Still feeling low & confused

[Quilter1]

I'm one week in to my diagnosis, reading as much info as I can & still trying to get my head round it. Countless friends saying 'at least now you know what is wrong, accept it & live with it' not that I want oodles of sympathy but I feel it should like telling some one who is depressed to 'pull yourself together'. I am trying to be positive but it's hard still getting my head round the diagnosis. Anyone felt the same?

[LisaC22]

Yep & I'll bet everyone else on here will have felt exactly the same too! It seems that once you get past the first year after diagnosis you will find you are not worrying & stressing quite as much. For me it hits me every now & again. At the start I was extremely stressed. There's no doubting it's a journey. This site is great though & there is a huge amount of knowledge & experience on here. Plus you have access to the Foundation itself. The problem is because it's not a well known or well understood disease, people just don't know about it & really don't know what to say to us. Best advice I could give you is to take whatever medication your doc recommends (probably URSO & a good multivitamin) & try & keep yourself as healthy as possible in every other way - good healthy diet & exercise. A lot of people on here have been told in reality they will die with PBC not from it so keep telling yourself that. And drop in here on a regular basis! Best of luck 🍀

[Quilter1 in reply to LisaC22]

Thank you, I am sure once I have seen consultant again in 3 weeks & got more info I might feel better, had gastroscopy yesterday & thankfully that was ok. Still waiting for a fibroscan, ultrasound showed ??cirrhosis which is why I was originally referred to him along with high LFT's. the bloods he did showed me with strongly positive AMA's which brought about his diagnosis & he wrote to my GP to prescribe the URSO. I have joined the foundation & found all the information given great, though I do have to keep reading it till it sinks in. Xx

[Lmur]

Hi like you I'm one week into my diagnosis and still confused !!! Stared on urso but can't seem to get my head around it either 🤤 like do I have to change my diet and can I still have a beer ( not that I drink much ) but afraid to have one my next appointment is in 6 weeks but waiting on scan first . Just don't know what I can and can't do 🤤

[Quilter1 in reply to Lmur]

I'm a very occasional glass of wine person if out ( which isn't often!) but from what I have read best to not have any alcohol. Loads of information on the PBC foundation. Can do without the wine but if I can't have my favourite cherry liquor chocolates at Christmas I will be upset! Whoops just remembered I put brandy in my Christmas cake too !! 😱😱

[ILik3Pizza in reply to Quilter1]

I was diagnosed 6 months ago so I vividly remember that "shell shocked" feeling when hearing the diagnosis. I am 67, stage 4 cirrhosis, fatty liver, AIH, GERD, and gastritis. For months I was so depressed -- all I did was read everything I could get my hands on -- each thing worse than the previous. (Currently, other than fatigue, I am asymptotic). One day I realized I was wasting my symptom-free days by worrying and decided to enjoy my life. My sister (doctorate in palliative care) suggested that since cirrhosis is irreversible perhaps I should focus on drinking only good wines instead of the cheap stuff! My specialist agrees that a glass now and then won't really change my prognosis and may even improve my outlook! Cheers!

[Lilly2017 in reply to ILik3Pizza]

Well I vote champagne, but clearly you're brace one here. We will let you pick!

Cheers!

[Hidden in reply to Lmur]

No alcohol at all. I'm sorry that we all have to go through this.

I really hope that you have some form of support

It's terrible to have no one and no support at all.

[Biddyb in reply to Hidden]

I agree Jenny no alcohol as it makes things much worse. I note that you remark about having no support is it so in your case. I hope you are not struggling on your own

[Lilly2017 in reply to Biddyb]

I thought we could drink alcohol we just have alcohol intolerance so we don't.

No???

[4pjx__]

Also 1 week after diagnosis. Started the Ursidol the other day. Also have an AIH overlap. Really bummed about it.

[Quilter1 in reply to 4pjx__]

Sorry what is AIH ? Seems a few of us were hit with the news last week!!

[4pjx__ in reply to Quilter1]

Oh sorry. Autoimmune Hepatitis

[Hidden in reply to 4pjx__]

Did you find out what your enzymes are yet

[Quilter1 in reply to Hidden]

Won't be seeing consultant for 3 weeks to ask, he didn't mention them in letter to gp, on.y thing he commented on was the auto immune screen results

[Hidden in reply to Quilter1]

If I don't take my meds my enzymes will shoot up

[4pjx__ in reply to Hidden]

No. I'm afraid to find out. She said they were high.

