Hello! My daughter, Lindsay, was diagnosed first with Primary Sclerosing Cholangitis 5 years ago, and then a year later with Ulcerative Colitis. Lindsay is now 11 years old and she has come a long way. She controls her UC with the SCD diet and some supplements. She is diarrhea free, but not symptom free as she suffers from constant headaches and fatigue.
I guess from her autoimmune problems, Lindsay seems to catch every illness that goes around the school. Whatever the illness is, even if it a stuffy nose and sore throat, always leads to loose stool for her. And that can linger a couple weeks.
Anyway, Lindsay sees an Integrative doctor who recently gave her a prescription to Enteragam. I had never heard of it. Lindsay’s gastroenterologist never mentioned it, even though she really pushes every other drug that is out there. He knows that my husband and I want to keep avoiding medications as long as we can. He explained that Enteragam is a prescription food. It is powder that you can mix in a drink or soft food. It never gets absorbed into the blood, so there is no chance of side effects.
So, Lindsay came home sick with a virus and being run down and the diarrhea started. I gave her this powder with coconut water to hide the taste, which wasn’t too bad I guess because she didn’t complain. By the next morning she had formed stool! It was amazing!
I am writing to hear how others have used enteragam and if it is in fact side effect free. I know she was not in a crazy big flare but was very happy how it worked. I kept giving it to her once a day and as she got better it worked too well and her poop started getting hard so that was no good. But she didn’t need it anymore I guess.
Our doctor did say that many insurance companies do not cover this prescription and if they don’t it is expensive. We were lucky though that ours covered it!
If anyone can write back with their experience using enteragam – how they use it, any side effects there may be. That would be so helpful to us. Do you take it even when you do not have diarrhea or only when it flares up? Does anyone else’s child take it and do they use a reduced dosage?
Also, of course, my other reason for writing it that I hope that this post might help someone else who is suffering since Lindsay’s gastro never ever mentioned this as an option.
Thank you so much for the help!!
Written by Lynn
I am the mother of a beautiful and wonderful 10 year old little girl named Lindsay who was diagnosed w both PSC and UC.
