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counting success stories of FT for UC

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Posted 6/12/2013 9:56 PM (GMT 0)
Sharron19-other success stories on here were ramaNYC and sas, who also had success w/ FT. I suspect that alot of people who had success and are feeling good are off of this board and out living life to the fullest.
B
Posted 6/13/2013 12:21 AM (GMT 0)
hey jonana :-)

how do you know the L-glut is not helping ?

Posted 6/13/2013 12:33 AM (GMT 0)
I've been taking it for a few years now and I still have UC. what the hell???
Posted 6/13/2013 1:59 AM (GMT 0)
but your uc might be worse if you weren't taking it ?????

just throwin it out there -
Posted 6/13/2013 3:12 AM (GMT 0)
There is an FT trial going on through St Vincents Hospital in Sydney in the coming months. They say generally FT's have a 50% success rate. For the people it works for it works brilliantly, the others- not at all. In all of my talks with the FT doctors it really does seem that you have to have the donor tested. Also first time through colonoscopy. Also make sure any infection is cleared first (antibiotics or wild oregano oil perhaps). Then it is about repetition and consistency. And not giving up!

In my opinion diet, drugs, supplements etc all seem to take about 6 weeks to kick in properly. So for FT's I would also try at least 6 weeks before judging. Also with bacteria you can have a die off effect that makes you sicker before you get better. I would keep doing it through this rather than interpreting this as a sign of getting worse.

I'm getting another 2 donors screened next week. My first one failed :(
Cant wait to try this! Everything else hasn't worked for me.

Also today I got some Low dose naltraxone cream!! excited as there have been a few success stories on here about that lately :)
Posted 6/13/2013 2:38 PM (GMT 0)
I had pancolitis for 4 years, did 19 consectutive days of ft and cured myself completely. No symptoms, 100% normal. I started the ft the first week of April and was symptom free after about 10 days. I am a 27 year old male and I used my 14 year old brother as the donor. Did not get him tested as I did feel the need to waste anymore money than the tens of thousands I've spent on wasted treatment/supplements.
Posted 6/13/2013 8:28 PM (GMT 0)
Hi to all UCers,

Thanks Michael, you've put so much time into that, I'm really happy it worked for you. What you write makes sense. Unfortunately I can't live with my donor. We live in different cities and both have other commitments. I think she goes to the toilet in the evening and I plan in traveling to her place after work and come back home late at night. Not sure how I will get through the embarrassment of it all. I have the intention of doing it for a long time.I asked Dr Brandt to have it done in his clinic and his reply was that unfortunately the FDA does not allow FTs to be done legally outside of an approved clinical trial and that he was working on C. difficile now. However he wrote that there are many patients who have tried self-administration of fecal enemas and who have had good results. He suggested that I start by reading Silverman’s article and Kindly he offered to answer questions I may have.

hateuc - Thanks for the information. I absolutely agree with you. I suspect there are lots out there cured by using uc but don't want to be busy writing about it now. As we know they had had enough of it when they weren't well. As for the 2 people mentioned I think perhaps it's better not to add them to the list unless the ask for it. We can't be sure if still in remission and if they want there experience mentioned in this thread. What do you think?

Dear Aussiet - GOOD LUCK. I really hope it works for you. I hope find the inf on this thread helpful. We'll all be holding our fingers together when you start the therapy. Please keep updating us. We can all benefit from more information such as mentioned at the top of thread.

FT is theRealDeal - Thanks for sharing. I will add your experience to the list. Was it April this year? Keep well and please update us with any news.

Wishing all UCer a complete recovery or at least a remission for the meantime.
Posted 6/13/2013 8:36 PM (GMT 0)
Update

success stories:
1. Michael - severe UC for 12 yrs (1999-2011; donor - 28 male friend; 5 weeks of daily transplants; gained remission a week after last FT (when added anti-depressions); still in remission, no medication.
2. Curl - 27 days of daily FTs. donor - wife; in remission since April 2012, no medication.
3. Bloom93 - 19 yrs female; diagnosed May 2011; donor - 12 yrs brother; 5 days of FTs; back on medication and 90% SCD; in remission.
4. FT is the REALDEAL; male 27 yrs; pancolitis for 2 yrs; donor 14yrs brother; 19 days of FTs; started beginning of April 2012, symptoms free after 10 days; completely cured.

