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counting success stories of FT for UC

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Ulcerative Colitis
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Posted 11/20/2013 8:21 PM (GMT 0)
Hi MaxMilian,
I was my son's donor. I went through all of the fecal tests and blood tests just to make sure that I didn't have any communicable diseases or parasites.
Posted 11/20/2013 10:29 PM (GMT 0)
Ok so far so good, I've done 14 infusions, no blood, no mucus, 1 or 2 formed BMs, have a little ab pain every now and again and little rectal inflammation which i am trying to fix with vit e suppositories.
Posted 11/21/2013 1:01 AM (GMT 0)

herbgarden said...
Hi MaxMilian,
I was my son's donor. I went through all of the fecal tests and blood tests just to make sure that I didn't have any communicable diseases or parasites.

Do you guys share similar diets?

I have a suspicion that FTs may only properly work if the donor is a relative and if the donor shares a similar diet to the receipient. I had 6 FMTs performed at the CDD from an anonymous donor which failed and has since left me with horrible IBS issues.

I have been thinking about possibly conducting a few home FMTs with my sister as my donor to see the effect. I hate my current bowel issues.

Posted 11/21/2013 5:11 AM (GMT 0)
Hey MaxMilian,

I have similar thoughts about FMT regarding relatives and similar diet. I recently finished 15 transplants over 3 weeks with a friend as the donor. During the process my symptoms were a roller-coaster, being extremely bad at certain times which i contribute to my donor not following SCD as i do and whatever war was raging in my colon. Regardless, I have been improving since the last FT but still question its efficacy. In a month if it doesn't seem to have helped i will perform the transplants again with my Father while feeding him the same foods that i eat daily. I do believe that diet has a large role and wish I was less timid in asking my friend to eat as i do, I mean...I already asked him for his poop.
Posted 11/21/2013 5:52 PM (GMT 0)
I'm after the colonoscopy and endoscopy. GI, who performed tests, said I have mild to moderate UC. Unbelievable! I wonder what it's like to have severe UC. He asked me if I suffer from Heartburns. I don't. He said that the endoscopy showed that I also suffer from Esophagitis and Sliding Hiatal Hernia. I'll have to look it up. No I have new problems. Hopefully it's caused by UC and will go away with it…
Next step, I'm seeing the main GI in about 10 days and hopefully he will remember what he said about him having no objection to kind of following up the fts if it's found to be UC. ( My donor insists on having a GI supervising the treatment).

Great news from herbgarden, delta and adventureuc . I will add you to the list soon. Please keep us informed.
Posted 11/25/2013 5:44 AM (GMT 0)
Hey Sharon,

Could you please share your updated list? Thanks...
Posted 11/26/2013 2:11 PM (GMT 0)
Hi Mobin, I'm going to update the list in a few days. I've printed the all thread and will scuritinize it for new\unnoticed information.

For the meantime, anyone with an experience with fts, either positive or negative, please let us know about it.

Sharron
Posted 11/26/2013 8:12 PM (GMT 0)
MaxMilian,
My son lives with me and so yeah, we do share similar diets (being that I do all of the cooking). He will usually grab some lunch, fast-food, but we primarily eat the same things. I tend to agree with using a family member, who eats similar or who is exposed to the same types of bacteria. If you could get someone who lives with you to be the donor, then you may have better results.
Posted 11/27/2013 11:48 AM (GMT 0)
A new update of the list. (I think I might display it next time in a table)

Update

success stories:
1. FecalTransplantForUC (Michael): XXX yrs male; severe UC for 12; donor - 28 male friend living together during infusions; 5 weeks of daily transplants at home in June-July 2011; gained remission a week after last FT (when added anti-depressants); still in remission, no medication (as of Sep 2013).
2. Curl: XXX yrs make; dx -XXX XXX ; donor XXX yrs wife; 27 days of daily FTs.; in remission since April 2012, no medication. (as for Apr 2012).
3. Bloom93: 19 yrs female; dx - May 2011 pan colitis + c.diff. ; donor - 12 yrs brother; 5 days of FTs at home; back on medication and 90% SCD; in remission. (as for June 2013).
4. FT is the REALDEAL; male 27 yrs; dx: pancolitis for 2 yrs; donor 14yrs brother; 19 days of FTs; started beginning of April 2012, symptoms free after 10 days; completely cured. (as for June 2013)
5. Lolil – 35 yrs female; dx July 2011 severe pancolitis diagnosed July 2011 (first flare Dec 2010 while pregnant); donor - husband; about 10 daily FTs; antibiotics prior to Fts, Imuran 2 months before, during and shortly after FTs; currently: Lialda, pre natal vit w/DHA, VSL#3 DS w/Kefir; In remission. (as to June 2013)
6. Adventureuc: 36 yrs female; dx – symptomes since March 2012 "came about as a result of being pregnant"; donor XXX yrs husband; 7-8 FTs at home in August 2013. Took Uceris March-August 2013; positive change was almost immediate, getting better every day since FTs, currently on no meds. (as for Nov 2013)
7. delta30: 35 yrs XXX; dx – March2013 procolitis, later colitis with inflammation in the cecum and right colon; donor – XXX; so far has done 14 infustion, took 1 month antibiotics before FTs. Doing well. No meds. (as for Nov 2013)



