The battle

Hey Everyone! About 7 years ago I went partying with some friends and woke up the next morning jaundiced. Because of lapses in healthcare coverage, I was not able to see a doctor for a couple of months. Blood tests, a biopsy, etc tests were completed. I was diagnosed in late 2004 with what my doctor described as "most similar to" Auto-immune Hepatitis. He started me on prednisone to bring my enzymes down, and for the most part it worked. After 7 years, several lapses in healthcare coverage, and 5 doctors later, I think I may be getting the help I need, though my doctor doesn't seem to think there is much going on. Along the way, one of the doctors did get me off prednisone and put me on azithioprene and ursodiol. Then 4 months ago, my new doctor took me off all medications to "see what will happen". I have since been forwarded off to a new doctor because "my case is so unique" (doctor speak for I don't know what the heck is wrong with you).

My most recent biopsy results said the slides looked most like primary sclerosing cholangitis, so that is why I am here. I need help, and I am tired of doctor's "practicing" medicine on me. Is there anything I can eat that will help quiet this thing down? Any herbal supplements that can help? Or do I just need to get on a transplant list? From what I read today, I am more scared than I have been. 10 years before I have to have a transplant? Does that mean I have 3 years left? (this started in 2004) Other than the jaundice at the beginning and now abnormally high enzymes, I have had no similar symptoms. I don't itch, no fatigue, etc. Not sure what else I can do. Diet is the most direct thing I can control. Thanks for any help/suggestions.

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

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!

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.


x

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

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.

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".

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

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.

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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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.

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

Email me offline: ■■■■■■■■■■■■■■■■■■■■■■■

Introduce yourself so I don't discard and trust.

Mona

Hi Mona,

I saw you mentioned you did a detox? What exactly did you do for that?

Mona said:

Email me offline: ■■■■■■■■■■■■■■■■■■■■■■■

Introduce yourself so I don’t discard and trust.

Mona

Email me offline. I will tell you what I do. I am not a doctor and we are not all alike. However, there are many things you can do. My doctors are all on-board and love my natural nature. There are also people on here that LOVE to criticize things that are NOT pharmaceutical.

See my email above.

Mona

Hi Ben -

The name is Deb Petersen. First of all you are not allowing comments on your other discussions unless people are friends. That is why nobody has commented on your Dr.s visit. Not that we don't like you ; }.

Ben I'd say the most realistic post on this discussion is Zedition's. I also have a long history but have not been so fortunate as Zedition. I was diagnosed in 1993. I was in Bellingham Wa at the time and used Virginia Mason and Univ of Wash at the time. Prior to that I had Ulcer. Colitis @ 16 y.o. and colon removed at Mayo Clinic in 1984 @ 22 years and had one of the first J pouches in country. Best alternative. Excellant mkeds for UC today unlike in '84. But that was a life saver for me.

Then along came the PSC in '93. My 1st experience was like Zedition's. Jaundiced, itchy, elevated enzymes. After the bile ducts were opened and stented all symptoms reversed. My PSC was moderately aggressive so I had 17 ERCP's on and off until 2000. I moved to Colorado believing I was cured. My opinion then was like Mona's. I spent 1000's of dollars and I mean 1000's. $4 grand in 1998 and $5000 in 1999 in attempts to heal disease. Psychics, rolfing, wheatgrass juicing, many different diets, personal meditation, journaling, acupuncture, naturopathy, kinesiologist, therapist, a man trained by aborginies in Australia, rebirthing, past life regression, Reiki, massage, cranial-sacral therapy, visceral manipulation, reducing work hours, a 11 day stay @ Edgar Cayce (a psychic) Healing Institute in Phoenix where I did play therapy, dance therapy, diets, therapy, stress therapy w/ things such as biotherapy for relaxation, I was not

Dang it didn't save continuation -

I was not healed. In fact I was growing a tumor in liver - bile duct cancer or cholangiocarcinoma. I had moved to Denver. I had a racquetball sized tumor removed from left lobe liver in '05, transplant (controversial) in '06, return of PSC in '09, remove 1 cm tumor in '10, retired/disability '11.

