the low down on FT at Jackson Siegelbaum Gastro.

tcf5010 said.....
I'm actually scheduled to get an FT done at JacksonGI on April 27th. My donor is my moms friends son whose around the same age I am. I was under the impression I was only getting one colonoscopy. Is the 4 scopes something you requested? They told me I don't have to go on antibiotics. And after the procedure they're going to have me take immodium so I can hold the new bacteria in for at least 6 hours.


I have been following FMT thread for some time now. I find it very informative and promising for UC patients. My son has UC and is flaring for a few months now. We are seriously considering the FMT. Actually, we are looking for clinics in the US that will do the procedure on my son. He is on prednisone, Imuran and colazol but hasn't been able to control his flare.
tcf5010, you had posted that your FMT will be on 4/27/12 i.e. last Friday. I hope every thing went well. When you get a chance, I would like to know your experience at Seigelbaum clinic.

bananagirl said...
I am going to call them back after 30 days and tell them how well I am doing!

Joanna

I love your attitude!

My son went from 20+ BMs a day in November last year to 1 BM a day and no meds for 10 weeks because of FT. His flare was being controlled by pred when we started FT but the severity of his disease was still there. I know of a guy who was hospitalized with crohn's with severe symptoms (in fact his mom said he was extremely ill) and all set for surgery when his mother decided to do FT at home. She did an intense protocol of FT and now he is doing great and been med free for a year. My point is that FT has proven to work for some people but it requires dedication and willingness to do it long term (IMO).

The did make a good point about FT working better when you are having fewer BMs hence my post yesterday about using pred while doing FT. But I know this is not possible with you since you had a reaction to pred.

Serenity,
By remission, i think it means with symptoms controlled as well as possible (ideally none) through the use of pred or other meds. I think many people get on meds or use pred and then try this as a way of hopefully getting off. Obviously if you're happy with your meds or in a med-free remission then there's no point in trying this. It's easier for bacteria to colonize a colon that's not inflamed obviously.

[bananagirl said...........
CURE4UC, i wanted to see how it went with you?]

bananagirl,

I haven't heard from them yet. They are slow. it's been >3 weeks since my son's records have been sent. Before last week nurse said that doctor was on vacation for two weeks, he has your records now and will review soon.

My son has to increase prednisone to 30 mg now because he has cramping and has to go in the night too. We are talking to Dr. G in California who is willing to do FT via colonoscope. By the way he is planning to do FT on several patients and is recruiting some where 20 or more cases with UC. If any one is interested, they can contact him. I guess he will generate some data this way, which is great. I have called so many places in US and they say well, we are waiting for data if there is enough data to support FMT for UC then we'll start. I was so frustrated, so I started saying that where the data is going to come from if every one is waiting for someone else to this?

Edbar, what kind of dose of prednisone your son was on at the time of FT? Did he have cramping too? My son developed eye problems (leaks) last time he was on high doses of prednisone so we are worried for his eyes this time and want to move on FT asap.