HealingWell
Search Close Search
☰

Fecal Transplant - I took the plunge! PART I

Support Forums
>
Ulcerative Colitis
✚ New Topic locked
1 2 34 5
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 11/6/2009 4:14 AM (GMT 0)
I did not talk to any of my current Doctors about it. I read about it on the web a few years ago, and have followed the research since then. I did talk to one GI specialist a few years ago and he said he had no interest in doing treatments other than surgery or prescription drugs (he was the one who suggested I get my colon removed).

But to be honest, most of the doctors I've spoken with have very little knowledge of research done outside of pharmaceuticals, same with alternative treatments. For example, I've now told 4 Doctors that my symptoms were diet dependent (carbs in particular), and I received responses from "it's all in your head" (word for word) to "if you're having problems with carbs, you should try eating more potatoes and rice". None of the 4 responses showed even minor understanding of nutrition/diet.

MDs aren't trained in nutrition and alternative treatments (none taught in school), and typically don't have time to keep abreast in these areas. They are fantastic at diagnosing and providing the most appropriate prescription drugs or surgery, but if there's very few doctors who will consider other treatments, even if they show promise.
Posted 11/6/2009 8:30 AM (GMT 0)
Thank you guys for the details on how to do it. I don't know how I will convince my son, but I have to try it. The inflammation is very high right now, so I think I will wait, (he tried the Vitamin E enema and could not hold it at all, so I am afraid that all the effort is going to go to waste and then he won't be willing to do it again. I have to do anything so he doesn't have to go on another round of prednisone. A mom of a former UC sufferer, (she has a JPouch now), told me her daughter got Avascular Necrosis after only one round of it. Incidentally, she only found out through an MRI as it was not showing in the Xray. I think the word needs to be spread out of how dangerous this drug really is for some people, in case people one is offered that route by doctors.
Posted 11/6/2009 11:39 AM (GMT 0)
guila...enemas are often tricky on the first go, so your son shouldn't give up on the vitamin e enema after only trying it once.

If you want him to consider trying fecal transplant maybe it might be better to get him to read the posts on the forum (and other information that's available online) about this, so that he knows what it's all about.

And even better, get him to join the forum so that he can post questions and be more involved himself. He might feel more eager about searching out these solutions if he is doing it himself.
Posted 11/6/2009 8:18 PM (GMT 0)
Rio, I presented the information and the site already and he read about it. He even sent an email to Borody, the doctor in Australia who did the experiment in 2004, but he hasn't heard from him yet. (By the way, he also contacted Joel Weinstock, the doctor doing the helminthic therapy research and he says his procedure hasn't been approved by the FDA in the U.S and the ongoing trials here are for MS), and suggested going to Ovamed, which is in Thailand. I also introduced him to this forum, which I believe it is a great thing. So you say to keep trying the vitamin E? I'll let him know.
Posted 11/7/2009 5:58 PM (GMT 0)
I thought I would post today since I took the plunge last night and attempted the fecal transplant. It definitely was not the most pleasant thing to do, but for those of you that have been deathly ill from this lovely condition should know that you would try anything not to feel like that again. I am currently mildly flaring, so holding it was not an issue. I completed my first of a five day adventure about 9 pm last night and held it until 7:30 this AM. I did not see any blood this morning, which i have had for the last week, but there was definitely liquid stool at the beginning of my BM. I will keep you posted on how things go. Bottoms up smilewinkgrin
Posted 11/7/2009 6:03 PM (GMT 0)
Natty34 - please keep up posted, I hope it works as well for you as it did for me.
Posted 11/7/2009 6:47 PM (GMT 0)

inspectorgadget said...
Today was the 6th treatment in 7 days. On monday skin problems resurfaced so I guess I cannot connect the skin chemistry improvement to the FT. On most occasions I was not able to go more than 3 hours. Never did the treatment immediately make things better for me as it did for others. I remain optimistic that this will help long term eliminate my need for Asacol but my optimism is tempered by my less impressive results.

Hi Inspector Gadget,

I've been told the skin and colon are related.
Posted 11/8/2009 11:19 PM (GMT 0)
2 Day Update: Well I have to report that so far so good. I have completed two days of a five day trial. I have had one bowel movement a day that has been solid with no site of blood or mucous, which I had been experiencing daily for a few months prior to this trial. I ate really bad yesterday with no ill effects, which I also find a positive sign. I can only hope things will start looking up for me. For those that read this and have considered trying it, I would recommend it despite the "icky" factor. I have never been so grossed out, but for the simple fact that i could eat wings and pizza with no pain was an awesome feeling =) Even if this does not turn out to be a life long solution, it is reassuring to know that I have found a tx in which i can get instant relief.
Posted 11/8/2009 11:45 PM (GMT 0)

subdued said...

inspectorgadget said...
Today was the 6th treatment in 7 days. On monday skin problems resurfaced so I guess I cannot connect the skin chemistry improvement to the FT. On most occasions I was not able to go more than 3 hours. Never did the treatment immediately make things better for me as it did for others. I remain optimistic that this will help long term eliminate my need for Asacol but my optimism is tempered by my less impressive results.

