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Posted 5/28/2014 6:08 AM (GMT 0)
I've got a few questions about fecal transplants.
If you want to read about my questions, just skip my little story.

I'll start off by saying that after being in a recent flare for 5 weeks and now in remission, my doctor thinks I need to change my medication.
My current medication was mezavant, 4 pills a day, and while I was in a flare, for 2 weeks I had to take salofalk enemas.

None of which had helped the symptoms (absolutely no change in symptoms), so my GI prescribed prednisone yet again, the miracle of life right?

After a week of prednisone steroids, I'm now fine.

Because of the huge effects prednisone has, on my bones for example, since I'm still young (I was told that my bones stop developing at around 26), my doc wanted me to change my medication.

So now they want me to take REMICADE every 8 weeks. I've read of so many side effects of remicade such as tuberculosis and colon cancer, that I'm honestly now scared for my life. I'm only hesitant that it will actually keep me in remission, as I've seen so many people on here take remicade yet they still get symptoms.

I want something that will honestly cure me, as I'm sure anyone else does.

A few months ago I saw this story on the news about a mother and her son. Her son has colitis and took something called a fecal transplant, and suddenly his symptoms were gone, and he was in remission, and up to this day (I'm assuming) has not had a flare since getting the transplant.

So now here are my questions.

1)
Why hasn't my GI talked about fecal transplants with me? Is it actually a huge difference maker that it will put them out of business?
Are GI's secretly not wanting patients to find out about this?

2)
Has anyone here actually tried the fecal transplants, and has it worked for them? If so, how long have you been in remission since taking them?

3)
What exactly are they?
Can they be taken orally? Is it an injection? A procedure that needs to be done at a hospital or clinic?
Does it hurt when getting one? Do you need to be put under?

4)
Are they available in Canada to the public?
How does a Canadian get one? And if it is somehow possible for me to get one, should I talk to my GI about it before going through with my first remicade infusion?

Thanks guys.

Post Edited (Sugarcrave) : 5/28/2014 1:10:18 AM (GMT-6)

Posted 5/28/2014 9:22 AM (GMT 0)
Greetings.

1) I'd like to point you to the current official thread here where most, if not all of your questions have been answered.

2) This is more or less the official site that details how to do it. There are many resources, as well as a facebook group you can join.

3) Individuals who have done the transplant and are cured of UC no longer post here I'm afraid. There is one fella, Michael or FecalTransplantForUC who occasionally drops by to answer questions. His posts are in the official thread link I provided. He also has a site (along with youtube videos) here detailing how he cured himself. I find his story inspiring because he was close to surgery and now he has no traces of UC. Back to normal and only posts here to help the rest of us on how to do it correctly and successfully.

Best.

Post Edited (Guardian7) : 5/28/2014 3:27:15 AM (GMT-6)

Posted 5/28/2014 1:13 PM (GMT 0)
Your GI hasn't talked about FMT because it rarely works long term for most UC'rs and only works short term in a very few. It works wonders for C-Diff patients but not for UC'rs. I believe they are mostly done by an enema type procedure but should be done by a professional as there are risks, especially if not done correctly. Many have attempted doing it themselves. Close to zero have had success.
Posted 5/28/2014 1:54 PM (GMT 0)
"Close to zero have had success."

based on your observations gar ?

did you use a knife to slice your bagel this morning ? there are risks in that you know ;-)

you wanna talk about risks ? my wife and I ran barefoot through 8 inches of snow in the middle of winter, 200 yards from the house to the barn and back - we couldn't feel our toes for 3 days !

now that was risky yeah


edit; kids, don't try this without consent of the nearest child ---- and gary, never ever do this - ever !

Post Edited (soystud) : 5/28/2014 8:04:23 AM (GMT-6)

Posted 5/28/2014 1:56 PM (GMT 0)
poop plantings rock - do it - now !

seriously - they may not cure you, but there is a very good chance they will help in the process -
Posted 5/28/2014 3:14 PM (GMT 0)
There are some trials. If you have undiagnosed c-diff, you can expect good results. IF UC, the results do seem to be better than placebo, but not as much above placebo as medications that have come to market. a lot of things only help 40% to 60% of people, and often placebo can help over 20%.

