The battle

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Permalink Reply by sonsonly on September 6, 2011 at 6:19pm

Have you had a ERCP or a MRCP.....they should be able to give you  an accurate diagnosis with those tests.

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Permalink Reply by Pat Buchta on September 7, 2011 at 5:16pm

Hi,

 

I've had a similar story... my most definitive diagnosis has been PSC(2001), but they're also wondering in it's SSC, caused by a procedure that was done in 1996. I can tell you this: Don't stress! Just get educated and work on diet and manage your symptoms as best as you can. Stress takes a huge toll on the liver, if your docs had not already told you, so try not to worry and know that you can work on this.

I don't itch, I've had some fatigue and major edema very recently, but I've found that through diet and acupuncture I've been able to manage a lot of this. An acupuncturist can also recommend/prescribe some herbs that will be beneficial... best to go to a pro for this kind of stuff, as there are many unregulated herbs on the market.

Go for high protein, low sodium, low fat foods. Meats, Fish and veggies basically. And, if you haven't already, cut out the drinking entirely. It's the number one thing that will spike those bilirubin levels again and rot that liver out. I lead a very social life, but I've had to switch to club soda and lime to get me over the hump when I'm out in a bar with friends. Hope this helps!

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Permalink Reply by idahogrose on September 14, 2011 at 10:44am

I had the MRCP about a month ago.  Results were consistent with PSC.  30% strictures of the Common Duct.  Doctor wanted to schedule me for an ERCP, but I didn't know what it was, just found out quickly that it kind of invasive, asked the nurse what it was for, and declined when she couldn't answer.  Talked to the doc directly and he explained it better.  They are hoping to clear some of that stricture with the ERCP, maybe even put in a stint.  If I am at 30% now, how fast do things normally progress?  Should I be concerned now?  Is 30% that big of a deal?

I don't drink, smoke, use tobacco or other drugs.  I live a pretty clean/healthy lifestyle.  I have not really found any major problems with most of the stuff I eat on a regular basis.  Sounds like more of an atkins type diet with cutting out carbs works well for some people?  I usually have some sort of cereal for breakfast and a sandwich for lunch.  Otherwise I am there already, eating eggs, yogurt, and salad for dinner.  I also enjoy a lot of fruit. 

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Permalink Reply by idahogrose on September 14, 2011 at 10:48am

x

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Permalink Reply by Mona on December 17, 2011 at 12:59am

Diet is your best defense. Watching what we put in our mouths and paying attention to how it makes us feel.

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Permalink Reply by MassPSC on February 13, 2012 at 7:48pm

Honestly, if you haven't seen a liver specialist at a large teaching hospital, that is the thing to do.  PSC is rare enough that many professionals just don't have much exposure to it.  I received incredible care from my local gastroenterologist (in a moderately-sized city medical center) up until the PSC started to progress more, and now see a liver specialist at Beth Israel Deaconess Medical Center in Boston, MA.  The doctors are amazingly knowledgable and there is both a designated Liver Center within the Division of Gastroenterology and a world class liver transplant team.  All of the doctors are also faculty at Harvard Medical School.

So, my advice is to get a referral to whatever large university medical school hospital is closest to you and see someone there.  I live about 100 miles from Boston, which is not close but also not too far, but it is definitely worth the medical care that I am receiving.

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Permalink Reply by Zedition on February 14, 2012 at 10:35am

I'll give you more than three years.  I was diagnosed in 1991, immediately put on the transplant list, hospitalized for 4 months, lost 30 pounds (left the hospital 143, at 6'3") , perc'd, stented and ultimately they never transplanted.  My LFT's returned to normal and while my MELD score whipsaw from 3 to 14 from test to test, 20 years later I'm still using the same liver and not even close to transplant.

There are no supplements that will "help".  There are several that may lower your ultimate risk of cancer.  What you need to do is find solid privately funded healthcare and a good hepatologist (liver doctor).

PSC is complicated.  There is some research that indicates at least 3 and probably 4 different causes or types of the disease.  It's believed to be genetic but with an environmental trigger, whether that trigger is retroviral, chemical, diet - nobody knows.   Your risks are cancer and transplant.  The risk of cancer every year you have PSC is between 1 in 200 and 1 in 30 depending on which research center you ask.  Cancer caused by PSC is almost impossible to treat, less than 1 in 10 live more than 5 years (which is better than 10 years ago when it was 0 in 10).  You also don't "go on a list" for livers, not in the USA at least.  You have a MELD score based on your blood work.  Once that score is bad enough or you are showing serious complications like hepatic coma, they put your name on the list.  3 to 12 months later, if you've lived that long, somebody who is a genetic match for you has an unfortunate accident and you get a liver.  Live-transplants are rising in popularity, but are very, very dangerous for the donor compared to all other kinds of live tissue transplants.  I'd never ask my own children for a lobe.

