Frustrated

[ILik3Pizza]

The only "benefit" I have found in the PBC literature is weight loss. True to form, I've gained 10 pounds in the six months since my diagnosis! Sigh. Anyone else experience this?

[Angel_b]

mines is fluctuating up and down by 4lbs! Only 2 months on urso. Got to laugh the consultant told me "go on low fat low calorie diet and plenty of exercise. Don't put on any weight" whilst he gave me the prescription. Then when I read the leaflet it said that most people put on 6lb in the first year. Can't win lol

[ILik3Pizza in reply to Angel_b]

I have to laugh about "get out there and exercise!" I count it a "win" if I can remain vertical for more than an hour. I'm so grateful I'm retired; I can't imagine functioning in the workplace with this level of fatigue.

[Angel_b in reply to ILik3Pizza]

must be awful. I have the odd day every now and then when I am exhausted and can't really do anything but sleep it off. Didn't realise what was causing it before but makes sense now. Must be terrible if its ongoing.

love the name by the way. Mines should say 'i like chips'

[ILik3Pizza in reply to Angel_b]

Chips! Love the salt followed by chocolate! Does that constitute a balanced meal?

[Angel_b in reply to ILik3Pizza]

sounds like the perfect meal to me lol. I've resorted to having a night a week eating whatever I like. Keeps me sane.

[cfsummerford72 in reply to ILik3Pizza]

The struggle is real. I would rather take my lunch break and carch a nap instead of eating. The fatigue is so bad i get the shakes from exhaustion. Then dealing with the stress of workplace. At the end of rhe day i just want to fall into bed to forgot how much pain my body is in.

[Hidden in reply to Angel_b]

Hello Angel_b.

I think it wise that we do have a low fat diet with PBC due to bile being required for breaking up of fats mainly.

I used to eat this way pre-2010 and have continued since diagnosis. I do have a bit of what I fancy from time to time, life wouldn't be worth much if I didn't! I've not gained any weight in the time I've been diagnosed and I haven't read anything about gaining it 'in the first year' though but have read it seems to vary from patient to patient with PBC and weight from reading this site over the years.

[Angel_b in reply to Hidden]

Hi peridot

Think you are right about being better sticking to the low fat diet. I do sometimes feel more uncomfortable when I eat something high in fat - like chips unfortunately. Its funny because before all this I enjoyed having a few drinks but don't miss alcohol at all and I gave up smoking 2 years ago. But struggle to keep up the will power with food. I am sure I will get used to it but may take me a while.

[Hidden in reply to Angel_b]

Hello Angel-b.

I have found that eating foods that might have a fat content (ie chips though I don't consume much but do once/twice when on a holiday away for the week) best eaten for lunch as opposed to teatime. I think my way of thinking is that during the rest of the day I am active so digestion is probably that bit quicker and it might alleviate the itch somewhat late that night.

[Angel_b in reply to Hidden]

thanks peridot.

that's actually a great idea. I need to motivate myself - my reward could be going out for an unhealthy lunch now and then. Maybe I should think more on the lines of a treat once a month rather than once a week.

[Hidden]

Hello ILik3Pizza.

I've not read anywhere re weight and gaining it with urso but it is said that some can, others go the other way.

I haven't gained an ounce since being diagnosed December 2010 aged 46. I did lose a bit during 2010 and been taking the urso now for over 6 years. I have found in my case probably due to having the 'dreaded itch' of PBC and it being late at night and lasting until around 6a.m., with all the fidgeting and getting in and out of bed a few times during the night due to it I am burning energy that way.

It is more than likely we can gain weight with PBC and taking urso due to a better biliary flow and digestion.

[Jowen]

I certainly have. It's no getting to a point when I must join weight watchers and do something radical. I really don't eat much, food doesn't taste much anymore. But I must be eating the wrong things because I keep gaining weight. It's also true that I am not able to exercise like before. I suffer from recurrent anemia and when the iron is low exercising just doesn't do anything for you. My biggest problem is finding the energy to eat right and exercise. I still work full time and even though I'm a lot better now than when my PBC was discovered I still need to rest a lot.

I have thought about stopping taking urso for a while just to see what happens but then I realize it is a bad idea. But it is horrible not to feel in control of your body!

[teddybear7]

I hope your not serious, i would have been totally lost without the information that i have been given by the PBC foundation. Not only have they educated me, they have cancelled out my worry panic & anxiousness, as now i have a plan for life when i thought my future was grim. I am slowly getting my weight under control, eating far more healthy & since I've started, even a small, slow walk 2 or three times a week my fatigue is even feeling better. Exercise doesn't have to be jumping about in a gym or running a marathon. So i have to disagree with you the benefits are there to be grabbed. X

[hotdog]

I have put on 10lb as well since I started urso a few years ago. I am conscious of what I eat but does not seem to make any difference. Therefore I have now accepted that this is the weight I will stay, just had to buy clothes a size larger. I also have O/A in my knee and shoulder which causes more pain. I do try and walk one and a half miles a day plus housework and still do my gardening which I love so feel my exercise level is at its limit. I have now reached the age of 70 so accept life as it is. When I see the illnesses some people suffer I think we are lucky just to have PBC. Like most on here I do get overcome with tiredness and just have to have a nap in the day. Luckily I am retired and can do this. So as the song goes "Don't worry be happy"