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Looking for advice


#1

Hi everyone, i am 17 and have recently been diagnosed with stage 4 PSC. i dont know much about the condition having had it mentioned to me 4 months ago as a possibile explanation for all the symptoms and an MRI and liver biopsy confirming this a few weeks ago. My blood results have been abnormal for 3 years and my liver function has decreased significantly overthat time.
The scarring of my liver is bad and my blood results show extremely deranged levels of enzymes and my LFT are severely deficient.
I struggle with quite a few symptoms but the last two weeks they have become worse. I am experiencing extreme fatigue and cannot walk for more than 20 minutes without collapsing from exhaustion, i have awful pain in my upper right abdomen and my IBD is back with a vengeance. I have extremely bloody diarrhea and this wipes me out and the stomach cramps are almost unbearable. I drink around 3 litres of water a day and my urine is very dark in colour. I have also been jaundiced for 6 months and it appears to be getting worse. I am also severely underweight, I am 5’8 and weigh 42kg, my BMI is 14. I lost 8kg in 4 weeks during a particularly bad IBD flare up. i am on a 3000 calorie meal plan but continue to lose weight and am physically unable to eat anymore than what i am, i already have no appetite but eat to try and prevent anymore weight loss.
My doctor seems very ambiguous about any kind of treatment or suggestions to slow the progression of the disease and has given me some warning symptoms of complete liver failure and advised if those occur to go to the hospital.
I also struggle greatly with my mental health and have had 2 serious overdoses. I feel this could have had an impact on the sudden decline in my liver function and due to this, i do not want a liver transplant. I cannot justify being a recipient of a liver when there are hundreds of people on the list waiting and i feel responsible for the damage i caused to my own liver.
I am looking for support and suggestions for anything i could try to alleviate some of these symptoms and improve my quality of life.
Before the decline in my liver, i was a carer for my mum who has cancer. we are both exhausted almost all of the time and are really struggling to keep our heads above water. Any advice would be greatly appreciated ! Thank you


#2

Hi Emily,

Thank you for sharing your story! I am very sorry to hear about all the (medical) problems you’ve had to deal with!
It’s perfectly understandable that after every thing you’ve dealt with, it takes an emotional toll on you! Especially when you are so young.
Don’t be hard on yourself! PSC is something you didn’t cause. Yes, the overdoses might have worsen your liver, but you don’t know. And I absolutely don’t think that is a reason for you not to get a liver transplant.
I think your mental health will become better when your diseases are more under control. If that means getting a liver transplant, I think that is something you should really consider!

But first of all; have they done an ERCP yet? That can really help to reduce some of your symptoms.
There are very helpful people who know a lot more about psc than I do on this website. Surely they can give you some advice!
As for your IBD, I hope they can start you on new medication so your symptoms will reduce!
And in general, maybe you could see a psychologist to speak about all your troubles?

I wish you all the luck with your health! And hope you can see a little light in the moments/on the days that are better.

Kind regards,
Sophie


#3

Emily,
You are so young to have to be at this stage of this awful disease. I started at 13 (PSC/Ulcerated Colitis) am now at the age of 58. Although I have not had many of your symptoms, I have had jaundice and have had emotional problems and overdose. I completely understand what you are going through emotionally with all your thinking processes. I too have had many of the same thoughts about a transplant. I don’t think everybody understands this. However, I do agree that counseling is a good idea if you haven’t seen anyone. You have been through so much, not only with your own health issues, but your moms as well. Also, make sure you have had every type of test possible besides the blood work & ERCP, there is the MRCP. See about any and all types of meds to alleviate your symptoms.
Best wishes.
Jane


#4

Emily,
From what you are describing you need to be on the transplant list. Are you seeing a hepatologist associated with a major hospital that does liver transplants? If you are just seeing a local GI you need to do that today. You call the nearest major medical center and ask for their liver transplant department and self refer yourself for an appointment. This is not anything to delay.
We are here for you so if you need help finding a hospital like this let me know.

