Nutrition and PBC

[Mellynelise17]

Hello, I am a 38 year old Mother of one from Ontario, Canada. I am currently under investigation for PBC and was recently in the ER with sever back and abdo pain but Drs have no ideas why as all my tests were “normal”. Ultrasound showed 2 hematomas, enlarged liver but ducts were fine. I literally have all the symptoms and the itching is driving me completely insane. I have bruises and scratch marks everywhere! I am on URSO and cholestyramine at the moment. I have an MRI book for next month to confirm diagnosis. I am starting a raw plant based vegan diet and was wondering if anyone else is on it as well. If so, have you noticed a difference in your symptoms and energy levels? I have such bad fatigue that I can quite literally go to bed at 830pm sleep till 7am, get my daughter ready and off to school then go back to bed for the rest of the day. I work full time so this is not an option for me. I am desperate for relief from the itching and fatigue. If anyone has any advice I am all ears.

Thank you,

Melissa

[JC1967]

Hi Melissa

Your symptoms sound more advanced than mine although I share many similarities. I live and work in Ottawa. Work being impacted due to fatigue. Itching does not sound as severe. Fatty liver and 2 hematoma as well on liver. Pain on left side under rib. I will keep in touch with developments and what is working or not for me. Considering avoiding dairy and gluten from what I am reading. Unsure if all medications available in Canada. Some new one with positive results. Be strong you are not alone.

Julie

[Grannacat in reply to JC1967]

Have you been told what causes your pain on left side under your rib? I have pain in the same area.

[246810]

Hello mellynelise ,

I'm sorry you are feeling low. I was diagnosed last October , I feel tierd most of the day too, I don't eat anything with wheat, I do eat a little dairy . I suffer from IBS for years now so used to watching what I eat. You are so young, have you been alb to take sick days from work ? Are your employers understanding ? X

[Mellynelise17 in reply to 246810]

I also have IBS! I have been off for the last week but I am unable to take a longer leave as my unit will literally fall apart without me. I have high pressures at work and feel very guilty taking time off. My Managers are understanding to a point BUT I will be put on an attendance program if I have more than 6 sick days or 150 consecutive hrs missed. This makes taking a leave difficult. 😔

Trying to take care of myself as best as I can at the moment.

[Sandymh]

Hi Melissa. Your symptoms are exactly how mine were prior to diagnosis in 2010. The fatigue and itching was horrendous. After starting medications, it took a long time to start feeling better apart from the itching. I'm never free of the that, just sometimes mild, at other time its intense. I am prescribed Colestyramine, Colesevelam and Urso & Vit D. I also buy high strength cod liver oil and take one daily. I'm sure the cod liver oil has helped me. My Alk Phos is always high. 1200 on diagnosis, and rarely goes below 500/600 and that's stable for me. I refuse other drugs as I don't see the point in taking something which is likely to cause kidney problems too, so would rather suffer the itch which would be worse without the medications I take. I have also had IBS for most of my life which causes me far more stress than PBC. It seems IBS can be part of the PBC so with that and lethargy I seriously feel that I could have had PBC far longer than is realised. I'm 71 yrs of age, but apart from the itch I feel very good now. At times I do feel a bit more tired so have a nap during those days. I know my limits so as not to wear myself out. I have a large family of nine children who are all adults now, so I do understand just how difficult it is when the children are young and you have to work though and its not easy. Also check whether your medications interact with each other which will prevent them doing the work they are meant for. Easy to find out on the Internet. I use the site called Drugs.com. I use dosette boxes and means I am taking medications 7 times a day to prevent interactions of medications. I also have medication for cholesterol, blood pressure, and to help me sleep. I used to set alarms for those 7 times but used to it now so only set the alarm for 3 lots...3pm, 7pm and 9-30pm as these are the ones Sometimes tend to forget to take on time.

It seems daunting but things will improve for you. I do hope you start to feel some improvement soon. xx

[Jmorrison]

Hi Mellynelise, sometimes diagnosis of pbc is complex and it took a liver bioosy to diagnose mine. If it is pbc hopefully the urso will kick in soon and help you with some of the fatigue but you may still need to incorporate rest periids into your schedule. All the best of luck.