PBC Symptons

[bev5779]

Sorry for long post.......

Had PBC for around 15yrs, dont see a Liver Specalist just a Rheumatologist for Systemic Scleroderma. Over the last maybe 10yrs ive had the odd pains in the right hand side of my stomach, when first started it was a 3/10 pain and only happened once or twice a year, over the last five years its got steadily worse, this past year and half its happening weekly, some bouts are lasting thirty fives mins to five hours, been to my Doctors many times and now they say they cant help me (not that they've done anything as yet) only a scan, which shown some fatty liver. Five years ago i started to phone an Ambulance when pain was7/10 and above, Paramedics always treated me well but Hospital Triage never has, always tell me they cant give pain relief for stomach pains and put me in a wheelchair in waiting room for up to six hours in agony, i've stopped going to the Hospital and just sit it out at home, Theres no pattern to the pain, just comes and goes at random, ( Painkillers stronger than Paracetamol bring this pain on), nothing i do can stop it, have to let it ride its course.

On the 26th Feb i had a fall, had to go to A&E they were great, went straight through to Urgent care as i couldnt put my foot to the floor my knee was that painful. Nurse offered strong Painkillers, i refused and told her about my PBC, she went away and came back with Oral liquid morphine in a syringe, she said you will be ok with this, i took her word for it, took it and went straight for x-ray, 35mins later the pain started, i told the nurse, she got the Doctor who said i had to go back through A&E as a new case for the pain in my stomach, He said i would be seen by Triage straight away and then taken through to be put on a drip with morphine,

That never happened, the Triage nurse saw five patients before me, by this time the pain was 10/10 i couldnt move or shout anyone, my breathing was short as if took a deep breath it made pain worse, When nurse did take me in to asses me all she did was shout at me for been loud/moaning/ crying/ She shouted control your breathing, its a wonder your not hyper ventaliting , then she said your not in that much pain as have you forgot youve had morphine, she took my blood pressure/heart rate, said your ok your good to go and pushed me out to sit in wheelchair in waiting room for a further 4 1/2 hours, They then took me to splint my leg give me crutches and pushed me to the main door asked how i was getting home, i said taxi,, they left me there and went.

I'm so upset that this happened again, dont know what to do, I phoned my GP the day after and told receptonist said i needed help as this isnt acceptable no more.... two weeks later still no phone call from them.....

Has anyone else had this pain is it a part of PBC and/or been treated awful at Hospital A&E....

Thanks for reading Bev......

[DonnaBoll Administrator]

First of all , to treat a human being like this is totally unacceptable. How would they feel being treated like this?! I have some questions though... you said you've had PBC for 15 years now but see no liver specialist. Have you ever taken Urso for the PBC? Do you have your liver enzymes checked every 3-6 months. Having right upper quadrant pain can often accompany PBC. When your liver is inflammed (as with PBC) the capsule that surrounds your liver does have nerve fibers that can cause quite a bit of pain for some people. The liver, itself, does not feel pain. I'm just concerned that maybe you haven't had your PBC monitored with regular scans, MRIs and lab work.

As a nurse myself, I can not even imagine treating someone like you were treated - more than once. I hope you can answer some of these questions for me. Seems like we need to see where we stand with your liver health. Again, I am so sorry to you being treated almost like an animal.. animals deserve better treatment.

[bev5779 in reply to DonnaBoll]

Hi Donna thank you for the reply, I was diagnosed by Dr Prince at Manchester Royal Hospital, saw him for a few years then he asked Dr Pauline Ho Rheumatology to see me as he felt other things were going on as well. She diagnosed Systemic Scleroderma, Sjogrens syndrome and Rynards I see her in clinic every year but not seen Dr Prince since.. I do take urso 5 tablets a day.. Years before i was diagnosed with PBC i suffered with the stomach pain, went to A&E probly over a dozen times, each time at least one Dr or \nurse would talk quietly to me about my drinking, saying if you accept you have a problem the sooner you will bet better. or how much have we drunk today, we think your dependent on alcohol. (ive only ever drank iced water, no fizzy drinks,no alcohol, no hot drinks like tea coffee or hot chocolate no milk. Then when i started the urso, the itching went, the stomach pain went, but is gradually creeping back, When the pain starts i start to panic knowing its gonna be hell for 35 mins up to 5 hours, sweat drips off of me, im soaking, ive not been to A&E for five years with the pain, cant put myself through the humilliation of stuck in a wheel chair in my pyjamas crying moaning in pain with everyone looking at me... This last time the Urgent care knew what was going on they were brilliant in trying to sort me out fast but once i was handed over to Triage, Urgent care team dont see you again..

Bev

I take Hydroxychloroquine for my Scleroderma...

I messaged my GP earlier to refer me to a Hepatologist near me, just got txt off them, theyre going to call me on Tuesday April 1st, sounds about right April Fools Day lol....

