Hello, I did the fecal stool transplant. I’ve had ulcerative colitis for over 12 years. I’ve been on medications of all kinds and nothing worked or stopped working, even prednisone . I saw a specialist in Dallas who recommended this procedure after having to see a surgeon. Fecal Stool Transplant has changed my life.
It sounds and is a gross procedure,
but when you get at the point I was at,
you’d try anything.
Bowel movements were over 30 times a day. It went from 11 to 18 to 30. Diarrhea , and everything you can think of that comes with UC. After the fecal stool transplant, about 4 times a day. Which would be normal for me since I had about 80%of my colon removed about 4 years ago. And I can go out to eat and eat what I want.
I have tried asacol 6mp , humira cimzia, remicaid, colozal, prednisone too many meds to name, I had run out of medicine options. I’m currently taking lialda, limotol.
written by Shelly
All of the posts from “Annonymous UC” are from ulcerative colitis people who anonymously submitted stories or Doctor Reviews, medication, supplement reviews etc… I post all these stories to the site, but they’re different from my own personal stories so hopefully this account makes more sense:) -Adam – founder of iHaveUC.com
Hi Shelly. Can you please tell me if you did the transplant during a flare up/during a time when there was blood in your stool? I’m hoping to do this asap.
Thanks so much,
Jodi
Congrats on ur transplant! I have looked onto this for my daughter who gas chronic clostridia infection but noobe willing to do kids yet in US. Please keep us posted on ur progress!
They are trying it on children in Grand Rapids, MI. My sister was just informed by her daughter’s GI doctor about the treatment here. Her daugther is in a bad flare-up right now and the Dr. has decided that her drugs are no longer working. She is going to the office later this week to get more information.
Hello,
Could you please tell me the name of the physician in Grand Rapids, MI who is performing the fecal transplant?
Thanks, Donna
Did you ever get into Grand Rapids for treatment? I would love to hear positive results and contact info for a doctor. My 9 year old has UC and I have to get her considered for this treatment.
I am in Michigan and saw your post about Grand Rapids trying this on kids. Did you have positive results? I would be interested if you have contact info as we are looking into Boston as a second opinion. My daughter is 9 and recently diagnosed with UC. I really don’t want to consider this over all these antibiotics.
Hi Shelly! Congratulations!!
OMG! I’ve heard about this procedure…and I totally understand your doing it! I would do it as well….in a minute!! I wish I knew where I could go to do it.
How are things going for you colitis wise now? How much has it helped you? What was the procedure like? Did you have to clean out your colon first? Were you asleep or awake? I hope it has worked for you and that you are living again. Man, how I hope so!! This could be the thing that finally works. Not just for you, but for all UC sufferers. It reminds me of what’s happening with that MS opening of the veins in the neck. Natural…no harsh drugs. Do you have any side effects from this procedure? I bet you don’t, right?
Does anyone know if this can be done in Canada? man, if it works, why isn’t it being done everywhere?
Cheers, and continued good health my friend!!
Bev:)
Hi, I have been struggling with recurrent c. Diff infections, have done 6 weeks of vancomycin, and if this doesn`t work my GI doctor said he will refer me to Hamilton, On where they do the fecal transplants. Also heard they do them in Calgary, Ab. Ask your GI or infectious disease specialist. Good luck.
There is a doctor at TEGH in Toronto who does fecal transplant.
What is the name f the doctor that does the transplant in Toronto….do you have any more details please?
Hi Margaret,
My wife has been suffering for three years and no meds seem to
work.Can you please give me the name of the doctor in Toronto
thanks,
Ike
Hi Bev. Well my mom has a severe case of cdiff and ibs and her doctor called me today and told me about this she is in n.b. And he said they now have protocols for this method I believe this can help my mother who has been suffering for years !!!!!