Hi Inspector Gadget,

I've been told the skin and colon are related.


Clearly. Acne is a published side effect of Asacol. If I stop taking it my skin clears up immediately. Unfortunately 3 weeks later I don't have zits but then comes the sh!ts.
Posted 11/9/2009 12:57 AM (GMT 0)
Told the wife last night she needed to poo in a trash can so I could collect it to try this again, lol. I gave her a taste of what I go through sometimes. She did leave me WAY to much poo to work with although I only requested a small amount. Used hers today and was able to hold several hours, will try babies again tomorrow. Good thing about having a cold is I can't smell anything right now, lol.

I did get a small piece stuck in the tip of the bottle and it wouldn't squeeze anymore out, lol. I took it out and was trying to squeeze that little bit out of the tip onto some tissue paper. The thing blew out across the room and landed on the door, rofl. Although it was just a really tiny piece I still was laughing. Sometimes you just have to laugh at the situation.
Posted 11/9/2009 1:44 AM (GMT 0)
That's crazy Dr.A...the things we do to get into remission. And you folks who are using your wives as fecal donors are definitely putting those wedding vows to the test...Good luck with it!
Posted 11/9/2009 4:35 AM (GMT 0)
My wife was really grossed out until she saw it gave me relief. So now she's always asking "Honey, when can I give you more?" She is really happy to be able to help ... I think UC makes us all feel helpless.
Posted 11/10/2009 3:19 PM (GMT 0)
Its strange how it affects the odor.
Posted 11/10/2009 3:46 PM (GMT 0)
Dr A, your description of the clogged bottle and then the explosion across the room was hysterical!!! Thanks for making me laugh!
And I imagine there are few places you could share this story! That's one thing I appreciate about this forum.

I am really intrigued by the success all you folks are having. Keep the reports coming!
Posted 11/10/2009 10:53 PM (GMT 0)
3 Treatment Update:  I hope everyone doesnt mind I am posting frequent updates on my experience with this treatment method. I know it has always been helpful to me to read about everyone else's trials and their experiences. Please feel free to tell me you've had enough and I will gladly stop =)

 

Anyhow...I started my treatment last friday and since then I have completed three treatments. I will have to say that things are looking positive considering I have yet to see any blood or mucous and I am having no more than 2 solid BMs a day (which was always normal for me prior to UC). I have been able to eat outside a very restrictive diet with little to no consequence when before the smallest deviation made my stomach hurt. I am practicing a diet high in fiber, so I am not sure if some of the gas and bloating is from the transplant or the extra fiber I have been eating. It has been so long since I felt normal, that i really dont know if what I feel currently would be something someone without the disease would experience or if it is only b/c I have UC. I plan to do two more treatments and then see how things go. All I know is that prior to trying this, I was bleeding and if i wasnt bleeding, I definitely had lots of mucous. Plus I wouldnt dare eat "bad" unless i was asking for trouble. Everything changed after trying the first treatment.

 

I too also have to laugh at Dr. A.....I too was having the hardest time with the enema bottle clogging and it would take me forever to administer a complete bottle full b/c it kept getting clogged. I kept toothpicks next too me and let me tell you, it made a mess. But after two treatments and being tired of cleaning up poo off my floor, I found a way around it. I did two things...I used a small strainer and I removed the plastic piece inside the enema bottle so that there was less of a chance for anything to get stuck. Both ideas led to a very successful and clean "transplant" last night. I am happy I tried this, even if it only leads to a short amount of a relief...I just wish more people knew about it and would be willing to try it b/c this disease can be so debilitating. Its empowering to know that healing is in your own hands and not your doctors.

Posted 11/11/2009 12:27 AM (GMT 0)
natty 34, please, please, keep posting. I am extremely interested. Even if it does not work. I am sooo happy for you!
Posted 11/11/2009 1:05 AM (GMT 0)
Yeah, I haven't had any blood since Sat, which is when I did this. Alot of gas Sat night and sunday.. sorta like taking probiotics for the first time. More normal day today. Didn't have to get up at all during night last night. May change tomorrow, but we shall see. I'll probably get a small strainer from walmart this week to. Good idea.
Posted 11/11/2009 2:08 AM (GMT 0)
natty...I'm not sure if you already mentioned this, but just wondering, who are you using as a donor?
And hope it goes well.
Posted 11/11/2009 2:40 AM (GMT 0)
1 Month update for me ... during the past month I've had 4 days with D, no blood, no mucus, even though I have not been eating well. The 4 days with D were right around Halloween, when I literally had over a pound of candy each day (the rest of my family also had D, so it may not be UC related).

