Bacteriotherapy Summary Post
The protocols in this post have been updated and expanded in my e-book, FMT Coach: A Guide to Fecal Microbiota Transplantation.
Still feeling good. I had a scare this week: I began to feel what I thought were UC symptoms recurring, (achy body, gurgly gut) so I took another infusion. No reason not to be safe. Then 24 hours later, I was laid up—body aches, weak, and D. Oh no. Flare up. S**t, I thought. Turns out, it was a real, live stomach flu—my wife had the same thing just a few days ago, and today I am on the mend. Boy, I was scared. Stupid stomach virus mimicking UC symptoms. Thanks for all your comments and questions. I hope to answer most of them in this post; however, this post will be colitis-specific because that’s what I have. That’s what I treated, and that’s what I know best. For those with Crohn’s, I don’t know how this treatment effects your condition. I will say this upfront: Do this in partnership with your doctor. That is, don’t go off and do this without a doctors supervision. This is not medical advice, rather a recounting of my story. I hope that it will help you.
4/1/11 Addition: Slate Magazine did an article on Bacteriotherapy. You can read that article here.
This post is long. You may want to take it in pieces.
P.S.–The amazon links in this post are affiliate links, which means that if you click through my site through one of the below links, I am credited a small percentage of the sale. I use that to buy books that in turn feed the content of this blog. Some day I’d love to generate enough through those links to buy copies of Breaking the Vicious Cycle to give away for free to those starting the SCD.
So, click through those links if you’re going to buy any of the supplies listed below and support this blog.
The Theory
If changing the bacterial population of the colon decreases inflammation, and improves colitis, then colitis is at least in part pathogenic; an altered bacterial community sets off a cascade reaction which leads to inflammation and damage of the colon. Probiotics, communally oriented bacteria, such as Lactobacillius and certain Bifidio Bacteria have been shown to improve inflammation in the colon; however, those bacteria are transient and are not even in the top 40 most abundant species in the healthy human gut. It follows, then, that the best probiotic would be a complete mix of bacteria from a healthy, gut-normal person.
Antibiotics have also been shown effective in some cases. Therefore, the combination of the two make sense for treatment. Kill the ‘damaged’ flora; replace it with a complete, healthy flora.
Talking with Your Doctor
I wrote a post on talking with your doctor back in July, 2010. I still stand by this post. Two years of meeting with my doctor, using the principles I outlined in July form the foundation, the basis for a good trust relationship; it is this relationship, and the trust I built with my doctor that allowed us to even enter a productive dialogue about a non-conventional therapy like Bacteriotherapy. If you don’t have that kind of relationship with your doctor, then chances are you won’t get far enough in the conversation to need the tools I will outline below. Start by building a trust relationship. It also helps if you have an awesome doctor.
Before I even considered talking with my doctor about bacteriotherapy, I made sure to do credible research. Not research that is credible for the lay person (no blogs, no website language), but peer-review research. I searched the scientific literature for studies, case studies, and articles that are peer-reviewed; articles that he was most likely to take seriously. Next I read them. No really, you’d be surprised at how many people find a study and just read the abstract, or skim the intro and conclusions. I read everything. Then I summarized it in an executive summary 2-page briefing document for him.
This accomplished a few things: (1) it made sure that I remembered what was in the papers. It ensured that I knew more about Bacteriotherapy than he did. It made sure I could answer his questions—on the fly; (2) It gave him something tangible to hold, to read; (3) It showed him that I was serious, and that I had a plan; I knew the risks (this is important). From there it was easy. I entered the conversation with a subordinate posture, with respect: you, my doctor, are the expert. But I was clear what I wanted to do. I asked for him to partner with me. Notice I didn’t ask for permission, but I asked for his partnership. I needed him, and I made him an integral part of the process. This is out of respect (I love my doctor), and out of necessity.
The conversation went something like this:
[Usual small talk and greeting] “Dr [Name], I came in to talk with you about starting a new treatment. It’s a little off the beaten path, but I’d like to run it by you.”
“Ok, Matt, fine. But I thought your diet was doing you pretty well?”
“It is. It is, but it’s only gotten me about 80% of the way. I still have colitis. My goal is to have a clean scope one day.”
[Smiles] “Ok, what do you want to talk about?”
“Have you heard of Bacteriotherapy? I’d like to try it. I’ve outlined the procedure I’d like to use here (hand him the 2-page summary), and I’d like you to partner with me in a 17 day trial. The risks are minimal compared with the drugs we’ve tried.”
[Reads my summary with a concerned look] “I’ve heard of this, but it’s pretty far off the beaten path.”
