Re: Have Had Five ERCP's Now.../Diet questions/Rich

[Guest guest]

Rich,

I think your questions got a bit lost in the discussion of ERCPs, but

I'll respond re diet, exercise and supplements and hope to stimulate

discussion and addition to these points. I don't have the depth of

experience some others here do. PSC hasn't taken me to the depths.

1. Fish oil 4 x 500 mg/day. The omega 3 fatty acids inhibit

inflammation, and are good for your cardiovascular system too. DHA may

be more effective than EPA for the inflammation part, at least in one

animal study. For some, liver enzyme results improve noticeably, but

not for everyone. Some without a gall bladder can't tolerate it.

2. High dose Urso 25-30 mg/kg of body weight. As you may have noticed

there are differing opinions here regarding the effectiveness of Urso

in inhibiting PSC, but it reduces colon cancer, plus it thins the

bile. Some people can't tolerate it, but it's generally a safe drug,

given even in pregnancy.

3. Calcium and iron. As PSC advances, and with associated IBDs,

malabsorption is not uncommon, resulting in anemia and osteoporosis.

You seem to have this covered.

4. Exercise. Improves Calcium retention in the bones if you do impact

exercise. However, some with esophageal varices are warned against

strong exercise because it can cause bleeding, so get your Gastro's

approval.

5. Milk products affect my UC, which is very mild and only detectable

by colonoscopy. So I avoid them in the hope that it will postpone

consequences of PSC.

6. Balanced, healthy diet, to maintain weight in the normal range.

Your body does require some fat, make sure it is from healthier

sources, like olive, canola and fish. BTW, Partially Hydrogenated

vegetable oil contains trans fats. Producers are allowed to say no

trans fat if there is less than 0.5 grams, so watch for partially

hydrogenated oil in the ingredients list if you want to know the truth.

7. Supplements: Others should weigh in here. Some think Sam-e and milk

thistle help the liver.

8. Regular monitoring of liver function by MRCP to catch strictures

while they are still treatable. Consider reserving ERCP for

interventions such as dilation, stenting, and for bile duct brushings

to check for cancer.

Martha (MA)

UC, 1979, PSC 1992, asymptomatic. Urso, sulfasalazine, calcium, fish

oil, iron.

Not a frequent flier, but nevertheless a veteran of 5 ERCPs and one

PTC. If you are in New England and must have an ERCP, I highly

recommend Dr Doug Pleskow at Beth Israel-Deaconess Med center in

Boston, who used a new type of scope to view and open a resistant

stricture (the reason for 3 of the 5). He has a low rate of

complications.

> I am to the point in my disease, that the doctor is a little more

> concerned now. He's gonna really profess that I clean my diet up and

> do other things, like excercise in the gym and such? Do any of you

> have any pointers (advice) towards diet and excercise and if it can

> actually aid the disease in not progressing as quickly; I'm aware

> their are some, maybe I'm one, where the disease is rapid in

> deterorating? But I still think diet and excercise should help, as I

> used to excercise a lot, while eating excellent (no fats or sugars)!

> Much Peace,

> Rich

>