Hi, Jean64.

[breaveheart1964]

Great right up,,owe im new to the fleet,,

im told by my "GP"its stage 1,,,,,you wouldnt think it looking at me,,,well theres a lot of me.

my condition sufficed 9 months ago from testing,,,,i new therexwas spmething wrong fatigued akes and pains in joints and just genersly feeling tierd,,my byopcey confirms Auto Immune Hep PBC all the fsncey letters in the ABC calender.

my situation however developed from Blader Augumentation / Cystioplasty Medical procedure for Urinary Incontinence,,my situation was systemic over the yrs of self catheterisation taking more Antibiotics than tea.

the end result for me had been systemic infection prodominantley effecting the immune system therfore trigering the liver to react in the way it has,,,of course it was said under my operation there would be no life long future effects other than the odd infection.

you see my infections are caused from my blader ogumentation,,,the blader was made from excess Pancras which in turn when sealed to the blader growsxa mucase membrane i call this mucase as its cilified gel membrane that flows before the urine,,its this mucase that becomes sometimes traped even on flush out regularly microscopic particles become lodged within the blader / euritha its this point infection takes place,,,,i obtain also infections from catheter use weahter cilified or not wether the best hygiene practices are in place it matters not one csnt see what a microscope can see so,,,,i am always in danger of infection,,,,its ironic my euroligist didnt mention the longterm effects of infection on the immune system given that UTI are the systemic causation of Auto Immune Hepatitis also known as PBC

hope this little write up kind of gets infection in perspective further i hope GPs and consultants learn to tell the truth and give precise calculation of ones possition before going under a knife.

given they no about infection why is this so not readly available to be told of such issues,,,given Auto Immune Hepatitis PBC after all is a certified Death Certificate no matter whom signes it.

good luck guys and plenty of reserching because those consultants ant the full shilling and in straight with the patient from the word go what future prospects would be.

[AyrshireK]

Sorry you've had to join us aboard the good ship liver.

I think i'd be right in saying that some of the antibiotics regularly used in the treatment of UTI's have been highlighted as a possible trigger to people developing Auto-Immune Hepatitis.

It sounds like you have been give a diagnosis of AIH with PBC crossover - the two can often go hand in hand though they are in fact two different conditions of the liver.

Having AIH and PBC is in no way a certain death certificate though, both can be well controlled with medication - usually steroids at first to bring down the inflammation levels and then gradually this is phased down with a gradual introduction of some form of immune suppressant. It can not be 'cured' but many people live long and fairly normal lives once the right drug balance is reached.

Yes being immune suppressed you are at a slightly higher risk of infection though with proper hygiene and monitoring that can be reduced. My hubby is on steroids and has lost his spleen (and subsequently a large part of his immune system), his white blood count is too low for immune suppressants despite this he has caught far fewer colds and bugs than I have in the past few years so even infections arn't an absolute certainty.

My hubby has cirrhosis of the liver and has been through the assessment for transplant (though is doing so well at present that he has been removed from transplant list after 10 months waiting) - his cirrhosis is thought to have been caused by AIH but his cirrhosis showed its head before we even knew he had difficulties.

Even with AIH and cirrhosis he is no where near death's door, yes he is fatigued A LOT but on his good days he tries to live life the best he can - he was diagnosed in 2012.

There are other support groups for AIH and many members on their also have PBC crossover. They have a forum and a facebook page - lots of knowledgeable members and also very excellent links with the top boffins dealing with AIH in the UK.

Their sites are at :- supportaih.websitetoolbox.com/ facebook.com/groups/AIHorgUK/

I wish you all the best going forward.

Katie x

[Bolly in reply to AyrshireK]

As Katie says AIH and PBC are by no means a death sentence. I know of people diagnosed as teenagers who have lived normal busy lives - marriage, kids, career etc - and are still living those normal lives into their 40s and beyond. The diagnosis is a shock, but with the right medication you should be good to sail the seas for a long while yet.