Thursday's 'Thoughts'

[DonnaBoll]

What do you feel is the biggest change in your life since diagnosis?

[Samanthaann]

The things I think about each day. I now think about PBC everyday. Emotions- still think how/why. Always anxious about upcoming lab work. But I never feel sorry for my self. All this is normal when we have major life events. Trying to get one’s mind to a good place is always difficult. I try and focus on the positive.

[DonnaBoll Administrator in reply to Samanthaann]

First of all, thank you for sharing how you feel since diagnosis. I agree tht PBC does become part of us but hopefully never really defines us. We are so much more than any disease. We all strive to come to the point that although we have PBC our lives can still be full and productive - although maybe slightly 'altered' in some ways. Continuing to feel that our former lives are over and not focus on what can still be positive in our lives, gives PBC way too much power over us. I'm so glad you are trying to stay in that 'good' place most of the time. Some days are surely hard to do that. Whether we have PBC or not, I hope we can all try to see the beauty around us and the good in our world. Thank you again for sharing.....

[DebatDG9]

9 years ago at 55 PBC was my 3rd autoimmune diagnosis.

1. I reduced alcohol intake to 1 unit per week which was a mammoth undertaking which has wrecked my enjoyment of many social activities.

2. I reduced stress level - took early retirement, moved to dream location and started a whole new life - new friends & activities & community involvement.

3. Include gentle exercise in daily schedule and post lunch snooze.

Have felt happiest I’ve ever been.

During last 7 years I e developed Raynaud’s syndrome and dry eyes & mouth may well be indicators of Sjogren's. Recent Gastro check up has identified possible problem with pancreas - enlarged lymph node so CT scan and difficulty swallowing will be investigated via endoscopy/biopsy.

So I don’t spend a lot of time worrying about PBC. Life is too short and there are so many things that need to be done and things I want to achieve!

[DonnaBoll Administrator in reply to DebatDG9]

Thank you for such an uplifing post! Any disease does not have to keep us from living life. Sounds like you knew what changes you needed to make and made them. Being happy has to be a priority for each of us. We all deserve to be happy.

[butterflyEi]

In truth I cannot say that I made any allowances or changes in my life because of PBC. Like many of us I too have more than one autoimmune, PBC was my first but due to lack of information and being busy with work I did not take any notice of it other than taking the tablets. I believe it took about 10 years for me to convince the doctor it was not depression, alcoholism or empty nest syndrom and refer me to a specialist. Once diagnosed I had been given the impression that it was not serious or life threatening so I got on with life. It was not until 2014 some 7 years after diagnosis that the itch started which was miserable until eventually I was prescribed Rifampicin. I have been fortunate with my PBC so other than taking tablets I cannot say it has changed much in my life. I do however eat a diet rich in fruit and vegetables with nuts seeds and pulses not totally vegetarian though. Since retirement all foods are prepared fresh at home, no shop bought ready made.

[DonnaBoll Administrator in reply to butterflyEi]

Sounds like you are doing well even after all of the delays from lack of information or validation from the health care system. That is all too common, I'm afraid. Glad the Refampicin is helping the itch. Finding something that works can be a life changer. Eating healthy is so crucial. Good to hear you are doing well. I hope you belong to The PBC Foundation - so much great information there.

[Wocket]

other than taking tablets everyday I don’t think much has changed. I never drank much before diagnosis so no change there. I suppose I eat healthier and exercise but that is probably for my overall health.

[DonnaBoll Administrator in reply to Wocket]

Sounds to me that you are doing all the right things to take care of yourself and manage the PBC. Just make sure you are on the right dose of Urso. I assume your liver numbers are good. Keep up exactly what you are doing!!!!

[Wocket in reply to DonnaBoll]

Wish my liver numbers were good but I am only a partial responder to Urso. I was on bezafibrate but they affected my kidneys so I now hav stage 3 CKD.

[butterflyEi in reply to Wocket]

sorry to read this Wocket

[DonnaBoll Administrator in reply to Wocket]

Thanks for sharing this with us. I do know how stressful this can be. What is your alk phos? how long have you been on it? Please make sure you are on the right dose first of all. Do you have the Urso calculator to refer to? I

[Wocket in reply to DonnaBoll]

I can’t remember exactly what my numbers are but they aren’t too bad 2 hundred and something. They don’t use Obeticholic acid here because it causes itching my consultant said. Bezafibrate worked really well for me until my kidneys started complaining.

[Candy12]

The biggest changes I made because of PBC , you could say were life changing for the better. The first four years I carried on as normal, being 56 and at an age with income to spare so to speak. I enjoyed my social life eating out at least 3 times a week, having a glass or three of wine and a few to many packets of cigarettes and puddings and sweets everyday.. After four years I started to get some symptoms and thought I needed to clean up my life a bit. So I stopped smoking, drinking and although it took a lot longer I finally kicked the sweet foods from my diet. So PBC could have saved my life in many respects. I don’t think I could have carried on with such a poor life style for very long without it having an effect on my wider health. So apart from the fatigue, and dry eyes and mouth I'am doing really well. With normal blood ranges and scans still in the normal to mild range. I got a dog 7 years ago so now we walk 4/5 miles every day yet I couldn’t walk to the local shop when I was 60 , so now at 70 I feel blessed most days. There are days the fatigue is really bad and I feel crappy but positive self talk really gets me going again as does the sad eyed doggy sat beside me.

