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Fecal Tranplant via Colonoscopy tmrw

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Ulcerative Colitis
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Posted 6/25/2011 4:24 AM (GMT 0)
Hi, Stacy.

Glad to hear that another member is doing well.
I'm really happy that you've put yourself in great remission. Like CGK said, I hope your remission/cure lasts forever and keep us posted!

I'm interested in this method too and hope I can give it a shot if my GI is up for it.
Posted 6/25/2011 1:46 PM (GMT 0)
It has been wonderful reading about your successful FT. Relaying where and when you had it done (in the US! yay) and your progress has I'm sure given some people hope for their own UC.

Thanks for posting.
Posted 6/25/2011 1:56 PM (GMT 0)
Sadly my GI doc almost laughed me out of his office when I asked him about using FT for U.C. He said it is strictly for c-diff infections that don't respond to antibiotics.

sas is very lucky to have found a doc willing to do it. Most of us are stuck doing it ourselves if we want to try it.
Posted 6/25/2011 1:56 PM (GMT 0)
hmmm weird. duplicate post...
Posted 6/25/2011 3:13 PM (GMT 0)
I am not sure if this has been posted on here before. But I found this while googling FT. I found it very interesting.
My fiance wants to do this, but I am still hesitant. If I could have a dr do it, I would do it in a second. The doing it myself at home is what holds me back.

http://www.instytut-mikroekologii.pl/pdf/literatura/mikroflora_jelitowa/Bacteriotherapy%20using%20fecal%20flora.pdf
Posted 6/25/2011 4:00 PM (GMT 0)
I do feel very lucky to have had a dr. agree to go down this road with me. I know that it is not an easy find!

Thank you all again for the well wishes!
Posted 6/25/2011 4:19 PM (GMT 0)
What is the thought behind following a high fiber diet after the FT? I have read it in the document above and several places online.
Posted 6/25/2011 4:30 PM (GMT 0)
good bacteria love high fiber. that is what Dr. Borody recommends (the pioneer of FT) and what my dr. also recommended. I am loving it to be honest.
Posted 6/25/2011 4:39 PM (GMT 0)
I bet. There are so many fiber foods I would love to eat right now, but would pay dearly. I really miss eating big spinach and romaine salads loaded with veggies.
Posted 6/25/2011 5:42 PM (GMT 0)
This post is so interesting. I wish they would do more research on things such as this with very little to no side effects. Not to be cynical but I guess not too much $ in something like this. Sas, this is awesome! Please keep us posted!
B
Posted 6/26/2011 3:17 AM (GMT 0)
I just re-read this thread top to bottom because I had my dr. read it and he said it was fascinating, pretty cool, right? What struck me after I finished was how little (example: a beer or a cup of coffee) is what we desire. While a cure would be optimal, having UC sure has made us really appreciate such simple pleasures.
Posted 6/26/2011 3:04 PM (GMT 0)
Wow Dr. G, thank you for being open to experimenting with this procedure! I wish there were more doctors like you out there - I think we would be closer to a cure or at least have more treatment options available if there were.

I would love to come to NY and try this, I am in CA. Maybe some day...

I am happy to see sas have so much success. it is wonderful that there are some things we can try that are not chemicals.

Keep me posted on your success sas. :) I have to say, as much as I have been up and down, I do drink coffee/soda/alcohol if I feel like it, I eat sweets, junk food, whatever I want really. I am not convinced diet has much impact on my condition. I have tried SCD and I was no better off while on that diet.
Posted 6/26/2011 3:43 PM (GMT 0)
Hi,

I did have a follow up question doctor.
Maybe it was already stated, but did you also insert the donor stool by
gastro tube, or just by enema.
Posted 6/26/2011 5:52 PM (GMT 0)

Dr.G said...
If there is more interest in doing this procedure, the surgery center and I would be willing to open this up to more people.

Amazing to see a Doc join these forums and lend us sweet words like that! Just incredible.

Dr. G, you may have just opened the floodgates :-) I'm already thinking about doing this as soon as I get back on insurance through work in a few months. With a publicly available forum post like this, you may find yourself with a long waiting list of people anxious to try this treatment very, very soon.

With any luck, I will be right on there.

Just brilliant.
Posted 6/26/2011 6:14 PM (GMT 0)
Dr. G,

You are amazing, first for being willing to perform this experimental procedure, and second for being open enough about it to post and discuss here!

My boyfriend and I live in Seattle but will be on the east coast for three weeks this summer. We have family on the east coast, so we visit often and would be absolutely willing to travel to Rochester at any point to have this procedure done if we couldn't convince his specialist here to do it. That being said, his specialist does seem to be fairly open to alternative treatments, even including cigarette smoking in moderation since we know that has put my boyfriend into remission for extended periods of time before when other treatments haven't worked.

I have a couple of questions for you:

1. I assume since this is considered an experimental procedure, it would not be covered by insurance. Is that correct?
2. Would you be willing to discuss this offline? If so, would putting my boyfriend's GI specialist in touch with you be best, or would it be better for us to discuss with you ourselves?

