My 16 son was diagnosed with PSC in September. The ursodiol seems to be doing it’s job because his pain is gone. His latest blood work came out great. Completely within normal range. However he continues to lose weight. He is 5’6" and is down to 109 lbs. He feels fine,no itching or jaundice, just the consistent weight loss. He can be a little picky with his eating so we are tracking his calorie intake for a few days. Any thoughts? Is this normal for this disease or are we missing something? I’m hoping he is just not getting enough calories. My husband was also thin at that age as well so maybe genetics is part to blame Thanks. Carrie
Great news to hear that his labs have normalized with the URSO. I hope that gives him relief for a long time. Weight loss is very much a part of PSC. I think it comes more from the nausea that the disease produces. I would encourage him to eat anything that he really likes to eat. I know it sounds strange, and I’m all for healthy eating, but with PSC sometimes certain foods really turn the PSC patient off and thus if they are pressured not to eat fast foods or other foods they really like then they tend to just not eat well and lose weight. Let him eat what he can and wants. It is important that he eat foods high in protein. He needs to keep his muscle mass up as much as possible and keep his core strength high. Thankfully he’s 16 and hopefully full of the zest of life. Just let him be the boy he is. A lot of running, bike riding, swimming, any type of activity he really enjoys is good to maintain good exercise habits.
I trust you and your family have a very Blessed Christmas and Happy New Year!
Just went through a period of hospitalization were I got a stomach blockage and then surgery but found that eat 4 eggs mixed (scrambled) with a bit of milk and cheese then 3 large scoops of sustagen neutral flavor powder in the mix was great. Not only did it go down easily it has heaps of protein and gave me heaps of energy. Hope that helps
Thanks so much guys for the advice. I’m still a nervous hen with all of this. It’s always good to hear from people with first hand experience. I will look into sustagen Gaz. Peace to you both. Carrie
I sympathise. My son was very similar, he’s 17, very tall and loses weight if he doesn’t constantly eat. I make him smoothies with lots of fruit, yoghurt and honey. He loves them and it’s a good way of getting calories into him as well as probiotics.
It can be hard to digest most dietary fats as PSC progresses and these are a major source of calories (twice as calorie dense as carbs and proteins). I found supplementing my meals and drinks with a tablespoon of medium chain triglycerides (fats that don’t need liver bile to be absorbed) helped boost calorie and fat soluble vitamin absorption. A natural source is coconut oil (~60% MCT) and it can also be found 100% in MCT oil.
Has your son’s doctor been checking levels of ADEK? Fat soluble vitamin deficiency is very common with PSC and, from experience, developing osteoporosis at a young age is no fun.
Has your son had an mri and other tests to rule out other causes of weight loss?
Young adults do need a lot of calories though. You might ask his doctor to prescribe pancreatic enzymes to help digest food when there is not enough bile. They are very expensive but your insurance my cover the cost.