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Fecal Transplant - I took the plunge! PART I

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Ulcerative Colitis
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Posted 11/11/2009 9:59 PM (GMT 0)
Jesse,  Please correct me if I am wrong, but do you get your probiotics from yogurt alone? You are correct when you say probiotics only offer a few different strains, but yogurt isnt the only way you receive healthy bacteria. Many of us supplement with probiotics in pill or powder form b/c you need high cfu of probiotics and you really wouldnt get all you need from yogurt alone. So when Fruitgirl mentioned doing a probiotic enema, she didnt mean use yogurt to squeeze upward, she meant get a powder form of a probiotic (I use healthy trinity from Natren) mix with distill water and insert through an enema. As for doctors, I would start with your PCP. My GI is on board with what I am doing and although my PCP didnt really think it would work, ordered the necessary labs for my husband who was my donor. You dont need to find a doctor that agrees with you necessarily, but someone that will be supportive. Most docs arent on board with  "alternative therapies" b/c it is outside that little box they learned in med school. So like fruitgirl said, if you havent supplemented with probiotics other than what comes in yogurt, start with high doses in pill form and also making your own enema. I am not discouraging you from attempting the fecal transplant, but it isnt necessarily the "best" time I have had. Good luck.
Posted 11/11/2009 10:10 PM (GMT 0)
Hi subdued, a very good point. I only meant to say that I'm not in a position to be partying all weekend after a week of classes, leaving me with some boring Fridays while many students are out getting hammered.

Natty, forgive me I misread the post. I take probiotics in pill form (Bio kult and Mutaflor, though I've tried other brands in the past) as well as eating homemade yogurt. I must have read the idea of a yogurt enema somewhere and assumed that's what fruitgirl was talking about, but a concoction of powdered probiotics does seem to be much more logical than that.

I just wonder about the numbers; I've taken probiotics with as many as 8 or 9 different bacterial strains, but from what I understand there are hundreds of different bacteria throughout the digestive system, which sort of makes me think that the FT is the only way to truly get a healthily balanced ecosystem down there. Then again I'm desperate for anything to get my bowels regular so I can get back on the field, so perhaps I'll start with the probiotic enema and see where I go from there!

Thank you all for your replies and sorry for the confusion,

-Jesse
Posted 11/11/2009 10:31 PM (GMT 0)
Yeah, I definitely didn't mean to shoot yogurt up there! ;)
Posted 11/12/2009 3:09 PM (GMT 0)
I am one week after the last of 6 FTs over a 7 day period. UC is maddening because we try so many things and cannot be sure which are working. I take 6 400mg Asacol a day and among my life's dreams now are to be off of the med. My issue has developed a cycle to it, almost annual, just as some others have expressed in in the "Seasonal" thread. My problems seem to flare end of summer and take until winter to get under control. I have been well and my doc let me reduce to 4 pills a day. Problems came back slowly so I decided to try to the Fecal Transplant. As I said, I did not have immediate results like some others, but today I wanted to take a picture of the poop. I wasn't sure the toilet would send it down. I haven't seen one like that since 2005 I am guessing. I am still gassy with mucous reporting, but that is on the decline. Was it the FT? Will it continue? I have no idea but I am optimistic.

On top of that, given Subdued's comment about the colon - skin connection I did some more reading and have gone back to being vigilant about Psyllium, and smarter eating - less caffeine, more water, less processed food - I also think nuts give me skin problems. Finally, I use Konsol Husk powder I buy in Wal-Mart before breakfast and dinner. I highly recommend the Psyllium for safely firming things up.

I also take the following supplements - fish oil, C, E, Zinc, Magnesium.
Posted 11/12/2009 6:49 PM (GMT 0)

IChaseFrisbees said...

Hi subdued, a very good point. I only meant to say that I'm not in a position to be partying all weekend after a week of classes, leaving me with some boring Fridays while many students are out getting hammered.

I just wonder about the numbers; I've taken probiotics with as many as 8 or 9 different bacterial strains, but from what I understand there are hundreds of different bacteria throughout the digestive system, which sort of makes me think that the FT is the only way to truly get a healthily balanced ecosystem down there. Then again I'm desperate for anything to get my bowels regular so I can get back on the field, so perhaps I'll start with the probiotic enema and see where I go from there!