[DonnaBoll Administrator in reply to bev5779]

So glad you got the appointment so soon. First of all, make sure you are taking the right dose of Urso. It is always - and only - based on your body weight. Dose is 13-15mgs/kg of body weight. How are your liver enzyme numbers? what is your alk phos? The itching, unfortunately, can happen anytime for any reason - or no reason at all. There are medications that do help some folks with it. Ask the hepatologist about what might help. A couple things that I found helped me were not to take really hot showers and not use any soaps/lotions that are perfumed. Please let me know how your April 1st appt goes.

[bev5779 in reply to DonnaBoll]

Hi Donna, I have bloods done every year at my Doctors on my Birthday, They call it a Birthday MOT i never get the results from bloods taken so ive no idea of liver enzymes or alk phos. Sorry the phone call on April 1st is off my GP, Thank you for the advise on showering and soaps.. Bev.....

[DonnaBoll Administrator in reply to bev5779]

Is there no way you can see your lab results? You really need to know if your numbers have improved being on the Urso? This is especially true of the Alk Phos and bilitrubin. Being aware if the PBC is being effectively treated is so important. Each of us need to know how 'things are' when it comes to any health issue. Does your doctor have a patient portal you can see the results? According to the Standard of Care for PBC, lab work needs to be done every 3-6 months - once a year is a long time not knowing where you stand with the PBC.

[bev5779 in reply to DonnaBoll]

Donna i requested to use the Patients access app, i have to wait for a code to get init, fingers crossed i can see all my blood results and maybe other stuff, not sure of hoe much you can see on the app.... fingers crossed....

[DonnaBoll Administrator in reply to bev5779]

You should see any and all test results. Send and receive messages to doctors on the portal. It's a good tool.to have.

[bev5779 in reply to DonnaBoll]

Hi Donna, Sorry for not replying earlier but the phone consultation with my GP was a nightmare, He wont refer me to liver specialist as he said my blood counts are normal, after 20 mins of arguing my case that i do need to see one ended on a bad note, have since spoke to him again on Thursday, He's made me another app for beginning of May for an examination and bloods,, he said he will send results and a referal to Liver Specalist but said he doesnt think they will see me.. Had a liver scan yesterday and will have results in two weeks, The lady scanning said she cant see anything wrong apart from a fatty liver, but have to wait for results as she might have missed something... am so upset Donna keep breaking down in tears... Bev...

[DonnaBoll Administrator in reply to bev5779]

I am so sorry this is happening. So glad you are not giving up on this. Did you ever see your lab results? I've forgotten.. who and why did they begin to give you the Urso?

[butterflyEi]

So sad to read your post.

Although you have an appointment booked for 1 April in light of the outrageous treatment I think your first step has to be to contact PALS at your local hospital. Start to document each stage of this poor treatment, get the order straight in your mind and on paper. If you can, download the NHS App, its a bit of a process, you are then able to see all your notes. If that is not possible for you a telephone call to the surgery reception and ask them for a copy of your blood test results from the last couple of years. You have the right to see your results.

I would also make a report on the accusations of drinking alcohol. This is not acceptable to anyone with PBC but sadly happens to so many of us.

The PBC Foundation may be able to give you further guidance if you call their help line which is 0131 556 6811

[bev5779 in reply to butterflyEi]

Hi butterfly, Thank you for your input..

I have just phoned PALS and started the process, I should get a phone call withing a week or two.

The NHS app will it show me what the Triage nurse was typing down about me, she was typing for a couple of mins also while shouting at me to control my breathing, not once turning around to face me. I'd love to know what she put...

My GP put in a complaint at the Alcohol remarks and since then no one has mentioned it but i'm sure its still down in my records and the Triage nurses can see this and 'im sure it could be this that's causing a problem with how they treat me....

[butterflyEi in reply to bev5779]

I don't know if the NHS App will show what the triage nurse wrote but perhaps something you could ask the representative from PALS. Good luck with PALS I hope you get some proper support.

[bev5779 in reply to butterflyEi]

Thank you, HI, I phoned PALS yesterday at 11.30am they took everything down, said they would pass it on and i would be contacted by the Hospital next week or early the week after, they phoned at 3.30pm same day, took all the details, kept apologising about how i was treated, she said she would talk to each member of staff and tell PALS that the case is now closed. The call ended so quick at the end i didnt have time to think? now i wanted to ask if i will be contacted again or is it closed for me as well?

Bev.......

[DonnaBoll Administrator in reply to bev5779]

So glad you pursued this awful treatment to you. We have to do what we can, even in the smallest of ways, to make health care professionals know that we are real people who need to be cared for compassionately and with respect. They need to know what the disease is before assuming anything about anyone with a liver related disease. Let us know what comes of all of this.

[Biddyb]

hi Bev. I too am under Dr Prince in Manchester as I requested a transfer from Halifax as I was not happy with the way my treatment was being handled. I’ve only seen Dr Prince once but have been looked after by his team. The last few years since Covid I’ve been contacted by phone but I’ve had blood tests every 6 months and I always ask the receptionist at my GP surgery for a copy of my results so I know what is going on. I had a fibroscan in January this year to check what state my condition is. I’m lucky to have a good doctor who does take action when I have a problem. Sorry to hear that you have been treated so badly.