[Hidden in reply to 4pjx__]

As long as yur taking meds yur ok. But if you have the aih cross over you need to keep an eye on yur alt. The aih is what's going to take me out in the end. For some reason that enzyme alt elevates rapidly

[iagra]

Yes, I felt just like you when I learned I have PBC. It's been about 8 months since. I take urso, trying to eat better (though not always follow through), trying not to think about it and just go about my life like before.

[lizagood1]

Hi Quilter1

I was diagnosed around 6 months ago. The Doctor (after numerous blood tests) just told me over the phone 'you have a liver disease' and left it at that. Fortunately I was able to see a consultant 2 weeks later but she may well have been speaking a foreign language. I knew a little bit more but then went on a series of tests. I tried telling my family, they listened but did not understand (much like me). Work were and are sympathetic but do not understand. We are all aware of cancer and it's treatments because of the campaigns to make people aware. But with this disease even the GP's are not really knowledgable. I felt confused, scared and alone when I was diagnosed and then found this forum which I've posted a few questions that have been answered by fellow sufferers. I'm reading as much as I can, following advice and trying to eat and be healthy. I swim 2 or 3 times a week which boosts my mental health as much as anything. I'm responding to Urso but I am experiencing a bit of fatigue at the moment and managing that by not pushing myself too hard. I've learned to say no family if they want be to do stuff i.e. Babysitting if I don't feel up to it. My job is semi physical and when I'm tired I'm telling them it's enough I can't do anymore and I need a rest, I'm putting myself first in other words.

Look around this site and don't be scared to post questions and remember no question is stupid. This forum has helped educate me and therefore educate others. Sorry for such a lengthy reply! But welcome to help and support here!

[Quilter1 in reply to lizagood1]

Suppose I am lucky that after blood tests & ultrasound showing ?? Cirrhosis my GP referred me to consultant, did have to wait a couple of months, he said he wasn't duly alarmed about my raised LFT's as they were above normal 9'yeats ago but that was prior to having gall bladder out, in hind sight perhaps they should have been checked after but I hadn't been to the doctors as I was well. Got the diagnosis from GP last week when consultant wrote to her to prescribe the urso, she said she had treated a few ladies with it in the past. Hoping consultant will give me more info when I see him in 3 weeks, I had gastroscopy the other day which they said looked normal so I suppose that's a positive, there is a long wait for a fibroscan, will be asking him how long when I see him as obviously that will see just what state my liver is, he said he wasn't in favour of doing biopsies which I was relieved about as I have to cope with a fear of needles but suppose I am just going to have to get used to that too!

Hubby is supportive but I don't think he really understands what is going on in my head at the moment, I know I will get over this first hurdle of the shock of the diagnosis & get on with enjoying my life it's just initially scared.

Finding this site really helpful & don't feel quite alone & I spoke to Alan at the foundation the other day.

Sorry I'm rambling now, you take care too x

[kandiepat in reply to Quilter1]

Hi Quilter 1, Ive been diagnosed 3 years now and on Urso. In Ireland they don't seem to do liver biopsies and fat chance you would get a fibrescan! I asked my very nice consultant 'what stage am I at?', he thought about it and said ' well if I had to pick 3 out of 5 of the worst patients, you wouldn't be one of them! I was strangely satisfied!! I fill my time reading Auto Immune fix it books, I am at present on an Elimination diet, I try not to eat gluten and I'm off dairy for a long time.Its all inflammation related, if I eat anti imflamatory I feel better than if I just forget about diet. I am happiest if I think I'm doing something towards getting better. I have Sjogrens as well and I think my symptoms are not too bad because I keep the inflammation down. I would just say, you have to hope that someday you will get better, even if everyone is saying Rubbish! Maybe I will feel differently in a couple of years, I hope not.

[littysgirl in reply to kandiepat]

I'm curious about you keeping inflammation down. I think most of what is wrong with me is related to inflammation and it seems logically that if I could reduce the inflammation, that would improve or at least slow down my issues. But what reduces inflammation? And is there a way to see if what you are doing is working? I feel like there is a blood test that tests for inflammation but right this minute, I can't remember what it is. Oh, CRP? C. reactive protein, I think. Does anyone know about this?