If problems creep back up, I'm DEFINITELY going to try this again, and definitely going to do a more tradition 4-5 implant schedule. For this 1 month period, I've felt better than I have in the past 6 years.
Posted 11/11/2009 10:53 AM (GMT 0)
Good to know that it's still going well LuckyLindy. Once I find the right donor then I'll take the plunge as well, as it's definitely worth a try.
Posted 11/11/2009 2:56 PM (GMT 0)
Rio....My donor is my husband. I was able to get our doc to order the appropriate labs to test his stool and blood prior to attempting this. Some people dont even test the stool if they trust their donor, but i didnt take a chance since I really dont need anything else wrong with me. Anyways...I will have to report that I did have some "UC" pain last night and a little mucous this morning (maybe i spoke too soon!) I kinda over did it last night and had caffeine and alcohol, so im not sure if that is the reason. I still have two more tx to try if not a few more just to make sure, so I am still hoping.
Posted 11/11/2009 7:32 PM (GMT 0)
Hi folks, this is my first post here so feel free to correct any mistakes I make. My name is Jesse, I don't have UC, just a case of IBS according to the docs. I've had all sorts of tests run and they all come back clean except for a stool test for bacteria, which told me that I have 0 of the predominant species. Now the scale was 0-4, so I don't know if 0 means literally NONE, but that seems now to be the only likely cause of my IBS and the only valid avenue of pursuit I have left.

I'm very fortunate in that I don't have UC or Crohn's, and people have asked me why with a somewhat minor in comparison illness like IBS I would consider something like a fecal transplant, and the simple answer is I'm in my second year of college, which is sort of supposed to be the final frontier of goofing off and getting away with it before joining the working world and I'm not enjoying any of it really; I had to quit playing sports because I couldn't make the commitment to practice and my social life has taken a big hit since this developed (almost 2 years ago.)

Not sure how much background you need so I apologize if I'm rambling. Anyway, my sister is in medical school and after I told her about this she read up on it a bit and thinks it's a good idea. She's also the only family member I have who I think could be a valid donor haha, my parents have similar problems to my own. My question is does anyone know how to find a practitioner or how to broach a subject like this to a normal GI guy? I'm somewhat hesitant to try this on my own because it's true that my condition isn't totally debilitating and I would hate to run the risk of getting something worse.

I also want to thank you guys for the updates, luckylindy, natty and others; I was beginning to feel like nothing could get me back to the way I was, but reading your posts have inspired some hope in me that I can once again return to pooing like a champion!

Thanks so much for any help and for the morale boosters,

-Jesse.

P.S. I am located in Santa Cruz, California, if by some chance someone had any information about practitioners in my state, but if not travel is no problem (after going through a colonoscopy at the age of 19 I'll be darned if I'm gonna let a plane ride stand in my way!)
Posted 11/11/2009 7:39 PM (GMT 0)
Hi and welcome.
First, have you tried taking probiotic supplements, or making your own probiotic enema? That's a pretty easy thing to try first!;)
Second, there is an IBS forum on HealingWell that you might want to check out. I mean, we're not going to kick you off or anything, but you might find some good info over there soon.
Good luck!
Posted 11/11/2009 8:41 PM (GMT 0)
Hi there and thanks for the welcome! I have taken probiotics for a while now with no improvement unfortunately. A yogurt enema, now I hadn't considered that at all. My concern about that is the lack of bacterial diversity; aren't there only a few types of bacteria in yogurt? Perhaps I'm just hoping too much for a miracle, but I would like to minimize the amount of times I have to shoot stuff up my butt haha. Do you think the yogurt is drastically less effective than the FT?

Thanks,

-Jesse
Posted 11/11/2009 8:59 PM (GMT 0)

IChaseFrisbees said...
I'm very fortunate in that I don't have UC or Crohn's, and people have asked me why with a somewhat minor in comparison illness like IBS I would consider something like a fecal transplant, and the simple answer is I'm in my second year of college, which is sort of supposed to be the final frontier of goofing off and getting away with it before joining the working world and I'm not enjoying any of it really; I had to quit playing sports because I couldn't make the commitment to practice and my social life has taken a big hit since this developed (almost 2 years ago.)

...

My question is does anyone know how to find a practitioner or how to broach a subject like this to a normal GI guy? I'm somewhat hesitant to try this on my own because it's true that my condition isn't totally debilitating and I would hate to run the risk of getting something worse.

...

P.S. I am located in Santa Cruz, California,

I agree. If your quality of life is being affected and if your problem is due to an imbalance or lack of fecal bacteria, then fecal transplantation is worth a try.

If your donor is healthy, then I doubt very much you could get something worse.

I live in Silicon Valley. I don't know any GIs in the area that are going to acknowledge fecal transplantation. They simply don't know enough about it to recommend it.

Try finding a suitable donor. In the meantime, take probiotics.

My daughter is a junior at SJSU. She was just accepted into the 3D animation and illustration program. She and her colleagues work very hard so they can get jobs at companies such as Pixar, Disney, ...

When you get out of college, you will be competing with students from all universities, not just the ones that goofed off before joining the "working world." Jobs are not easy to come by anymore. These days we are competing not just with people in the United States but also with people who live in other countries. In my career (Web development), I'm always taking classes from local community colleges just to stay abreast of my field, and I graduated back in 1990! You would think I would have enough education by now. It doesn't always work that way.
✚ New Topic locked
12345