Hi I have had 3 cholangitis attacks in the last 2 months. They have responded to Cipro, but the second had a flare up sending me for IV Antibiotics to the hospital. Any info out there about frequency and what to expect? I also have Crohn’s and no transplant.
I’m no expert, compared to others here. But in my experience there is no predicting when the attacks come on. For me I monitor my temperature pretty closely and anytime I feel bad and have a fever I start cipro on my own at home. Then when things get unmanageable I go to the ER for 3 or 4 days of IV antibiotics. For me this has been 3 times in the last year or so.
In terms of what to expect…I have no idea. I’d love to know too!!! Hopefully others will weigh in.
E
My first was in the winter of 2015. Next was August 2016, Then March 2017 and April 2017. There was some jaundice in between that responded to cipro, but the dates above were when I had ercp’s to unclog a blocked bile duct. Those stand out.
But three in two months shows the curse of psc, that symptoms can arise at anytime, and we have to be ready for the roller coaster ride.
Sorry you are having to deal with this.
My MD once told me that sometimes patients may require a longer course of antibiotics to clear the cholangitis attack. She has had patients who had to take antibiotics for a month or longer.
Best of luck to you!
Hi Old Codger,
Yes they are unpredictable and I have had two attacks while away from home. My hepatologist and I worked out a system. I always star with pain on right side then chills and fever. I have a standing prescription for Cipro and. bring it when I travel. If tenperature goes up to 102 F. I start Cipro and call doctor. Over 103 F I go to ER and will be admitted to hospital for antibiotics. Because PSC I bring a Mayo clinic print-out about PSC abd a letter frim my helatologist.
Thanks to all for info. I am going for ERCP Monday, March 19 to see if there are stones or sludge blocking bile duct. Last ERCP was in August 2015 to remove a second stent. Have been OK since then. Recent episodes are new for me and MD’s are trying to diagnose this.
Had the stent out on 3/19 but since then inflamation and occult blood tests, including a
calprotectin result of over 600, are leading me to start a regimen of Entyvio, a very expensive infusion drug. Will keep the group informed.
Yikes. I hope the new med works with you.
In England, recurring episodes of bacterial cholangitis are an indication for a transplant. Within four years I had four and one needed IV antibiotcs. I presume that they become more frequent as liver functions deteriorate.
Hi All, I feel for the attacks - my husbands first year he was in 5 times. Had ascites a bit a couple rounds, each time about a week hospital stay then infusion for a couple weeks longer. After all of that for last year (diagnosis rollercoaster) we were just really starting to lose our minds a bit. It was explained to us that the contract they use for the stint changes (he has one in at all times) can linger & cause infection/flair ups. It’s hard to say really if that’s it or if it’s just the body - probably a combination of both. I’m so happy to share that in 2018 he’s only been in 2 times. He’s not needed to go in after the last couple stint changes at all, no flair ups.
Here are couple anecdotal changes that I think don’t help nearly as much as the great care he’s receiving but seem to add to his body remaining with lower levels/not going in: He drinks a lot of water, we noticed when he went in for cholangiopathic events he was dehydrated. He began using garlic tablets after antibiotics course finished to help keep his body bacteria in check, lemon extract, drinking alkaline water, et cetera as well. I will say I think hydration is something we know can help, his hepitologist mentioned not drinking enough water can be stressful on organs. Not sure why we didn’t think about that before. Obviously the rest could be just wasting money with no useful effect but we’re going to continue this in case it’s working. His doctor confirmed the garlic and lemon wouldn’t hurt in his case so we figure why not give it a go.
Stress is a major contributor from what we have spoken to the doctor about as well, so he’s also tried to keep it at a minimum.
I’m cheering for all of you.
CER87,
Hi, and thanks for your post. Just a question. Is your husband under just the care of a GI or is he under the care of a hepatologist? I’m concerned that they are constantly using stents. They are certainly a breeding ground for infection. Have they tried the balloon dilation and not putting stents?
Mark
PSC 2011 / Liver Transplant 2015
Hi, He’s being cared for by the hepatologist/transplant team at johns Hopkins. We were hopeful that ballon dilation would help, his endoscopy guy is amazing - ultimately it didn’t do enough.