PBC Foundation
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Edema anyone?

Wondering if anyone has experience with edema (swelling, fluid retention) in the legs and belly. I've had quite a bit over the past 10-15 days and am quite discouraged. I've gained around 15-20 pounds. My GI doctor suggested a salt restricted diet and compression stockings (miserable in the southern US in the middle of summer!). My family doctor has now prescribed lasix for a short term treatment. Couple of important side notes: I've had abdominal ultrasound, upper endoscopy, and physical exam within the past 3 weeks that show no ascites, varices, or portal hypertension. My blood work isn't great as I had been off the Urso for 2 years... But in just a month back on, levels are improving. I've also had gastric band surgery (2010) and lost 200+ pounds (thus the weight gain is particularly frustrating). My serum albumin level is very low (1). My primary care doctor has suggested that can possibly contribute to edema and indicates insufficient protein intake... Currently working to increase protein intake. Thanks in advance for any insight you have to offer! This forum has truly blessed me as I've been coming to terms with having a long-term, progressive illness. Hearing about others' experiences of living life well despite the diagnosis is most encouraging, as well as the sense of community and support! Thank you!

1 Reply

I get swelling in my ankles and belly so I don't eat salt anymore since most foods have salt in them I am getting enough. My belly gets gassy and distended with pain so I try to walk when I get like this and seems to help. I get more swelling after eating so I think it's related to digestion being slower with PBC for me anyway.

Hope you are getting relief soon .


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