[kandiepat in reply to littysgirl]

Hi Littysgirl, just google Inflammation diet, try it for a while and see if you feel better, take notes. That's what I do, I never stop reading hopeful books either.

[littysgirl in reply to kandiepat]

Thanks. I'll try that.

[Lilly2017 in reply to Quilter1]

Word of advice. And I am saying this because had I known what I would put my marriage through and have the love of my life walk out the door after I assumed he'd just be there?

I was wrong. And I'm not over it and I will never get over it.

He needs your attention and love too. We can get so, understandably, get stuck in our symptoms we forget the caregiver who is sacrificing their life to suddenly care for a very ill spouse.

I didn't ever ever think he'd leave. But he did. And he despises me now. I love him.

One more thing to give up. Then they were all gone. And that's the part I don't get. They were never that nice to me before or after.

This is like having cancer I pleaded him...,at least cancer has an end, said my husband.

And I have to watch him take my daughter to the House with a pool I'd spend days dreaming about. My family, my baby, my husband...six years later I weep everything time they go home without me.

You guys should start seeing a therapist together. Do not do what I did. You build him a trampoline to bounce back to you. Because we can get to be too much they say.

I don't know. I think I'm a lovely....oh Nobody's here.

All alone.

Fix it before it breaks. 90% of couples with a disabled spouse end in. I can't say it. You know.

And I have to watch him love someone else. That's the only thing I can't bear. I would have done so much had I even entertained the idea that he'd go. All the men in my life my dad,y brother, my husband....I'm dead them. They think I deserve this.

I can do with my father and even my brother. But never Eric. He just leaves here alone with Lilly and it gives me a panic attack every time I hear them leave.

Man. Now I am very sad.

[Ohio82]

Yes!! Perfectly normal and it's very hard to get your 'head around it'. Just as I felt !! Reading is very scary!! Just remember we are always here and know how you feel

[Suzi8]

I'm 53 and was diagnosed a little over 10 years ago. My doctors are VERY proactive with my care and also told me that other than dealing with some uncomfortable side effects and regular checkups and tests, I COULD be one of the lucky ones to live a pretty full and wonderful life and die from something totally apart from PBC. After the shock wore off that my body is betraying me, I chose to live. We all have symptoms we have to deal with on a daily basis, but some days, after I take my meds for it, I opt to forget I have anything wrong with me!! I am very aware this is a progressive disease and my quality of life can, and probably will, get worse, but I figured I could go into a dark room and crawl in bed and start sucking my thumb or go out into the sunshine and maybe try to put efforts toward making more memories and helping give others a reason to smile. Our futures could be MUCH bleaker and we never know when we are going to be called up. As I've said before, we buried our 23 year old son six years ago so THIS is NOT the worst thing I, myself, will live with. If you choose to look around you and find something, or others, to put your efforts toward, your mind will soon get occupied with living😍

[Rockie in reply to Suzi8]

Suzi8. I agree this PBC, itching and all,is nothing compared to the loss of a loved one. Our son died 2014 at the age of 45, after 4days in hospital. His dad, my husband of 47years at that time, passed away 3 months later. Suppose that is life, but we have to try and get up every day and make the best of what we still have. I feel for you

[Suzi8 in reply to Rockie]

So sorry you are living with the loss of a child and sorry about your husband. I still have mine of 37 years so I DO have some support.

[Lilly2017 in reply to Suzi8]

I'm not going to let you suck your thumb. We have some standards here lady.

[Shulsey]

ABSOLUTELY!!! I've known for the past five years & still have a hard time believing this is happening to me. Mine has progressed rather quickly but no one can seem to figure out why. We're working on a answer though

[Biddyb]

Yep scared to death when I was diagnosed in 2007 especially when I read somewhere that death was expected after being diagnosed for 7 years. There is such a lot to read about and so many different levels people are at, I have come to realise that healthy diet and exercise makes a difference I have given up alcohol as it makes more work for the liver due to the toxins there in. Most days I feel fine when I feel tired I just chill out till I feel well again. Find though that I get really tearful and cry at the slightest thing. Try and make a list of questions to ask your consultant who should be able to give you the answers you require even if they are not what you want to hear. If you don't get the service you deserve then seek another consultant and ask your GP to refer you. I changed my consultant last October as he was treating me as if I was an alcoholic drug user which most of his patients were so now have a Hepatologist rather than a Gastroenerologist. Good luck it is a mine field, also found British Liver Trust were great

