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Fecal Tranplant via Colonoscopy tmrw

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Ulcerative Colitis
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Posted 7/1/2011 1:48 AM (GMT 0)
Dr G - Thanks so much for your response and prep suggestion. It's very much appreciated. Now all I have to do is try to coordinate everything with my donor's ability to produce the goods. That seems like it might be tricky because I'm assuming I want fresh donor material.

Post Edited (Luv2Jump) : 6/30/2011 7:52:59 PM (GMT-6)

Posted 7/1/2011 2:13 AM (GMT 0)
The original donor that I had chosen was a baby, I had the parents track the time of day the baby had a BM. As fate would have it, the baby did not produce on the day of my FT. (my husband ended up being my donor)

Maybe having your donor track their bm's for several days to decide on best time to do your FT.

Good Luck! Please let us know if you do the FT.
Posted 7/1/2011 2:22 AM (GMT 0)
I'm going to use my daughter and I've asked her to keep track so I can determine a schedule. So far she doesn't seem to remember when or if she's going though. Any idea how fresh it has to be? Obviously the fresher the better but do I have 5 minutes, 15 minutes, an hour etc. Stacy, do you know about how much time passed between when your husband produced and when it was implanted?
Posted 7/1/2011 5:03 PM (GMT 0)
It was a quick turn for us. Maybe a half hour. I have read thought that it can be up to 6 hours old.

Good Luck!
Posted 7/1/2011 10:50 PM (GMT 0)
Thanks Stacy! Be sure to keep us posted on how you're doing.
Posted 7/2/2011 12:55 AM (GMT 0)
I will keep you posted.  As of today, I still feel great! 

I am very interested in others peoples experiences as well.  I hope that this helps you all too.

 

Posted 7/2/2011 5:43 AM (GMT 0)

Luv2Jump said...
I'm going to use my daughter and I've asked her to keep track so I can determine a schedule. So far she doesn't seem to remember when or if she's going though. Any idea how fresh it has to be? Obviously the fresher the better but do I have 5 minutes, 15 minutes, an hour etc. Stacy, do you know about how much time passed between when your husband produced and when it was implanted?

The reason I'm in remission today is because of FT.

I think the fresher, the better. When I did FT, I used the poo within five minutes. It basically went from diaper or tioilet to butt within a matter of minutes.

I also think the less damaged the colon is and the less inflamed it is, the easier for FT to take hold. The main issue for some is that the bacteria just doesn't multiply. A healthy colon is probably more likely to provide a better environment, allowing the good bacteria to multiple. When I did FT the first time, I was no longer in a serious flare. But I was pred dependent. I couldn't reduce my dosage below 30 without the blood coming back. The second time I did FT, I was fighting off recurring, but very minor flares due to having taken antibiotics.

For this reason, I would think that doing FT in a doctor's office would have a higher success rate than doing it at home. Enemas can only go up the butt so far. I didn't have the time nor the funds. That's why I did it at home. Besides, I don't think there are any local GIs in my area who are willing to try FT.

Post Edited (subdued) : 7/1/2011 11:57:08 PM (GMT-6)

Posted 7/2/2011 6:47 PM (GMT 0)
As far as time, I have read the sooner the better, ideally within minutes. Somewhere I read that certain bacteria start to die when exposed to oxygen, so the longer between your donor producing and you implanting risks the less good bacteria you are receiving.
Posted 7/2/2011 8:05 PM (GMT 0)
Hi Dr G
Very excited that you have stepped up with an open mind to offer FT in a controlled medical environment. I live in the UK but would seriously consider bringing my daughter to the US if results continue to look so promising. Have you seen the Nature artical 'Enterotypes of the human gut microbiome?'
http://www.nature.com/nature/journal/v473/n7346/full/nature09944.html#/detection-of-enterotypes-cross-national-clusters
I wondered how this feature might affect the sucess rate for matched or unmatched donor/recipient pairs?
Sue
Posted 7/3/2011 8:51 PM (GMT 0)
sas,,,, I just posted a question about FT,,,and then came across your posts here. I am so happy to hear you're doing well. It gives all UC sufferers hope.
I'm trying to convince my son to do this,,but he has this "thing" about putting someone elses poop up his butt,,,but...hey, if it works,,Hell,,,I'd do it for sure.
But maybe it's a man thing to be leary of this,,and women are far more adventurous and trusting... :-) Continued good luck.. If this really works,,it would pay to have it done once or twice a year. Sure beats these expensive Remicade treatments....and who knows what kinda long term reactions down the road.
Posted 7/4/2011 12:40 AM (GMT 0)
Hi cra43

I actually posted back to you before I saw this. Thanks for the well wishes! I hope your son will give this a go...for me, so far, it has been life changing.

Good Luck!
Posted 7/4/2011 5:37 AM (GMT 0)
What a fascinating and utterly exciting moment! I am thrilled at your early success and anxiously await your updates. And how refreshing to see an MD out there getting his hands dirty, so to speak! I have been flaring since April on 40mg Pred, 3200mg Asacal daily, and just started 6MP last week and things are worse than before. I am seriously considering this procedure should positive reports continue.
Posted 7/8/2011 2:03 AM (GMT 0)
Keeping the thread alive!

