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Fecal Tranplant via Colonoscopy tmrw

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Ulcerative Colitis
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Posted 6/27/2011 2:45 PM (GMT 0)
thank you for responding sas. It sounds like your case is pretty severe. I was curious because some treatments seem to work better for people who have more mild cases of UC (supplements for instance). It sounds like this is a hopeful solution for people with UC of all severity. It's wonderful to hear that you're doing so well.
Posted 6/27/2011 8:52 PM (GMT 0)
Hi Dr G.,

Thanks for taking the lead on this exciting treatment possibility for the UC sufferers.

And Yes I am very interested in the procedure with my wife or daughter as a donor. I am out of country for next two weeks but will call your office soon after I return. Right now I just want to make sure that you hear from all of us who are keen to try this procedure.
Posted 6/28/2011 10:26 PM (GMT 0)
Still holding sas?
Posted 6/28/2011 10:39 PM (GMT 0)
I'd love to do this procedure but finding a donor is the problem for me. Personally, I wouldn't take any of my family members as a donor b/c there poops don't look healthy(yea.. I've looked at their BMs) and took several antibiotics over the years for different reasons. Maybe
I might ask a friend? haha

Also, it takes more than 6 hours to drive up to Rochester from NYC area, I'd rather fly over there..
Posted 6/29/2011 12:23 AM (GMT 0)
Mom2Panda: It has been 2 weeks from FT and I am symptom free. In addition to being symptom free, I am hungry and going crazy with food...mostly healthy stuff though that i have a tough time with when flaring. I am going to reign the free for all with food in soon...just enjoying this new found freedom to go for it. Also I have been back to the gym where for the past several years no matter what the workout i always had rectal pain. The other day I ran on the treadmill with tears running down my face, because i was pain free. It was so awesome.

I am still taking this day by day. Every time I have the urge to go poop I have an anxiety attack with what it could be and so far it has been all normal! Imagine!

I have went from 4 Lialda a day to 2. Time will tell! I am staying positive and hopeful.

Stacy
Posted 6/29/2011 12:28 AM (GMT 0)
Great news, Stacy! I am so happy for you! I tried the home version without much luck, but having it done via colonoscopy through the whole colon would be so much more effective!
Posted 6/29/2011 12:28 AM (GMT 0)
College Student: I have asked my close friend if she would be my donor if I had needed her to be. I also asked my friend if his daughter would be my donor. Both were happy and eager to help. People that I have shared this experience with are fascinated with the possibilities of what FT is and how it it has the potential to help. I would not hesitate to ask a healthy friend if they would want to donate. They would have to be screened and for best results be with you when you had the transplant.

I will also tell you that my good friends, the ones that have helped me through really sick times are so thrilled that I am feeling healthy.

Healthy friends are an option!!

Stacy
Posted 6/29/2011 1:53 AM (GMT 0)
Stacy, and word on the cost of the procedure?
Posted 6/29/2011 2:01 AM (GMT 0)
I think its going to end up being over $1000 - we are still waiting on billing. I had full on anesthesia for the c-scope, which was an additional fee.
Posted 6/29/2011 2:02 AM (GMT 0)
Ok. Keep us (me haha) posted!

Depending on the costs, I'm considering flying to NY to get this done.

Congrats on the success!
Posted 6/29/2011 2:04 AM (GMT 0)
i will keep you all posted. thank you all for the well wishes. i hope it works for you too!!
Posted 6/29/2011 2:40 AM (GMT 0)
Sas,

Did you just perform 1 infusion.

I assume insurance covered nothing?

thanks
Posted 6/29/2011 1:04 PM (GMT 0)
I just woke up with a great idea (subconscious at work?): even though I am in remission and would say I am 98% functional now I am still faced with a lifetime of taking pills. I think driving/flying to NY (I am in FL) to do this would be a good idea given my age (56) in order to totally restore my bacteria to equilibrium and be able to quit pills and expensive probiotics. Luckily I have a very healthy DH as a donor.