[Jlruggie]

Certainly. It's weird. Everybody on this blog feels the same. You aren't alone. I was an extremely social person working at a public school as a speech therapist for 32 years, weekly happy hours, parties, huge family, 8 nieces and nephews. The last 5 years of work were so so hard. I retired early, work 1 day a week now picking up a additional weekly job teaching yoga. I don't drink more than 4oz alcohol per week, daily yoga classes, lift weights, weekly 2-3 hour mountain biking. I go the extra mile pampering my skin. Most importantly I don't waste my time with people who don't understand my sporadic asymptomatic disease. I feel comfortable enough with some friends ( very few, 2) and family (2) to take a nap at their house and not be my bubbly active self. Keep reading about how to protect your liver, try it and do those things that work for you like your life depends on it. It does! We are here for each other!

Jlruggie

[Hils67]

Hi Quilter,

Give yourself time to get used to the diagnosis...it does floor you. I know when I was diagnosed in December 2015 it took me about 3 months to take it in. I had very few symptoms and only went to the dr for a blood test as I was feeling so tired...I thought it was the menopause, but my dr did a liver test and dropped the pbc bombshell. I'd never heard of pbc before. I'm very active and my partner is in a rock band, so I had to get used to the idea of changing my lifestyle...no getting drunk at gigs, being too tired to do as much exercise. I grieved for the life I thought I was going to have. It is quite a lot to get your head around.

However, a year and a half on and I'm more positive now. I've responded well to URSO and my LFTs have come down to almost normal. I still go to the gigs, I still have a few beers (not as much as I used to mind), and I still do lots of exercise (again not as much as I used to). I'm 50 later this year and I think I have a pretty healthy lifestyle. The tiredness annoys me sometimes and frustrates me, but I try not to let it beat me.

This forum was absolutely brilliant, especially in the first few 'fact finding' months. It also made me realise I was lucky to be diagnosed early, lucky not to have anything else more sinister and lucky to have very little in the way of symptoms.

Be kind to yourself and use this forum to get to know about PBC. And give yourself time to adjust and eventually you will accept and enjoy your life. Something like this changes your perspective. I really think I'm healthier now as a result of having pbc as I'm much more careful about not eating too many processed foods, not having those habit forming glasses of wine after a hard day at the office, making sure I put myself first and getting enough rest.

Good luck

Hilary x

[Lilly2017 in reply to Hils67]

You are lucky to get diagnosed now. I have heard there's a higher chance that you'll do better that way. I'm so sorry

[Lilly2017]

The best thing you could have done was start here.

I've been sick for 20 years. I've been to hell and back. Stopped by heaven a few times too. Ups and downs. This is an overwhelming illness. Do not overload and stuff your head with too much info.

You ask us and we will dole it out a little at a time. I used to binge on information and be all up in my head. It does help to be informed. Actually you know the other day I was upset and crying. My mom was screaming abuse at me. I'm so tired of being dumped on. The things they actually say...no another day. Send me a message and I'll send you these videos I've been watching. This girl who makes them is soothing and it's like being in group therapy alone.

One more thing. Download audiobooks. Download movies. Shows you like. Get some big girl coloring pencils so you can color. Magazines. Anything anything to distract you. Make your nightstand your pretty little office. Pictures, inspirational crap you know. A basket of snacks. Lipstick. (You never know who may stop by. And when you drag your self to the bathroom again...you'll see yourself in the mirror and look nice. It matters.

Oh trust me. My daughter gave me a makeover on MONDAY. She had to use so much I'm still trying to scrape it off my face. Damn that kid made me feel like I need plastic surgery. She's actually my most loyal friend and biggest defender.

Hey if you're gonna be sick, at least make it as pleasant as possible.

I'm not saying this is gonna be in any way fun. Laughing is vital.

It's a good thing I am so funny

[Sachin1234]

Little bit of alcohol is healthy specially wine and beer😁..👍🏼