[bev5779 in reply to Biddyb]

HI Biddyb,, I cant understand why my GP doesnt take my bloods every 6 months, bt things are going to be different now as im not going to put up with not getting the treatment i need, i have put a request into my GP's for a referral to a Hepatologist... also today ive phoned PALS to start a complaint about how i was treated at the Hospital...

[DonnaBoll Administrator in reply to bev5779]

If he was aware of the Standard of Care for PBC, he would know lab work is done every 3-6 months. Wonder if he even knows about the Standard of Care. When we know about our own disease we can feel empowered to respectfully question our doctors about the treatment we are receiving. We must advocate for ourselves.

[susanashworth]

Hi Bev, I can’t believe how you have been treated in the hospital, you poor love, at a time when you need them most,

I can relate to your pain, I was diagnosed with PBC 13yrs ago, after a lot of tests for the same pain you have described, I was more fortunate in the pain only lasted 10 min at the most, my son took me to hospital and the pain stopped and they said there was nothing they could do, I pleaded with the dr not to send me home because I knew it would come back, while we were talking it started again and as you know I could hardly breath, they gave me morphine and I was so sick 🤢 they put me in ambulance and sent me to another hospital, where they removed my gallbladder that day, and was released from hospital the next day, only the pain started again , I don’t get it as often but it still comes once in a while and it’s always a 10 , sometimes causing me to vomit, I am so very sorry you are suffering so much 💚

[bev5779 in reply to susanashworth]

Thank you, i;m sorry your having the same pain, i feel sick when i get the pain but have not been sick as of yet, have you googled about the Liver cover that surrounds the Liver? called Glisson's capsule, I found it by accident yesterday on google and it sounds like this is where the pain is coming from, can't find anything about if the pain can be treated or we just have to live with it, it seems like it could be caused by fatty liver but am not sure, if you find anything out could you let me know please....

Bev.....

[58goose]

So sorry to hear what you’ve gone through. It is most definitely not acceptable and PALS is certainly the way to go.

I’ve had PBC for over 10 years, treated by a gastroenterologist at the QE Hospital in Kings Lynn. I have been on Urso from the beginning plus Adcal D (calcium supplements) and have 6 monthly blood tests, ultrasound every year, endoscopy every 2 years and bone scan every 5 years. Following a diagnosis of osteoporosis after my last bone scan I now take Alendronic Acid to help calcium absorption. I am eternally grateful that I appear to be getting exemplary care compared to many!!

I also cannot take pain relief stronger than paracetamol/ibruprofen without it causing me acute pain in the diaphragm area (? below where heartburn would be -if that makes sense). This started after having my gall bladder removed and I was diagnosed at UCH London with Sphincter of Oddi Dysfunction. Certain foods also cause this pain if eaten in larger portions ie peas, broccoli and nuts.

If you can, take someone with you to your appointments, GP and hospital, who can note what is said and advocate for you if needed. Wishing you all the best

[bev5779 in reply to 58goose]

HI, I phoned PALS yesterday at 11.30am they took everything down, said they would pass it on and i would be contacted by the Hospital next week or early the week after, they phoned at 3.30pm same day, took all the details, kept apologising about how i was treated, she said she would talk to each member of staff and tell PALS that the case is now closed. The call ended so quick at the end i didnt have time to think? now i wanted to ask if i will be contacted again or is it closed for me as well?

Bev.......

[58goose in reply to bev5779]

I think you need to go back to PALS to clarify what the situation is. At least you need a acknowledgement that errors have occurred, a written apology and details of what has being done to make sure this never happens to anyone else. Tell them you won’t accept less than this - you could always hint that you might have to take legal advice!

[bev5779 in reply to 58goose]

Thank you so much for your help, I'm just so upset over the hospital treatment and very overwhelmed by everyones kindness on here i cant stop crying today, I will phone PALS again on Monday, I struggle with sorting big problems out as ive no family left no friends where i live so having you lot on here is heartwarming ..

Thank you Bev.....x

[MsLibra]

Have they checked your gall bladder?

[bev5779 in reply to MsLibra]

I;ve gall bladder remover about 30 yrs ago...

[Lu11]

Have you had a CT with contrast to check for gallstones? My friend was having discomfort on and off and the only thing that showed gallstones was the CT scan! She just had surgery. Worth asking and checking 💓

[bev5779 in reply to Lu11]

I had Gallstones and had gallbladder removed about 30yrs ago.... x

[Couly1960]

I’m so sorry you were treated so poorly at the hospital! I’ve had PBC for 8 years and I have pain in the liver area a lot and this has been going on since diagnosed and it can last for days. I also get reactions from certain meds. I was put on a statin and had to go off of it because severe pain in my liver area. My doctor said that the pain is a side effect of PBC. I hope you feel better and recover quickly!

[bev5779 in reply to Couly1960]

Hi Couly, Thank you, sorry you have this pain as well, its awful isnt it, yes im back to normal, well as normal as can be..

Bev......