Mark


#5

Hi Emily,
I’m so sorry you and your family have so much to deal with. Your health issues are like a combo of two of my children-son with PSC, daughter with mental health issues. Know that any damage, if any, to your liver from overdoses is no different than the damage done to it by the PSC. Mental health disease process is no different than anything else going on with your body. I am also a nurse and from what you describe and if you were my child…you should be in a hospital for symptom management and work-up AND psych/counseling while inpatient. You have a lot going on, but you had the strength to ask for help. Stay strong! Know you’re loved and worthy <3
Tracey


#6

As Mark said, you really need to see a transplant hepatologist at a mayor hospital that does liver transplants asap. You should find the best place for liver transplants in your area and call them right now!

Best of luck,

Andreas


#7

Hi Emily,

I’m very sorry to hear about your story. Don’t be so hard on yourself. Your story is very sad and life has been very unfair to you. But you shouldn’t blame yourself. You can’t be sure that overdosing caused your liver damage (you maybe took tablets that are not metabolised by liver). Stress can also accelerate disease, and you have been through lots of stress. You definitely deserve new liver.

Best wishes,
Frida


#8

Emily,
I think it is unusual that those with IBD are told to reduce their stress at the same time what we go through is what is causing the stress! Chicken and egg kind of thing, I guess.

One of the best lessons I learned in going separately through UC and PSC is the mental aspect of dealing with the disease is as important as dealing with the physical part. And it can be damn tough dealing with either. With both, being ready for the roller coaster ride is a aggravating, frustrating and a pain. Having a good sense of humor helps eliminate some of the aggravation.

I do not know if there is a transplant center near you, but as Mark said, with the symptoms you describe, you need to be seen by a hepatologist asap.

We understand about the appetite.I got to the point of eating small snacks throughout the day, 6-8 mini-meals, instead of a breakfast, lunch and dinner.

With UC, I would sometimes go to the bathroom when I thought I did not have to go, just to fake out the UC, and try to get some control over the poops.


#9

Hi Emily,
For 17 you are a strong force. I believe strongly in my heart of hearts that we must follow our heartfelt advice. Part of doing just that is the option to change our mind or life path, whatever that means. I say this so if you chose to get listed, that’s ok too. I do understand where you are coming from and I find it admiral and it makes me think that you would Not abuse an option at new Life and that you Would do the Personal Work necessary to start on a new path.

Think about options and what may or may not work. Love your mom and yourself and lean into your support docs if they are willing to have you. Trust their guidance and words - sometimes our minds are not our best advocates.

Your post is both beautiful and heart breaking - continue to reach out and proud of you for doing so today.

With Love and Light and many blessings to you and your mom,
Jennifer


#10

emily sweetheart,

Reading this breaks my heart for you! Since you titled your post, “Looking for advice” let me throw in my 2 cents worth also.

Find a new doctor. Today!

Try to get that damn IBD under control. That could change your day to day immeasurably. I was really devastated by UC too and was near death before it was diagnosed and successfully treated. I was 90% better in like 2 or 3 days, and have virtually no problems at all 22 years later. With UC anyway. :wink:

As some others suggested, an ERCP might help you too. They have helped me. Takes a little more than a day or two, but it can help with jaundice for sure!

Don’t let your urine freak you out. It’s likely that “bili goat rubin”, as my friend calls it. LOL You cant control that with drinking water. Drink as much as you can to stay hydrated, but try not to worry about that part. Mine has looked like strong tea for years.

I was very recently listed for transplant. I fought the idea mightily for years. Nobody in their right mind would want to have to face any of this, and especially a transplant. That is up to you to decide of course. Please don’t go too far down the road of regrets for your past behaviour. Can’t change the past, but with help, you might alter your future. I’m sure that everyone here has many things that we have done that we regret. I will promise you that this train of life is truly for saints, sinners, whores, and gamblers. YOU are as valuable and worthy as any of the rest of us!! Maybe you know that and maybe you don’t? But believe it! No religion required.

