Vancomycin for Pouchitis and new PSC diagnosis

My doctor suspected a PSC and my blood levels of the liver are often increased, but so far I don't have a PSC diagnosis. Though MRCP showed some irregularities of the intrahepatic ducts.

I also had to take Vancomycin last year when I had a c.diff infection. I'm taking Cipro, Flagyl and Entocort for my chronic pouchitis. I'd like to keep Vancomycin effective in case of a further incident of c.diff.

I have UC and PSC (I haven't had any surgeries for my UC though). I've been on vancomycin for my PSC since January 2018. Honestly, it's the heathiest I've ever felt. There are a good amount of PSC patients who take vancomycin off-label and seem to do very well on the medication.

It might be worth chatting about with your doctor if you wanted to try taking vanco long-term. After all, it has been shown to stop or slow the progression of PSC.

If you do try vanco long-term, just be aware that brand and dose are extremely significant. Certain brands seem to be effective within the PSC community (ANI, Lupin, Firvanq) while others usually don't have any benefits (Akorn and Alvogen). Dose is pretty patient-specific, so it might require some trial and error to find the right dose for you. I take 500mg 3x/day.

On my website I created a PSC Hub where you can find a ton of info about vanco for PSC, including the scientific theories about why it might help stop PSC; tips to get a prescription from your doctor; research papers and explanatory videos; patient success stories; and much more.

If you'd like more info or have any questions, don't hesitate to email me! Vanco for PSC is something I'm very passionate about and I'm happy to help out in any way I can. Wishing you the best of luck.

@FreeAtLast posted:

Last month I was in the hospital for a few days to have some gall stones removed (appeared on an outpatient MRCP) and because I tested positive for c.diff.  I went to the ER because I was having uncontrollable diarrhea and I knew it was something more than just Pouchitis.  They gave me oral Vancomycin for the c.diff.  During the ERCP to remove the stones, the doctor noted that there was no evidence of PSC.  When I got out of the hospital, I kept on taking Vancomycin for a few days and noticed that my Pouchitis pretty much disappeared.  My stools had a weird smell and looked a little orangey, but I'll take it!

Five days ago, I went to the ER (and was admitted 9 hours later) because I was feeling super tired, was scratching my front and back like crazy, lacked an appetite and was jaundiced.  Elevated liver enzymes from blood work had them thinking it was stones again, so I had another ERCP and that's when they discovered NO STONES but PSC instead.  They cleaned my sclerosed bile ducts and I was placed on some IV fluids and some Hydroxyzine for the itching.  A smart PA there put me on Vancomycin as a precaution for c.diff and I noticed my Pouchitis symptoms improve to where there were no more loose or watery stools.  I just got out yesterday and will continue to take Vancomycin for my Pouchitis.  My new diagnosis of PSC has me a little rattled, but it looks like there are some ongoing trials for PSC treatments...one of which is Vancomycin (via the Mayo clinic): https://www.pscpartnersregistr...clinical-trials.html

Anyone else dealing with PSC?
Anyone else on prolonged use of Vancomycin for Pouchitis?

how has your PSC been since this post?

@SteveG posted:

My doctor suspected a PSC and my blood levels of the liver are often increased, but so far I don't have a PSC diagnosis. Though MRCP showed some irregularities of the intrahepatic ducts.

I also had to take Vancomycin last year when I had a c.diff infection. I'm taking Cipro, Flagyl and Entocort for my chronic pouchitis. I'd like to keep Vancomycin effective in case of a further incident of c.diff.

what were your irregularities of the intrahepatic ducts? a few years ago my ultrasound showed dilations of my intrahepatic ducts but no strictures. I saw a PSC specialist at Cleveland Clinic and he stated he does not feel thats PSC. He said it showed "mild" dilation and could have just been read wrong. liver labs have been great which led to his thinking of no PSC, its been over a year since i had liver labs but starting to get some right sided uncomfortableness off and on so i reached out to him and he put orders in for labs and another ultrasound next week. I am scared as hell its going to be PSC like i originally thought. But shortly after that i had gallbladder out as it was full of stones and said that could be reason for the dilations as well. Gallbladder surgeon did a cholangiogram while in there and said liver looked good and no issues with ducts.. i read cholelithiasis would present with dilations only as PSC is dilations and strictures.. so i dont know

@Pouchomarx: My intrahepatic ducts had some strictures, but not yet as prominent as typical for PSC. I hope this will not get worse. Liver labs returned to normal when I had a cortisone treatment some months ago, but now they are up again.

I think you don't have to worry about PSC from what your doctors said.