Quantcast

Primary Sclerosing Cholangitis (PSC) - Online Support Group

Just needing to tell the story


#1

Hello everyone. I just became a member yesterday. As my profile says my husband is the one suffering with PSC. When he was first diagnosed we didn't really know what to expect. Our doctor said it could be years before he has any issues and he really emphasized more of flu-like symptoms that he could have with increased narrowing. Well 1 month ago he became very sick and VERY yellow. We were freaked out. Was it due to narrowing of the bile ducts, was it the little ones in the liver or the big one outside the liver, was it bile duct cancer, ect... We were completely caught off guard. We have 3 young children (ages 1, 3, 6) and we farm/ranch (this keeps him very busy) and so this was really hard to deal with. We see a gastroenterologist who trained at Mayo clinic (which I hear is a big PSC center) so that gives us some comfort, but we still have no idea about anything. Our doctor answers all of our questions, but with this disease being so variable we just don't know what to expect.

I know my husband is the one going through all this, but I am the one who has to sit back and watch. I am tired of having to watch him lay in a hospital bed, get IV's, be poked for bloodwork, ect. I wish I could take it all away from him. He is so afraid of having our children watch him be sick and I am so afraid of him being sick. I just feel like the weight of the world is on my shoulders; and of course I feel guilty for feeling that way when I am not the one sick.

My husband is also having a really hard time staying positive. Actually, he is so negative. He is so angry, bitter and depressed about the whole thing. I have tried empathizing, being tough, being a little cheerleader for him, but none of it helps. How do you keep positive?

I could go on forever and ever, but I won't. I am so grateful just to have a place where others understand. Thank you!


#2

Lisa, I learned in going through colitis and resulting surgeries that that the spouse can go through hell too. While I can't speak for my wife, there are a couple of things that I learned then that really help me now:

1. Look long term. Getting lost in the daily stuff will drive you crazy.

2. Realize that you will have bad days. They will help you appreciate the good days.

3. Any day out of the hospital is a damn good day. This will help with the bitterness and anger.

4. Control what you can.

5, Be flexible to deal with the things you can't control.

6. Have a good sense of humor. This also help with any bitterness or anger

7. Know and accept the fact that you're human.

I hope this helps.

Jeff


#3

I second what Jeff and Stephen say… I was diagnosed in 2005 … I had been a healthy person all my life just with your typical colds. Trust me when I say I had that tunnel feeling when I was told … yup its that 1 in a million lotto that no one wants to win… but unfortunately life deals a different hand to everyone. Your husband does need to take it a day at a time but also plan for the future… if he is really having a hard time please have him speak to someone … if your not aware one of the side effects from the disease is the itching… THIS can be maddening and drive anyone insane… it is very important that he does understand that your ordinary lives are not going to be the same but not to give up … this is not from one day to another have him take care and stop drinking alcohol and eat healthy and to maintain a healthy fit life as best as he can… you being there and understanding will be a great help so dont give up … kuddos to you and if you still need help or a question answered … just ask we are here to help and support as best we can !


#4

What wonderful advice from marisol, Jeff dc and Stephen! It is all so true. So many times the symptoms come, drive my husband nuts and then… they go or only loom: leaving us to have a pretty good month, six months, year or whatever. Pretty unpredictable. This is our new normal and we are learning to live life better because of it. We are try to live a healthy lifestyle, both physically and mentally, making improvements little by little, without mindlessly reacting out of anxiety and/or paranoia. We have a diet of not only health food, but healthy people, activities and reading in our lives. When cholangitis or itching or fatigue rear their ugly heads, we try to remember that this too shall pass and there will be better days again.

My husband was diagnosed 5 years ago and many of the feelings you have , Lisa are similar to mine. You said that your husband is the one going through this, but YOU are also going through this. In a partnership , both are impacted: albeit it is different for each of you. Being a cheerleader is important and at the same time being a good sounding board for your husbands fears and frustrations is a balance that is sometimes hard to negotiate. Timing is everything and you will get better at knowing when to say to your husband, “You know, this is one of those discouraging bumps-in-the-road, but we will get through it together.” OR, when to just hug him and say, “I know, it sucks, doesn’t it? And I can understand why you would feel angry. I feel it too sometimes.” Have caution in getting caught up in projecting too much about what the future will hold. Some planning might be important, but since nobody has a crystal ball to predict the future with or without psc, it will end up spoiling the good days. I meditate and have learned the practice of mindful meditation. It has helped me to live more in the moment , avoiding projecting stories that I create in my mind that might or might not end up happening (untruths- so to speak). With this focus, I am able to enjoy and be grateful for all the good Stuff going on in our lives, even though we have some painful and sad things we have to deal with and accept at the same time.

You can make the choice to handle and grow from what is ahead and you can also forgive yourself for the times that you are not feeling very strong. You made a good move by seeking out others that are dealing with this.