Not sure:
1. Soystud - XXX yrs XXX; dx XXX Dec 2003, donor - son; 5 FTs
2 Edbar - 9 yrs boy; dx spring 2011 descending and most transverse colon; donor XXX yrs XXX; FTs started Dec 2011-gained remission twice - 8 and 5 months. Used pred to allow retention at first stage.

Fail stories:
1. Probiotic: XXX yrs XXX; dx - XXX, inflammation is more severe deep up than rectal area; donor – live in gf (now wife) XXXyrs ; 4 days of FTs at home, "didn't hold it long enough"; got worse during FTs
2. Killcolitis: XXX yrs XXX; donor - wife;3 months of daily FTs; condition got worse. 6 FTs???
3. Bananagirl: 23 yrs female; dx XXX severe uc; donor –XXX yrs female relative; 8FTs; fever, nausea, diarrhea during transplants.
4. Joma – 41 yrs female; dx 1998 pancolitis after taking antibiotics; donor – 1yr son; daily FTs for about 3 weeks?, good retention. (what was the reaction to fts?)
5. MaxMillan: XXX yrs XXX; dx -2010 IBS, proctitis, 2012 crohn(?) fructose and malabsorption, non toxigenic, c.diff; donor - XXX yrs XXX; 6 FTs at the CDD in Sydney; condition got worse after FTs

Please do report your stories and correct my mistakes.


If you are in one of the list please do complete the information as much as you can. Any update on your situation is welcome.

wishing you a comopete recovery,

Sharron
Posted 11/27/2013 11:53 AM (GMT 0)
sorry forgot to add Loolover

success stories:
1. FecalTransplantForUC (Michael): XXX yrs male; severe UC for 12; donor - 28 male friend living together during infusions; 5 weeks of daily transplants at home in June-July 2011; gained remission a week after last FT (when added anti-depressants); still in remission, no medication (as of Sep 2013).
2. Curl: XXX yrs make; dx - ; donor XXX yrs wife; 27 days of daily FTs.; in remission since April 2012, no medication. (as for Apr 2012).
3. Bloom93: 19 yrs female; dx - May 2011 pan colitis + c.diff. ; donor - 12 yrs brother; 5 days of FTs at home; back on medication and 90% SCD; in remission. (as for June 2013).
4. FT is the REALDEAL; male 27 yrs; dx: pancolitis for 2 yrs; donor 14yrs brother; 19 days of FTs; started beginning of April 2012, symptoms free after 10 days; completely cured. (as for June 2013)
5. Lolil – 35 yrs female; dx July 2011 severe pancolitis diagnosed July 2011 (first flare Dec 2010 while pregnant); donor - husband; about 10 daily FTs; antibiotics prior to Fts, Imuran 2 months before, during and shortly after FTs; currently: Lialda, pre natal vit w/DHA, VSL#3 DS w/Kefir; In remission. (as to June 2013)
6. Adventureuc: 36 yrs female; dx – sumptomes since March 2012 "came about as a result of being pregnant"; donor XXX yrs husband; 7-8 FTs at home in August 2013. Took Uceris March-August 2013; positive change was almost immediate, getting better every day since FTs, currently on no meds. (as for Nov 2013)
7. delta30: 35 yrs XXX; dx – March2013 procolitis, later colitis with inflammation in the cecum and right colon; donor – XXX; so far has done 14 infustion, took 1 month antibiotics before FTs. Doing well. No meds. (as for Nov 2013)



Not sure:
1. Soystud - diagnosed Dec 2003, donor - son; 5 FTs
2 Edbar - 9 yrs boy; diagnosed spring 2011 descending and most transverse colon; donor XXX yrs XXX; FTs started Dec 2011-gained remission twice - 8 and 5 months. Used pred to allow retention at first stage.
3. Loolover- XXX yrs XXX; donor - XXX yrs XXX; recently finished 14 fs over 3 weeks; during process symptomes were "roller-coster". "have been improving since last FT but still question its efficacy".

