Tammy/Biopsy pain/long-term asymptomatic

[Guest guest]

Chad must have Abs of Steel! At least he's starting fit and will be

better able to deal with whatever PSC dishes out.

I had a biopsy together with an attempt (failed) to place external

drains in the bile ducts 18 mo ago, which involved about a dozen

passes with a smaller needle. I had pain for about 5 days afterward.

After about 3 days I called the doctor and he ordered a CT to check

for bleeding in the liver. There was a big hematoma (bruise) in the

liver. Sometimes it can be serious, so if the pain worsens or

persists, it can be telling you something important. Percocet

helped...knocked me out. The whole thing was premature, they thought I

had a dominant stricture but it didn't progress at all, and I still

felt fine. Last fall, my endoscopist was able to do ERCP with his new

" spy scope " which puts a camera up into the bile duct, so he can take

pictures and biopsies of the wall of the duct. With this better view

he was able to dilate the stricture as well as get biopsies, not only

brushings. This is a new system that I think only Mayo and Beth

Israel-Deaconess in Boston have.

Any problems I have had from PSC have been entirely due to physicians

messing around, not directly from the disease. I've been on URSO for

14.5 years, diagnosed 15 years ago. PSC has progressed, but I could

probably have avoided the stricture getting as bad as it was (it

blocked the left lobe's bile drainage and caused it to atrophy) by

keeping up with regular MRCPs. They can show major strictures earlier,

and allow the doctor to stent them by ERCP before there are symptoms.

Biopsy, as you have seen, shows only a small part of the liver. If you

biopsied my left lobe, you would see Stage 4, but the right lobe is

stage 1-2 fibrosis.

I highly recommend fish oil, particularly one high in DHA more than

EPA (I take Spectrum Essentials cod liver oil capsules, 4 x 500mg/day)

or Martek labs DHA, which is being used in a clinical trial in Boston.

High dose URSO is also what I have been on for the last 5 years

(30mg/kg/day instead of 15 mg/kg/day), and low dose for 10 years

before that. There are papers in the files section on the yahoo site

supporting this, but many doctors are still waiting for the

statistical evidence on it. The problem is that people are diagnosed

at all stages of PSC and it's a slow moving disease, so it's going to

take a long time to get the data, and meanwhile you won't be getting

the benefit of it. I don't consume any milk products because when I

do, my colon shows UC inflammation. My UC is very mild though, hasn't

bothered me in 25 years. Other than that I eat a healthy diet. I don't

exercise as much as I should, and I have osteopenia and take calcium.

If I had the secret to staying asymptomatic with PSC I wouldn't keep

it a secret, but I'm afraid it's just part of the range of this

disease. But regular monitoring and stenting if needed can keep bile

duct strictures from getting out of hand. A blocked duct causes

atrophy of the region it drains. Good luck,

Martha (MA)

44 (yesterday!) UC 1979, PSC 1992, asymptomatic

he had his liver biopsy today. poor guy. he was in a lot of pain.

they had to cut through his abdnominal muscle to get up to his liver.

took 2 tries, but they got a little sample. I'll be back on here

asking your opinion of his results when they get in. any suggestions

on the pain?

> Thanks!

> Tammy (wife of Chad)

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