i was just hospitalized for a month, so i know how you feel. it is so frustrating to be kept in this little room while life goes on outside... but this is rock bottom and it will end and you will get to leave and go back to school and do all the things you love again, i promise, this is only temporary!
like you, i didn't respond to oral steroids so they upped the dosage and gave me IV steroids, but that didn't calm my flare either, so they started me on remicade in order to avoid surgery. i've never taken any other medication for colitis, as it was pretty manageable up until now. i hope the IV steroids do the trick for you!
miss prim is talking about
TPN (total parentarel nutrition)--they give you a picc line into your arm and the nutrition goes right into your blood and bypasses your whole GI tract, giving it a rest while at the same time giving you a baseline of what you need nutrition-wise. I was on it for about
a week and I think it did help calm things down in my colon. the docs didn't want me on TPN for long though because they said it gives too much to the liver to deal with (since the gut isn't doing anything) and increases risk of blood infection. plus the doctor was adamant that in order to heal, the colon needs to be digesting food because it helps regenerate the lining and "re-teach" the colon how to basically do its job. but i did just finish a book ("the man who couldn't eat" by jon reiner--really good, a memoir about
his life with crohn's) and he was on a TPN pump for MONTHS. if you are losing a lot of weight, they will probably put you on TPN, which is a good thing.
hang in there and keep us updated! lots of love out to you!
23 y/o F. diagnosed proctitis june '13. current flare spread to pancolitis, hospitalized for a month. general diet (when not flaring): plant-based, whole foods, gluten-free. try to stay away from sugar. current meds/suppl: remicade (2 infusions so far), 40mg pred (taper), multiv, folic acid, iron, bowelcare, lemon/ginger tea, l-glutamine.
Post Edited (voletasam) : 6/10/2014 10:24:10 AM (GMT-6)