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Update on FT..in a flare after 8 mos. Thinking I will try again.

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Ulcerative Colitis
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Posted 1/4/2013 3:38 AM (GMT 0)
Hi all, Wanted to give you and update on my FT. Having quite the flare up at the moment. I did FT's for quite sometime everyday in March 2012 and felt better right away. I then went to doing an FT every other day, twice a week, once a week every other week and then just randomly. I have have had UC for 17 years so I knew I needed to keep it up. I had random little blips now and then that resolved after doing a few FTs in a row. However, it seems nothing was going to stop the flare I  got before the holidays. I am not sure if stress has anything to do with my flares even after this long but it has been a very stressful time in our lives and that is when my body went haywire. I was put on 60mg of pred and have only agreed to pred one time before. I am tapering now. I do not want to go on Biologics as I want to try this again because I did have success. I don't see my GI until Jan 22. but I  think will try this again no matter what. I know some of you are interested in what happens to some of us that have tried this protocol. Wish desperately for better news but I am not giving up just yet...I am however not sure if I should start again when I am on such a high dose of Pred but I think I will.

Thanks

Donna  

Posted 1/4/2013 3:58 AM (GMT 0)
Sorry to hear your flaring again but you sound like your just taking it in stride. This is the first I've hear of someone using FT ongoing but why not. Who is your donor?

I'm thinking more and more of trying this therapy on my own but I think I have a ways to go before I get there. I'd do it in a heartbeat if I could with a doctor, locally. What finally gave you the courage to try? The biologics are which drugs? And you shouldn't do FT if your on them? How about imunologics like Imuran? ( at least that's what I think it is)
Posted 1/4/2013 4:26 AM (GMT 0)
i'd give it another shot, donna! why not? you've probably mastered it by now. i'd like to try it again, too, but i don't think i could convince another donor at all. plus i'm starting humira and if that gets me in remission, then there's no chance i'm putting poop up my butt when i feel good.
Posted 1/4/2013 5:34 AM (GMT 0)
"i'd give it another shot, donna! why not? you've probably mastered it by now."

ditto donna !
Posted 1/4/2013 5:38 AM (GMT 0)
"i'd like to try it again, too, but i don't think i could convince another donor at all. "

i'll send you some of mine - i've always been quite willing to give people shiiiit !
Posted 1/4/2013 5:40 AM (GMT 0)
Lodi - what are you waiting for ? you don't need no doctor to shoot poop up your hooter !
Posted 1/4/2013 6:20 AM (GMT 0)
Hi Donna
Sorry to hear that you are flaring, are you on any special diet or are you eating everything? I never thought of FT as a cure for FT, but more as a way of getting into remission and resetting the flora.
Posted 1/4/2013 2:34 PM (GMT 0)
Hi Lodi, My husband is my donor and has been tested. I am on Imuran and Asacol which I had decreased significantly since I started the FTs but I am now back on these meds including Pred. Before starting FT's, my GI was talking Remicade/Humira.

Yes, it has been mastered so I will try again;)

Curl, I have always agreed with you that this would not be a cure. I did always think of it as a type of maintenance it my personal case as I know I would have continued to flare w/o it. I am praying I can "reset" my flora and get back in to some type of remission. I ate anything I wanted while doing FT's. I am not really on any special diet but do need to eat better all the way around.

In your opinion Curl..Do you think  should start again while still on Pred?

Thank you!

Posted 1/4/2013 2:45 PM (GMT 0)
Donna - just curious - why would being on pred have anything to do with ft ?



(not curl)
Posted 1/4/2013 3:12 PM (GMT 0)
Soystud, I am not sure if pred has anything to do with anything..I thought maybe it would interfere with Flora of gut somehow. I am on 50 mgs and tapering..As long as I have had this Disease, I am not as familiar with Pred and hope it stays that way..so, just not sure really.
Posted 1/4/2013 3:29 PM (GMT 0)
That's interesting. I never thought of FT as just an ongoing treatment but I'm going to start thinking of that now.

I'm in a bad way UC wise at the moment and just started on imuran so I'm thinking its out of the question while I'm on this drug?
Posted 1/4/2013 3:42 PM (GMT 0)
pupluv, sorry to hear about your flare. As you know we have been doing FT since Dec 2011 for my son. Like you he was doing great for 8 months (med free) until September 2012 when he began flaring. At that point we were doing one FT every 3 weeks. He took pred and vancomycin to control that flare and we started daily FT again also. Now he has been med free for 5 weeks just on 5 FTs a week. I spoke with Dr Borody in the summer and he suggested we put my son on Imuran and do FT also. The imuran will help reduce the inflammation deep in the colon wall and drive any infection that may be hiding in there out and the FT bacteria can repopulate the flora.

According to Borody short term pred while doing FT is something he also recommends now.

So I would give it another shot once you get the inflammation under control with the pred and Imuran.

I agree FT is likely a good maintenance treatment; in conjunction with other treatments/diet etc.

Posted 1/4/2013 5:38 PM (GMT 0)
Hi Donna,
I don't think being on pred while doing FT is a bad thing. Hopefully the FT will help you taper down
Posted 1/4/2013 5:49 PM (GMT 0)
Edbar, I am so glad to hear your son is doing better. I am also on Pred and took Flagyl. I am also on Imuran(Aza) I have been on it a long time now and it does not seem to be helping at all. We were lowering the dose of the Imuran until this happened. Ive been on it for about 7 years now and its scaring me.

Curl, and Edbar..thank you so much. I am going to go ahead and start the FT's this weekend while taking Pred. I would rather do FT's as maintenance for life rather than go on bigger drugs..This flare really threw me for a loop as I was doing so well as far as my UC goes:(

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