Trying to stay positive whilst being really scared!

Hi Everyone

Firstly, can I just say how fortunate I feel to have found this group who are all at various stages of trying to cope or deal with this bloody disease that until a month ago, I had never even heard of...

I am Erin, a very recently (May 2014) diagnosed 41 year old married mum of one who until April this year was cruising along, living a healthy life doing all sorts of things, and then one night was admitted to hospital with excruciating upper epigastric pain... quite a few tests later & massively deranged LFT's, & now I have a disease that people mostly don't understand & that I certainly don't want.... anyway, my choices in this situation have been removed & now I have to get on with it whilst being really scared & uncertain what the future holds...

I am under the care of a very good Doctor from a major hospital in Melbourne, who is arranging a Colonoscopy for me soon to check for IBD, and he has put me on Ursofalk (which has given me massive reflux, so now I'm also on Esomeprazole (Nexium)) and I'm also copping a massive amount of muscle aches & pains, mostly in my legs, which I believe is also a side effect of Urso, might just have to deal with that ... Am unfortunately still suffering a constant dull ache in my liver, which I believe might just be the PSC inflammation... Does anyone else have that constant pain there??

I am trying my hardest to get my life back under MY control, so in the next couple of weeks I am resuming reduced hours at work (will let you know how that goes), as well as being referred to a Pain Management and am being referred to a Counselor so that I can hopefully regain my positive outlook whilst living with this disease.... Interested to hear of anyone who has tried Accupuncture or Naturopathy, whilst obviously being super careful of what is ingested...

Wishing all of you all the strength & courage in the world in your battles... And looking forward to hearing back from you...

Cheers - Erin :)

I was also diagnosed in May and have been struggling to adjust to this PSC thing. I was extremely scared too but received some very good support here. You have come to a really good site. I have found everyone is very helpful and as well as respectful here! I am so glad I found this site too. Hope your reduced hours works for you and you are able to resume the business of living. I haven't tried Accupuncture or Naturopathy and would be interested in knowing how that goes for you if you decide to try one or both of those routes.

Hi Erin,

My son was diagnosed with PSC 2 years ago at the Children's Hospital in Melbourne. He was 12 at the time and had a bad tummy ache in the same area you describe above just below the chest. They said they get 15 cases a year. Blood tests did not find any bugs to cause the pain but the LFTs were high so then it was excluding glandular fever and other things that could cause the high LFTs. Then our GP sent us to the Children's hospital because he did not know what was wrong. It took 3 visits to the ER and they would not send down the specialist until the final visit when I told them I would not take him home until they hydrated him because he hadn't eaten or drunk anything for days. Once we were admitted it was over a week before we had a diagnosis and I cried too. He got back to normal a few months later and then developed ulcerative colitis. I can deal with the UC because my husband was diagnosed with UC at 33 and he has that under control with meds and avoiding chicken. There is a part of me that still don't believe he has PSC because he does not have any of the symptoms. He takes Urso for the PSC and Imuran and Pentasa for the UC. But he does not have any liver damage, or fatigue, itching or any of the other symptoms I read about. I have told his hepatologist that maybe he just caught a bug that was not detected in the blood tests and that caused the infection in the bile ducts rather than PSC but she insists the chances of me being right are one in a million. He takes his meds every day and we see the doctor regularly and apart from that we just lead a normal life. Time makes you forget most days. But there are still days you just cry even two years later. You will never be the same person again that is for certain. Hopefully when your body returns to normal and you have things under control with the meds things will just go smoothly and you will mostly forget too. The hardest thing is that I feel so alone. Everyone sees our son looks healthy and strong and they think everything is back to normal so I have no-one to talk to about my pain. At the back of my mind I know things can change just as quickly as he got sick in the first place, but worrying will not change anything. We have not added changed anything other than his diet (avoid chicken as that has been the trigger in all our cases) but we have always visited the chiropractor once a month to keep our bodies working well. Hope this helps.

Hello, I too was just diagnosed in May. I think about this disease every minute of every day, it scares the hell out of me! You are lucky in that you already have doctors addressing your issues. I was told by my GI that I have it but must wait for my appointment with the liver specialist next month to address it. It is very frustrating. I have a stent placed in my bile duct, which I get removed on Wednesday, and constantly have the upper right abdominal pain. Anytime I eat I am in severe pain. My biggest worry is that I have a young child. I am exhausted and feel so guilty that I cannot do much with her, never mind that I am probably going to get sicker as time goes on. I have been having symptoms for years but no one would address them. You are not alone in your fears, this group gives me hope that we can still lead productive lives with PSC! It is very nice to meet you, sorry for the circumstances.

Hi Erin, let me begin by saying be strong and try to stay calm, it can only help. I can relate to how you feel, in 2010 I found myself in the same situation as you. I was a very healthy 54 year old until one evening I started getting excruciating pain in the upper right part of my stomach. Three months later after removal of my Gall Bladder, I suffered another painful attack, it was then that I was diagnosed with PSC. I know this is a very confusing and scary time for you, but you have to maintain a positive outlook for your health in treating this disease and for your own personal sanity. PSC is an unpredictable autoimmune disease damaging the bile ducts which eventually damages the liver. It progresses slowly in some and quite rapidly in others. Hope for the best, take your medications and do all the research you possibly can on this puzzling disease. Obtain information and become very proactive with your doctors, it's surprising at how little they actually know about the disease. There are herbs that can possibly be helpful and something as simple as a few cups of coffee a day...hmmm...Keep in touch...we care...Dave

Hi Everyone

Thanks for all of your replies, it's comforting to know that I'm not alone, also, very sad to realise that there are so many people out there who suffer from this disease..

