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Fecal Tranplant via Colonoscopy tmrw

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Posted 7/22/2011 1:38 AM (GMT 0)
FT has recently started getting a lot of attention. Sounds like this has been a miracle procedure for some. I am interested to know if this will be suitable for me. A summary of my UC history is below in my signature.

Upon my last colonoscopy I was in full remission (aside from slight cecum inflammation). Currently I am not bleeding, no mucus, roughly have 3 - 4 BMs a day (ocassionally only 2), occassionally have slight cramping (if I don't sleep well). My stools are mostly loose (that is, they come out formed but after 10 seconds or so, break up into mush) but maybe twice a week i'll have formed stools. Once in a while i'll also have spouts of 'unexplainable' diarrhea (say every 2 weeks or so) and have to use the bathroom 5 times during that day. My GI's can not explain these symptoms (as they do not correlate with the status of my UC) so they diagnosed me with IBS. My UC, at least physically, is not too much of a problem and neither is my IBS. I can pretty much still do the activities I want to do. The UC/IBS are more of an inconvience at this point. However the UC is definitely a huge mental problem for me as I stress over every BM and fret every day about it getting worse. Close friends and family have said that my personality since UC diagnosis has become less passionate and enthusiastic about life and I definitely feel this too. The life style changes I have adopted to help my UC/IBS (eg. healthier eating, sleeping a sufficient amount of time each day) are inhibiting what I would really like to do.

Is FT suitable for people who have IBS?

I have read that FT has the possibility of actually making one's UC worse... this is what I am afraid of seeing as my symptoms are no way as severe as others. None the less, I would love to have my pre-UC/IBS bowel habits if possible and at least 'believe' that my UC is behind me. This will once again give me the enthusiasim I had for life prior to UC. I live in Melbourne, so flying to Sydney would not be a problem at all. Any advice would be greatly appreciated.
Posted 7/22/2011 1:55 AM (GMT 0)
Max

You ask interesting questions and since you are so close (lucky you) to Dr. Borody perhaps you can get answers there and report back here. You are wanting to achieve normalcy as I am and like you am nowhere near as bad as some (although I was very bad previously). My remission was achieved through diet modification but I would love to have a normal diet and life again, without daily drugs or probiotics.

you ask: Is FT suitable for people who have IBS?

I'd like to know too. Invisible and incurable, it's existence known only by our word of mouth. Even more mysterious than UC. I have the definite feeling that when my next colonoscopy shows no signs of UC my GI will say I have IBS now with even fewer solutions (except they don't roll out the biggest baddest meds for IBS).
Posted 7/22/2011 2:36 AM (GMT 0)
I have IBS as well as UC. My IBS symptoms seem to be related more to what I eat. I'm fructose intolerant.

Have you tried keeping a food journal?
Posted 7/22/2011 2:58 AM (GMT 0)
imagardener2: Yes, I will definitely report back if I manage to make a consultation with Dr. Borody and will most definitely give updates if I choose to go a head with FT. You sum up our situations very well... that being that we aren't bad, but we want to be normal again. If FT can give that back to us, we'd be forever grateful. I am an Australian citizen and my residency is in Melbourne, but I am currently in Shanghai, China for studies. I may ask my father to make a phone call on my behalf.

subdued: How did your IBS change after FT? Did it improve or stay the same? My biggest concern is making my UC worse or undergoing an unecessary procedure.

I did keep a food diary for about 2 months. I really could not identify any problem foods at all so I haven't learnt much. I have nonetheless cut out gluten, dairy, red meat and am experiminting with not eating garlic.
Posted 7/22/2011 8:57 AM (GMT 0)

jasherlynch said...

If anyone knows of any other GI doc that would perform a Fecal transplant on a UC patient here in the states let me know. It would save me a ton of time and money


I know that there's a GI doctor in Oklahoma City that does FT for patients with C. Diff induced colitis, but I don't know if he has started to accept UC patients. Not sure I can post his name here. Let me know if you want it.
Posted 7/22/2011 4:18 PM (GMT 0)
Hey lady-V that would be great if you could email me his info

[email protected]
Posted 7/23/2011 3:48 PM (GMT 0)
Email with the info on its way.