Not sure:
1. Soystud - diagnosed Dec 20-3, donor - son; 5 FTs

Fail stories:
1. Probiotic - inflammation is more severe deep up than rectal area; donor - wife; 4 days of FTs, "didn't hold it long enough"; got worse during FTs
2. killcolitis - 3 months of daily FTs. Condition got worse.
3. bananagirl - severe uc; donor female relative; fever, nausea, diarrhea during transplants.
4. Joma - 41; pancolitis 15 yrs; dinir - son 1yr; daily FTs for about 3 weeks?, good retention.
5. MaxMillan IBS, proctitis, crohns?; FTs at the CDD in Sydney; condition got worse after FTs

Please do report your stories and correct my mistakes.

I hope this is helpful for anyone like myself who is contemplating FTs
Posted 6/14/2013 6:09 PM (GMT 0)
Hi Michael, I've been to the health shop. Inquired about l-glutamine. Not sure what type to buy. They had Solgar's 50mg in capsules or powder. Could you please help me with that?

For anyone who's experienced FT's please let us all benefit from it by providing as much information as you can.
Posted 6/14/2013 6:58 PM (GMT 0)

My 9yo son was diagnosed in spring 2011 when he had the decending and most of the transverse colon affected.

We've been doing FT for him since Dec 2011. When we started he was on pred which meant he was able to retain the enema with no real problems. Once he was off pred we continued doing one daily enemas for 2 months then began weaning. Was doing one enema every 3 weeks when he had a minor flare 8 months later which we controlled with lowish dose of pred and daily enemas again. He weaned off pred again and was med free for 5 months until recently when he flared again. He was back on pred and daily FT and now med free again.

I do believe FT helps my son and the fact that he was med free for 8 months and then 5 months proves this. Would he have flared if we were doing enemas more frequently? I don't know. Borody suggested alternating donors and we will likely try this as we have another donor already tested.

I believe there is more to my son's UC that just a messed up flora. While I think FT has helped a lot it may only become part of his treatment rather than something alone that puts him in a long remission. Unless of course alternating donors does in fact make all the difference. 

Posted 6/19/2013 4:13 AM (GMT 0)
My apology for long delay. I've been busy recently and ate what I am not suppose to (a small amount of nuts) so flared again. I will wait with FTs. Meanwhile will try my best to gather the information on this thread for the benefit of us all.

Edbar - Thanks for sharing it with us. May I offer you son of yrs my sincere consolation and that the next time you try FTs altering donors the remission will become a full recovery. Do you agree to adding your son's experience to the 'not sure' list? definitely Ft worked but only for a certain amount of time. Once another long term remission gained the details can be moved up to success stories.

Update

success stories:
1. Michael - severe UC for 12 yrs (1999-2011; donor - 28 male friend; 5 weeks of daily transplants; gained remission a week after last FT (when added anti-depressions); still in remission, no medication.
2. Curl - 27 days of daily FTs. donor - wife; in remission since April 2012, no medication.
3. Bloom93 - 19 yrs female; diagnosed May 2011; donor - 12 yrs brother; 5 days of FTs; back on medication and 90% SCD; in remission

Not sure:
1. Soystud - diagnosed Dec 20-3, donor - son; 5 FTs
2 Edbar - 9 yrs boy; diagnosed spring 2011 descending and most transverse colon; FTs started Dec 2011-gained remission twice - 8 and 5 months Used pred to allow retention at first stage.

Fail stories:
1. Probiotic - inflammation is more severe deep up than rectal area; donor - wife; 4 days of FTs, "didn't hold it long enough"; got worse during FTs
2. killcolitis - 3 months of daily FTs. Condition got worse.
3. bananagirl - severe uc; donor female relative; fever, nausea, diarrhea during transplants.
4. Joma - 41; pancolitis 15 yrs; dinir - son 1yr; daily FTs for about 3 weeks?, good retention.
5. MaxMillan IBS, proctitis, crohns?; FTs at the CDD in Sydney; condition got worse after FTs

Please do report your stories and correct my mistakes.
Posted 6/19/2013 9:11 PM (GMT 0)
Not necessarily a success story to add to your list, but I think pertinent (and hope you find it as interesting as I do):

During a visit to my GI yesterday, he brought up FT as a possible treatment for UC. And this guy, as much as I "love" him (he's been my GI for the 16 years I've had UC and is the one who diagnosed me), is a bit of a fuddy duddy - not someone I consider to be on the cutting edge of treatment options...