I will be following sas's story in the coming months and perhaps others will report back also to gather more information.
My pills (Balsalazide) are much less expensive than Asacol but having a high deductible means I pay for them every month forever and ever, that's over $1300/year for Rx and there's another $1000/yr for VSL#3=$2300 total. The cost/benefit analysis is obvious in just 1 year. If I were still on Asacol and paying for it my costs would be soooo much more, probably make it to my $6100 deductible as I did in years past.
Posted 6/29/2011 6:09 PM (GMT 0)
Dr. G. - I suspect I may be that other person in Rochester. I just set up an appointment and am looking forward to it!
Posted 6/29/2011 8:48 PM (GMT 0)
Doctor,

I'm just wondering if you only performed 1 infusion?

thanks
Posted 6/29/2011 8:59 PM (GMT 0)
This is so exciting! Please keep us posted. I'm considering trying the home version with my husband as a donor, but would really prefer doing it with a doctor.
Posted 6/29/2011 9:34 PM (GMT 0)

Dr. G - my UC is distal (ulcerative proctitis).  I'd like to try this at home first before I spend the money to come to Rochester.  Do you think it's ok to do this while flaring and actively bleeding?  Or should I wait until things are more settled?

I think it's awesome you're doing this!

Posted 6/30/2011 12:45 AM (GMT 0)

sas said...

I am still taking this day by day. Every time I have the urge to go poop I have an anxiety attack with what it could be and so far it has been all normal! Imagine!
Stacy

Great to hear that you're having such a positive response! I too am taking it day by day. I had a small relapse about one or two years ago due to antibiotic use. I recovered from that by doing another round of FT. I too know that I'm lucky though and am being extra careful.

My new job requires me to travel. I'm enjoying it :)
Posted 6/30/2011 2:02 AM (GMT 0)
subdued - are you taking any meds right now for UC?

thanks and so glad to hear that you are doing well and enjoying the traveling.
Posted 6/30/2011 4:29 AM (GMT 0)
Dr G

I just wanted to add my voice to those who have expressed their encouragement for your willingness to preform this procedure for those with UC. I am currently in remission and have been since a postpartum flare for which I had to take pred. I would have tried to do a FT at home had I not been breastfeeding (was reluctant experiment while nursing even though the transplant appears safe). I have been feeling great for about 7 months but I know it will not last forever. When I do experience those dreaded symptoms again (and if I am not still nursing) I will be seriously considering this approach.
Posted 6/30/2011 2:55 PM (GMT 0)
Could someone direct me to the link on how to do this at home. I am very interested in this procedure. I am also condidering Dr. G procedure.

Thanks

Steve
Posted 6/30/2011 4:12 PM (GMT 0)
I am getting so excited following this thread every day! SAS definitely continue to keep us updated.

Dr. G, I think it is amazing that you have been so willing to extend this opportunity to the rest of us here at the forum!

I have an appointment with my GI next week and I intend to bring FT up with him then. He and I have yet to really discuss alternative therapies as we've been going the traditional down-up med approach. I started on various 5-ASA's, all of which I had terrible adverse reactions to and we've since moved on to azathioprine. Its a bit too early to tell if the aza is working but if it doesn't I would definitely consider an approach like FT before I moved on to the biologics as the side effects are rather worrisome. Additionally FT offers the possibility of remission without life-long meds to worry about! I'm especially hopeful that FT may be a promising option for me as my UC came on after prolonged antibiotic use for acne in my teens.

My GI doesn't really strike me as being too open to nontraditional treatment but I definitely intend on showing him this thread and hopefully a concrete example such as this one coming from a fellow medical professional might convince him to give it a shot. And then maybe (ideally) we can start working on opening up an opportunity for in-office FT a little bit closer to home for those of us in the midwest. I would really love for Dr. G's intrepidity to have a snowball effect on the rest of the community of IBD docs!

That may be wishful thinking but hey... a girl can dream, right?!
Posted 6/30/2011 4:36 PM (GMT 0)
Diaper Man,

Here is a link with a basic run down of instructions. Also if you put I took the Plunge in the search of this site you will find a long thread with peoples personal experience and their individual processes they used.

http://www.drmyhill.co.uk/wiki/Faecal_bacteriotherapy

The only difference from the above instructions is from the doctor in Australia and from people on here it is recommended to follow a high fiber diet after. The above link just references resuming a normal diet.
Posted 6/30/2011 4:57 PM (GMT 0)
Thanks Cupcakespnkgal
Posted 7/1/2011 1:44 AM (GMT 0)
Good stuff Dr. G
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