with it from time to time. One thing that has helped me a lot, my hepatologist recommended Benafiber. So I put a teaspoon or two in my oatmeal every morning. It helps restore normal bowel function.
Sending all the best wishes to you!