EPISODE 18: UNINTENTIONAL weightloss with Primary Sclerosing Cholangitis (PSC) Unintentional weight loss is something a lot of people with Primary Sclerosing Cholangitis, or PSC, experience, but it doesn't get talked about enough. If you've noticed the number on the scales dropping without trying, it's worth paying attention. It isn't always "a good thing," and it can sometimes be a sign that your body needs extra support. There are a few reasons why this can happen with PSC. One of the biggest is that PSC can affect the flow of bile, which is needed to digest and absorb fats. If your body isn't absorbing fat properly, you're also missing out on a major source of calories. Some people notice pale, greasy or oily stools, which can be a sign that fat isn't being absorbed as it should. Another common reason is simply not feeling like eating. PSC can cause nausea, bloating, abdominal discomfort and fatigue, all of which can make food much less appealing. When you're eating less than usual over time, weight loss can happen without you even realising it. Chronic inflammation also plays a part. Your body uses more energy when it's dealing with ongoing inflammation, so even if you're eating what used to be enough, it might no longer meet your body's needs. And then there's muscle loss. When you're tired, less active, or struggling to eat enough protein, your body can start breaking down muscle. That means the weight you're losing isn't always body fat—sometimes it's valuable muscle mass, which is important for strength, mobility and overall health. So what should you do if you're losing weight without trying? The first step is to let your hepatology team know. Unintentional weight loss is something they need to be aware of, as they can investigate what's causing it and make sure there isn't anything else going on. It can also be really helpful to see a dietitian who understands liver disease. They can help you find practical ways to increase your calorie and protein intake, even if your appetite isn't great. If eating large meals feels impossible, try having smaller meals or snacks more often throughout the day. Prioritising protein from foods like eggs, fish, Greek yoghurt, dairy products, beans or protein shakes can help protect your muscle mass. If your energy allows, adding some light resistance exercise can also help your body hold onto muscle. It doesn't have to mean lifting heavy weights—even a few simple strength exercises at home can make a difference. It's also worth keeping an eye on your weight. You don't need to weigh yourself every day, but checking once every week or two under similar conditions can help you spot any trends. If you're losing weight quickly, notice jaundice getting worse, develop new abdominal pain, or your symptoms suddenly change, contact your healthcare team as soon as possible. Those changes deserve medical attention. The most important thing to remember is this: unintentional weight loss with PSC isn't something to ignore, and it isn't something you have to deal with on your own. Speak to your healthcare team, ask questions, and get the support you need. Looking after your nutrition and protecting your muscle mass can make a real difference to your quality of life. MOVEMENT | MINDSET | MANAGEMENT https://pscfit.kit.com/profile/links