Now I work on bucket list and finding/keeping inner peace and joy. I don't worry as much about disease. I just live as much in present moment as possible and be true to self.

I will have another transplant someday maybe (again controversial becasue of cancer). Que sara!

By the way the awful drugs Mona discusses so frequently - they do serve a purpose. Keep your transplant or return to ill health again AND not be allowed a second chance because you were not compliant. We are not talking about a walk in the park here. There are 100,000 people waiting for a transplant at the Univ of Colo alone. 100,000 people so relieved to finally feel better, to be able to travel, smile, go back to work because of the transplant and drugs.

I was a person who did not like to take drugs at all. I strived to get off them quickly. I still do that but I recognize also that if I need them I've going to take them.

Now I tell my physicians - I am not worried about the length of my life, rather I want to be able to live whatever is left with good quality and not be lying in bed. Do what is necessary to help me live that way.

Cheers! Great Dane Deb

Posted in my blog:

Friday, 2-8-13, I had another doctor's appointment. I had a colonoscopy last March, and I am now diagnosed with PSC and Ulcerative Colitis. The doc prescribed Mesalamine (Lialda) at 1.2 gmX2/day, or 2.4 gm/day. Either way one of the drug side effects is liver failure and to not take if you have liver problems as it is a salisylic acid (asprin) based medication. My doctor is Dr. Gilroy at University of Kansas Liver Center in KC, KS.

Curious if anyone has had experience with this medication and what their side effects were. Of course everyone is different,…

Doc also said that the UC is the biggest problem now and making sure I don't get colon cancer. I think he was trying to prepare me for the worst. I have changed my diet considerably from when I was diagnosed and have dropped about 30 pounds. I eat a lot of veggies, fruits, and meats, and usually stay away from high carb foods and definitely stay away from very processed foods (usually!).

I'm WITH greatdane

We DO HAVE TO TAKE THE MEDS. You have to comply with every little thing IF THERE IS A TRANSPLANT. You have to depress your system. Your body is geared to attack foreign things. You can't take vitamins, etc. I hope to skirt the transplant avenue is all. I do hear people say they are back to normal. I have also followed people through the TRANSPLANT process. There are percentages for surviving and there are percentages for having to redo the transplant. I just want to take all the chances I can with MY LIVER.

My doctors don't agree with my avenues but they also say they can't argue success and to keep doing what I am doing. It is not for everyone. It does take work. I have to avoid things I love and take things I hate.

Stay well all of you. Usually our disease is happier in warmer weather. Look forward to Spring and Summer.

Mona

greatdane61 said:

Dang it didn't save continuation -

I was not healed. In fact I was growing a tumor in liver - bile duct cancer or cholangiocarcinoma. I had moved to Denver. I had a racquetball sized tumor removed from left lobe liver in '05, transplant (controversial) in '06, return of PSC in '09, remove 1 cm tumor in '10, retired/disability '11.

Now I work on bucket list and finding/keeping inner peace and joy. I don't worry as much about disease. I just live as much in present moment as possible and be true to self.

I will have another transplant someday maybe (again controversial becasue of cancer). Que sara!

By the way the awful drugs Mona discusses so frequently - they do serve a purpose. Keep your transplant or return to ill health again AND not be allowed a second chance because you were not compliant. We are not talking about a walk in the park here. There are 100,000 people waiting for a transplant at the Univ of Colo alone. 100,000 people so relieved to finally feel better, to be able to travel, smile, go back to work because of the transplant and drugs.

I was a person who did not like to take drugs at all. I strived to get off them quickly. I still do that but I recognize also that if I need them I've going to take them.

Now I tell my physicians - I am not worried about the length of my life, rather I want to be able to live whatever is left with good quality and not be lying in bed. Do what is necessary to help me live that way.

Cheers! Great Dane Deb