Hey. i know you posted this a long time ago but i live in canada and my boyfriend Kyle is actually getting this treatment right now! :) Hes part of the first clinical trial ever in canada where they are doing bacteriotherapy for UC and not C difficil. They are giving it to him once and week for 6 weeks (because thats the only way the government will allow them to do it in canada vs every day for a week). He used to get bad flares often and much of the time they were relentless and no matter what diet we tried they wouldnt go away. He relied a lot on predisone before. after the very first week of this although he still had cramps, they were a lot milder, he had less bathroom urgencies , and went about half the times he usually did, and there was no blood in the stool anymore. now that we are in our third week he only gets mild cramping at night rather then all the time, doesnt have many bathroom urgencies unless he eats dairy or somehting he knows he shouldnt have, but has normal solid bowel movements. Doing the treatment once a week takes longer to work but im seeing HUGE differences. Hes actually off all medication right now only after 3 weeks. normally without it he would have been hospitalized by now. 3 weeks to go so were crossing our fingers. If you are interested in a clinical trial they may be doing more in Hamilton at Mcmaster hospital where kyle is going. at least they can tell you when the next nearest one will be :) they also provide a donor for you
Hi Sasha – has Kyle finished all his transplants? How is he doing now? My son was recently diagnosed with UC, and I am terrified of keeping him on these harsh drugs for years and years. I’m not sure if Canada is doing trials with children (under 14 years old), but something I’m very interested in learning more about.
Hi – I am new to this but my 29 year old daughter has uc and I have been reading a lot about it. She is starting Remicade in a few weeks and frankly it scares me to death. Could you tell me where in Canada they are doing this fecal transplant and if you are in a trial – is it free? She doesn’t have the greatest insurance.
They are doing research in Hamilton, Ontario. It’s totally free. Check out http://www.clinicaltrials.gov/ct2/show/NCT01545908?term=fecal+hamilton&rank=1
I am in this study right now.
Please! Let me know if there is someone in BC who performs fecal transplants
Hi,
I came across your website after countless research regarding UC. My younger brother has UC and we looked endlessly for treatment options for him. I would GREATLY appreciate it if you could contact me regarding your treatment and if that could be something for my brother. I hope to see the same results for my brother just like it has happened for you. hope to hear from you soon
thanks
Hello! I too have been looking for years, for options for my son who has UC. Have you found anyone who will do this for people with UC. My son and I live in Minnesota and I am certainly having a difficult time locating any doctors who would consider doing this procedure. Is it all about the simplicity of it all and not costing much?? Call me a skeptic, but this just might be the reason that it has not become the “gold standard” for this condition. I have seen research on this that dates back to 2003 and think of all the suffering my son has endured all these years. Millions of people could have their quality of life dramatically improved if they’d get moving (no pun intended!)on this.
Arlene,
Contact the Fairview Maple Grove Medical Center at the University of Minn.
There is a GI there who has performed two FMT’s on me for my UC last year. I won’t say I’m cured, but this is the best I’ve been in the ten years I’ve had this curse and have not taken any Pred since. I have run thru the whole medication scene including Remi and Humira. My next stop was Cleveland for a J-pouch until I researched the FMT.
Not sure I want to give his name out because of liabality issues or the ever so wise FDA. He may be a little apprehensive at first, as this is not standard protocol for anything other than C Diff. I know he has approval to do this from the institute, maybe as a research study because I have to send him a UC symptom score sheet ever week and he currently is treating another UC patient with FMT.
He’s very professional and has wrote a few papers on microbacteria issues. He has also had discussions with Dr. Thomas Borody from Australia who is the so called pioneer of these infusions now offically called FMT (fecal microbiota transplantation). He seeems a little leary of Borody for some reason? Borody advocates multiple infusions, while this Dr. does not, maybe thats the riff.
Give the clinic a call and inquire about this, they may tell you who to see.
As I said, I’m not cured, but this has done more for me than any pill or biologic I’ve taken.
Good Luck.
Arlene,
Did you ever find a doctor? My daughter just had a fecal transplant in Minneapolis. Our doctor is Dr. Alexander Khorutz and is wonderful!
VERY interested to hear you have had such good results with this – hope you continue to feel well. Can you keep everyone posted? How long does the effect of the transplant last, or is it permanent? :) Trish
Wow!
This was a brand new treatment option for me – never heard of it before. It sounds awesome! So nice that you feel better, I sincerely hope it continues!
And please, do keep us up-to-date! And if you could – tell us everything! How, when, what – you name it! You have an eager crowd :)
I just read about this procedure in a science magazine (Dec 2011 Scientific American) but the article said they were only doing this on people who had contracted c-diff and there were no other treatment options, it worked for every patient. The article said the procedure had been done in Europe, Aus. as well as the US. The problem was of course clinical trials being held up by the good old FDA, because they don’t know how to classify it.
