PBC Foundation
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Eating issues

Hi I've been officially diagnosed just a year. I have the usual run of issues itching, fluctuating bloods changes to skin, hair fatigue & terrible weak muscles. However on the whole I've grasped it by the b..L's as it were take my urso and get on with life the best I can. However at the beginning I found for example Indian food or big restaurant 3 course meals sent me to bed to recover made me so tired & ill. Then alcohol did the same so I've been T total now since May last year & don't miss it. On the whole if I keep on a low fat healthy diet I'm fine. I've also lost 52lb (intentionally). However I'm now struggling with anything I eat I've had to reduce portion sizes and each time I eat it's knocking me for 6. I am walking around feeling as full as an egg constantly fluctuations of bloating & constipation. & I could sleep for England. I do most of my jobs in the morning cause once I've had some lunch that's me finished for the day. Has anyone found the same & do you have any tips? I don't see my gastro till December & I'm sure my gp thinks I'm a hypochondriac I daren' t go again. Help xxT.

7 Replies

Hi teddybear7

I often feel full but I have always had a very healthy appetite so continue to enjoy my food and consequently do not lose any weight! I get a lot of reflux which is better now that I am on ranatidine, I was on omeprazole but having read another contributor's comments on ranatidine I asked for a change. It is supposed to help with the itching but although the itching is reduced it has not gone however the reflux is much better.

I always come away from the GP feeling as if they do not understand the problem (not that I visit often and in fact had bloods done this year for the first time in about 4/5 years and I am no longer referred to anyone at the hospital) so I learn a lot on here and manage the best that can be done the same as many folk on here.

Being retired I do not have a problem with fatigue I just sleep when I need to which of course is often an afternoon nap :-) .

I would just say that other contributors have said in the past that not everything is PBC related so if there is more than one GP at your surgery and you can get an appointment with one of the other ones a fresh pair of eyes may just suggest something different. Also as a thought can you telephone the hospital and get your appointment bought forward December is a long way off for you to be concerned.

best wishes to you hope you sort it out


Thanks for replying much appreciated xxx


Hi, I have major problems with eating for long periods of time. It affects everything, energy levels, general joie de vivre and my ability to work. I was of sick - 25% - for a month and that did help. Now I can eat better most of the time and I have been able to exercise a little bit, which helps.

Go back to GP and explain how you feel - if there isn't something they can help you with medically, they can give you more time to rest. I am so glad the GP I saw listened and told me to rest. I have now been able to work full time for a month and I feel a lot better. I know it probably will not last but now I know that when I get that tired I really do have to rest.

Best of luck,



HI Teddybear

Like you I have fatigue and weak muscles. For the itching I now take Colestipal (two sachets a day) and an Antihistamine tablet at night. This has reduced the itching by half although I do itch pretty badly at night still and I have little scabs on my body particularly the back, neck and chest. (not a pretty sight!!!) I have tried two other types of medication to alleviate this so do not give up.

Also I do all my work in the morning as by the afternoon I feel so tired and usually have a sleep. Lucky for me I am retired and can do this.

I only have small meals as a large meal can make me sick. A shame as I enjoy my food. Now it is quite bland. On the good side I have lost 10lb in weight which is not a bad thing for me.

I do go for a daily 20 mins walk if the knee holds out as I do have osteoarthritis and am due for a total knee replacement. Hence also the need for a weight loss.

If I was you I would try and get an early apt to see you consultant, after all they are there for you. Write a list of what you want to ask him, however minor it seems.

I know this can all seem so stressful so try not to worry.

Good luck and take care.

1 like

Colestipol works well for me also I also am prescribed to prescription strength Nexium 2 x daily which makes a huge difference


Hello teddybear7.

Easy to feel disheartened with this PBC lark but I still think if you have only been on urso a year you are still what I would say early into it all. I say this because I started taking urso Dec 2010 after starting to itch March that year. I think I was expecting over time things would improve but for me they took longer than the year mark.

In all honesty I'd say that it was gone 2yrs on urso before I started to actually feel I was making much more headway. This despite improving bloods. I think it takes the system longer to make much better recovery after taking urso and some thing are trial and error .

I found myself after I was around 35 I naturally started to cut back on food portions and sort of tapered off as the day went by. I was 45 when I started to itch. I have put my food intake down to changing hormones and when I thought about it, I did realise that over the years certain times in my own monthly cycle I could eat for England for a period of time and then another didn't feel really hungry. I still go through these phases now but I started going through the menopause just over 2yrs ago so I put it partly down to this too.

I think as long as you are not seriously losing weight due to changing eating patterns I'd not be overly-worried. I know myself if I was to not eat anything all day (I did have the odd day in my first 2yrs after diagnosis of getting down and wouldn't eat all day, then due to it not take the urso that day either), I can lose around 5 pounds in weight. I find I haven't gained any weight since not long after diagnosis due to the fact I itch at night and spend a lot of the early morning hours fidgeting about thus burning energy.

I found when I started on urso I got constipated, something I never had a problem with prior to taking it. I compensate with additional fluid and also slightly more dietary fibre.

Never been one for any take-aways but I will make my own curry (usually chicken) and rice, trying different ones. (Found I like the Thai and recently not exactly curry but Morrocan tangine.) I can see at a glance the ingredients on a curry sauce jar and I have to say that for me I don't have any repercussions following the evening meal but I do not overfill my plate so I am not feeling really full. I still think that foods cooked with less additives, that bit less fat and sugars are quite good.

for me on the alcohol score I chose to not bother after my first abnormal bloods early 2010. It doesn't bother me not drinking as I was never that much of a drinker pre-2010, it has been up until the last 6 months everyone else who has got to me over alcohol. People seem to assume in a drinking environment that everyone has to have a drink and that saying, "One won't hurt you" can come into being. I haven't said I have a liver disorder to any close friends I see often, find it easier not to bother.

Apart from feeling tired in the afternoons, usually around 3p.m. due to broken sleep at night with the itch, I don't have fatigue I did have back in 2010 (that vanished at some point in 2011). But I do find myself starting to wind down by the evening meal and around 7p.m. I often find that I don't want to be bothered as I start feeling fidgety with the pending itch later in the evening so it doesn't make for being in a good mood most of the time.

I choose to ignore my GP. She seems to be the panicky one to me! I got registered under my current GP as she was the one who I had to go in to see when I was a new patient over 2yrs ago now and seem to be stuck with her. Unless I am really worried about something I don't bother saying how the itch is when I see her. I've mentioned it before even to the hospital consultant in the earlier days but no-one has mentioned there are medications you can try. I don't want any but I would ask if I did. I think certain doctors check the bloods and ask how you feel and if everything looks to be in order at the time then other symptons we encounter from PBC are just sort of forgotten about.


Another thing is u may try different foods that you don't normally eat as the disease progresses your body needs different things, things I normally ate I can't and things that I hated are now staples in my house.


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