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Primary Sclerosing Cholangitis (PSC) - Online Support Group

Caregiver questions about nutrition for newly diagnosed male

Hi All!

My husband (42) was preliminarily diagnosed with PSC after a hospitalization for URQ pain, an MRCP and elevated liver panels about a month and a half ago. We’re trying to navigate moving from our Gastroenterologist to a Hepatologist, but in the meantime, we are looking for support around getting adequate nutrition.

We’re guessing he’s fairly advanced (there’s evidence of cirrhosis), but we’re confused, because it’s literally like someone has flipped a light switch.

One day, he was fine, (he generally eats healthy and doesn’t drink), the next day he struggles to find foods that do not cause him URQ pain. He’s lost more than 15 pounds over the past month and has admitted that he is starting to have a hard time concentrating. He’s still working full time and goes for 2-4 mile walks each day, but the types of foods his body seems to tolerate (no processing, limited oil, limited meat) leaves us w/ the equivalent of a non processed, vegan diet w/ very limited nut butter = very few calories!!

We have a colonoscopy/endoscopy schedule for a week from now (has zero symptoms of UC) and an appointment with a naturopathic center to discuss nutrition options in a couple of weeks, but I’d love any suggestions/insights/specialty areas that I’m sure we’re missing.

I’ve read through people’s posts that PSC looks different for nearly everyone; thank you for all you share!

Be sure to mention to his doctor that he is having trouble concentrating.

I was down about 25 pounds at one point so I’m familiar with the fight to keep on weight. With less liver bile flowing due to cholestasis we have a harder time absorbing most dietary fats. These fats are important as a source of calories (twice as calorie dense as carbs or protein) but are also needed to absorb fat soluble vitamins (vitamin deficiency issues are common). The workaround are medium chain triglycerides (MCTs) that both don’t cause the liver to produce liver bile and don’t require bile to be absorbed. These can be found naturally in coconut oil (60% MCT) and through MCT supplements (100% MCT). I would dump a tablespoon of MCT into either my drink or on my meal 3-4 times a day both as a calorie boost and to help get my vitamin D levels back up. This stuff is pure fat so I would recommend starting with small amounts (teaspoon) at first to get used to it. If supplementing to boost ADEK, take close in time to your vitamin supplements as it is absorbed very quickly vs. long-chain fats.

Here is UVA’s take on MCT and general nutritional needs: https://med.virginia.edu/ginutrition/wp-content/uploads/sites/199/2015/11/AlnounouArticle-April-06.pdf

Sorry your husband is having trouble with his PSC. Sounds like it may be time for an ERCP procedure to clean out his bile ducts. That should give him some relief for a while. Let him eat what he can, although good nutrition is good for all of us, when you are living with PSC every day you just have to eat what you can stand. The constant nausea of certain food smells and all take that appetite away. Encourage him to drink protein drinks such as Boost to keep his protein levels up, but don’t scold him if he just wants fries and hamburgers. This disease will cause you to want things you normally wouldn’t eat. Healthy diet is not going to make the PSC go away, but maintaining his core strength with high protein and some good daily exercise like 30 minutes of walking will all be critical when it comes time for his transplant down the road. I hope things go well with his upcoming procedures.

Mark
PSC 2011 / Liver Transplant 2015

I would check that his confusion is not due to hepatic encephalopathy before upping protein too much.

Thank you all for your kind words and wise input. I’ve been cooking with coconut oil, and that seems to be working well. We just got a clean colonoscopy and endoscopy yesterday, so it seems like everything’s contained within the liver for now. :slight_smile: Thank you again!!

Is your husband continuing to have confusion? My father has been diagnosed with PSC for almost 14 years with very little symptoms - He also has MS and we were dealing with symptoms related to that and almost totally forgot about his PSC - other than taking milk thistle and Vitamin D for it and a gall bladder removal about 12 years ago…so when he started experiencing full scale confusion and slurring his speech about two months ago we thought he’d had a stroke …went to his primary care physician, ended up in hospital and then skilled nursing before the doctor there decided to do an ammonia level test of his blood and it was almost triple the “normal” range - so he was diagnosed with hepatic encephalopathy(HE)… treatment was Lactulose and Rifaxmin and seems to be reducing the confusion…