Pbc diet?

[bronnieduffy]

Hi I was diagnosed 2 years ago but I only started Urso yesterday, I've got other medical conditions and I'm currently receiving vedolizumab for UC! As a result of different meds for my UC my weight has gone up by 2 stone. The fatigue is chronic I was sleeping constantly and itching profusely!! I've no energy but I'm trying to to force myself to get up and about however difficult! I need to become as healthy as I can but I would just like to find out what food other sufferers eat! Do u follow a specific diet? The urso has been making me very nauseous and my stomach swelled up, has this happened to anyone else? I really want my life back this past year has been hell. I've been existing rather than living. I find that PBC isn't well known in my town by drs which hasn't helped!! I'm glad I've found this because it's got more info than all of my drs combined!

[Skypony]

Hi bronnieduffy, welcome to the forum! I hope you get the support and info you need here, and do also join the excellent PBC Foundation.

I'm so sorry to hear that you have several challenges to contend with, but it's good that you've now started taking Urso. The side effects may subside, mine certainly did, but try starting on a lower dose and build up over a few weeks to your prescribed level and see if that helps. It's early days, so don't be discouraged. There are medicines that you and your dr could discuss for the itching - Ursofalk doesn't generally help with this, although I know at least one contributor who has found that it does.

Well done for making yourself stay active! I know it's not easy with fatigue, but it seems to be productive. Regarding diet, personally I just eat a healthy low fat and low sugar diet, with a multivitamin tablet every few days. I don't think there's hard evidence that special diets help PBC, but individuals generally work out what suits them best. Obviously avoid alcohol where possible. Oh and coffee appears to benefit the liver, according to research!

Best wishes.

[Shulsey]

Hello, I too suffer from UC & PBC. Im at stage 4 with cirrhosis & small varicies. I see my GI specialist who is close to home but I also see a heptologist who knows the ins & outs of PBC. You should try to search for a heptologist from a university hospital. Mine has been excellent. My diet isn't really strict I keep the red meats at a minimum & my hep Dr says too keep the sodium intake under 2000mg daily. Keep sweets & all that fun stuff we like to have at a low minimum. Plus drink lots of water. The side effects from the Urso will die off eventually though I still itch at night. I have issues with keeping weight on. You'll find as you read the posts daily that we tend to handle things differently in the states. But it's somewhat the same also. There is a ton of information from these lovely people on this site. But always remember, we aren't doctors. Always refer to your specialist about issues you're unsure. You'll also find that the support from this site is awesome because PBC isn't very common.

Stay strong & keep fighting❣️

Shannon

[bronnieduffy]

Thanks for the reply 😀 it isn't a very common disease so it really helps to get the opinions and challenges of others!! I've had UC for 17 years and I couldn't keep weight on but since I've been trying to find a treatment that works I've had all sorts of effects and the weight has piled on. I'm already on meds for the itch which really is unbearable and it's not really helping. I can cope with a lot but I'm finding the. Chronic fatigue just debilitating. It really has affected my mental health and as a person who has always been active I'm finding it hard to accept. I just have been floored by it. I'm glad to have found this group! Thanks guys 😊

[Shulsey in reply to bronnieduffy]

Yes, the fatigue is debilitating to say the least. Just tow years ago I was a very active mother of two girls with two boys from my fiance. Try to, as hard as it is, stay a little active. It will help in time. I still have the crazy fatigue, but with the kids & all the sports I have no choice but to keep pushing. Prayers for you to get through it daily. I know it's a struggle, but we must live.

[butterflyEi in reply to bronnieduffy]

HI bronnieduffy

If you have not already joined the PBC Foundation it is worth becoming a member. Free to join the members section has a wealth of information. The Bear Facts magazine had an article on itching by Professor Neuburger. I think it was spring 2015 issue. Like you I am an itcher, I am prescribed colestyramine (Questran and Questran Light) and Rifampicin (Rifadin). I have previously tried anti histamines which worked for a while and Naltrexone to which I had a bad reaction. Although the medication has made a big difference to the itch I still find it worrisome. A 2% menthol cream as a topical application is helpful but it is only a temporary measure. When all else fails I get out the ice!

I followed a webinar held by the PBC Foundation some time ago (video footage of this is also now on their website) where itching and fatigue is discussed. I found this very interesting and now use one or two of the tools suggested. One of these was to use You Tube to listen to guided meditation. I have found Jason Stephenson's voice suits me so I listen to relaxing tapes which are uplifting. I have found them help my mood. I only suffer the PBC fatigue from time to time so when I am good I get on and do things and when I meet the brick wall of fatigue I let it wash over me. Stress is not good for us so now (I am retired so no pressure) I do not castigate myself for not doing things although with grandchildren there are occasions when I have to push myself. I have found though that a bit of "doing" of something I enjoy each day helps to keep me balanced.

There is no specific diet recommended for PBC but many find what irritates and what is good by a process of elimination. For myself I have a mixed and varied diet but have reduced red meats to about once a week, salt and sugary products and cut out fizzy drinks. I have increased the amount of fruit and vegetables and in the summer have a lot of salads. In the winter I like to make my own soups. I drink a lot more water to keep well hydrated. In the last year I have lost over a stone in weight by cutting out carbs and filling up on protein.

best wishes

[AngelaBarron]

Hi there,

Welcome to the PBC world! I'm really lucky and respond well to URSO without an itch but really feel for you. My Mum had the itch and all sorts of other problems but was never diagnosed. Looking back I feel sure she had PBC too. I was at a conference a week or so ago and the advice from the specialists there was to eat a healthy diet, low fat but with a balance of good fats, cut out too much sugar and avoid artificial sweeteners and processed foods where possible. I take a vitamin D supplement too very day to help with calcium uptake.

Do join the PBC Foundation, the advice and support is really helpful.

Try to keep up the exercise, it's incredibly hard but it does help in the long run.

Take care of yourself.