Dr. G, I was wondering if there has been any forward progress with the other guinea pig from Rochester you mentioned you were in talks with to do the FT via scope?

(Eph I believe you thought that may be you so please feel free to update us as well!)

Thanks!
Posted 7/8/2011 4:22 PM (GMT 0)
i saw Dr G recently - i know that he is out of town right now.

He was talking to an attorney to make sure he gets the right type of consent forms to be able to perform further FT.

I would be interested to hear if anyone else has discussed getting this done with either DrG or other GI docs.

I am still symptom free and taking it day by day :)

Stacy
Posted 7/8/2011 5:01 PM (GMT 0)
I asked my GI and she said it would only help if you have certain infections. I didn't know what to say to make her understand that I have first hand knowledge of otherwise. I am happy to hear you're still doing well. I think we have to just go to doctors that we know are openminded to the procedure, we aren't going to change the mind of someone who thinks otherwise.
Posted 7/8/2011 6:08 PM (GMT 0)
i agree with you notsosickly girl, every other GI i have been to would never be open to FT as a treatment. All of them said diet and probiotics did nothing either....so sadly it has to be the right doctor.
Posted 7/8/2011 6:51 PM (GMT 0)
Ive been following this thread for a few days and I'm happy to say yesterday I started my first FT! I am currently holding my 2nd one in right now.

I will post back on my results as I go along

Thank you SAS and Dr G for giving me the hope that this will work!

Sas- how many days into it till you saw any results?
Posted 7/8/2011 7:14 PM (GMT 0)
BTW I have had UC for about 3 years and it has spread from one spot to my entire colon. I just found out yesterday after a colonoscopy. My Doctors only options are remicaid and colon removal. And I refuse to do either. I am currently on Prednisone 50mg as an attempt to control it. I have tried almost every single other drug from lialda, to 6mp and nothing worked for me.

My donor is my wife and we are doing the FT's at home with empty enema bottles and mixing the poop at 1:4 ratio with saline. The whole process is gross but the enemas are easy.
Posted 7/8/2011 10:43 PM (GMT 0)
jasherlynch,

Best of luck. Let us know what happens!
Posted 7/9/2011 2:39 AM (GMT 0)
sconnie - My appointment with Dr. G. is this Monday. Interestingly, I am feeling better than I have in a long time right now. Have been on LDN for about 50 days, VSL#3DS for about a week and Metamucil for about 2 weeks. Had two days of formed stools and no blood, followed by wide smiles!

Anyhow, I still plan on meeting with Dr. G. on Monday. He may decide I'm not a good candidate right now, though...

Eph
Posted 7/9/2011 2:59 AM (GMT 0)
sas,

You may have already answered these questions but I was just wondering if you were sedated during the colonoscopy when the FT was done? How long were you able to retain the FT liquid?

Whenever I've had a colonoscopy I've been so full of gas I've just blown everything out right after I wake up.
Posted 7/9/2011 5:36 PM (GMT 0)
Day 3 on the Ft's.

I had a really bad night last night but its because I'm in such a bad flare up right now. My doctor wants me to come in and get iv steroids asap. But I'm not sure wether to try and hold out till I get 5 days of FT's or not. Any suggestions? I'm worried the iv steroids will make it more difficult on the bacteria to multiply.

I'd love to get your opinion Dr. G

If this doesn't work at home I plan on flying to Rochester as soon as I can make an appointment with Dr G

Cheers,
Jeremy
Posted 7/10/2011 3:53 PM (GMT 0)
Hi - I was fully sedated during fecal transplant and Dr G uses something (CO2) I think so there is NO GAS - it was brilliant!!!  Also i took some immodium as soon as i woke up and ended up retaining the fluid for 2 days. 

I am still symptom free and I think someone else asked how soon i had relief and it was immediate for most symptoms, blood, urgency and D, but I had pain in my rectum for about a week after that has now disappeared. 

I also have more energy and have gained about 5 lbs.  I am exercising and gardening and enjoying the summer with my 2 very active kids.

I am having a super stressful time right now, our house is on the market, we are moving to another state, one of my children has health issues ....this all has me concerned that symptoms will return.  I think this will be a good test to see how a FT can work because normally during stressful times i am a flaring mess.

Thanks for the interest and following along.

Stacy

Posted 7/10/2011 5:09 PM (GMT 0)
Day 4 on the FT's. Last night wasnt as bad as night before as far as cramping goes. Still very painful though. Today the FT seemed to just go right in. And I dont feel like I need to lay down to keep it in.

I havent seen any results so far. But Im hoping its working! Go Fecal Flora!
Posted 7/10/2011 11:20 PM (GMT 0)
Stacy,

Just wanted to drop in a quick "thank you" for starting and updating this thread. It's great to hear such positive results, and it really seems to give a lot of the users on this board hope that there's some light at the end of the tunnel (myself included). It's great that you found a doctor that was willing to work with you and try something different. Your results are so encouraging that I can't imagine that this procedure won't gain momentum.

Hope you continue to do well with this treatment, and thanks again for sharing and letting us in on your great story.

mark
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