Ok, so what can you do?  1) DO NOT DRINK.  Drinking at least doubles your cancer risk.  2) Keep fit.  5-year transplant survival is over 95% for a person in athletic shape.  It's less than 70% for a person who is obese.   Fit people also have marginally lower risk of bile duct cancer.   3) Lots of vitamin D & E from natural sources, mainly fresh water fish and sunlight.  May (may!) reduce your cancer risk.  4) Semi-annual or more frequently LFT (liver function tests) to watch for cancer or blockages.

Those are the basics.  Anything beyond that is getting into the realm of "We don't know for sure, but we think this might help".

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Permalink Reply by Mona on February 14, 2012 at 7:27pm

GEEZE

DOOM AND GLOOM!!!

It doesn't have to be that way and yes, there are supplements that help a lot!! I went from stage 3-4 to 0-1 in a recent biopsy! There is a lot we can do!!! Diet, supplements and detoxing have improved my condition.

Crohn's and PSC

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Permalink Reply by Pat Buchta on February 15, 2012 at 5:34pm

It't true... there's no reason not to stay positive and work on managing your disease. Don't worry or stress, as these can truly contribute to your overall health when we're talking about something as delicate as the liver.

I was diagnosed in 2001, and am just now getting to a point where the disease is progressing more rapidly. I now have a MELD of 23, and it may still be awhile before I get to a number that's eligible for transplant. I'm still working full time and just do my best to manage ascites and energy levels as best I can. Diet, exercise, and more than anything... a POSITIVE attitude can go a long way. I used to say that this disease would not define who I am, but it does, and now I know that I've been given a perspective with which to view the world that most people will never have. Make it count for something.

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Permalink Reply by Mona on February 16, 2012 at 2:04pm

I know this disease can be reversed. I'm not a doctor but I'm doing it. Of course I need help once in awhile...just had my first ERCP and feel better. I take ZERO, ZILCH, NADA / I don't take any prescription medication.

Find an alternative therapy place near you. Get some Vitamin C IV's [they add OTHER things to it]. Hopefully you get to a GOOD place that will give you a list of supplements to take. They can teach what to do and what NOT to do. Very helpful and doesn't have to be that expensive. I've just had to use the service about once a year. Other than that, I stay on track with my protocols. I'd gladly send my current spreadsheet if you send an email as it won't send through this sight.

Liver transplant is the WORST. It's not the transplant itself it's the drugs afterwards. The Immune System is MADE/GEARED/GOD TOLD IT TO...fight off things that should NOT be in the body [like a FOREIGN body part]. All those drugs given afterwards are to JUST ABOUT KILL YOU, depress the immune system...can give you cancer. A form of Chemotherapy.

Any doctor who DOES NOT ADMIT Chemo and Radiation CAUSE CANCER is not a doctor I want to go to because he is either a LIAR or GROSSLY UNINFORMED.

Definitely stay positive and work at it! It takes work. There is not a MAGIC pill or Liver.

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Permalink Reply by Ellie on February 18, 2012 at 9:35am

I have been living with PSC for 14 years, ERCP is the best bet for the doctors to diagnose PSC, also MRI to take a better look at your liver.   A low fat diet is “important” and NO alcohol. Also I eat dinner early at 5 to 5.30pm so that food has time to digest properly before I go to sleep this helps to prevent nausea & vomiting.  Cut fat off meat, avoid things like fish and chips, take the skin off chicken etc.  Weight watchers have excellent low fat recipes if you need ideas.  (They are really useful even if you are not needing to lose weight, and they sell recipe books).  Don't listen to Doctors when they say 10 years either it's rubbish, check out all the people on this sight LOL

!!!!!    I hope some of this helps.  Kindest wishes Ellie. 

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Permalink Reply by md_fisher on April 11, 2012 at 2:45am

Hi Mona, my 6 year old daughter is currently at stage 2-3, and when we asked about diet there was no information. I'd love to learn about what foods contributed to the awesome biopsy results you had (way to go!)

Mona said:

GEEZE

DOOM AND GLOOM!!!

It doesn't have to be that way and yes, there are supplements that help a lot!! I went from stage 3-4 to 0-1 in a recent biopsy! There is a lot we can do!!! Diet, supplements and detoxing have improved my condition.

Crohn's and PSC

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