-Jesse

Hi Jesse,

Yes. Fecal transplantation should be more effective than probiotics. Probiotics worked immediately for me. Plus, my BMs returned to how they were before I took all those antibiotics. Probiotics didn't worked nearly as well. I got another flare from having to take antibiotics again. It took a full month and a half for me to get into remission with probiotics and diet, and this was after already having done fecal transplantation two years earlier. But probiotics are still way better than nothing. At least I did get into remission. Some people never do.

I can't imagine partying all weekend. I remember studying every free second I got when I was attending university. Same with my daughter and her boyfriend. They are always working on their projects when I drop by. There is no way they would be able to get all of their work done if they were partying. When do you get your reading, homework, and studying done?
Posted 11/12/2009 7:57 PM (GMT 0)
Well, I suppose I am at a bit of a party school (UC Santa Cruz.) But the drinking here isn't really unique, it's pretty similar at most schools on a similar level (and some schools you'd be surprised at). Fridays and Saturdays are a given but then there's always at least one day during the week (wasted Wednesdays, margarita Mondays...) It's really quite insane. I wasn't the biggest drinker even before my intestines decided to implode, but here there's a party going on every day of the week somewhere.

Does anyone know how big a difference it makes doing it at home via enema vs with a doc through the tube down your nose? I'm not actually very informed about enemas, but I assume the can't coat everything that needs coating, right?

Thanks,

-Jesse
Posted 11/12/2009 9:53 PM (GMT 0)

IChaseFrisbees said...
Well, I suppose I am at a bit of a party school (UC Santa Cruz.) But the drinking here isn't really unique, it's pretty similar at most schools on a similar level (and some schools you'd be surprised at). Fridays and Saturdays are a given but then there's always at least one day during the week (wasted Wednesdays, margarita Mondays...) It's really quite insane. I wasn't the biggest drinker even before my intestines decided to implode, but here there's a party going on every day of the week somewhere.

Does anyone know how big a difference it makes doing it at home via enema vs with a doc through the tube down your nose? I'm not actually very informed about enemas, but I assume the can't coat everything that needs coating, right?

Thanks,

-Jesse

Huh? I thought I was in the drinking thread initially, then realized I was in the enema thread... but was wondering if you were funneling alcohol through a nose tube, lol.

I am really not concerned about anything but my large intestines. The closest and easiest entrance to that is through the rear.

Can you guys think of anything else a little thicker to use as the suspension other than water? They would be so much easier to hold if they were as viscous as the hydrocortisone enemas. How far fetched would it be to use a little psyllium into the water to thicken it up?
Posted 11/12/2009 10:27 PM (GMT 0)
Wow, this is a long and interesting conversation! I confess I know very little about fecal transplantation but the accounts given are certainly interesting.

One question for the more knowledgeable: it appears that many of those who have done this transplantation were battling with a lack of formed stool, diarrhea, etc. I am in the category that has less problem with that and more with an inflamed/bleeding lower colon. In general, I have noticed that some UC sufferers tend to have more of the digestive/diarrhea type symptoms whereas others have more of the mucous/blood inflammation symptoms (and some have both).

If a person is not struggling with the D/formed stool issues, would transplantation still be indicated?

Maybe I am off base but I thought I'd ask.
Posted 11/12/2009 11:31 PM (GMT 0)
LD...I am in the midst of completing the fecal transplant and I am not a UCer that had issues with the Big D. Most of my stool, unless I was extremely sick, was solid. I just always had a lot of blood and mucous b/c of inflammation in my lower colon. So no, FT is not just for those with D. Correct me someone if I am wrong, but I correlate D with higher inflammation. I visualize your higher colon being so inflamed that it is unable to absorb the fluids that ultimately leads to making our stool form. So if your stool is coming out formed, your colon was able to perform this action. I actually think it would work better for those with problems in the lower colon if that is where the problem lies b/c it is almost like topical treatment. Although some people say that they have tried this and it hasnt worked, I believe it has worked for me thus far b/c I got this disease as a result of antibiotic overuse. Now there is no way to prove that theory, I just know my body and I feel that is the issue.