Many if not all studies of FT for UC to date have been isolated case-reports, uncontrolled low-quality studies, or more recently Phase I trials. In Phase I, the main goal is to determine safety and potential efficacy, and participants are often kept on their other medications. This clouds the issue if someone enters remission. Phase II trials would have more sophisticated ways to control for other medications, or ask people to stop other medications.

Results might reasonably vary with hotness of flare, and the precise way in which your gut microbes are screwed up.

This could work for you, especially if your flare has cooled down a bit. Based on good research reports I have read so far, it is surely not a slam-dunk. Some anecdotal accounts do express a strong belief it worked. Some trials reports results for some people - but these results on average are not as strong as most medications.

Screening of donor stool, either at your expense, or by finding a GI practice that works with a screened donor bank, it strongly recommended. (would you have unprotected anal sex with someone you were not completely sure of?)

You should read up, locate resources, and make the best decision you can. There do not seem to be many reports of adverse events in trials and in c.diff therapy. It is unknown how many adverse events occur in individual DIY attempts. Some here report no problems.

If stool/donor screening is done, I think the danger of FT is not large, but I am not a doctor. I suspect the greater risk might be whatever treatment you were not trying. But, this is true for almost any choice. if you or you doctor picks the wrong therapy.

Regarding colon cancer, the risk from untreated UC and form Remicade is about the same, a 3 to 4 fold increase. There are some other risks of untreated UC, including colon perforation and toxic maga colon. However, there may also be some elevation of risk of a few other cancers with Remicade. But population levels are low, so even a 3-fold risk increase means that out of 154 patients treated with Remicade, there might be one additional cancer.

Your family history, personal history, access to FT therapy, and other factors should all be considered. Until this therapy get through Phase II trails and maybe even through Phase III rials, most GI will not be able to offer or help you with it. You can find info here on GI practices/centers that do offer this. There are also DIY options.

Sorry if you wanted a clear green light, because I think it is a yellow-light situation.
Posted 5/28/2014 3:15 PM (GMT 0)
I have done 10 consecutive days/months for two months and unfortunately it has not cured my condition, even though I have "mild" ulcerative proctitis. I had really high hopes for it.
It is not normally offered for UC only for Cdiff. and at the moment in the US it is illegal to do it for anything else. I believe it is the same in Canada.
There are two private clinics that you can attend, one in Australia and one in the UK. They are crazy expensive and as far as I know you need several FMTs long term to have any effect on UC.
Many people choose to do them at home, however you will need to find a donor and get them tested.
It is called fecal transplant for a reason, however many companies are working on a pill, so that will make the whole procedure more affordable and convenient.
Posted 5/28/2014 7:28 PM (GMT 0)
Hmm if it's illegal how are some people able to do it for UC?
Posted 5/29/2014 4:19 AM (GMT 0)
2)
Has anyone here actually tried the fecal transplants, and has it worked for them? If so, how long have you been in remission since taking them?

Yes,DD did and in remission for 2+ yrs.
Though we did at home for C.diff infection, FT brought her stools back to Pre-UC days- well formed and once or twice (rarely) daily.
Also would like to add- After 3 yrs of food restriction DD tried restaurant food last weekend and we feel blessed that so far no complaints.
Posted 5/29/2014 3:17 PM (GMT 0)
Great! Thanks for update!
Posted 5/29/2014 3:46 PM (GMT 0)
Hi Bloom, I've just wondered, have you thought or spoken to your daughter about reducing/stopping the medication?
Posted 5/29/2014 4:31 PM (GMT 0)

Bloom93 said...
2)
Has anyone here actually tried the fecal transplants, and has it worked for them? If so, how long have you been in remission since taking them?

Yes,DD did and in remission for 2+ yrs.
Though we did at home for C.diff infection, FT brought her stools back to Pre-UC days- well formed and once or twice (rarely) daily.
Also would like to add- After 3 yrs of food restriction DD tried restaurant food last weekend and we feel blessed that so far no complaints.

She might not even need the lialda anymore. I agree with Sharron and think that weaning might be a good idea.
Posted 5/29/2014 10:39 PM (GMT 0)
Sharon and Guardian...

