She has been on urso since the diagnosis? Is that part of the disease or a side effect ot the medication.
my mother was diagnosed nearly 4 years ago.... - PBC Foundation
my mother was diagnosed nearly 4 years ago. since then shes lost a lot of weight and goes days with out eating. is this normal?
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korrie
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hi i woz diagnosed bout a yr ago and ive read on here that alot ov people have put weight on but im like ur mam im losin weight and can go for days witout eatin ne thing i no this prob dont help u but at least u no shes not the only 1 thats doin this
Some people with people do lose weight Korrie, it depends on a lot of things, Remember though, not all symptoms are to do with PBC, lots of us have bowel problems and other gastro intestinal issues, and it might be worth asking her doctor if there could be another underlying reason for the weight loss. You can make sure she is eating a nutritious diet, maybe asking for a dietician to see her could be the answer, she could give some tips on the types of food she should be eating or have supplements prescribed if the weight loss is very drastic.
Little man, my appetite is poor too, but remember you need food to give our cells the energy to regenerate. The Liver is an amazing organ and will try to repair itself until it can do so no more, but our bodies need nourishment for this to happen. If you don't fancy sitting down and eating a meal, at last snack throughout the day. This is really important.
I loose wieght as well and have lost seven and a half stone and now it seems to have settled at that and i do eat quite well but there are odd days when I don't want to eat or can't eat as my stomach is upset, I also get a feeling that my stomach is full of bile. XX Linda
Hello Korrie.
I've been diagnosed with PBC for 2yrs now. It was only when thinking after diagnose, I had lost weight in 2008 previous to starting with the itch in 2010. I was informed I probably started with PBC a few yrs prior to diagnose. I never thought anything about it as I was working Mon-Fri in a part-time job that give me 4hrs daily of running up and down stairs (manual job, domestic) but a few of the staff where I worked noticed. I hadn't been dieting and felt quite fine.
After diagnose and starting urso I have found that I've not lost anymore weight but early days of urso I did suffer from a couple side-effects of the drug (bloating and heartburn) and odd days I got a bit down about taking the pills and think now I was catching up on lost sleep so odd days I wasn't eating. I noticed if I had a day back then of doing this (not done this in quite some time) I would lose about 6lbs in weight in just one day.
I have found the best way to eat with this PBC thing is to eat little and often as opposed to a large main meal. Unfortunately for me I have a son and husband who work regular days and we have an evening meal together. I know for a fact that for me that can be the worst meal of the day as throughout the day I tend to eat more snack-sized portions so I do not over-face myself and end eating when I feel I must do so.
Also finding high energy nutritious foods can be a boon I find. I have found a snack bar made of mainly dates recently in Boots in town that is a high energy bar meant for ramblers/hikers which I have been finding a bonus to me. I pick one up when in town and normally eat later on in the day. I think a lot of our nutrition now has to be more quality than quantity.
I'm a believer now with PBC that a diet that is lower in fat is also of some benefit. There are a lot of foods out there that are quite high in calories and nutritious as a lot of people mistrue as meaning foods to put weight on have to be fried or sugary.
in reply to
I just want to add, that a lower fat diet is good, but we should still consume "good" fats as in olive oil, pistachio nuts, walnuts. My appetite has lessened, but I do graze all day long. As far as the evening meal goes, I just put less on my plate or save half for eating later as a snack. When eating out, I always ask for a "to go" box and immediately put half of what is on my plate in it. That sure does help with avoiding eating too much and feeling it later. Please private message me the name of the snack bar. I tend to eat something every 2-3 hrs. I remember when my kids were small I always had snacks in my bag for them, now I carry snacks for myself. lol Judi
Yes I agree there, forgot to say that healthangel, good fats.
I buy an oil for cooking that requires a little and it is rice bran oil, cholesterol free and apparently Australian company (I am in England). I used to buy extra virgin olive oil and use that until I did read somewhere that it's not as good heated up, better for drizzling on side salads, etc of which I do not have (I don't like mayo (bit of salad cream mixed with tinned tuna, salmon or egg - AND it is less calorific fatwise than mayo believe it or not) so side salads for me aren't something I will partake if with a dressing, prefer a salad plain with no dressings.
I will do my best to either think of the name of the snack bar (it is one word) or message you with the details (healthangel) and perhaps their site as expect they have one.
In the past I have always had snacks in my bag and even do now. My husband and I are walkers of a weekend, vary it local or seaside. I fill my bag with fruit and the odd small chocolate bar.
Thank you all for your input. I'm trying to understand this disease to help my mother. I truly appreciate everything. Any little thing helps
Hi there I dont think the weight loss is down to her being on urso maybe more to do with her liver working very hard so her metabolism may be faster and therefore she cannot maintain her weight. The other thing is she could be a bit depressed or have a lot of gastric problems that make her eat lot less than she should do. Whatever is causing this degree of weight loss needs further investigation, get her to tell her hepatologist about this or if long time between appointments get her to go to Gp and suggest you go with her to see what he thinks and prescribes. Only times I have lost lot of weight since diagnosis in 2002 was when my liver was going through a bit of a crisis but pleased to say bounced back from this and now concentrate much more on my diet and on weight maintenance rather than worrying if am couple of pounds over my usual weight as I too have days I cant eat a lot. Hope this helps.