When I called their office a while back, I was told they would only do it for patients who had C. Difficile. But things may have changed now, or maybe he could be convinced to do it for a "regular" UC patient. Worth a shot. Also, I know that there are a few others around the U.S.A. but I don't have that list.

On the other hand, Why not do it at home yourself first? Dirt cheap, and the worst that could happen is that it doesn't work. Then you could go and have done in a nice, expensive, hospital. :)

Please let us know how it goes.
Posted 7/23/2011 5:27 PM (GMT 0)
Very interesting article about FT

The Enema of Your Enemy is Your Friend
http://www.slate.com/id/2282768/

Just a little quote that gives me hope for all of us:
"I really think in another couple of years, it's going to be something that everyone's doing," said Kelly, who has performed the operation 22 times herself.

Can't come soon enough.
Posted 7/24/2011 6:01 AM (GMT 0)
Sas, So happy to hear that your treatment is working. I have seen Prof Borody here in Sydney, Australia about doing the fecal transplantation and have done all my blood tests to start the treatment in the coming months. I'm hoping to use my sister as a donor, she will need to do blood and stool tests to see if she is suitable. Lucky for me the centre where Prof Borody operates from has donor stools, if I need to use them!!! They have a protocol for the donors involving diet prior to their 'donation'. Cant imagine Thai or mexican food going down well!!! Also before the procedure, I need to take antibiotics (flagyl) and do the colonoscopy prep. The first treatment is done through a colonoscope and subsequent ones can either be done at the centre, or at home, depends on your budget and preference. So am quite excited to try this.
Again thanks for the feedback, it;s truly encouraging!!
Posted 7/24/2011 12:58 PM (GMT 0)
Mari68 - I am so happy that you are going to have the FT done. I cannot wait to hear how it all goes.

Please keep us posted of how it all has been done, including what blood tests you had to have, what your sister will have, number ofdays for antibiotics, what the diet is before for donor, etc.

I hope that you have great results!

Stacy
Posted 7/28/2011 7:24 PM (GMT 0)
SAS---
I have read on the forum how others are concerned that infant's poo may not have enough flora in it. I am not sure if I have other options for donors. What would be considered a "good" donor?

I did my first at home FT using my baby's stool on 7/17/11. I try to do one everyday I am off work (I only work 3 days a week) but have missed a few days. So far things seem to be improving. I went a day without a BM at all. Had a very firm BM last night..(I think b/c I havent been eating as much fiber lately)...then this morning I think I Lost 10lb in the bathroom. HA! No blood noted tho or mucous from what I could tell...the last of the stool was pretty loose but not diarrhea. I feel like I have made improvement for sure and plan to continue doing the FT's when I'm off work. I will keep you posted on how things go.

OH and since I started the FT's I am no longer doing my mesalamine enemas. So for now I am med FREE!!!! YAY!
Posted 7/28/2011 8:07 PM (GMT 0)
kk217.. intestinal flora is completed around the age of 2.
Babies have predominately bifidobacterium,, and lack lacto bacteria.

The Cdd in Australia says that intestinal flora is stronger in males, and also stronger in someone
who is older. However you still getting alot of good bugs from a baby, which is why some on this
forum are having success with infants.

I'm starting to realize how risk free this procedure is, as I have yet to track anyone with side effects.
So why not keep trying with your baby, and worse case it doesn't work you may have to find new donor
Posted 7/28/2011 10:10 PM (GMT 0)
Hi - that is great news that you are improving!!  please keep me posted....i am still symptom free and loving it.

Wishing you all well!

Stacy

Posted 7/29/2011 12:16 AM (GMT 0)

tankor said...
I have yet to track anyone with side effects.

Someone once said they got a flare as a result. That was the worst I heard, which is so far better than the side effects from many of the meds.
Posted 7/29/2011 1:03 PM (GMT 0)
Subdued - i know tha tyou mentioned that you get IBS Symptoms sometimes - what are the symptoms you get when you eat the foods that do not agree with you?
Posted 7/31/2011 10:53 AM (GMT 0)
My main concern about doing FT was if I would flare again or got ill from it. I voiced my concern to Prof Borody's nurse and whilst she says that any transplantation has it's risks, they hadn't had any patient that got worse from the treatment. Some people didn't respond but no-one so far had gotten sick. I guess that's why they screen the donors so diligently and put you on antibiotics beforehand to minimise the risk of infection etc. That made mt mind up for me.
Once I get a date for the treatment, I will keep everyone posted.
Posted 7/31/2011 3:24 PM (GMT 0)
Mari68:  thank you for the update.  I remain very interested in your path to FT with Prof Borody.  Hope that you are doing well in the meantime.

