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Originally Posted by Laura
Okay!!
Anyhow...
My first apt at DF went great. This is my understanding of the plan.
Once I can stop the pain medications from a recent surgery. If able, he wants me to not take any of my current GI medications while going through the step process we have in place.
1) No lactose-down to the last detail, including none in medications. If things don't improve within 1-2 days this is not the factor.
2) Gluten free diet-He is unsure how long we should test this out before moving onto number three.
For the above two items, the theory is that GVHD can cause autoantibodies to the two above things including the low PLTS now, which is questionable.
If the above two show no improvement.
3) Pancreatic enzymes. I think the one he mentioned was Creon.
On a side note-he wants to know why I am having the issue with the B12 malabsorption. He questioned that it was not being absorbed properly in the ileum. He thinks the 1000 mcg daily is sufficient to currently treat this. This leads to number 4)
4) If not absorbing properly in the ileum not only is there malabsorption of B12 and probably other things. So this would lead to the question if the bile salts are not being absorbed, which causes bile acid diarrhea. The treatment for this is Cholestyramine.
And if none of the above bring any success...
5) Dana Farber has noticed a new condition they have yet to name. They currently call it Cord colitis. Because they have seen multiple people who received cord transplants who have similar symptoms, which are similar to mine. There really is nothing in literature yet. He said just because I didn't have cord blood doesn't mean I don't have it. He said the reason why he thinks I could have this is because my symptoms fit theirs and that Flagyl makes it better. He said they treat this with Cipro and Flagyl. It could be treatment for months to years. He said when I told him about how the Flagyl makes it better and when I stop it, it makes it worse, this totally hinted him towards this.
He also wants to do some switching up of medications...mainly getting rid of as many as possible to wipe things clean.
Laura
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Glad to hear you are with someone who will look at all you have going on. The gut connection is soooooo important to health. People don't realize how many illnesses are tied to the health of our GI system. Many auto-immune disease have a direct correlation with GI unbalances.
Creon is the digestive enzyme used in Cystic Fibrosis patients since they are not able to secrete them.
Also, you will be amazed at how much gluten is in processed foods. You will also have to find out if your meds are gluten free. This is a tough one to do and will require some advanced meal planning.
Have they considered putting you on a prescrip probiotic? Possible the one they use for Crohns/IBS patients?
Sounds like you are good hands and it's about time!!!!! So sorry you had to go through all that you did to get someone's attention.