Fail stories:
1. Probiotic: inflammation is more severe deep up than rectal area; donor – live in gf (now wife) ; 4 days of FTs at home, "didn't hold it long enough"; got worse during FTs
2. Killcolitis: donor - wife3 months of daily FTs. Condition got worse. 6 FTs???
3. Bananagirl: 23 yrs female; dx XXX severe uc; donor –XXX yra female relative; 8FTs; fever, nausea, diarrhea during transplants.
4. Joma – 41 yrs female; dx 1998 pancolitis after taking antibiotics; donor – 1yr son; daily FTs for about 3 weeks?, good retention. (what was the reaction to fts?)
5. MaxMillan: XXX yrs XXX; dx -2010 IBS, proctitis, 2012 crohn(?) fructose and malabsorption, non toxigenic, c.diff; 6 FTs at the CDD in Sydney; condition got worse after FTs

If you are in one of the list please do complete the information as much as you can. Any update on your situation is welcome.

wishing you a comopete recovery,

Sharron
Posted 11/27/2013 11:56 AM (GMT 0)
to Aussiet and poopsleuth - have you started fts?

to herbgarden and kickboxer - please let us all know how the fts are going.

to LooLover - O've added you to the 'not sure' list. I hope by now we can call it a success.

sharron
Posted Yesterday 2:26 AM (GMT 0)
I have slowly improved since the FTs and hope it will continue. It has been about 2 weeks now, I only question the lack of dramatic improvement. It seems that many who have had success are almost symptom free immediately, as opposed to a long slowly improving condition. Anyways, here is some additional information about my condition and FTs. Dx'd June 2011, 24 yr male, 24yr male donor, SCD diet, no medication, VSL3.
Posted Yesterday 7:21 AM (GMT 0)
Hi Loolover, have you thought about doing infusions every day. Perhaps twice a day will be even better. From our data collected so far the frequency does seem to be important. Thanks for adding personal information. I can't wait to add you to the success list and add it all in.   As for me, colon is still very inflamed. I haven't been eating a thing since Sunday. I will have something at lunch. I'm seeing the GI again on Monday and hope and pray that he will approve FTs now, when we have the result of the colonoscopy.   Sharron  
Posted Yesterday 11:20 AM (GMT 0)
update
i am female and 48 yo husband is my donor.
Loolover i didn't see immediate improvement too, took me 2 weeks to improve i am still experiencing pain every now and again but the rest is good. couldn't handle every day infusions it just felt wrong and full in there so every third day seems to be a go for me i guess bacteria need time to establish in the gut? according to Borody it will take about 12 weeks to gain remission
Posted Yesterday 3:10 PM (GMT 0)
Thanks Delta30. I will add your information when I create the table format.

Also great to get advice from someone who actually experienced the FTs. Hopefully Loolover will get better soon.

Sharron
Posted 12/1/2013 10:53 AM (GMT 0)
Just some update: I'm not sure what is worse, fasting during the days I work or eating during the ones I don't. I'm seeing my GI tomorrow morning. Last Friday I saw my GP. He said that if GI refuses to supervise the FTs he will consider doing it. I'm not sure that will satisfy my donor but I hope GI will remember his words from last visit.

Meanwhile, I hope the ones who are in the midst of infusions are getting better and are on their way to a long remission.

Sharron
Posted 12/2/2013 10:48 AM (GMT 0)
I've just been to my GI. No, he will not supervise TFs. Said first I need to take the preds and show that it doesn't work for me. Then he would need to get a special pemission to conduct a research on FTs and not just have one patient doing it. He is not interested in conducting such a research as there so many other fields of interest. He believes the preds might put me on a long term remission. Wants me to start on 40mg. I'm so disappointed. What do I need supervision for. I don't need him to hold the enemas bucket for me. Will be very difficult to find a new donor who would agree to do it without a doctor's supervision. 

He told me to try my luck with a different GI who might be more interested in that subject. I've already booked an appointment with her for next Monday. Can't think about how to get it all started.

Good luck with infusions.

Sharron

Posted 12/2/2013 6:43 PM (GMT 0)
Hey Sharron,
Im sorry your doctor isn't willing to supervise, it seems like even if he considered it, it would be a long drawn out process. Have you exhausted all other options for donors? I don't know your situation but these are a few things I considered if I couldn't find a close donor.
1. A couple long weekends from work to visit a willing family member
2. Reaching out to the HW community of people that have completed FTs with a donor, possibly a donor relatively near you.
3. If you're really desperate, a craigslist ad for a healthy individual willing to live with you for a week or two.
Posted 12/2/2013 8:24 PM (GMT 0)
To the people who have tried FT, do you get the donors stool screened for any possible diseases or anything? Or just find someone you know and trust and get them as a donor?

