(some descriptions may be a little gross, sorry)
Just curious if anyone else has malabsorption of fat? I am deficiant in fat soluble vitamins and I can not eat any fatty foods without getting gross, oily, tar like poops after. Also as much as I try to eat, I can’t seem to gain any weight. I am almost 5’5" and my lowest weight was around 98lbs, now I am around 102lbs. I even fainted from malnourishment. My liver numbers are normal but I get an ERCP every 6 weeks to keep them like that. I take actagol, vanco, and even tried pancriatic enzymes. Nothing seems to be working, I was even on 60mg of prednisone for colitis and it only slowed the weight loss. Thats right. I lost 5lbs on 60mg of prednisone. Then another 10 after i got off. Did this happen to anyone else?
I understand malabsorption of fat soluble vitamins is pretty normal. My Dr has me on D, E and B12 (not sure if that last is fat soluble). Fatty foods are a problem for me because I had my gall bladder out, so I have serious diarrhea if I eat too much fat (and it doesn’t take much). If I do eat a fatty meal, it helps a lot to take pancreatin within an hour or so. You mention the pancreatic enzymes, but are you taking them in conjunction with fatty foods? The frequent ERCPs suggest that you have significant bile duct constrictions. I suspect that may be part of the issue with fatty poops.
Most dietary fats require liver bile to be broken down and absorbed. As PSC progresses we have a harder time getting this to happen due to cholestasis. This is a big deal because fats are a great source of calories (twice as calorie dense as carbs or proteins) and are needed to absorb fat soluble vitamins (to avoid osteoporosis and other fun things).
One thing you can try is supplementing with medium chain triglycerides - fats that can be absorbed without liver bile and that don’t cause the liver to produce liver bile. These fats are pretty hard to come by naturally and your best bet is to supplement with either coconut oil (~60% MCT) or MCT oil (100% MCT). This stuff is pure fat so start out small until you get used to it. I used to dump a tablespoon of MCT in either my drink or a meal - it is tasteless but oily.
More information regarding MCT as a calorie/fat soluble vitamin supplement can be found here: https://med.virginia.edu/ginutrition/wp-content/uploads/sites/199/2015/11/AlnounouArticle-April-06.pdf
What brand of vanco are you taking?
I have weight issues but my doctor told me not to eat any fat. I am on a feeding tube in order to try to get some nutrition in me. I cant even eat or drink by mouth I vomit it all up. I am on the same medicine as you are on. I pancreas does not work and my weight goes down to 92lbs and I have got to 106lbs but that is far as I can go. Have tried talking to a nutrition? I would try this to see what they can do for you. I have one and she really does try her best to help out. I wish you all the best
Thanks for all the replies!
Unfortunately I do have many strictures throughout my liver and in my common bile duct. I used to take creon, 2 pills with every meal and 1 pill with every snack but for some reason my stomach got upset and I felt horrible, so we stopped. Though I am probably going to have to go back on it, and just hope it settles ok. Thank you for the suggestion of the MCT or coconut oil, I will ask next time I go to get my ERCP (Thursday). Also, I have indeed met with a few nutrition doctors and they gave me things to try. But honestly, I haven’t been able to keep up with it. It’s so hard to eat things like peanut butter when I know it’s just going to make my stomach hurt and get really bloated. The other problem I seem to be having, is my body really can’t digest things. If I eat something small, like 1/2 a sandwich, I will stay full for hours and hours. The only thing that seems to get things moving through is by forcing myself to eat something else to push it through. For example, I fasted for around 11 hours before my last ERCP yet before I was fully asleep, I threw up… real food. I am no stranger to throwing up things like stomach acid, dry heaving, or bile after the procedure but food? It was a horrible experience, I wasn’t fully awake but I was awake enough to feel them shoving tubes down my throat to help me breath.