How do I put weight on!!!: Morning all... - PBC Foundation

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How do I put weight on!!!

gracesofia profile image
15 Replies

Morning all. Quick question. I am on URSO 900mg a day and loosing weight . I can eat loads during the day (good or naughty food) and still loose. Can anybody give me any ideas on how to put weight on? X

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gracesofia profile image
gracesofia
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15 Replies

Hi there,

Sometimes later stages of PBC, the body can suffer from malnutrition as we don't absolve fat from food and then we loose weight. I am in the same boat. As soon as I eat, it goes straight through me. What I have done is buy Nestle Resource fruit drinks which are 250 calories each and try to have at least two of them a day to make sure that I am still getting good calories and all the nutrients I need. If you don't like the Resource drinks you could also try hospital formula Sustagen (I love the chocolate flavour). I have the Sustagen in a glass of milk and that helps me to not loose too much weight while I'm waiting for transplant. Hope this helps :)

Jo x

Hello.

Me too has actually lost around 10 pounds since I started with the itch in 2010 and then was diagnosed with PBC towards end of that year.

My weight though has maintained itself at around 8 stones 12 pounds (I'm 5 ft 2 inches tall).

I try to eat healthily like I always did and I don't count calories, quality is best I think. I don't bother to wonder about certain things now but I am not getting paranoid about it either as I am at present pretty much fit.

I take 2 of the urso per day and also a milk thistle daily. My theory is that I'm pretty fidgety from later at night and during the night, especially if I wake up which is normally around 1 to 2a.m. and then I feel the itch and toss and turn until around 4a.m. when I just drop back off to sleep. I try to get up early as normal (6a.m) daily and keep going throughout the day in the hope I can sleep at night. I don't like sitting for long periods as even tho' I am a night time itcher, I can feel prickly at certain in the day when motionless. I think I burn off what I have consumed during the day at night and the early hours of the morning due to moving about which is caused by the itch.

I was wondering today whether to pick up some shake-type powder and drink that in-between meals to top myself up. I personally wouldn't want to lose anymore weight as I don't think it would do me much good.

I was looking at something like the Slim Fast which has been debated on here previously. Ingredients look ok and the tins of shake powder would be pretty good in-between meals I think. I know you can buy Complan but I've tried those back in 2010 and early 2011 when I was feeling pretty fatigued back then and early to urso but I really do not like the taste of those at all.

supergirl303 profile image
supergirl303

Why have I put weight on then ha??? I have gained 20lbs since being diagnosed but I put that down to no longer being active. I stopped my URSO though and I have heard a few people also gain as much as those who loose.

in reply to supergirl303

Yes, apparently it is said (PBC Foundation mention it) that some with PBC on urso do gain weight, others lose.

I still think the reason could be due to if you are unfortunate to find you aren't as active as you used to be with being fatigued all the time suppose it figures there could be a weight gain but also if you are on the move all the time due to itching then that could probably be the reason some of us lose it.

There could be other reason I understand but I think some of us know why. I know I'd like to regain around half a stone and it to stay on as a lot of my clothes now are starting to look a pit, well bigger on me these days, especially skirts in the waist. Although according to the latest BMI charts that have apparently been changed now, I'm coming out that I am on the 'overweight' line! I don't take any notice of things like this, I think one knows themselves. I was also reading that the health powers-to-be have just come out with a statement that it should be calculated in terms of waist measurements to height ratio now so I seem normal.

I do think at the end of the day regardless, anyone with certainly conditions that are never going to really go away should look at the quality of what they are consuming along with trying to adjust lifestyle as opposed to really bothering about dieting. I am now trying to forget about the half a stone roundabout that I have lost since I started on Urso Dec 2010 and as long as I can maintain my bloods adequately that'll do for me as presently I do not have an overly-bad lifestyle. I'd rather make the most of life as possible at the moment as no idea as i continue to age what the future really holds.

