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.....