Good evening, all.
Just got out of the hospital today after another round of cholangitis.
On Sunday evening, I noticed my temp was elevated and hit 100.4. With each reading, I took my blood pressure. There was one that was 96/61, but I did not take any action on that.
On Monday morning, as I was brushing my teeth, I felt an instant feeling of weakness and tiredness. My blood pressure was 89/59, so my wife took me to the ER at Piedmont Hospital.
The doc said that because I came in so quickly, the cholangitis did not go septic.
I had cholangitis get septic in Oct. 2023, Sept. 2023 and it tried again May 2024.
How frequently do you get cholangitis? Have you ever had a doc say that they might consider you to have chronic cholangitis? If so, what have they advised you to do?
Jeff,
I’m so sorry to hear about these episodes. It sounds very similar to what I went through the last 2 1/2 years although I have been able to stay out of the hospital now for almost a year. After two major transplant, revision surgeries, I still continued to have cholongitis episodes. They discovered that I was getting reflux from my G.I. tracked back up my Roux-n-Y into the bile ducts. I’m now on Cipro 500 mg twice a day and have been for over a year. In addition I requested to be put on Vancomycin I’m taking that every six hours at 250 mg. It really made a difference for me and I am doing so much better. I just had labs last week and this is the first time in over 2 1/2 years that my liver numbers especially my alkaline phosphotase Is normal.
Hope things will get better for you soon. I know it’s no fun being in the hospital. Wish you well, my friend.
So sorry to hear about your reoccurring cholingitis Jeff. You and Mark have been through a lot of experiences with this disease, which has helped so many others. I have only had one episode of cholingitis back when I was first diagnosed about 5 years ago. Fortunately my psc has been very slow progressing. Moderate UC seems to be more of my challenge lately, but tolerable.
Please know that we are praying for a healthier future for both of you, along with all these members …
Mark Rasch
I’ve had around 8 bouts of acute cholangitis since 2020. Symptoms are usually loss of appetite, then chills, elevated heart rate, and rapid onset of high fever (102+). I have had Cipro and Flagyl on hand and usually start a course of them as soon as the fever comes on. Those antibiotics almost always stop the fever within a day. I think in my case, the infections are associated with having a stent, and I usually get an ERCP to exchange it within a few days.
I’ve gone to the ER / inpatient for those fevers a couple of times… They give some pretty heavy duty IV antibiotics (Zosyn) and unfortunately, the last time I was admitted, I seem to have picked up a case of C. diff. That changes the whole antibiotic equation, but the silver lining is that vancomycin is the standard treatment.
Did they happen to check your iron levels? The reason I ask is that I had an inpatient stay last year, involving a really low BP like yours, and it seems to have been caused by iron deficiency anemia (likely from UC). A CBC test would show low hemoglobin and low red blood cells. I think an iron study or ferritin level would be useful in that case.
MBLand, 8 bouts of cholangitis since 2020 is way too much. That makes for a very long road to hoe. Have any gone septic?
My hemocrit and hemoglobin, with an exception here and there, have long been below normal. I have been taking iron supplements but it has been years since I have had an iron test.
I thought that since we have had a transplant that an ERCP could not be done to a transplanted liver? That is what I was told. Glad they can still do it for you. Did not know you still had a stent.
Immediately post tx, I was given a form to track my bp, pulse, temp, weight… and have continued to use it ever since. It helps track trends and can help bring attention to impending issues. That might help you as well. I can send it to you if you need.
Hi , at the beginning I was about 3 attacks p a . 48 hrs of bad pain then nothing just v dark pee and ghostly poo . After that followed jaundice then it all went . Bloods revealed v high lft . Once had 3d MRI showed 25% bile ducts in liver wiped out doc promised to see me for transplant in couple of years .
Then everything changed I could say because I started using proper butter not many made spread but can’t prove it .rest of diet ? Red meat,white meat, fish, veggie even alcohol - in moderation lol.
One thing that has changed I refuse to do stress at slightest hint I walk away my ringer on my phone is off . I live my life on my terms no one else’s.
Btw it all started early 2000’s my last attack maybe 10 years ago yet I have never ever had any meds whatsoever but it’s UK so heyho.
Good luck don’t stress or get depressed
You have a philosophy that a lot of us share-live our lives on our terms, no one else’s. I would add, as many are having a hard time doing so,-to the degree possible.
Glad you are doing so well for so long. Keep it up!
Jeff