I have done FT, I'm in a study at a hospital here in Hamilton, Ontario. I noticed results originally, but it doesn't seem to be doing anything anymore. The only problem is they only allow you to get it done once a week, which I really believe to be an issue. My mom offered to be a donor, that way I could try it at home and do it daily for as long as I needed it. Only issue is I have no way of getting her stool screened or anything. We have similar diets, and she's in excellent health so I'm not too worried, but it's always in the back of my mind.
Posted 12/2/2013 10:18 PM (GMT 0)
Here is a link to the recommended tests to perform before doing a FT
thepowerofpoop.com/wp/wp-content/uploads/2013/03/FMT-Donor-Tests.pdf

I had both a stool and blood test performed on my donor. The stool test was done by Diagnostechs from a kit given to me by my doctor. A blood test can be done by giving blood.
Posted 12/2/2013 11:34 PM (GMT 0)
Link doesn't work! Says that page doesn't exist. Couldn't find info on the site either.
Posted 12/3/2013 1:43 AM (GMT 0)
Sorry about that, this should work. There is a lot of other great info about FT's on that site as well.
thepowerofpoop.com/wp/wp-content/uploads/2013/03/FMT-Donor-Tests.pdf
Posted 12/3/2013 2:02 AM (GMT 0)
I tried several ft's at home (10-15 or so). At first they really worked, but towards the end they made me flare. Not sure why the change, but I stopped doing them.
Posted 12/24/2013 4:36 PM (GMT 0)
Back on my old thread. Sorry for taking so long to reply. A terrible incident to do with my son prevented me from writing. (Unfortunately uc is not our only difficuly in life).   Yesterday I've met another GI who seems to know more about the fts. Luckily, I work (clinical psychologist) at the same hospital and therefore was entitled to a second opinion. To remind you my potential donor agrees to donate only on the condition that the treatment is supervised by a GI. The GI had quite a bit of articles on the subject on her computer. She said she would send the form to the special committee, which grants permissions for medical experiments on Human beings. I explained to her that I wasn't expecting to get transplant via colonoscopy but wanting to perform enemas at home. She replied that in order to get involved with it she still needs the permission of the Ministry of Health. So much I hope that it doesn't get stuck there. If she does manage to get it, perhaps it would be for the best to get first treatment in the hospital and continue with enemas at home. The GI didn't know much or perhaps anything about the DIY home treatments. I've just asked Dr Lawrence permission to forward to her our correspondence and I hope he will agree to that. So far he's been great help! Luckily, I work as a clinical psychologist in the same hospital and therefore was entitled to a second opinion. The GI sent me the form and asked me to fill as much as I can by myself. On January 5 she will look again into it. She believes that we will get the permission and that it would take about 2 to 3 weeks to get it.   There is a slight improvement with by flare. I keep fasting for three and a half days a week (enables me to continue with my part time job) and suffer during the other three and a half days). I've increased the dose of probiotics and try as much as I can to restrict my diet to cooked vegetables and chicken. I really want to start the fts without taking steroids but will follow the doctor's advice.     I would like to know how the rest of you are doing and update our list.   Laughingduck - obviously you didn't have much success but could you please provide us with more information?   Hope you are all doing well over the holidays and wishing you a Healthy New Year!   Sharron       
Posted 12/24/2013 7:46 PM (GMT 0)
Just checking in to say, that it appears you got my info right. I'm in the FT success story category.

I'm 6 weeks pregnant with my 2nd pregnancy. Since all the UC symptoms came on during my 1st pregnancy, I'm scared no doubt. I've started to keep my BM log…in hopes I can catch it before a full severe flare like last time. It's hard to judge just in the last week, but it seems like I'm more consistently having 3 BMs a day versus a more regular 2 BMs prior to pregnancy. Things change day by day a little anyway. And just to be clear, I don't have large, S shaped, firm poos like pre-UC. My care provider says no urgency, no mucous, and no blood are the things we want.

I recently had a one year follow-up with my GI care provider. I was disappointed to learn the FDA bullcrap has seemed to stop future FT success stories. I will be doing it again on my own, if needed. Although, I'm not sure if doing it while pregnant would be advisable. My donor was my husband (age 39 at the time), and he was screened. If it came to it next time, I don't think I would even bother having him screened again if the healthcare community wasn't helpful. We would just go for it ourselves.
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