[DonnaBoll Administrator in reply to Candy12]

I love every single word you wrote!!! It is this kind of sharing that gives newer members hope that they can do what they need to do and live a rich life as a result. You made a lot of changes that likely wouldn't have been made otherwise. I had another member tell me once that he felt PBC made his life better in that he now appreciates life so much more and is so much more positive about it overall. I truly believe that is true for many. I know for me, with having been given 19 more years of life, I am blessed as well. Keep living life!!!!

[Michi1]

PBC changed my life. In every way. My diagnosis led to my doing a ton of research about functional and integrative medicine and how to get and keep (to my best ability) an autoimmune condition in remission. I cut out all soda, artificial sweeteners, gluten, and much dairy. I started supplementing with Vitamin C and Selenium and later added Vitamin D. I now make sure to get and be aware of my blood labs. I lost weight, got in better shape, and take action to deal with stress. I am now in a shift from a full time law practice to a health coaching career. I'm happier and feel better than I did ten years ago! I never would have made these changes if I had not been diagnosed with PBC. It "scared me straight" so to speak. ❤️

[DonnaBoll Administrator in reply to Michi1]

Thank you for sharing every word of what you wrote. There is a positive in having PBC. I couldn't agree more. We make changes that maybe otherwise would never be made. Changes that make us happier are ones that we reap benefits from for many years. Sounds like that is just what you did. Good for you!!! I love your phrase "scared me straight". I might borrow that....

[lovesoccer]

In many ways this was a blessing in disguise. Coupled with a diagnosis of dibetes type 2, I made some significant dietary changes and lost 60 lbs. This has made such a difference in my overall health, even with the PBC.

I also now recognize the occasional fatigue that comes with PBC and don’t attribute it to just being lazy. I try to give myself the rest when I need it.

[DonnaBoll Administrator in reply to lovesoccer]

Good for you!!! I am endeavoring to change some dietary routines for myself as I have prediabetes. What helped you the most to lose that much weight? As far as the fatigue, listening to when your body needs to rest can make life so much easier for you. Our bodies work hard for us.

[lovesoccer]

For me it was a strict diet change, probably a bit too strict at first if I’m being honest. I think being on Metformin helped. I was probably using what little insulin I make for the first time in years, which made a significant difference in my blood glucose levels. If factored in some more carbs but still try to eat healthy as much as possible. I mainly do smoothies for breakfast and salads for lunch, which is fine. Dinner is the hardest for me to keep making healthy choices, but I do my best. I’m far from perfect though.

[DonnaBoll Administrator in reply to lovesoccer]

don't underestimate what all you've done so far to help change things.... it's hard to be patient and kind to yourself. I struggle with my weight every single day. I might try the smoothie and salad suggestion. Just doing 'your' best' is all you can do. One day at a time.

[lovesoccer in reply to DonnaBoll]

Thank you. I appreciate your words of encouragement. I have many good smoothie recipes if you’d like.

[DonnaBoll Administrator in reply to lovesoccer]

You can post some here or send them to me in a 'chat' post. Thanks!

[zinchunter]

TAKING CHARGE!* Following the research on fibrates after finding URSO nonresponse and requesting it in 2008, years before it became a recognised secondary treatment.

* Cutting alcohol, pursuing better diet, good exercise.

* Following up on monitoring to look at trends, not one- offs. Following up on top consultants (eg Addenbrookes) on advice from Foundation.

*Cutting weight 10% (incredibly hard) on consultant request to see if fatty liver was influence (it wasn't!)

* Pacing life and looking at what is possible, not what is not.

[DonnaBoll Administrator in reply to zinchunter]

TAKING CHARGE!!! I love this whole concept. Such great advice to look at what's possible. Thank you for sharing such an encouraging post.

[zinchunter in reply to DonnaBoll]

Thank you. I know it sounds arrogant but would like to explain that, having been put on statins for high cholesterol (yes a symptom of PBC!) which revealed high LFTs, and then been accused for 6 months of being an alcohol abuser, (subsequently full of apologies for missing the AMA thing), then being found to not respond to URSO and being told "sorry there is nothing else to offer you", you either give up and wither away or find your own way out. Don't forget in those days the C was for Cirrhosis with a link to alcohol, for which the Foundation has to be thanked for the change to Cholangitis.

[DonnaBoll Administrator in reply to zinchunter]

absolutely The Foundation was highly instrumental in getting the name change.. now if only everyone didn't associate any liver disease with alcohol use. There is still a lot of work to be done for sure in educating the public and, unfortunately, health care professionals as well.