Right now, it's the stints that are holding my condition steady. I go in every three months to have my stint replaced in my primary left bile duct by ERCP. They put me under with some wonderful drugs, I wake up and go home. I've gone to having this pre-emptive procedure done, rather than waiting until the stint clogs and I get (really) sick, infected, hospitalized, etc. My goal is to stay out of the hospital for this year, last year I was in three times.
I operate the same way - when we don't stick to the 3 month schedule problems inevitably arise.
roseaya said:
Right now, it's the stints that are holding my condition steady. I go in every three months to have my stint replaced in my primary left bile duct by ERCP. They put me under with some wonderful drugs, I wake up and go home. I've gone to having this pre-emptive procedure done, rather than waiting until the stint clogs and I get (really) sick, infected, hospitalized, etc. My goal is to stay out of the hospital for this year, last year I was in three times.
Has anyone had the metal stent that is meant to last 6 mths? I believe it's 10mm wide vs 3mm like the plastic ones. Had it last summer, widest stent available. I obstructed after 4 1/2 mths, ended up in hospital, IV abx etc. O well. Back to the 3 mth stents. Last one packed up after 5 wks though. (The stent was fine, it was me that did the packing up.) Hoping I can hang in there till mid Sept with its replacement..
I've had probably over 30 stents and physicians are always reluctant about the metal - never have had. They don't like the fact that they can cause more problems than worth. so regular stenting and avoid hospital is what I have an agreement with gastro doc. Concern was a rejection factor basically. Cheers Deb
Didn't know about the risk of rejection. Sure won't be having it again having plugged one up too soon with thick bile.. and this while on ursodiol.
Alix are you aware of increased controversy of using ursodial in PSC patients in past couple years. My gastro/hepto did not want to put me on because research is showing it may actually increase PSC process instead of help. Coincidentally they are referring it more for PBC (primary biliary cirrhosis) because it seems to lessen symptoms. Google urso controversy or some such thing - you'll find online. I've had a period of gunk - usually one follows the other but after 2-3 x's better. You might also ask your endoscopist how they feel about stretching vs stenting. This research has been around since early 2000's. Progressive stretching has worked for me and allowed me to go longer - i.e. a month or 2 more. OK Alix go out and smile! cheers deb
Alix said:
Didn't know about the risk of rejection. Sure won't be having it again having plugged one up too soon with thick bile.. and this while on ursodiol.
Yup, am aware. That and the stretching are both items on my list of things to discuss with the docs at pre-transplant assessment next month.
I understood that it was only with hight dose Urso that there was a problem . I asked the doctors about it and they said that as I was on 500mg twice daily I was "in the beneficial range " . And am still taking it , should I bring this up again when I next go ?
I'd bring it up. I'm sure going to at next appt, will be doing some more research on it first. I'm on 750 mg (250 3x daily).
Ok. Will also do some reading up . And bring it up again when I go . Have to say think that the Livertone is doing me more good then the Urso ever has !!! Let me know what they say when you go , and I'll post what they tell me then we can compare !!!!!
Sassy - re Livertone. I googled it and only found LivaTone - which sounds by the description to be one and the same. But - it says the following: 'Should not be used by persons with acute gallbladder inflamation, bile duct
obstruction and intestinal blockage.' I'm not sure if they mean amidst an attack of bile duct obstruction- or the scarred (sclerosing) ducts of PSC in general. Any idea?
Livatone is recommended for people who do not have a chronic liver complaint . I got my info from the Healthy Liver And Bowel Book . Look up www.liverdoctor.com . The book is by Dr Sandra Cabot M.D . And she uses liver tonics and states she has had excellent results with PSC patents using Livatone Plus which has a very different formula to Livatone .
Hope this helps !