I had no idea they where doing this on UC patients and I am sure going to investigate it further.
I am so glad it worked for you because it gives us all hope of a cure. You need to give us more info please.
Suzyoc
Here’s a link to Wikipedia info on fecal bacteriothearpy
http://en.wikipedia.org/wiki/Fecal_bacteriotherapy
Is everyone as hyper as I am on this treatment? Shouldn’t the medical community be embracing this and trying it on every UC patient who wants it???
What the hell is wrong with this world? If this is a cure, and it may well be, we should all have access to this procedure!!!
It makes sense that UCers may just need their colons healed with good healthy bacteria. It is staring us all right in the face, perhaps, I think. Too simple and easy to be true? Sometimes it is…right?
Let’s all jump on this bandwagon. Talk to your doctors and tell them all that we should at least have the option!!
An over excited Bev:):):)
I pretty much agree with everything that you said Bev. When I googled “fecal stool transplants” I read on several sites where they had a 90% success rate with this procedure.
HARD TO IGNORE THAT!!
George in Napa
I know! 90%!!
Right on George in Napa!
Hey ive actually looked into this procedure too and a doctor by the name of Mark Davis is doing clinical trials on patients with uc, hes already done it with patients who have c diff and he was very successful. He just started the trial on the uc patients and im going to chec with him in about a month or two to find out his results. He is holding these treatments and trials in Portland Oregon. For anyone who’d like to know more and even talk to him his email is mark@brightmedicineclinic.com and his website is FecalMicrobiotaTransplantation.com
I have also been really interested in this! I hope that it will be more commonly used. I also read that it was mainly used on c.diff patients, but it cured them, and then I heard/read about some people with UC that had successful results. I will mention it to my GI just to see if he’s heard of it or knows who does them here.
There are so many things that can possibly help us that are we are not told by our doctors…
Hi Rebekah…you said ‘here’…where is here? Where do you live?
I am in Canada and am going to see my gastro again in two days. I can’t get this present flare under control, and I WILL NOT take her advice and take remicade and an immune suppressor. I just WON’T. They are poison and I refuse. I’d rather crap and bleed…and I mean that sincerely.
Anyway, I will ask her about this fecal transplant…and I know what she will say…we don’t offer that…it’s not proven to work…and all the asacol, steroids, and immune suppressors do??? Yeah, right. I am convinced that doctors do not want to do this procedure, because #1, it costs money to rent a ‘room’ to do it in, and #2, the ‘poop’ is free. No money for the drug companies…those freaking drug companies…I won’t even start on them…
Rebekah, please keep us posted, and I will keep everyone posted after seeing my gastro again…fingers crossed that I am wrong about her response to the procedure…but I bet I’m not!
Bev:)
Well, I went to my gastro and broached the fecal stool transplant idea. Oh boy…she was not happy! For some reason, she says it’s unethical…unethical? Ridiculous!! What the hell is unethical about that procedure??? Can anybody tell me that?
Anyway, she referred me to a doctor who apparently does it, in a town called Kelowna, an hour down the road from me. If this doctor agrees to do it for me, I am doing it! My gastro said she would never do it…I said, too gross? she said, no, inethical…who is she kidding? I wonder now, if it is some sort of religious thing or what. I’ve never heard anything so strange…
I will keep you all posted…
Bev:)
Bev
From your previous posts I’m not sure if I remember correctly but I think you’re Canadian?
Without knowing where you live, I just wanted to say that my daughter (UC dx at age 3.5) is seen at the best pediatric hospital in the country and her GI is internationally renowned. She has encouraged us to pursue FT with out daughter and has written the script for the antibiotics. Further, Boston Children’s agreed to do this procedure for us on an experimental basis. Things are turning around and there’s even a clinical trial at McMaster in Hamilton Ontario on FT for UC. Your GI needs to get a grip and do some research. It’s clear that she is the unethical one. The procedure, when the donor’s stool is tested and the patient is not close to perforation seems to be very safe. I can understand a GI refusing to do it for liability but claiming that it’s unethical is another story. I don’t know where she’s located but perhaps she needs to stay in touch with what her colleagues are doing. Makes me angry as many (not all but many) could be helped by this procedure and we’re just seeing the beginning of an effective protocol for UC.