Though we really wish to wean her med ,she being in college none of us( DD, We-parents, 2GI's) are not ready to try it out now. All of us are waiting for her to finish her studies without any health hurdles. GI's have another measuring scale too.They said they will recommend weaning med only if she doesn't have any flares for 5 yrs straight...So fingers crossed.....
Posted 6/1/2014 5:44 AM (GMT 0)
Hey,

Still just wondering that if the fecal transplants are illegal in the US and Canada to perform on UC patients and C-Diff patients only, how are UC patients gaining access to it?
Posted 6/1/2014 1:39 PM (GMT 0)
find a healthy kid on the street, steal his poop, put it up your butt -
Posted 6/1/2014 2:56 PM (GMT 0)

Sugarcrave said...
Hey,

Still just wondering that if the fecal transplants are illegal in the US and Canada to perform on UC patients and C-Diff patients only, how are UC patients gaining access to it?

rolleyes

I hope you're not serious.

I highly recommend you read the book Forbidden Medicine.
Posted 6/1/2014 4:12 PM (GMT 0)
Sugar, for the most part, patients are doing their own fecal transplants, using their own donors. I believe there have been one or two people who actually went to Australia to have them done. I believe this research on FMT's has some merit, although I don't believe it is going to cure most UC patients long term because it doesn't address the problem of how our guts got so out of whack in the first place (AKA autoimmune disease). That's why it often works for C-Diff but the long term benefits on UC'rs without constant therapy remains a big question mark. It could be used as a continuing long term treatment option though, just like most of the drugs they have us on. Given the right circumstances it would probably be much safer than most UC drugs.
Posted 6/9/2014 9:02 PM (GMT 0)
Hi, I also wondered about people reporting they have had fts colonoscopically in the USA when it has been forbidden by the FDS.

Post Edited (sharron19) : 6/9/2014 9:27:12 PM (GMT-6)

Posted 6/9/2014 9:43 PM (GMT 0)
I did it at home with my wife as donor and was in remission for over 2 yrs without symptoms. Just started a new round of transplants after getting pre-flare symptoms. See my separate thread on progress
Posted 6/27/2014 10:09 PM (GMT 0)
I went to Tampa, FL in January and met with RDS Infusions and Dr. David Shepherd.  He "assists" you in FMT.  I did the FMT 4 times (2 colonoscopes and 2 enemas) and on the last day took 10 enteric coated pills.  I also have done 3 more at home.  I've noticed a significant difference in several things.  One is my iron levels.  In December my iron levels were severely low, around 35-40.  Since I did the FMTs they are back to around 220.  I was shocked as it's been since 2007 since my levels were that high.  This means I'm not bleeding nor losing microscopic blood through the colon.  I feel that the FMTs, if done regularly, will eventually help anyone with UC.  I know everyone is different but with the FMTs, wellbutrin, restricted starches and fermented foods, I feel i've really changed my disease.  There is a group on facebook called "Sally Brown" that is a private facebook group for FMT.  Go on there and join the group.  Once you join go to the files section and read the Briggs Protocol as it is an amazing viewpoint on UC.  I will continue doing FMTs at home with a lab tested donor.  It's easy and what the heck do we have to lose!
Posted 6/27/2014 10:16 PM (GMT 0)
Also, the FDA designated poop as a drug in April and only allow FMTs for CDiff in the US. They also were really on to the doctors that were providing FMT to UC patients and made them stop since there weren't any clinical trials, etc. Why do you need a clinical trial for the best probiotic in the entire world???? As long as the donor is fully tested, this can't hurt you. The drug companies make $12,000 per Remicade infusion and they will make $0 if you can get free poop from a family member and solve the issue. I'll bet when a pharma creates a synthetic type poop in the lab and can market it to us, the FDA will approve it in 3 months. Just my opinion.
Posted 6/27/2014 11:17 PM (GMT 0)
Hey Ferg,

Does Dr Shepard provide you with the pills?

If so, I'd love to link to his clinic from my website. Sure beats people having to make the pills at home.
Posted 6/28/2014 12:06 AM (GMT 0)

soystud said...
"Close to zero have had success."

based on your observations gar ?

did you use a knife to slice your bagel this morning ? there are risks in that you know ;-)

you wanna talk about risks ? my wife and I ran barefoot through 8 inches of snow in the middle of winter, 200 yards from the house to the barn and back - we couldn't feel our toes for 3 days !

now that was risky yeah


edit; kids, don't try this without consent of the nearest child ---- and gary, never ever do this - ever !


hahaha, this whole post is hilarious lololol
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