How long to pursue home FT for severe pancolitis?

Sorry to post another FT question!  I know there are threads on this but I could use some very specific questions answered, without sifting through the lengthy threads.  We are under a severe time crunch with deciding on surgery for our 16 year old son.  In the meantime we want to give FT the best possible chance to work and want to do the FT as long as is necessary and realistic first.  My son's dx in 10/13 was severe pancolitis (entire colon severely inflamed and ulceration throughout) and a scope last week showed no significant change (he is 9.5 severity on a scale of 1-10 according to our doctor in the top pedi IBD center).  Our son is 5-ASA intolerant, unresponsive to steroids and has antibodies to Remicade, so basically we are trying FT before moving toward surgery.

My question is, for those of you who were successful with FT, how long did you follow the regimen before seeing maximum results?  We need to have a cut off date in mind so if surgery is needed, we can do it this summer, yet we want to give the FT sufficient time.  Hearing about your time frames would help set that cut off date.  I read on fecaltransplant dot org, that his severe pancolitis was cured with home FT but he did the enemas daily for 5 weeks - this is surely longer and more frequently than other research protocols but we are willing to do it if it might help.  Also, please let me know the extent and severity of your disease, as I believe that makes a difference.  Thanks so much!

We have been doing FTs for my son since Dec 2011. In his case it hasn't prevented him from flaring twice but FT does seem to help him recover much quicker from a flare. Since starting FTs he has been med free for 8 months and 5 months with a relatively short pred treatment in between.

When I spoke with Dr  Borody last summer he said there is no fixed amount of FTs for everyone. He's had patients that only need a week and he had one person who did almost 300 FTs before they saw long term remission. Borody was recommending 30 daily enemas to his patients when I spoke last year. So I would probably try 30 daily FTs to start but it all depends on how inflammed your son is when you do the FTs.

Post Edited (Edbar) : 5/4/2013 6:51:31 PM (GMT-6)

30 enemas? You have got to be joking. I was in tears from doing 3 enemas the night/morning before surgery. I'd rather have had surgery than 27 more enemas. Tbh, I don't see how anybody in a severe flare-up could tolerate that.

How would you even get enough poo for 30 enemas/day? Have 30 donors lined up??

Ft's didn't do much for me using my daughter as donor, did a lot for me with my oh (38 year old healthy male). I notice it working immediately. However it doesn't last. This weekend I tried a coffee/garlic enema first to kill any parasites first, I will let you now if .i have success. I don't think I am as inflamed as your son sounds though. From what I've read, the people with the most success are females who have had uc less than 3 years and are using male donor (I fall into the category). Not sure why. Who are you using as your son's donor?

I have a good friend who has horrible uc starting when he was 18. He had it for about 4 years, nothing worked for him and he was so so sick. He got the surgery. Now he lives a normal life. He was lucky and did not require a j pouch, but even if he did he said he would do surgery over being as sick as he was in a heartbeat. His only "side effect" from the whole process is now he goes poo 3 times/day and it is a bit softer instead of a normal once. I'm just letting you know so that if surgery is your last option, you realize that it may not actually be that bad.

I hope your son heals soon, whatever you decide.

lol....of course I meant a daily enema for 30 days. Nearly gave a few folks a heart attack. Sorry about that.

"Just came back and saw all the replies ( was too busy with those 30 enemas to read here, JK!)."

Yeah, this is what I do.

I do 10 enemas in the morning, after the 10th one I walk bow legged and can't sit for 2 hours.

The next 10 enemas I do them at around 1 pm. I pretty much have to be on morfine at that point.

The last 10 in the evening, 5 of them needs to be administred by my mom, cause I already fainted from pain.

Rince and repeat. I call it the 30/30 .

Formyson, that sounds like a very good plan. Good luck and let us know how it goes.

laughingduck said...


I have a good friend who has horrible uc starting when he was 18. He had it for about 4 years, nothing worked for him and he was so so sick. He got the surgery. Now he lives a normal life. He was lucky and did not require a j pouch, but even if he did he said he would do surgery over being as sick as he was in a heartbeat. His only "side effect" from the whole process is now he goes poo 3 times/day and it is a bit softer instead of a normal once. I'm just letting you know so that if surgery is your last option, you realize that it may not actually be that bad.

I hope your son heals soon, whatever you decide.

I don't get this, He didn't require a jpouch and he goes only 3 times a day. what does he have? *if he had a bag you would have mentioned that*

laughingduck said...


I have a good friend who has horrible uc starting when he was 18. He had it for about 4 years, nothing worked for him and he was so so sick. He got the surgery. Now he lives a normal life. He was lucky and did not require a j pouch, but even if he did he said he would do surgery over being as sick as he was in a heartbeat. His only "side effect" from the whole process is now he goes poo 3 times/day and it is a bit softer instead of a normal once. I'm just letting you know so that if surgery is your last option, you realize that it may not actually be that bad.

I hope your son heals soon, whatever you decide.


I don't get this, He didn't require a jpouch and he goes only 3 times a day. what does he have? *if he had a bag you would have mentioned that*



ya, i'm cornfused too - don't make no sense no mater how many different ways i read it ?

Thanks for asking, banana girl and thanks for your comments, all.

Well, we have seen a modest but definite improvement. In answer to your question, Steven, yes, he did have an initial response to Remicade, then quickly developed antibodies (each of his 5 infusions showing less robust response). So, that is giving us cause to consider the possibility of Humira or one of the others or even Uceris to see if he can't be pushed into remission. If not, it is likely time for surgery.


As for diet, we do what we can, no dairy, no gluten, no sugar, restricted FODMAPs and sulfites, etc. All based on keeping a food diary and watching what he reacts to. I don't see a very low carb diet working for him though, even though in theory i understand the concept. Since he is feeling better lately, we might try another go at reducing the carbs. We have struggled to get him back to 100lbs though, and cannot afford to go backwards.

Thanks again, all!

Had severe pancolitis. Did 1 enema every morning for 27 days. Is it a success story? Impossible to know. Do I think it helped ? Yes. Do I think I can get a flare again? Yes

I achieved total remission in 2 weeks of FMT...used my 14 year old brother as donor. I did the transplants everyday for 19 days, I stopped because my symptoms were gone after 9 or 10 days. I would recommend doing it as long as it takes to work, have faith that it will work, but reading the thread above where 30 days is recommended is definitely plausible. I had pancolitis for 4 years and no diet/supplement brought me even close to remission. FT targets the bacterial imbalance which is the entire issue to begin with. Give it time and have faith, the only way I would get surgery is if toxic megacolon had developed. If FT didnt work with the first donor I would retry and retry till it works. Luckily my first attempt worked out. Hope this helps.