Pbc/Aih

[janine541]

Hi All

Probably sounds silly bit i phoned the hospital today and asked where my letter of diagnosis were and she said she would send it out 1st class today.

Whilst i was on the phone she explained my diagnosis. Think i have been ignoring it for a few year beause whilst i havent had it on paper i could ignore it. But now i feel scared x

[Lizzy1313]

Hi janine541,

It doesn't sound silly to me. We all have our own ways of coping. I avoided taking to my doctor about my diagnosis for the first 6 years. Something in me said, diet make a big deal about it and it won't be a big deal. Then, after I finally got a biopsy and found the PBC had progressed, I had a harsh wake up call and thrashed around a bit because I had been doing all the 'right' things. This year, I finally connected with others on this blog and the PBCers and American liver foundation Facebook pages and realized staying connected to my medical support system and others dealing gracefully with PBC and still living my life the best I can, is my best, most loving option. In this context I find understanding, support and solace. You're in the right place. Much love to you on your journey. ♥️

Liz

[janine541 in reply to Lizzy1313]

Thankyou for your message. X

[janine541 in reply to Lizzy1313]

Can i ask at what stage are you and have you found diet helps x

[Lizzy1313 in reply to janine541]

I'm at stage 4. I think I was well along when I was diagnosed and given Ursodial. For me, diet has been key. I was a vegetarian and found myself craving lamb and salmon. Once I started eating them again, my alkphos went down. Also, cutting out gluten impacted my alkphos favorably. I eat every 2 to 2.5 hours and don't have large meals. I try to balance protein and veggies/fruit and grains each time I eat. Staying well hydrated is very important. I'm in the US and have found that I can get coconut water on sale in the spring summer, which has been helping enormously with hydration. I am fortunate enough to have an amazing naturopath who understands pbc and helps me with supplements and acupuncture. I've started low dose naltrexone recently and have found it's helped with fatigue, pain, focus, quality of life. And, regular gentle exercise is sooooo important. I swim about 3 times a week. Plus I walk and use an exercycle some. Movement is good in so many ways, for endorphins, toxin removal, maintenance of muscle mass, etc. As you move along, you'll find your own balance again and again. I do believe that we humans are designed to find our own rhythms. You'll find other ideas on this blog. I've found such peace knowing I'm not the only one going through all this.

[janine541]

Hi

Ive been diagnosed with pbc for 3years and only found out last year i had the overlap Aih.

The consultant says im prob stage 2 and not to worry. It waset untill i asked for my notes i was worried.

I have the itch and fatige terrible pains in my legs. He wants me to start steroids. So i have started eatig healthy as i could do wifh being more healthy. As for exercise. I work full time and like to meet my bed when im home.

Think id like a miracle really. But i suppose for now i have to just deal with things