Need advice FT Donor Help

Allykat.
What are your symptoms? Have you tried the new steroids that have less side effects? Have you tried a phone consult at CC?

I'm still struggling also and I knows next visit will be time to decide on perm ostomy or try pouch advancement, the latter only being a possibility if my anal canal is not severely deteriorated. Drugs have not helped me either and its been 1.5 years of trying.

I hold you find an answer to help you.

Ugg, anal pain, diareah, stomach pain, chills, etc, etc. had a scope in Nov, showed inflamation. Tried endocort! felt great! GI wants me on it long term cause all other meds have fail! see signature! I've done it all. Msybe the paleo diet Im not strict enough? I'm losing more weight on it,not working? Saw surgeon! told me to try augmentum? I don't want to be on long term endocort? I already had c diff so I'm trying to avoid antibiotics as well. 14 years, enough! Surgeon is NOT recommending removal. I think we use the same surgeon at Cornel. Ps.I even had pouch advancement.

I'm so sorry. If this helps you at all i have been on cipro for over two years pretty mich constantly with pretty good results Our surgeon (jm) I believe ? had me on Augmebtin also. Only you know how much pain and discomfort you can tolerate. It's easy for the surgeons to not recommend removal when they has no real comprehensive of the pain some of us endure.

Maybe you need a longer stint on the endecort? Are you willing to try Augmentin? I know they say taking probiotics with antibiotics does not make sense but maybe it will help you avoid c diff if you try the probiotics while taking the antibiotics.

There's no benefit of using a relative for a fecal donor (other than the impracticality of asking a stranger). I'd stay away from IBS or possible UC, if you can. It's hard to argue that it's the donor's financial responsibility to get the stool tested, since it's entirely for your benefit. Perhaps your doctor can suggest a donor (someone with great digestion)?

what are the new steroids you refer to Jeanne?
By the way, my son had his surgery done at cornell (SL) and has a rectal cuff that is too long. He does not have typical cuffitis symtoms though - but he gets very sick and always needs antibiotics. I am also interested in FMT.

The new steroid is endocort. It on.y gets absorbed in your pouch but still over time u get steroid problems like the teal deal. It's only meant for a short course and then u still need something for maintance. Altough some GI are using it longer but then u have problems.
As for a relative! after reading the FT protocol it says that for UC you need to do it every day for at least a month then taper. So living with someone is easier since y on.y have a 6 hour window, according to the book. I have no other family closer and can't even imagine asking a friend or neighbor? They r all clueless to this disease.
Yes Jeanne im calling the surgeon today for the augmentum since the xifaxan and Pentassa r useless. And our surgeon was like, I never take a pouch out because of pouchitis, and quite frankly I'm terrified of another major surgery. Should of had the CC take the pouch out 14 years ago instead of letting M save the rotten thing.