I finally finshed all my investigations at the end of August, after being diagnosed with PBC at the end of May. The time from May to now, very much felt like a roller coaster ride, especially as I have been quite unwell inbetween. As other people mentioned before me - I was so fed up of being poked, prodded and pricked all the time and I am so glad that it is FINALLY over for now. I know, I mentioned that before, but it was also very helpful to read your posts and about your experiences with everything to do with PBC.
Since being on the Urso my itch and fatigue have somewhat improved and I honestly can say that I currently feel better than I have in a very long time.
The results of my investigations showed that I have already some scarring of my liver, which explains my ongoing problems with nausea and weight loss. According to the fibroscan I am somewhere between F3/F4 which means fibrosis/?beginning cirrhosis. However, I am glad that my consultant didn't insist on a liver biopsy to do a proper staging, also he offered it to me which I declined. At the end of the day it doesn't matter if I know what stage I am, as it doesn't change anything in regards to my treatment.
Beginning of August I have seen the liver dietician which was extremely helpful. She upped my daily calorie intake which now kind of helps to mainain my current weight. In regards to the nausea - I am not nauseous everyday and not at the same level, but found that on days where it is pretty bad that it helps to add ginger to my food or to have fresh ginger in vegetable broth (I don't like ginger tea).
I am to start on bi-phosphate for my spinal osteoporosis soon, as this has deteriorated quite a bit. I am already on calcium/vitD. I also started a regular exercise programme with the aim to do weights 3x times/week to help build muscles. What I noticed is that since I introduced daily exercises (mainly going for walks) that it helped very much to further improve my fatigue. However, I still do have days where I am too fatigued to do very much at all.
I am still on large amounts of Lactulose which does cause me very often to bloat (and fart *blush*) horrendously. On really bad days I do look like I swallowed a beach ball. Does anyone have any suggestions on how to combat that?
I eat mostly vegetarian/vegan with the odd fish or white meat tossed in. I have tried glutenfree for some time, which didn't make a difference. I also left out food which is associated with causing bloating - nope, no difference there either. I was a bit put off by my consultant who said that I "just have to get used to it" as it is the combination of Lactulose and Urso which causes it, and the liver dietician didn't have any suggestions either. So, I do hope that you guys have something what worked for you, which I may could try.
One more question in regards to alcohol. I have never really drunk anything aside from the odd glass of wine or cider (about once a year), but I used to use wine from time to time in cooking. Since, I know that my liver has got scarring already I am a bit scarred of using wine in cooking - any thoughts on that one? I actually forgot to ask the liver dietician about that.
However, I am glad that we have this forum to exchange experiences and being able to have a "moan" from time to time when we don't feel well, or just to share valuable information. I wish everyone a fab weekend.