Sending kind thoughts for health and healing, Lisa and all others that are dealing with troubles.

fleur54


#5

Wow...thank all of you for your comments. It is so great to hear what others have gone through and the advice from others going through it. I love how the emphasis is living life to the fullest and trying to live as healthy as you can. It is a comfort to hear Stephen Cox that you have survived bile duct cancer. That is such a scary thing. It sounds like it is such a death sentence-yes what you read is so....scary! Thank you fleur54 for the spouse's perspective. I cannot tell you how much I appreciate you all sharing your stories and what you have learned. I am going to have my husband read all of your comments and I hope they provide as much comfort for him as they did for me!!

Lisa


#6

I feel for you Lisa and for your husband. I'm over 60 and I had a very rapid decline last fall with a MELD score over 40 (very sick) and waited another two weeks for a liver transplant. I have a very concerned wife who supports me so well, holds my hand when I need it, and tells the world how strong I am! ( physically I am really weak and can barely curl 10 Lb). I agree with some of the others that say be extra thankful for the good days, but also have a flexible outlook with a view going forward looking towards all of the scenarios that you and the hepatologist can come up with. I learned, after many weeks in the hospital, that I was making a big mistake by lying in bed so much. One loses strength very rapidly and you really need that strength to get through this episode, or to have a transplant. Before last Fall I was at the Mayo Clinic (a very good experience) and the parting words from the hepatologist were "don't slow down!" I should have listened more carefully to him. I would encourage him to see your children - they need to know the truth and seeing them will brighten his day and give him something to be strong for. Continue to help him, in the words of the apostle Paul, "fight the good fight!"

EAD3


#7

Hi Lisa, I am sorry to hear of your struggles and for your husband, I was diagnosed with PSC April 2013 literallly the day before I was to travel to Thailand. My first thought was I have to cancel this is not good. I saw my gastro Dr and she encouraged me to go, to keep going as long as I can. TO keep busy as much as I can, when I am physicallly able. Fortunately I am at an early stage I was really only diagnosed due to increasing liver enzymes and a GTT that was 903. I am so glad that I listened to my Dr and still went to Thailand. It was one of the best hings I could have done for myself. I do have days that I am wiped out completely and I rest then, when I am feeling well I try and stay as active as possible. I will keep you all in thoughts and prayers


#8

Thank you elsie!! I keep trying to tell my husband we really need to change priorities and be greatful for what we have. It is just really hard. He is feeling like he let everybody down because he can't work like he use to (his 73 year old dad has really had to work hard this summer) and he is afraid people are going to think he is lazy. When you are a farmer/rancher it is go go go all the time. It is definitely hard to change. :) Thank you for your thoughts and prayers also!!!

Lisa


#9

I encourage you to follow the thread on this forum about nutrition. So many of us are commenting about the fact that most doctors don’t address it, but so many of us are finding control of some PSC symptoms through a very careful diet.

Another thing that has really worked for us is having antibiotic on hand all the time so as soon as my husband feels the familiar increased itching, headache, chills, pain in the URQ (upper right quadrant) he starts the antibiotic. His doctor prescribed it so we have it on hand and will would have to wait to get it going (so important with cholangitis not to wait).

Fatigue is a big issue for my husband. Driving / commuting is getting really hard and dangerous. We are considering a move so he doesn’t have to do the drive any more (one hour each way). A difficult / stressful change in itself, but really necessary.

How to not bum out/ over stress about life? Stress is really , really a bad thing to do with PSC… 1) Count your blessings. They are always there. Our grown sons are a joy to us. They come visit and have life and energy to share.
2) limit energy sucking/toxic people and toxic thoughts in your life.
3) Instead of pining over difficulties and letting goodness get sucked out of you, look for joy that is all around us … even in the midst of pain. In between the times when you husband feels poorly, try to point out all that you have to be grateful for… a home , each other, caring medical folks and all the good times had together. Then you are not robbed of this present moment, because you have turned to the energizing power of being grateful. I know this might sound like a platitude. It isn’t easy to do, especially when feeling poorly… When “that bad mental place” can be powerful. But, to keep aiming at it , beginning with the times that he isn’t feeling quite so bad can help to make it more of a habit: a way of life … and hopefully these coping skills that we develop through these trials are skills that our children , by seeing us practice them, will learn how to use themselves, when they need them, which we all do at some time in our life. Just the nature of being alive, really. Life IS hard… But it is lovely too.
4) forgive him for his frustration and for when he isn’t dealing with it well. Forgive yourself too and then pick yourself up and try again.

It can’t be easy with little children and ranch to boot. We have other big stressors on top of all this too… aging parents who are caregivers to a handicapped sibling living with them… Half way across the country from us…, job stability issues, joblessness on my part… etc… …I feel for you because I do understand how hard it might be… and with this, I send hope and compassion your way.