4 Treatment Update:

Although I experienced a little set back the other day, I completed my fourth tx last night. Now I am not sure how this all works since it hasnt been studied much, but I havent been able to do my treatments consistently. I started last friday and we are coming up on friday again and I am still not done. Anyways....I did have pain and mucous after treatment #3, but then again i got a little over zealous about feeling good and drank a lot of caffeine and alcohol!!! So to report today after last night...things are good. I have had two BM today. Both formed and no site of blood or mucous. I even had some salad and pizza today ( I know...I just dont know when to stop pushing my luck!). I think I may try 6 or 7 tx since I got sick after three. I figure what is the harm if I have come this far? I dont want to have to start this all over in a few months if I can just add one or two more treatments now, right? Hope all are doing well.

Posted 11/13/2009 6:03 AM (GMT 0)
natty34 - that is a good point. I like your higher colon/diarrhea analysis and it make sense to me (in a layman's sort of way).

Well, if all these nasty drugs don't do the trick, I may be joining y'all in the wild world of FT. I have a 11-month-old boy who would happily donate to the cause!
Posted 11/13/2009 7:29 AM (GMT 0)

IChaseFrisbees said...
Well, I suppose I am at a bit of a party school (UC Santa Cruz.) But the drinking here isn't really unique, it's pretty similar at most schools on a similar level (and some schools you'd be surprised at). Fridays and Saturdays are a given but then there's always at least one day during the week (wasted Wednesdays, margarita Mondays...) It's really quite insane. I wasn't the biggest drinker even before my intestines decided to implode, but here there's a party going on every day of the week somewhere.

Does anyone know how big a difference it makes doing it at home via enema vs with a doc through the tube down your nose? I'm not actually very informed about enemas, but I assume the can't coat everything that needs coating, right?

Thanks,

-Jesse

Ah. When my daughter was deciding what schools she wanted to apply to, I asked her, "What about UC Santa Cruz?" She said, "No, that's a party school." I guess she was right.
Posted 11/13/2009 2:50 PM (GMT 0)
LD...One thing you want to keep in mind when choosing a donor is whether they have enough beneficial bacteria. For example, not choosing someone on a lot of antibiotics or maybe not even a child. My GI informed me that she didnt think children were a good donor that although they are free from disease, they probably do not have enough good/beneficial bacteria to be a candidate. Now I know doctors do not know everything, but that does make sense b/c we accumulate bacteria from the things we eat/are exposed to throughout our lives....Just a thought!
Posted 11/13/2009 4:01 PM (GMT 0)

natty34 said...
LD...One thing you want to keep in mind when choosing a donor is whether they have enough beneficial bacteria. For example, not choosing someone on a lot of antibiotics or maybe not even a child. My GI informed me that she didnt think children were a good donor that although they are free from disease, they probably do not have enough good/beneficial bacteria to be a candidate. Now I know doctors do not know everything, but that does make sense b/c we accumulate bacteria from the things we eat/are exposed to throughout our lives....Just a thought!

This is so unscientific, but I presume that is the reason that my immediate results were not similar to the others - my donor was my 2 1/2 yr old daughter.
Posted 11/13/2009 7:35 PM (GMT 0)
I've heard that too--that poo from young children does't yet have all the bacteria of adult poo. However, most people have taken antibiotics at least once before becoming an adult.

I used my granddaughter's feces. She was six months old at the time. I thought her poo was perfect for doing fecal transplantation. It was a gooey substance, because she was only drinking breast milk at the time. It didn't even look like BMs that people who eat regular food get. The poo mixed easily with a bit of warm water. The only difficulty was that there wasn't much of it.

It still worked instantly though, and I had to do the fecal transplantation only three times over three days for the bleeding to stop and to go completely into remission.
Posted 11/14/2009 1:42 AM (GMT 0)
i used Ethan's first when he was around 6 months old I think. I noticed a bigger affect using my wifes. I think he has better stool now at 13 months so I will definitely try him again too.
Posted 11/14/2009 4:39 PM (GMT 0)
I was wondering the same thing about a yogurt enema or using a mix with the protiotic VSL#3. It seems more sanitary than using fecal transplant. My husband's poo smell so bad, I would be hesitant to use it. LOL....Jesse, I don't want to worry you but many of us had the diagnosis of IBS years before we were diagnosed with inflammatory bowel disease. I think you are wise to look into probiotic use. VSL #3 is supposed to be the most potent and the best. YOu can get it online or your doc to order a prescription for you. It may prevent and cure you at the same time.
Posted 11/14/2009 5:43 PM (GMT 0)
Hey, for those whose poop cured someone, they should consider selling it. They could say their s--- was worth its weight in gold! Now, how many people can say that??? DrA, the story about the flying poop was hysterical. Thanks for sharing that. I needed a good laugh today.
Posted 11/14/2009 6:30 PM (GMT 0)