My brother is desperate for help, we live in Hamilton, what is the name of the doctor doing fecal transplants, please
melanie wolffe is one of the people running the study. my bf is actually part of this trial in hamilton
Bev, did I miss a post?? Are you flaring?? How bad?
I think, and of course I don’t want to jinx it, but hopefully getting mine under control..at least the bleeding and forming stools…still some blood, urgency, diahrrea and going 10-15X but I feel slow PROGRESS. I’m doing herbs from my chiro + SCD and some other stuff…
Hope you are doing OK…please let me know…
Best, Shelly
Bev, did you say a doctor in Kelowna BC is doing this procedure. Could you tell me who it is?
Thanks, Patsy
Hi Patsy, Did you ever find out who the doctor is in Kelowna?
from Maria
Does anyone know of any doctors in the New Jersey area that are willing to do this?? Any information on whether or not do it yourself at home has same response??
Hi Josephine!
I copied and pasted this from another post:
Dr. Lawrence Brandt (Bronx, New York), Jackson Siegelbaum (Harrisburg, Pennsylvania), Bright Medicine Clinic (Portland, Oregon), and Dr. Colleen Kelly (Providence, Rhode Island).
Best of luck!!!
Hi guys. I went to Dr. Lawrence Brandt, who is wonderful in the Bronx and had the procedure for C-Diff! In 9 minutes — 9 months of hell was over!
jeannieology, so happy you are feeling well. Can you tell me if you also have UC, if so were you in a flare up? From what I am reading doctors not willing to do on uc only C-Diff. My sons Dr. also wasn’t for it. We need to control our own destiny Thanks for sharing
Hello!
I am in a flare right now. Taking 2x40mg prednisone, and 2x4g Pentasa. 10-13 BM a day, Britstol stool chart 6, alternating blood. CRP:6.3, HGB:13.5, x-ray:ok. No word to the doctors about FMT.
These conditions developed in one week, previously it was much milder(lasted for 3 weeks), this is my 2nd month of SCD(not sure if it is the predicted falre).
I have been planning doing FMT at home for two weeks now. I purchased all item required. My donor will be my younger sister.
The project kicks off tomorrow morning. The goal for the first day to keep the enema for 4 hours, and gradually increase the time up to 20 hours throughout the 7 days.
Right now, everything is prepared, washed and fertilized. Sitting on the bench in garden and dreaming about happy end.
I will note and document everything and share as soon as I feel better. Fingers crossed.
Hey,
I am replying to my own post just you update you guys.
As you can read from my previous post i was really in a bad shape when i was contemplating wether i should do FMT or not.
Finally:
– I did it for myself at home.
– No flagyl and stuffs like that
– when i started it the inflammation was so intense so i was able the hold it in for 8 hours(with a hard fight).
– 7 days treatment, quantity 60 – 350 ml depends on how much the donor produced
– right after I administered it, I stood on my head for 20 minutes, and i lowered my body gradually trying to follow my bowel direction, wanted to have the stuff goes up as far as possible
– then i lay down and tried to keep it as long as possible.
– starting from 4th days i had to urinate after 2 hours of laying (i assume the absorption capability of the bowels was increasing). standing up and going to the loo was a challenge, i was afraid having an urgency and loosing the “miracle stuff”, so i took a glass jar beside me during the morning preparation, so urinating wasn’t a problem anymore.
– well, it won’t heal you in a week, not in a month, you can also expect some colitis symptoms event after the 2nd or 3rd month.
– but i can say i got better, much much better.
– i left almost all medication, like pentasa.
– i am still veining off from steroids, started from 80mg daily oral(toxic dosage for 75kg), now i am on 4mg.
– i had mucus and very little amount of blood coming when I decreased steroids too fast, the major milestones were at 20mg and 10mg.
– i frozen some “magic stuff”, in 60ml portion, and so far i administered one in each month, and occasionally when I realized colitis symptoms.just to reinforce my little friends (the good bacterias) inside :)
– i am not convinced that 100% cure at this point(it still can be), but it definitely help a lot.