I have decided I need to pick my chin up off the ground & get on with living life to the fullest, whilst I am still able to.. I have a fantastic, supportive husband, a beautiful almost 7 year old daughter, loving family & friends, and I need to enjoy my life with them and enjoy every second (apart from last week when I threw an enormous tantrum like a 3 year old & cried & cried for my old life, which didn't achieve anything and was extremely exhausting lol)... Anyway, we only get one life so I just need to get on with living it...

I am starting yoga again soon & will try accupuncture (without the herbs), will let you all know how that goes & try my best to maintain a positive healthy lifestyle, whilst enjoying my 2 cups of coffee per day... who would've thought that coffee was good for PSC?? God must have a strong sense of irony!?? lol..

Thankyou once again for your responses, wishing you all the very best in your journeys, take care & stay in touch..

Cheers - Erin :)

Hi Stephen

Thanks for your reply - I will admit that at first, I was certain I was doomed (especially after I broke my promise to myself not to Google search PSC which of course lead me to find all of the most terrifying info & statistics)... but I have since had good conversations with my Specialist (as well as hearing all of the stories shared on this site), so I am hopeful that I will be one of the lucky ones who has a slower moving form of PSC (and I will know a bit more too after the Colonoscopy which will be happening sometime in the very near future, hopefully there are no signs of IBD...)

I am trying to accept the pain in the RUQ as just something that is there, my specialist advised against an ERCP as he believes the risks of infection outweighed the possible benefits (as there are quite a few intra hepatic blockages apparently) - so for the meantime, its Urso for me, with all its fabulous side effects... anyway, I must also accept this disease (not that I particularly wanted it) and I am so grateful that at this early stage, I am mostly really well, a bit fatigued but determined to live life to it's fullest as long as I am able to & to get my positive outlook on life back whilst being mindful of the disease & all it's complications...Have also taken on board your diet advice Stephen from our earlier conversation, everything in our house is low fat, healthy & in smaller portions & although I infrequently enjoyed a drink previous to my diagnosis, I am certainly not going near it now...

Thanks once again for your advice & response, wishing you strength & courage in your journey...

Take care -

Cheers - Erin :)

what a great attitude mah437... i like to think that my attitude to life pre diagnosis was very positive so that's what I am aiming for & to live life to the fullest without looking too far down the track & just dealing with any complications that may come along.....

thanks for sharing your story... take care & stay well

cheers - erin :)

Hi Erin,

The pain you feel could be pancreatitis? It can get inflamed from some of the meds they give you for PSC. I would ask my doctor if that is possible. Urso can cause the symptoms you are having. Ask your doctor if you can reduce the dose. That helped me. It caused headache and acid reflux in me. Lower doses relieved that problem.

Is/are your doctor(s) familiar with Primary Sclerosing Cholangitis? It was two years before I met another PSC patient after being diagnosed. It was at a conference. There, I learned that everybody had a different disease experience. Some had it for 16 years and were very healthy looking. And, there was a 26 year old man and his new wife. He had only been diagnosed one year and he was very sick. Your experience is going to be different from others, as well. Eat healthy, drink plenty of water (that will help with the muscle cramps. I had cramped legs, feet and hands.) Get plenty of rest. My doctor said he had a PSC patient that lived into his 80's with the disease.

At this stage, it is probably too early to know if you will need a transplant. The doctors in the United States do not volunteer information about what stage of liver cirrhosis you have. In case you didn't know, cirrhosis is the scaring of the liver that PSC causes. I was diagnosed when my PSC was very advanced and my doctors told me I had End-stage IV liver cirrhosis, so a transplant was anticipated. I lived with PSC (about 15% of my liver was functioning) for five years before receiving a transplant.

Conquer the fear. That is a must. Tell yourself you must be there for your son. Responsibility for and commitment to another's welfare does wonders for you, psychologically speaking. Just before my transplant, I was taking 23 different medicines that really altered what normal life was like. Do what you can. Do your best, and don't get down on yourself. You won't be able to do all the things you did before. Save your energy for the most important things, especially the fun things you can share with your son.

After my transplant, I was able to resume a normal life. It is a miracle, to me, to be alive! PSC is a bad disease and I am sorry that you have it. But, as bad as it is, I think it made a stronger, better person out of me. Be your own advocate. Ask all the questions you can think of. Get as knowledgeable as you can about the disease and be a good reporter to your doctor about your symptoms. The more informative you can be, the better they can help manage your health.

God bless.

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It also helps to remember that a lot of people haven't made it to your age even. Each day on Earth is a blessing.

Also, you are not alone in getting an illness. Later in life, a lot of people get something. Each year as you age, people around you will develop conditions. As bad as your illness is, there is always somebody with something worse.

I'm thrilled that I don't have MS, or Lou Gehrig's or diabetes or kidney disease or flesh-eating disease. At some point in the future you may look back and decide things went a lot better than you first thought they would.

Hi Erin,
I also a mum of one from Melbourne. I was diagnosed in early 2008. It was a shock to my system too, getting a disease that I had never heard of. It took a good couple of months for them to work out what was wrong. Ended up with colitis too and specialist has question mark over Autoimmune hep.
I have been lucky that I have not had too many symptoms. Have some pain in liver region and struggle to keep up at times. Other days I could quite easily forget that I am sick (except for the Medication).
It is a difficult disease to explain to others. You need to find people to support you and are willing to listen when you are having a bad day.
I work part time (4 days) but wish it was less. Hope you get the support you need in your employment.
Anyway, just thought it would be good to write to you since we are both in Melbourne and it such a rare disease.
Best wishes