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Prof Borody GI Appt in a few days.

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Ulcerative Colitis
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Posted 4/29/2013 10:52 AM (GMT 0)
Hi there. I'm a long time reader, short time poster.... LOL

I'm heading in to see Dr Borody in a few days as my UC has flared up badly despite the maintenance dosage of Sulfasalazine I've been on for years.

First flare was of 2 years duration (17 years ago) treated with Sulfasalzine. I was

Last flare 3 years ago (18 months duration) resolved eventually with mesal enemas and sulfasalazine (and a two month pred dose). Was moderate to 25cm.

Now flaring worse than ever and in meds not responding (sounds like a common theme for some of us). I feel its only the steroids keeping me reasonably normal. Am also on mesal enemas, higher dose of Sulfasalazine and 1 or 2 20g pred enemas/day. Not getting any better or worse. Am doing SCD (but cant make the yoghurt) and have VSL#3 also.

I really must get this thing sorted out and im hoping that Dr Borody will be the key. Clearly I'm hoping his FMT/HPI will give me some hope. I fear that surgery seems to be appealing more to me every day.

Apparently I have a short consult with him before a colonoscopy and wondered what questions I should ask him during the consult?

Cheers
Posted 5/29/2013 6:23 PM (GMT 0)
Hello,

I just noticed this post now. I assume you've already met with him. Basically, how did the meeting go? I'm considering preforming FMT at home.
Posted 5/29/2013 9:33 PM (GMT 0)
Yes, I'm curious also.
Posted 5/30/2013 12:14 PM (GMT 0)
m-dot it took me quite a few years of meeting with prof B to get the home protocol. You will end up meeting with someone called Sandy or Sandra and she manages the whole thing. If you can afford it I would recommend just doing it through them as they have donors and can do it easily there. If you can't afford to do it through them then at least get the donor testing kit off Sandra (cant remember her name but just tell reception the girl who manages fmt).. get your potential donors tested and call Sandra a few weeks later to see if your donor is approved. Also you have to decide about the use of antibiotics before. Prof B always does the 3 antibiotics to kill off all the bacteria. Other people/ places around the world don't do this. Its up to you what you choose and depends on your view of antibiotics.

Jimbo + Chicago if you have any questions im happy to help. I still havent done fmt but have been meeting with prof for a few years about it. I cant afford to do it through him, but will be doing it at home in the next few months- still looking for a suitable donor!
Posted 6/8/2013 5:00 PM (GMT 0)
Thanks,

I am planning on trying fmt as soon as possible. My donor is being screened, so if that comes back clear I will be ready to go.

I didn't incorporate any diet or antibiotic treatment into my protocol, so it will basically just be the infusions for me. Do you know if prof B considers diet/antibiotic treatment essential to one's success? Any other tips are appreciated.
Posted 6/9/2013 4:51 PM (GMT 0)

AUSSIET said...
m-dot it took me quite a few years of meeting with prof B to get the home protocol. You will end up meeting with someone called Sandy or Sandra and she manages the whole thing. If you can afford it I would recommend just doing it through them as they have donors and can do it easily there. If you can't afford to do it through them then at least get the donor testing kit off Sandra (cant remember her name but just tell reception the girl who manages fmt).. get your potential donors tested and call Sandra a few weeks later to see if your donor is approved. Also you have to decide about the use of antibiotics before. Prof B always does the 3 antibiotics to kill off all the bacteria. Other people/ places around the world don't do this. Its up to you what you choose and depends on your view of antibiotics.

Jimbo + Chicago if you have any questions im happy to help. I still havent done fmt but have been meeting with prof for a few years about it. I cant afford to do it through him, but will be doing it at home in the next few months- still looking for a suitable donor!

Hi Aussiet, can you mail me please? I'd like to ask you a few things about a FMT. Thanks
Posted 6/13/2013 3:58 AM (GMT 0)
Hi sweets.. emailing you now xx
Posted 9/15/2013 9:48 AM (GMT 0)
Hi m-dot, was wondering if you met with Borody and did FT yet? i am booking my FT procedure tomorrow and hopefully will do it in october and have to decide about antibiotics, did you take them?
Posted 9/15/2013 11:35 AM (GMT 0)
@delta Borody helped organise my treatment. I'm only 3 days in. I chose not to do the antibiotics but he swears by it. I was on the recommended antibiotics for a couple of months about a year ago so I just decided to give it a miss this time. Borody is the best. He knows his stuff. My advice would be to do the antibiotics because you dont want to leave anything to chance. I didnt do it because I am pretty sure all the antibiotics i took last year through him would have killed any pathegeons etc but its up to you and your history/ case etc
Posted 9/15/2013 12:28 PM (GMT 0)
Becareful. I was a patient at Dr. Borody's clinic under the care of Dr. Anthony Wettstein and the treatment made my symptoms worse. Not trying to dissuade anyone from FTs, just be cautious. Now that I am worse, none of the doctors at the CDD care to listen or offer any assistance because they too don't understand their "treatment".
Posted 9/16/2013 12:19 AM (GMT 0)
THanks MaxMilian, that's why i am questioning the antibiotics, they are very busy and it's hard to get to them. i know one of their patient and she is not receiving any attention even though the treatment didn't work and she is in the hospital with super flare.
Posted 9/16/2013 9:16 AM (GMT 0)
Maxamillian how long did you do the FMT for and was it every day?
Delta- what about the person you know? How long did they do it for and what frequency?
Just wondering because im doing it at home now..
Posted 9/16/2013 10:42 AM (GMT 0)
she did it for a week at the clinic every day and then for couple of months at home i think once a week, she had a massive flare and ended up in the hospital the doctors said the only option she has is surgery, but she wants to try FT again once stable just to be sure that it doesn't work. i don't know i mean i really want to believe that his method would be my cure but it doesn't work for everyone, i've tried to ring the clinic today, left a few messages but yet to hear anything back, as i said the super busy and hard to get
Posted 1/26/2017 3:26 AM (GMT 0)
Hi Aussiet,
I'm not sure if you will see this, as this thread seems to have died long ago... however, if by some chance you do, I was wondering if there was any way I could chat with you briefly -- I am considering going to CDD and am trying to figure out a few things and would love to ask a few questions. Thanks so much!
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