– starting from the 3rd month after FMT – i had stools like i had when i was 15 or so, bristol-3, no blood , no mucus, once a day.
– my skin problems, nail problems all gone.
– as i said during that 3 months and even after there were symptoms popping up, but they were manageable with a 60ml repetition for one night and making SCD a bit more strict.
– yeah, i am doing SCD. try this: i eat dry curd cheese with SCD yourt,honey and banana every morning as a dessert,just to support by gut flora.
– If you are in the UK, you can buy dry curd cheese (or farmer’s cheese) cheap and easy in any polish delicatessen.
i figured i’d post my experience with FT. i did it a few months ago in may 2012. i did 8 transplants and my donor had no diseases or anything- very healthy lady. it definitely made everything so much worse. i was planning on doing it as long as i needed, but after 8 transplants, my frequency went from 7 to 15-20 a day and i just couldn’t take it anymore. i followed doctor borody’s at home protocol and took flagyl before the procedure.
Hi, I appreciate if you could let me know the name of the doctor you went to in Dallas.
Thanks,
Mary
What about just buying a turkey baster, getting hold of someone’s fecal matter, and doing it themselves? No need to take senseless hours of medical professionals’ time doing unnecessary precautionary lab work…
Just saw Donald’s post. Let me give you praise for your mentalities, and Bev’s. Yes, it’s clear our society still has some mid-evil issues like having the FDA preventing people from getting treatments like this…
My daughter has UC and is very sensitive to the medications. We were in the same situation of trying to figure out how to obtain this therapy, and finally we were desperate enough to go ahead and do it at home. It has paid off for us, she’s in control of the condition without use of prescriptions. I have written full details about the experience in a short memoir titled “Ulcerative Colitis from the Bottom Up.” It’s the book I wish had existed for us when we were searching for answers. You can google the title if you are interested. Good luck to you.
If there are others out there who have experienced worsening of symptoms or otherwise have found fecal transplant to be ineffective, please post them so that we can have a complete picture. It is just so easy to believe something will be the magic bullet unless you hear ALL the anecdotes.
Thanks!
I, too, would like to know of someone who has had worsening symptoms from doing this treatment – this is the first i’ve ever heard of things getting worse as a result of it – the overwhelming picture is that this treatment is effective where all others fail. I have the experience of my own daughter, whom I care deeply about and would never do anything to hurt – she has gotten better as a result of this treatment and we will continue doing it. Meanwhile, i continue to see patients who went the drugs-stepladder route and have the most horrible side effects imaginable for something that’s supposed to help. Look into the scientific rationale for this – google “fecal bacteriotherapy” – look it up on pubmed.gov.
hey vivek and cyndy, my theory on why i got worse is that i had a different diet than my donor. i was a vegan for 5 years and she was eating a regular diet- healthy by most standards, but full of animal products. since our gut flora was probably so different due to our diets, i’m guessing that’s why i felt terrible doing FTs. i’ve heard when different strains are introduced (even in just oral probiotics), it can cause a lot of distress for some people.
Yes, i think the diet of the donor is probably very important – i would never eat beef if i were going to be a donor, but that might just be my own prejudice – in any case, my daughter makes me eat a vegan and gluten-free diet for three days before each treatment – sensible of her, i think.
I’m not sure how helpful the flagyl was either.
I am a Chinese and have UC for over 7 years. I got flare-up these days and 7-9 times a day and with a lot of blood. All medicine got useless for me.
I am very lucky that I am the 2nd patient who accept Fecal Transplant in China. The Fecal Stool donor is my younger brother. Now I have 1-2 times a day and NO blood anymore. Thanks to my doctor Faming Zhang in Nanjing, China.
Zhuo,
Curious to know how it has been going since your FTM? Ca you give me an update.
Thank you.
I’m going to be participating in the study being done in Hamilton in about a month. I’ll be sure to let everyone know how it goes.
I’m also going to participate in the Hamilton clinical trial. I’ve tried FMT at home and did a number of them over a few months and more than one time without any lasting results. I think I can’t find a good donor… so I hope the super donors in Hamilton will work for me. I have UC for more than 10 years.
I’ll keep you posted. I’m starting in January.
Cool Dan, I wish you all the best. I wonder why it seems to work for some but not others. I’ll be starting in January as well. I pray to God this helps. I’ve had colitis about 7 years.