He said that a patient of his, a woman in her 60's, used her son as a donor about 9 months back and is now off meds in remission. He plans to write up her story and add it to the "literature" regarding FT for UC knowing there is not a lot of definitive information out there yet on its success.

I found it encouraging, and feel like if I decide to go that route (b/c it's also on my radar as a serious option) I'd find the support I need in pursuing FT, even if I would have to do it myself at home...

Sharron - I hope you are able to get the flare down soon so you can try out FT like you hope to do. All the best!
Posted 6/19/2013 9:23 PM (GMT 0)
hey ps - do you have a donor in mind ?

sounds like you have an awesome doc !
Posted 6/19/2013 10:06 PM (GMT 0)
My husband would be the best option. He's early 40's, no medical issues whatsoever, and as regular in his daily constitutional as they come. Like 7:10am on the dot. And of course lives with me to make the process reasonable!

But I'm not pursuing that path just yet. Right now I'm giving diet modification the first honest try of my life. Had a scope yesterday - have only 3cm of inflammation at the bottom of the rectum at this point, so hoping a week or two on mesalamine suppositories (thanks to Kazbern's advice yesterday) and SCD will subdue it. Fingers crossed and all.

My doc is pretty awesome.
Posted 6/20/2013 4:50 PM (GMT 0)
ps- thanks for the pertinent story and for your concern about my flare. I am better today. I want the colon to be in a sound state before I start FTs. I'm not taking medication bc UC was caused by antibioitics 13 years ago and bc I tried taking anti-inflammatory and ended up in hospital with a serious liver infection (bilirubin 14.5). Currently I take strong probiotics and know what I have to avoid. I'm thinking about adding L-glutamine as suggested on this board.


I agree, an awesome doctor!

Post Edited (sharron19) : 6/20/2013 9:56:34 PM (GMT-6)

Posted 6/21/2013 3:53 AM (GMT 0)
Add me to the list of successful FT-ers. I posted about my FT last year - around August 2012.

I was diagnosed w/severe pancolitis in July 2011. (I started flaring in December 2010 while pregnant and was undiagnosed until July 2011)

My husband was the donor. I believe we did 10 transplants or so at home, daily (I think there was one day that we had to skip in the middle). I forgot the exact number. You could find my old thread, if you are curious.

I took the prescribed antibiotics prior to the FTs, and followed what I believe was Borody's protocol.

I was started on Imuran about 2 months prior to the FT. My docs wanted my UC to be more in control before starting the FTs. I think that helped a lot. I stayed on Imuran during the FTs, and for a short period after. Before starting Imuran, it seems like I was still going 8-10 times per day with some urgency.

I am happy to report I am still in remission! My docs prefer that I stay on the maximum dosage of Lialda for maintenance and take VSL#3, but that is all. I wouldn't say things are perfect, or like the pre-UC days. But I would still consider it very much a success! I go 1-3 times per day usually, and mostly all within 1-2 hours of waking. That makes my days much more livable. I don't really test the urgency, since I get everything all taken care of before leaving the house for the day. But it is definitely not the mad dash that I experienced for months on end.
Posted 6/21/2013 11:28 AM (GMT 0)
My son will be getting 3 ft's in July. I found a GI who does them for UC and had pretty good results. I will update after he has the first infusion. I opted to be be his donor and will get my Labs and stool tests done within the week.
Posted 6/21/2013 12:51 PM (GMT 0)
@Lolil- that is a great story!! So glad you are still in remission...very encouraging! Do you do any "maintenance" ft's?
B
Posted 6/21/2013 1:05 PM (GMT 0)
We have not done in Maintenance FTs. But I have those in mind, the first I start seeing any mucous or blood. I have had a few scares, where I thought the UC was ramping back up -- but they all turned out to be some kind of virus. I guess that happens when you have a toddler at home bringing home lots of things! I think I have had 5 GI bugs in the last year, 4 of them post FT. A couple of times, my GI provider asked me to do a stool test. I started to have a bit more comfort that if the symptoms came on hard very suddenly, it must be a bug. I just try to take extra care of myself. A few times, it was obviously a bug because my daughter got something. Other times, I have gotten it worse than anyone else in the family. It all subsided after 3 days, and my UC-normal BMs resumed with a week.