Thank you so much for contributing. I think I speak for everyone when I saw how much we appreciate your insight.
Posted 6/26/2011 7:38 PM (GMT 0)
Dr. G.,

I live in Rochester and am a patient of Dr. David Hamilton right around the corner from you!
I'd love to speak with you about this for my UC/UP.

I will be calling your office tomorrow!

Thanks!
Eph
Posted 6/26/2011 8:14 PM (GMT 0)

Dr.G said...
The procedure is experimental and would not be covered by insurance.


Interesting. Then to answer what will no doubt be the most common question you receive, what are the approximate costs of the entire procedure (including testing donor feces, hospital stay, etc.)?

Dr.G said...
I will try my best to answer questions in a timely fashion at least once a day.


Thank you thank you thank you :-)
Posted 6/26/2011 8:22 PM (GMT 0)
sas,

How wonderful! What an incredible experience. I wish you continued remission and good health!

You were incredibly lucky to find an open minded doctor who would be willing to listen to you. That's certainly a rarity in itself.

Please keep us apprised. wink

Posted 6/26/2011 8:27 PM (GMT 0)
sas, can you please tell me if you were flaring at the time of the procedure and if so, was it severe or mild? Has your UC been considered mild, moderate or severe in the past? Have you ever been on prednisone?

Just trying to track the conditions under which you had success.
Posted 6/26/2011 8:30 PM (GMT 0)
The results of this study by Dr. Borody are phenomenal. Ya, the number of treated patients is really small, but the results are OUTSTANDING. People have been UC symptom and med free for over a decade after FT therapy!

http://prdupl02.ynet.co.il/ForumFiles_2/28701499.pdf

SAS, you're future is looking very, very bright! Perhaps you could also answer the question I just asked to Dr. G about costs. All in all, how much was it for the entire procedure for you?

Thank you both for bringing this to light!
Posted 6/26/2011 10:52 PM (GMT 0)
Gosh, I wish I lived in N.Y. as I would definitely give this a try if I could.

Thanks Dr. G. for having the courage to stick your neck out. Honestly I don't know why FT is so controversial. In any case, what does controversy have to do with science? Science, including medical science, should be based on evidence as much as possible. Until a large scale, controlled study is done, we don't really have satisfactory evidence either way, but the small scale evidence obviously warrants further investigation, especially considering the low risk of side effects from this procedure.
Posted 6/27/2011 1:42 AM (GMT 0)
Not so sickly - Yes I was mildly flaring at the time of the FT. At original diagnosis (1996)I had severe pancolitis, which took a year to tame with a 3 week hospilization and steroids that I took for 7 months. (which i HATE). I had a 9 year remission and then have been flaring on and off for the past several years. I am not sure what it ended up costing in total, I will take a look and let you know. I did not have to have my husband tested as my donor specifically because he had been previously screened. I actually originally had a 6 month old breastfed baby as my chosen donor, who did not produce. My husband stepped up last minute.

I did have to provide a blender :).
Posted 6/27/2011 1:56 AM (GMT 0)
That's awesome!!  Keeping my fingers and toes crossed for you.  Pls keep us informed. I can imagine the freedom and sense of relief when going out with hubby.  Congrats to him too!

I have not heard much about FT before and don't know if it's available in Canada.  Where do you get the donor from?

Ruby

Posted 6/27/2011 4:06 AM (GMT 0)
This procedure worked for my wife as well. We actually did it at home using the little Fleet enema bottles. The only thing we needed the doctor for was the prescriptions for antibiotics to take before the procedure...and it appears those are optional as well. I was the donor and the doctor had me tested for a whole slew of infectious diseases as Dr. G mentioned. If you have any pain / bleeding then you need to read up on this procedure and do it as soon as possible!!!!! Do not wait because you think it is disgusting. How disgusting is it every time you have to go to the bathroom and bleed your guts out?

Unfortunately we dragged our feet before doing the transplant and my wife wound up having a stroke before we did it, hence the warning to do it asap. More and more information is showing up everyday. I've even started a facebook group...Fecal Bacteriotherapy is "The Bomb"...to increase awareness of this procedure since it had such dramatic results with my wife.

/www.facebook.com/ccfafb?sk=app_134175179988792#!/pages/Fecal-Bacteriotherapy-is-The-Bomb/183707615019796

There is also a very long discussion about this procedure and various people's results on this forum. Do a search for "i took the plunge" and read everything. After reading all of the "i took the plunge" discussions, I knew everything I needed to know in order to do the procedure myself, at home. Please get your donor tested and make it happen. Definitely do not go off and have surgery without trying this first!
Posted 6/27/2011 4:24 AM (GMT 0)
Any healthy person can be a donor as long as they pass screening for the various things the Doctor mentioned in the post above.

I would use my 13 y.o. son because he has never taken antibiotics, which, of course, disrupt the natural balance of flora in the colon.
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