We don’t cause PSC. You sound like a wonderful young woman! You never know what may be in store for you…it is a big and wonderful world out there!

Post as much as you want, and don’t hesitate to reach out to anyone here privately too. Everyone brings something different to the party and we are here to support each other. Please give my best to your Mum.

:peace_symbol::heart:,
Doug


#11

Hi Emily,
I, too, had to assume the care of my mother in my teens—but I wasn’t faced with my own health crisis at that age! Bless your sweet heart!!! I can’t imagine how you are doing it! You’re amazing!

I’ve had ERCPs and stents myself and they have helped me A LOT! I’ve also been working with a nutritionist, but there is quite a lot of nutrition advice on the site. I really think this has been helpful for my energy and weight management issues too.

But do you know what I think has been the most help? This group. Simply knowing that other people are walking the same path and understand how you feel—both physically and mentally—and lovingly support one another is fantastic! I really do agree that you should feel free to ask questions, vent frustrations and be supported here.

The mental health issues that come part and parcel with this disease are really tough! We have serious health problems that most people simply cannot understand. There are no fund raising events for our disease and no “race for the cure” to raise awareness. In some cases, even our own families suggest that if we “just start eating and acting like ‘a normal person’” we will become “normal” again. sigh It can be really tough, can’t it??

Please be gentle with yourself. You DESERVE your own life. You deserve a new liver absolutely as much as anyone! And you deserve happiness. Survivor’s remorse is very real, but believe me, any young woman who has cared for her mum and faced down a devastating illness of her own deserves to live and pursue happiness.

Please take care and feel the love and support coming your way.

:heart:
Marian


#12

Hi Emily,
Totally agree with Mark. Look for a Hepatologist I your area or in a good hospital which has a Liver transplant program. A hepatologist will be able to guide you on next steps. This condition can change patterns really quick and you need to be ready for it. Ercp should help alleviate some of your symptoms best a doctor diag and figure out. As soon as I was diagnosed in 2003 I went to see a hepatologist and was recently transplanted. All the best and wish all turns out well for you.


#13

Hi Emily,
Your doctor seemed very ambiguous about PSC because they are taught it is so very rare that they will probably not see one patient with it in their career. He probably relied on textbooks to inform himself about PSC. I presume you live in the UK? I’m from the USA. Through your National Health System find a Hepatologist, that is a doctor that specializes in diseases of the liver. A gastroenterologist is not fully trained for liver diseases.

Your description of being told you had Stage IV liver disease, IBD, jaundice and total fatigue is what I had, too. Is there anyone who can help you care for your Mum and you? You both need assistance. You are trying to do it all.

Emily, at 17 you deserve a long, happy life. Stop thinking you are not worthy to get a liver transplant. Of course you are. It bothered me greatly when I got placed on the transplant list. Someone would die that I might be saved. After much mental debate with myself, I realized that the death would occur anyways and I might as well receive a chance at life from it.

As it was, my replacement liver came from a living donor, my daughter’s girlfriend from high school who read about my story on Facebook. Two thirds of her liver replaced my entire liver. The liver regrew in both of us.

The mental battle within you is a worthy opponent. You must conquer any thought that you are not deserving, or any argument that would limit getting well. Fight for life, for you and your Mum. Don’t every give up. Seek support from a friend, counsellor or spiritual support. Your state of mind will help determine the outcome.

I do not know how your National Health Service works. If you need a referral from your doctor to see a hepatologist, then ask for one. In the States, they are usually associated with hospitals that do transplants and that train other hepatologists. Another way to find one would be to contact a hospital that performs transplantation and get some advice from them on how to proceed.

livingwithpsc.org is a wonderful place to give you courage, moral support and good, solid advice from people who know what it is like to live with PSC. Seek help to care for you and your Mum. Your strength will be needed to see your way through this disease. There is a good quality of life ahead of you, young lady. Your medical team should include a hepatologist, gastroenterologist and internal medicine doctor. UK readers, please post how you access care and help Emily.