Stacy

Posted 7/31/2011 3:46 PM (GMT 0)
To answer the question on who a good donor would be - this is what I think:

NO IBD or IBS
NO familial history of IBD
Not taken antibiotics for at least a year and minimal antibiotic use in the past
Screened of HIV, Hep A nd B, and stool screened of parasites
Donor willing to go on a sugar free diet along with eating minimally processed foods before FT (no proteins treated with antibiotics)

Just to be clear though my husband was my donor and is very healthy but did not do the diet I recommended above.
Posted 8/1/2011 12:19 AM (GMT 0)

sas said...
To answer the question on who a good donor would be - this is what I think:

NO IBD or IBS
NO familial history of IBD
Not taken antibiotics for at least a year and minimal antibiotic use in the past
Screened of HIV, Hep A nd B, and stool screened of parasites
Donor willing to go on a sugar free diet along with eating minimally processed foods before FT (no proteins treated with antibiotics)

Just to be clear though my husband was my donor and is very healthy but did not do the diet I recommended above.

Except for #2, my granddaughter met all the criteria you listed. I'm the only one in my family that has IBD/IBS though.
Posted 8/1/2011 8:03 AM (GMT 0)
Hey SAS,
Just looking over the protocol for FT I was given by Borody's clinic and thought you might be interested! The person undergoing FT needs to go on a low fibre diet 2 weeks prior to begining antibiotics and during the course of antibiotic. Your diet then needs to change to a high fibre diet after the 1st infusion and maintained for a while to let the healthy flora thrive!
Antibiotics to be taken can be 1 or 2 of the following Rifampicin, vancomycin or flagyl. The protocol for each differs but you are generally on them for 10days, the last dose being taken the night before the bowel prep, done the day before the infusion.
On day one of the infusion, you take 2 imodium tablets.
Generally you do 5-10 days of infusions, depending on the severity of your condition. If you have difficulty retaining the enema you take imodium or codeine.
As for the donor...
They must have a healthy bowel motion EVERY day.
No history of bowel problems.
Not on any meds that may interfere with stool viability (antibiotics).
They need to be fully screened to ensure they're free from infection.
At least a week prior to the infusion, the donor must avoid foods that are a high infection risk, ie shellfish, shrimp, processed meats.
Avoid all antibiotics. Commence a high fibre diet. Drink at least 1 litre of water daily.

The blood tests I had to do and am sure the donor will have to do were for: Full blood count, Vit D, coagulation studies,glucose, CRP, Hep C, HIV, Hep B, Syphilis, TFT, Hep A, CMV, Toxoplasma, ANA, Vit B12, serum folate, red cell folate,EBV, H Pylori, Coeliac, Rheumatoid factor and HLAB27.

Phew!!! Plus there was the stool samples to test for bacteria and parasites! And this is only a very condensed version of the protocol!!
As always, keep well and we'll keep you updated.
Posted 8/1/2011 12:06 PM (GMT 0)
mari68,

Thanks Mari for posting this protocol, at least it gives us all an idea of what the criteria is and the important factors involved we need to know about.


 

Posted 8/1/2011 2:59 PM (GMT 0)
Mari- thank you for taking the time to send that to the forum It is really helpful info.

Stacy
Posted 8/1/2011 2:59 PM (GMT 0)
Mari- thank you for taking the time to send that to the forum It is really helpful info.

Stacy
Posted 8/1/2011 6:02 PM (GMT 0)
So does Dr. Barody to FT routinely for U.C.? Or only C-diff?

If he does it for U.C., why are Australians so lucky to have this option when no one else does?
Posted 8/1/2011 6:20 PM (GMT 0)

Lady-V said...
Very interesting article about FT

The Enema of Your Enemy is Your Friend
http://www.slate.com/id/2282768/

Just a little quote that gives me hope for all of us:
"I really think in another couple of years, it's going to be something that everyone's doing," said Kelly, who has performed the operation 22 times herself.

Can't come soon enough.

I just laughed at the end of the article when it mentioned cost of glass of......
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