I would highly recommend trying it to anyone. It's not as bad as you think. After even one dose, I noticed a change. And my thought process changed from "yuck--that's poo"...to "wow, that is some great natural medicine". Plus my DH was just a champ as he did all the mixing for me.
Posted 6/21/2013 2:46 PM (GMT 0)
That is awesome @lolil! Thanks for sharing. I am currently trying this w/ my husband as the donor. He is also nice enough to do all of the mixing! I hope we are all on to something here...seems like the med. community is slowly coming around.
B
Posted 6/21/2013 7:42 PM (GMT 0)
wondergul Lolil! Very glad to learn about your success with FTs. I think you were very lucky to gain remission so quickly as I know what it's like to spend hours in the toilet when there is a toddler at the background needing your attention. You are the fifth to enter our success list. Thanks, great contribution to all UCers on this board.

I'm also adding an entry which was omitted by mistake.

Update

success stories:
1. Michael - severe UC for 12 yrs (1999-2011; donor - 28 male friend; 5 weeks of daily transplants; gained remission a week after last FT (when added anti-depressions); still in remission, no medication.
2. Curl - 27 days of daily FTs. donor - wife; in remission since April 2012, no medication.
3. Bloom93 - 19 yrs female; diagnosed May 2011; donor - 12 yrs brother; 5 days of FTs; back on medication and 90% SCD; in remission
4. FT is the REALDEAL; male 27 yrs; pancolitis for 2 yrs; donor 14yrs brother; 19 days of FTs; started beginning of April 2012, symptoms free after 10 days; completely cured.
5. Lolil - 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.



Not sure:
1. Soystud - diagnosed Dec 20-3, donor - son; 5 FTs
2 Edbar - 9 yrs boy; diagnosed spring 2011 descending and most transverse colon; FTs started Dec 2011-gained remission twice - 8 and 5 months Used pred to allow retention at first stage.

Fail stories:
1. Probiotic - inflammation is more severe deep up than rectal area; donor - wife; 4 days of FTs, "didn't hold it long enough"; got worse during FTs
2. killcolitis - 3 months of daily FTs. Condition got worse.
3. bananagirl - severe uc; donor female relative; fever, nausea, diarrhea during transplants.
4. Joma - 41; pancolitis 15 yrs; donor - son 1yr; daily FTs for about 3 weeks?, good retention.
5. MaxMillan IBS, proctitis, crohns?; FTs at the CDD in Sydney; condition got worse after FTs

Please do report your stories and correct my mistakes.
Posted 6/21/2013 7:51 PM (GMT 0)
herbgarden, good luck with your son's FTs. Please let us know how you he gets on.

hateuc, good luck to you as well. Like yourself I am very happy to see that together we are creating a new community of people who are interested in FTs and in helping and supporting each other. Great to have someone else to mix the stuff for you.
Posted 6/25/2013 1:10 PM (GMT 0)
Hi, still coping with the flare. increased probiotics to 55 billions, will restrict the diet. No point in starting FTs now. Will not take medicine again. Not after the Mesalazine nearly finished my liver. I was so lucky not to listen to GI and to stop taking it soon as I saw the dark urine. In hospital I asked to wait with medicine for apparent autoimmune liver disease (steroid) and the bilirubin went down by itself. Eventually doctors admitted hapititis was a very rare side effect of Mesalazine. Anyone else experienced something similar?

@hateuc - I hope you are successful with FTs.
Posted 7/22/2013 7:04 PM (GMT 0)
I hope I am not prematurely calling the FT's a success, but so far we've had good results. My son had a colonoscopy and a fecal transplant was performed at the same time. He returned to the doctor's office and had another infusion 4 hours later. He was able to hold the second infusion for about 6 hours. The following day he had another infusion and held that one for 27 hours. In total he had 4 infusions and we plan to do them at home on a weekly basis.

I'm cautiously optimistic that this has helped already! My son is only having 1 BM per day and they are formed stools at times! I didn't want to muddy the water, so I had eliminated meds other than Uceris, about a week before the procedure. I kept him on Uceris, just to try and keep the inflammation to a minimum. I will report any new results as they occur. So far, FT was worth every penny that I spent!!
Posted 7/22/2013 8:07 PM (GMT 0)
So far sounds great herbgarden!!! Pls continue to keep us posted and hope the good news continues!
B
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