Not well

[Alley27]

Hi I am sorry I have n't been on in a couple of weeks but have been trying to sort an appointent out with a consultant re the AIH/PBC, but nothing yet. I am going to see my gp either Mon or Tues and will ask to be referred somewhere else.

This said I feel so unwell today ans I don't know if it is the AIH or PBC. I have terrible fatigue, feel weak, have some kind of stomach thing going on as well. Painful when I eat, painful when I drink, I have had runs and yesteray intown was almost cut short. This has happened a few times before but not to this extent. I am also very thirsty. The pain is upper abdomen all across, I am bloated and am not hungry at all and the burping is awful after every thing I eat. I am living on cuppa soup and live yogurt at the moment.

I just feel so unwell and am worried its a worsening of the AIH PBC. I have not yet managed to get an appointment with a consultant because Pinderfields don't have one who specialize in these two complaints.

My friend suggested it may be IBS or something similar, I just know I feel unwell andit's very different. It does not help that I have not been able to eat well for over 3 months now due to circumstances.

Does anyone know if there is anything I can take or do to ease this off please I am at the end of my tether this has been going on for two weeks now.

Thank you so much for your help

xxconniefused

[susanburgess]

I live in suffolk the hospital i go to is addenbrook in cambridge dont know if you live anywhere near here if so maybe you could be referred. have you phoned pbc foundation to see if they can help sorry you feel so unwell hope this might help

[sooo in reply to susanburgess]

Hi Conniefused. I have had several bouts of the exactly the same thing , my G P said it was IBS ! I also go to Addenbrookes as I live on Essex/Suffolk border, my last visit 3rd September I ecplained this and he told me to watch how much fat I eat. I have been doing this and yes it's a lot better. Also if I get worked up about things it's wirse so maybe a bit of IBS and fat ? Good luck hope you feel better soon Sooo x

[Junolee]

Sorry to hear you are feeling so bad. You poor thing. I hope you get treatment soon, hopefully your GP can help. As a matter of interest have you been tested for coeliac disease?

[NotorDJP]

I had a bought of loose bowel a week ago, but it was my own fault. Ate at a fish and chips shop and the fat nearly killed me. Hope you find a solution soon!

[Jackie71]

Think you need to look at what you are eating it really does make a difference. Anything that comes in a packet needs to go in the bin and that means the cuppa soups. I know they are easy but try making your own soups. Everyone is right when they say avoid fat. I find eggs and fish work well with my tummy. To be honest even bread needs to be used only once a day if you can't live without it.

Hope you feel better soon it really is trial and error until you find what is right for you.

[Alley27]

Hi and thank you all for your replies. I feel a bit better today but only because I have not eaten for 24 hours. I think it is possible I have a bout of IBS and until my friend mentioned it, and you guys did also I think more so. I was on treatment for IBS before diagnosis in 2012. The hospital took all my medication away from me and changed it, they did not give me anything for the IBS though and the AIH/PBC has seemed to be the only are of interest to my gp.....because he does not know what to give me or how to treat me. He said to ask my consultant....I said ok. but you need to find me one first lol.

I also am aware diet plays an important role in health especially with something as acute as AIH/PBC overlap but we have been on benefits for 3 months now and cannot afford what we used to so we have to eat crap really...I know and benefits don't take health into account....My husband got another job on Monday so things should pick up soon provided we can get a little help with rent etc. I have been tested for celiac diusease and it was negative but I was eating gluten free before my hubby lost his last job..on benefits we could not afford to buy the gluten free items I needed. I eat bread very sparingly as it is.

One thing I did try starting Sat was probiotics and I believe it is that which is helping me. Thoughts are that if I am taking steroids and cytotoxic drugs, then there will be no good bacterium left in my gut so the solution is to replace them. I am trying this to see what the outcome will be ans so far it is helping.

I live in West Yorkshire and my nearest hospital is pinderfields, they don't yet have a consultant for me so tomorrow I am going to ring them yet again to see if I can at least see a gastro person then get a referral to either Newcastle or Leeds. I want to stop the mercaptopurine medication. It is a cytotoxic drug used to treat lukemia. My hair is slowly thinning and I do not want or need that. My gp said they can't mess with my meds a consultant has to do that....which is a laugh at the moment lol.

I just need to sort matters out because everything is taking a toll on my body and am fed up, I just want to treat these diseases the best way possible so I can feel well, and enjoy life.

Love conniefused xx

[kizzy40]

Have you ever had a helicobactor pylori test? Just a thought, I had the belching and bloating and it was that once treated it stopped. I wish you well.

[luxe66]

And watch salt intake. Its very importanT. Aggravates PBC