Dan,
Any updates on your FTM?
Thanks
Hello everyone,
There’s some great information on this blog! I’ve had UC for 10 years, and FMT is definately something I intend to try! I read every paper I could find in the literature and it sounds awesome! There are a couple key issues, however, that I don’t see discussed much:
1. Many (perhaps most) gut bacteria are anerobic. This means that exposure to air could weaken or kill them. Perhaps this could be minimized by having the donor pass stool directly into a container containing saline so it is immediately submerged? The blending procedure could also be done using one of the small “bullet” blenders filled to the maximum capacity so as to minimize air getting churned into the mixture. I guess the best would be to purge everything with inert gas like nitrogen or argon first, but probably a bit tricky at home.
2. From the Borody clinic website (http://www.probiotictherapy.com.au/pages/colitis.html): “Although FMT has been successful in reversing colitis, this treatment is less successful in colitis than it is in C. diff…. The reason for this is unclear… in C. difficile diarrhoea and in patients with diarrhoea-predominant IBS the bowel is generally not inflamed and this may allow for easier implantation of a new bacteria onto the bowel mucosa than it is in colitis. In chronic colitis the implantation of the flora may be less likely on the inflamed tissues. We have noticed that if patients are given standard anti-inflammatory therapy until their bowel wall is completely healed, FMT can achieve long term reversal of colitis in more than 50% of patients in our experience, but the result is still unpredictable in the individual case.”
Soooo, it sounds like maybe it has a better chance to work if you can get inflammation under control first (like perhaps with SCD?) Any thoughts on this from those of you who had success, or failure with the procedure?
Hey guys,
I am participating in a fecal transplant study for colitis currently in Hamilton, Ont. I am blogging about my progress along the way. http://www.perseveranceblog.com/2013/02/15/poop-talk-fecal-transplant-therapy/
Feel free to subscribe to stay up to date with my progress!
Oh and… http://www.perseveranceblog.com/2013/02/16/fecal-transplant-day-after-first-infusion-day-2/
Did my second infusion… My symptoms are pretty much the same tho. I may be receiving a placebo as I am in a clinical study. Either way I am staying positive. To read more check out: http://www.perseveranceblog.com/2013/02/26/fecal-transplant-second-infusion-day-12/
Chris Thanks for the update.
Dr. Thomas Louie also does FMT through the university of Calgary I believe. I’m hoping to fly out to Calgary to have it done later next month!
Hi there,
I hope you don’t mind me posting to this blog – I don’t have UC, but had severe C. difficile in Oct. 2012 then failed treatment (I had been treated with Flagyl, when I should have been treated with Vancomycin). I got it because I’m a nurse practitioner (was likely exposed on the job) then had to go on Clindamycin (an antibiotic known to knock out the good bacteria in the gut). Both times I became very, very hypovolemic very quickly (ie within a few hours) bp around 55/33 the first time, second time it was 70/40. I’ve had severe pain since then, requiring low-dose fentanyl patch as well as Pregabalin and opioids. All of this sure interferes with a person’s life… Recently I’ve had a respiratory tract infection, needed two antibiotics (the first one didn’t work) and have developed symptoms of C diff again. I am becoming very interested in Fecal Transplant. I live in Toronto, so am looking for the name of an MD who does this procedure in Toronto or Hamilton. I’d do just about anything to get rid of this pain – this is no way to live…thank you in advance for any help you can give me.
Hi Sally,
Have you considered administering it for yourself?As soon as you have someone around you and you can be sure that he/she is healthy ( of course 100% only by the the full screening )you’ve made the hardest part. The rest of it…well if you are in such a condition it doesn’t really matter. I used goggles, mask, gloves, nose plug. I prepared it in my bathroom,, the donor was my sister and my wife. The equipment costs not more than 30£.You can find Borody’s home procedure in Pdf on the web,that explains everything from prep to application.(if you cannot find it let me know i will help)I freezed them in 60ml plastic containers and I had the treatment for 60 days. For Cdiff they say only one maybe enough, most of the stats from experiments are about cdiff.(80-90% cure ratio). As every treatment it also has risk, but the cdiff experiments says that is minimal. Regards.Donald.