I am experiencing continued edema (though medications have helped significantly) and I believe I am experiencing some ascites. Frankly, it scares me to death. I'm trying to maintain a lower-salt, higher-protein diet; lose weight; and eat appropriately for someone who's undergone gastric banding surgery. It's overwhelming to try to meet all these nutritional requirements and cook for my other 4 family members. Does anyone have experience with managing ascites or insight to offer? I find myself obsessing over it and sometimes measuring my abdomen several times daily.

I was first diagnosed with PBC in 2008, took Urso for a couple of years, then allowed life to get in the way (and perhaps some denial) and was off and on the medicine for several years. Earlier this year, I returned to my GI specialist and restarted the Urso and am diligently taking it. The GI also referred me to a hepatology/transplant specialist to begin being followed by them as well.

I'm exceedingly thankful that I am not really experiencing any other symptoms of PBC, other than occasional pains/spasms in the liver area, but I am fearful. I'm only 49 years old and have a lot of living to do. Gratefulness for this community and those who so willingly share their personal experiences overwhelms me daily.

Thank you for you time and consideration!

9 Replies

  • Hi tntarheel

    How I so recognize your comment about denial and I suspect many of us on here will know that emotion. Because PBC is a slow progressive (in most) auto immune disease it is difficult to stay focused on how important it is for us to look after ourselves but to get the best out of this life looking after ourselves is a must. When talking about cooking for yourself and 4 other family members then the foods that you need to eat will be equally as beneficial to your family as they will be to you. The western diet is high in salt, fat and sugar which are all now known to be bad for a healthy long life. Processed foods are a phenomenon of post 1939-1945 war years and have proved to be very bad for the health of nations. One popular diet that seems to stand the test of time and which does not suffer with the conflicting information that surrounds so many foods is the Mediterranean diet, rich in fresh vegetables, salads, oily fish etc. Also if you can manage a half hour walk daily it will help with the weight and in general make you feel better within yourself. I am a great procrastinator about exercise, in the UK it is either to hot, to cold, to windy, to wet in fact any excuse will do until I bought an exercise bike in July and built up to 20 minutes a day in front of the TV which distracts me nicely whilst I exercise. Now I have no excuses!!! I am also pleased to say that since July I have lost 3 kilos.

    I like soups and make from scratch all sorts of vegetable soups for lunch. Although I use a stock cube I buy low salt organic stock cubes.

    This is a favourite soup but I do not have it with bread:

    I bought a hand blender for all those recipes where the vegetables are mashed down. For breakfast I mostly have organic jumbo oats either as a porridge with skimmed milk or as a muesli which I put together with walnuts, brazil nuts or almonds and some dried fruits such as apricots and currants or dates and figs, and have it with skimmed milk and a fresh banana. However a word of caution I have only just read that nuts have copper in them and that can be harmful to liver conditions - I have to find out more about this. Drink plenty of water during the day/evening which will help to keep you hydrated. At this time of year I eat a lot of salad with protein such as oily fish, eggs etc. I keep red meat to a minimum and have recently added pulses/beans to my diet. My husband made a prawn dhansak last night - this does not taste anything like the take away we used to get and the main ingredient missing is the amount of salt!

    As to the ascites, I have to experience but I am sure someone will come along soon who will be helpful.

    Best wishes

  • Thank you for your encouraging words and informational thoughts on diet, etc.!!! My family will definitely benefit from dietary changes as well, though some are picky eaters. They will learn to adjust. Just to clarify, the gastric banding I referred to was lap-band surgery, a weight loss surgery. Thankfully I have not experienced varices or needed banding for them. My apologies for being unclear.

  • It is all quite overwhelming ..I think diet is important with the occasional treat ...I do t have swelling but I have had. banding and two weeks after the last one I am still in some one in 2 weeks but am asking for it to be deferred a week or so as I now seem to have either strep or virus tonsil ..dr didn't know but has put me on antibiotics in case which is also not good as they are processed by liver seems continually difficult after my bleed ..before I never thought about my Pbc but chirossis is a wake up call. Do you have this? Do keep on with urso ..I didn't take it years ago as I felt sick with it but now I am ok with it but probably I left it too late. Like you I have few symptoms luckily. All the best

  • Thank you for your encouragement. I pray your procedures will be most successful and help you feel much more well! The banding I referred to was the placement of a lap-band, a weight loss surgery. I have not experienced any varices or bleeds. Being told I have cirrhosis was most definitely a wake up call. Trying now to learn to not over-obsess! Easier said than done for us all at times, I'm sure. Thank you again and blessings to you!

  • Hi tntarheel....sorry if ive spelt thar wrong.

    I was diag in 1999 when my youngest son was just 3months been.ptetty ill while i was pregnant and i never really got any now 53and like you feel.i have a lot of loving left too do.

    Ive been so incapacitated that there is loads i havemt been able to do for all that time.

    In the beginning i was very shocked and a big scared but as times gone on ive realized that that is pointless...worrying is such wasted energy when we have so little.

    What helps me is to think....whats the worst that can happen..yes being morbid this disease could kill us but so could a lot of other things..and hopefully a transplant possiblle.

    You are rigjt to get on with life.snd not let the disease take over.

    Do what u have to with meds and diet but enjoy life as much as you can.ditch the tapemeasure.they will check for ascited when you are scanned.all the best wishes and i know its easier said than done try noy to cazer.x

  • Thanks, Cazer, for sharing your experience! My user name, tntarheel, is a reference to living in Tenneesse (tn) but being from North Carolina in the states (Tarheel... My university mascot and nickname for NC natives).

    I'm really hoping and praying that time will help me adjust and be less obsessive. My husband, too, said quit with measuring tape!! :)

    Thank you again and blessings to you!!

  • Thanks you will be fine i feel sure...even if physically you are struggling..mentally you will get used to it and if you can have a joke thats half the battle.x

  • That should say living to do !!!!!

  • Hello, I have pbc as well as other autoimmune diseases. I am also suffering due to edema. The doctor took me off of my small does of prednisone and it almost took my life. Not sure the connection to prednisone but it keeps my appetite up and I am able to eat and not get nausea and throw up?! My dose is 2 mg . But I was told the edema was from all the fluids I was given thru I v. They upped my lasix to 2 a day and I also have to take spirolactone ,

    Ursodiol, and lactulose. Plus... So I understand your struggle!! I wish we could all find a way to have a support group to cheer each other, maybe on Facebook? Look me up Tracy Cook maybe we can add pbc to our settings? Let me know what anyone thinks👍😀! Sending you all much blessing and love!!❤️🙏