Bloat

[Casslucy]

Hi does anyone get intermittent bloating with pbc. I've been taking urso for about a year now and seem to have quite bad bloating a lot lately? Thank Lynn

[butterflyEi]

I did have bloating to start off with but I do not get it any more. I changed my diet to lose some weight reducing the amount of bread, potato (which I love) and rice. I introduced more fresh veggies and salads. I also started taking a probiotic which seems to have also had a beneficial impact on my gut in other ways.

You may want to try removing one thing from your diet at a time to see if there are any changes, sugar of course in all forms is bad for all of us not just us with PBC. I have reduced salt intake. Breakfast for me now also includes kefir with my porridge, nuts, seeds and banana. I suppose having it every day is boring but at least I know where I am. I am retired now so cooking from scratch is easier to manage, if you are busy then batch cooking for the freezer may help you on those times you just don't feel up to getting a meal.

A food diary may help you identify a trigger. Hope you find a way to resolve this issue if not do speak to your doctor.

best wishes

[Casslucy in reply to butterflyEi]

Thanks ButterflyEi for your reply. It seems to be a lot of wind I think I go through bouts of it. I'm trying to up my urso to 1000 from 750 and every time I do I seem to run into tummy problems. Last year when I was diagnosed I was put on 1000 but struggled to take it and my hep said not to worry if I can only take the 750 because my numbers all came down very quickly and my alp was never over 150. You just worry in case somethings getting worse and you don't know!!

[butterflyEi in reply to Casslucy]

Just a thought but have you tried taking the URSO at different times of day? I think it is best with food (usually dinner) but some people take it in the morning or just before bed to avoid tummy issues, some split the dose. The PBC Foundation has a guide to help us measure our dose against weight, a very useful tool.

Fortunately PBC is in most cases a slow progressive disease. I was diagnosed in 2006/7 but almost certainly had it about 10 years prior but went undiagnosed at that time. It is known that a woman of over 100 years of age died with PBC not because of it. I am in my 70s and enjoy an active life, I take my meds and look on the bright side. Make sure you have annual blood tests either with hepatologist or surgery that way you will know that you are doing well.

[Casslucy in reply to butterflyEi]

Yep I take 250 in the morning and the 500 with my dinner at night. At the start I had quite bad nausea with it but that settled down now its just the bloatedness and the odd wee twinge!

[YvonneGS]

Great advice from butterflyEi, as always. One more thought to add…if you take lactulose to help maintain bowel regularity, that can add to bloating.

[Casslucy in reply to YvonneGS]

Thank YvonneGS I don't take anything like that anymore. I used to be very bad that way but strangely since diagnosed with pbc my bowel see.s to work better lol xx

[CeeCee101]

I do have bloating but my gastro thinks it might be something else so he has me on the FODMAP diet right now and also going to take the SIBO test. Just finished the first elimination phase of the FODMAP diet for 2 weeks and now on the reintroduction phase to see what foods might be triggering it. The elimination really helped. Hoping during reintroduction will learn what trigger foods I have. Don’t do this diet without medical supervision, talk to your doc. I also divide my URSO doses into morning and night.

[Casslucy in reply to CeeCee101]

Thank CeeCee its horrible feeling bloated isn't it. I like to try and forget I have this PBC but when you feel like this it's hard to. Mine seems to come and go. I'm just finishing my last prescription called ursonorm and wondered was it that so I asked the chemist to give me the ursofalk this time to see if that makes any difference.

[lovesoccer]

Hi Casslicy. I had a little bloating in the beginning when I started Metformin for my diabetes ahead of Urso but not much now. Similar to other posts, my diet really makes a difference. When I’ve let myself cheat and have more sugar and fatty foods than I know I should is when I feel the worst. A good reminder that this part is in our control, I guess. Wishing you well!

[Casslucy in reply to lovesoccer]

Hi lovesoccer yep I think when I overeat it builds up and then I suffer a bit I do spinning so I convince myself I can at times lol

[lovesoccer in reply to Casslucy]

I justify when I play football too, lol. (Guess live soccer gives me away as an American, lol.)

[Casslucy in reply to lovesoccer]

I'm N. Ireland just a wee bit away lol