Do’s don’ts or tips: I’m Jillian I have... - British Liver Trust

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Do’s don’ts or tips

Jilly-65
Jilly-65

I’m Jillian I have auto immune hepatitis I’ve only recently been diagnosed, I had an op on the 20th Nov to have a mass removed from around my bowel area and an ovary and Fallopian tube. I have rheumatoid arthritis, hiatus hernia, gallstones, diverticulitis and spinal spondylitis. I’m struggling with some nerve damage to my left leg as the mass was wrapped around nerves. I’ve graduated from a wheelchair to a Zimmer frame and I’m now doing ok with crutches although I’ve face planted a few times 🤪. I’ve got my first appointment on the 23rd Jan to start on some treatment for the AIH,, hopefully I’ll learn some good tips from people on here,, cheers if you’ve read this far lolRead less

14 Replies
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Hi Jillian, I hope everything went ok when they removed the mass, do you need to wait for any results? I was diagnosed with cirrhosis in june last year but was finally diagnosed with autoimmune hepatitis this Wednesday. I am waiting to start on the appropriate medication but my hepatologist has just left the hospital and there's no other hepatologist yet although a new one is due to start shortly. I have a hiatus hernia, underactive thyroid, gastritis, a bleeding duodenal ulcer, fibromyalgia, anaemia, type 2 diabetes and osteoarthritis in both hips and my left knee 😱😱😱 I had my gallbladder out in 2009 it sounds like we wouldn't make one healthy person between us. 😄 welcome to the forum, it's a lovely, friendly place to be. Deb

Hidden
Hidden
in reply to GrandmaDylan

Oh debs debs debs what shall we do with you? ☹️

Hi Jilly-65

Welcome....sounds like you been through a very tough time, you will get lots of support on here, fingers crossed re your recent operation.

I too have autoimmune hepatitis and fibro I’m on steroids at the moment for my liver and a lovely side effect no pain from the fibro, no idea why but I’m not complaining.

Hope it’s not to cold for you at the moment, wrap up if you go out

Good luck

Lilybug

When I was taking prednisolone for suspected polymyalgia a few years ago the side effects were horrible but I had energy, no pain from fibro and could walk up hill and up stairs...I felt like a normal person but as soon as I stopped taking them I was back to being in pain with no energy. Enjoy it while it lasts. Deb

This is what I don’t understand I have spoken to quite a few people now who have fibro, they have said the same been prescribed steroids and then no pain surely the fibro specialist need to start listening to us

Yes I am enjoying life pain free for the moment

Lilybug

Hi Jilly, if you want a more specialized source of support and you do Facebook at all there is a fantastic page on their run by fellow AIH patients and supported by some of the top boffins in the UK working in the field of treatment and AIH research. There are over 1900 members and they even have regular get togethers at London and Birmingham plus smaller groups meet socially around the country. It's a great source of support, advice on all the different treatment options and a good place to rant too with people who understand exactly what you are going through.

Page is at :- facebook.com/groups/AIHorgU... (if you are interested in joining the merry band).

Katie

I'm on the Facebook aih group and they're very helpful but I still prefer this forum.

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Hi jilly welcome to this fantastic forum (there’s a name for two words that go together like that but blowed if I can remember 😁)

You really are going through the mill ☹️. I've got some similar issuettes but nothing like yours ☹️.

Got spinal spondylitis (not sure definition of this but been told spinal chord is impacted and also arthritis is in there somwewhere 😁). They were going to operate but now I’ve got to wait 8 more months, i.e a year post TP.

Diverticulitis yes, hernia yes (trivial compared to other probs says doctor 😁👍), also got diabetes type 2 plus insulin, hypertension, hyperthyroidism, and other trivia 😁. But, in fact TWO big buts, I can walk pretty well as long as I get codeine down me and I had a blessed (not the bad way of saying blessed but the good way 🙏) transplant which eliminated so many other problems. I am, indeed a lucky lucky man!

So not sure that I can give you any tips (glad you used that word - we are not “allowed” to use the word advice on here 😁) but can relate a few experiences - at length (as others may testify to 😁) - if it would ever help.

Good luck to you jilly. I really wish you well- especially with the walking...

PS your post was easy to read - you should see some (of mine 😁)

Miles

🇧🇧

GrandmaDylan
GrandmaDylan
in reply to Hidden

Pot, kettle 😳 Miles.

You're in as bad a state as me. Deb

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Hidden
in reply to GrandmaDylan

No I’m not Deb - not brilliant but coulld be a lot worsre. This bessed ippad iinthbadwy 👎🏻 Meesing abooutaagghhh

Wass71
Wass71
in reply to Hidden

Its alliteration you're thinking of - fabulous forum!!

Stay well.

X

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in reply to Wass71

Hi wass - yes thankyou.! My fantastic forum is an alliteration as is your fabulous forum. Maybe even better would be formidable forum 😁 but who cares - I don’t 😁 It was the word alliteration I had forgotten -and probably won’t be able to remember tomorrow either hehe 😁

Miles

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Wass71
Wass71
in reply to Hidden

I have the same problem, I know I know something, I just can't remember it!! Or maybe I'm forgetting that I don't know something!?!?

Grr its a frustration.

Hidden
Hidden
in reply to Wass71

Wass - Yes a big one.

BUT you remembered alliteration - so not all bad 😁

Miles

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