I struggle to keep weight on too, having said that I have a very strict diet and avoid fats as they cause liver pain and go straight through me. I have lost over a stone since diagnosis in November.

gracesofia profile image
gracesofia

Hi supergirl. Have you noticed a diffrence in your weight since stopping the urso? I have heard it can make your weight fluctuate either way. This pbc has alot to answer for. I am having a really really grumpy and tearful day today. Nothing right and hate how it makes me feel. Yesterday was fine and sure tomorrow will be okay. Sorry to moan peeps x

NaeNae profile image
NaeNae

I've gained weight too! Been on urso for a little over a year and have gained 20 lbs. ugh!

LindaRose profile image
LindaRose

Sounds like you are on a huge dose of URSO as you should be on around 10mg/kg.

You could bulk up carbs, keeping your fat intake down and eat litle and often. Get your doctor to refer you to a nutritionist

in reply to LindaRose

I was prescribed 10mgs per kg of body weight back in Dec 2010 by the hospital consultant. He said that was the usual to start a patient who has been diagnosed with PBC.

I have read that some debate and say 15mgs per kg body weight but from what I have read quite some time ago now so can't say where I did read it but it was following some research on Urso several yrs ago now, it was found that it didn't actually make much difference really.

I was reading about overdosing on the tablet leaflet and though someone with PBC wouldn't actually feel ay side-effects with having a compromised liver and bile flow, stated that an excess bile unused tends to go out with faeces. I've wondered at times if this makes sense that some with PBC suffer with diarrhoea.

I've not actually had this problem since starting Urso, quite the opposite at times in fact.

The strange thing is though I still think days when I don't itch much and feel just right, well normal like I used to do pre-diagnose, I think I've somehow had the right balance of foods to balance out with the Urso but I've yet to figure out exactly how I did it. I know Urso breaks down cholesterol as it was originally dispensed for gallstones made of this but I still try to limit a great deal of fat daily due to having PBC now.

June9961 profile image
June9961

Im on 1500mg of urso a day and I have weight gain. Diagnosed with pbc for 15 years. It doesnt matter what I do I cant shift the weight. I dont have the severe itch but I have the severe fatigue and body pains. I used to run, take martial arts class and was always on the go, up until 4 years ago. Once I was no longer able to do the things I was able to do the weight started piling on. My consultant said to try and lose weight but I probably wouldnt be able to because of the pbc. My weight has now plateaud and I have decided that Im lucky to be alive and despite the pains and the fatigue I have got off lightly. :-)

trojas profile image
trojas in reply to June9961

I feel ya. I have gained weight too, but seems to stay the same give or take a pound or two week to week. I MISS MY ENERGY. I somehow still manage work and I give one horseback riding lesson a week, but no longer play with my horses after work, or do much of anything for that matter.

LindaRose profile image
LindaRose

that's interesting peridot, when I was on Urso before my transplant I always had the runs and gained weight although the consultant swore they were not related! , but this time around I haven;t !! I think it's almost impossible to work out what makes us feel better some days than others, weight gain, weight loss, we are all unique

PamRopp profile image
PamRopp

I think that URSO can affect each of us differently ~ just like PBC can cause different symptoms in each of us.

suemac1 profile image
suemac1

Hi I am on urso an have been for over 20 yrs an i cannot put on weight i eat all the time but when went to the transplant unit the thought i was suffering from malnutrition my hubby was fuming as he sees i eat all the time but for some reason i cannot mainten the weight my docs tell me its the part an parcel of the illness everyone different so now i just except the fact that i am designed this way lol i have tried everything going to gain weight but nothing has helped so i just think its your bodys way of dealing with things i dont panick now i just eat as often as i want an try my best to continue to put on weight if it happens great if not well i dont stress i was getting obessed with putting on weight sometimes you just got to except what you are good or bad , dont make it an issue or it will take over your life it nearly did take over mine

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