jeanneac said...
I was wondering the same thing about a yogurt enema or using a mix with the protiotic VSL#3. It seems more sanitary than using fecal transplant. My husband's poo smell so bad, I would be hesitant to use it. LOL....Jesse, I don't want to worry you but many of us had the diagnosis of IBS years before we were diagnosed with inflammatory bowel disease. I think you are wise to look into probiotic use. VSL #3 is supposed to be the most potent and the best. YOu can get it online or your doc to order a prescription for you. It may prevent and cure you at the same time.

It may be more sanitary, but you'll never get anywhere close to bacteria count or variety.
Posted 11/14/2009 10:44 PM (GMT 0)
Oh no...I did already have a colonoscopy with fine results, no signs of inflammation or anything else, I hope it stays that way!

I also agree with that point about variety, it seems like all the probiotics in the world won't do much if it's only 3 or 4 types, even if you do take them straight to the source. At least, that's why I think I haven't seen any improvements while taking them.
Posted 11/15/2009 12:25 AM (GMT 0)
Good for anyone trying fecal flora infusion the ultimate probiotic. Believe me doing fecal infusion is much better than UC.
I have had UC for 29 years now and my son had his colon ripped out in 2000,compared to colectomy this is a piece of cake.
The reason this works is the bacterial diversity, and the fact that it is made up of human bacteria strains, most probiotics or yogurt are not of human strains. It may not work on everyone for reasons unknown to me, perhaps all UC is not due to lack of a certain bacteria or the presence of a pathogen,or the infusion just does not take well to a different host. Between fecal infusion and possibly worms they may be the best alternative approaches for UC to date.
Young infants under say 6 months or even a year,would have low diversity,and the infant strains which may not adapt well to adults,the older the child doner is, the better. But don't let that stop you from using infant poo, take what you can get.
One thing you can count on is that Dr. Borody knows what he is doing.
Old Mike
Posted 11/17/2009 8:05 AM (GMT 0)
Hey everybody, I don't want to sound needy (which I am) but I am living rather vicariously through the brave folks around here. Any updates?

I'm anxiously looking forward to trying this, hopefully as soon as I'm out of school for winter break.

-Jesse
Posted 11/18/2009 4:58 AM (GMT 0)
hi everyone i am new , but i have a few things i have been looking into, my body keeps on wasting away from 195 down to 135pounds and i have ankylosing spondylitis for 8years and disabled. AS is caused supposively buy a bacteria out of balance with klebsiella being the culprit , i did a stool test and my lacto &bifido bacteria came back at 0 same with parasites and yeast ,but my klebsiella is 4+ ,iknow stool test are not 100% accurate but has anyone done a before and after hpi and did a stool test for results on the inhabitants in there intestines as a tool, i feel i got my problem started when i had strep throut and had antibiotics and 3 months later my autoimmune disease began , has any dealt with klebsiella i have head it can be a problem with uc or more likely crohns
Thank you joe
Posted 11/18/2009 6:59 AM (GMT 0)
Hmmmmm, I'm also nursing a 6 month old little girl. I have been on antibiotics while nursing her but only very minute amounts of that made it through. Perhaps I'll try this. I'm willing to do just about anything within reason and while the whole thought of this is a slight turn off, using my daughters feces somehow makes me feel better about it. Hell, I grew her. Why not borrow some poop? She won't be missing it : ) If I decide to try it, I'll start another thread on the progress. Thanks for trying this LuckyLindy, you're a poop pioneer!
Posted 11/18/2009 7:33 AM (GMT 0)
Update: It's been over 5 weeks for me, and I'm still doing well. I've noticed that I cannot go hog wild and eat entirely normal, but I now eat a bowl of cereal every day and other carbs that I could never touch. I've had 2 or 3 days with D, but no blood. Definitely worth every moment for me, and I plan to supplement with a full 5 day treatment at some point in the future.
Posted 11/18/2009 11:16 AM (GMT 0)
LuckyLindy...Good to know that it's going well -- and that too with just the one infusion. The full 5 day treatment sounds like a good idea.
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