“I know, but if you look at the pilot and case studies (hand him the three most important peer-review articles, with important points highlighted for him), almost 100% of people with colitis, idiopathic or otherwise, responded favorably. Some have been in continued remission for 5, 10, and even 13 years. I know they’re just pilot studies and case studies, but that success kind of rate should turn anyone’s head. It turned mine. In the summary I put together for you, I’ve outlined the protocol, and donor screening procedure. I meshed this together from what I thought were the best practices I found in the literature. What do you think? Do we need to change anything? What would you change?”
“These tests are normal stool cultures, and blood tests. Who would you use as a donor? Would they come to me for these tests?…These are serious antibiotics.”
[Snip] (Here we discussed donors, screening, and I brainstormed with him which antibiotics and antifungals we should use. His input here was very helpful.)
“…So basically you just want my blessing and prescriptions for the antibiotics and prep?”
“Yes. That and your partnership; it means the world to me.”
“That’s fine as long as you know the risks. (he explained the risks to me here)…As long as you know the risks…”
As he was writing the scripts, we had a short conversation about how he believes classical medicine doesn’t know everything, and if we can learn something here, then great. He also mused with me about the professional risks to him if something were to go wrong. I sympathized with him in the conversation, and thanked him for being willing to go out on a limb for me—it means a lot. And it does.
“OK, Matt. Good luck.”
“I hope I won’t need it. Thanks.”
Finding a Donor
Finding a donor was simple for me. I saw the conversation with my doctor as the biggest hurdle. From there, everything else seemed less stressful. I used a few criteria:
- Good health: No acute or chronic diseases, and no family history of them. I wanted someone with a healthy diet, low alcohol consumption, and someone who had not often used antibiotics. It was important that the person had not used antibiotics within the past three months. This ensured that they had a stable flora.
- A donor screening form: It screened all the variables I felt were important (besides blood and stool bugs): Disease, breast-fed as a child, antibiotic use, family disease history, bowel and health habits, eating habits, alcohol and sugar consumption, and of course the Bristol Stool Chart.
- Proximity and reliability: I wanted someone who was close, because you want the sample to be as fresh as possible. I wanted someone who was responsible, and who wouldn’t forget, because I needed one per day for 10 days, and then I would need samples periodically throughout the coming months.
From there, I was actually too embarrassed to ask anyone, so my wife did it for me. She asked a close friend of mine. I’m thankful she did so, because I don’t know if I would have had the guts to ask a friend to poop in a cup for me for two weeks. Thanks my love!
I didn’t ask my wife to be my donor, because she has psoriasis, which may have a link to the gut and gut bacteria. There’s no reason not to be picky here. She also does a lot for me. Since I got really sick almost two years ago, she has had to shoulder a much larger burden than she should have to otherwise. To ask her for yet another thing was too much for me. So it was a marital decision as well as a medical decision.
The literature says that a close family member is the best choice for a donor. I think, Yes and no. On the one hand, a close family member will likely share many bacteria in common with you, and this will decrease the chance of disease, or pathogen transmission. They are also, if they are in your house, awfully convenient. But those are the only two reasons I can think of to make them ideal donors.
On the other hand, a close family member, especially a blood relative like your mother or brother, may share some of the community of pathogenic bacteria that are making you sick. Indeed, I can envision a scenario where someone’s mother has a similar bacterial community to their sick child, but lacks the genetic susceptibility that her child has. In this case, bacteriotherapy may likely fail, and thus, a healthy non-family member, properly screened, would be ideal. So, if there is no reason not to be picky, and if we are avoiding as many risks as possible (because of all the unknowns of colitis), then a healthy non-family member is the best choice. That’s ultimately how I chose.
The Procedure I Used
Antibiotic Therapy (14-28 days) Colloidal Silver 500ppm – 8 oz – Liquid, 4 Tbs./day, for 7 days Klaire Labs – Interfase Enzyme Supplement – 120 Veg Caps
, 14 days (8 pills/day in divided doses on an empty stomach). These enzymes, on an empty stomach, help to dissolve bacterial biofilms. Biofilms are a method certain bacteria can use to survive antibiotics. Plaque on your teeth is a biofilm. After those were finished…I began: Vancomycin, 500 mg, Bid (2x/day, 7 days) Flagyl, 500mg, Bid (2x/day, 7 days)
Human Probiotic Therapy (1 infusion/day, until all symptoms subside) (Actually, here, if I had it to do over again, I would do 3-5 infusions beyond the point at which my symptoms disappeared.)
My supplies:
- Disposable Enema Bag
- Fleet Adult Enema, Ready To Use, Twin Pack, 9 Oz
- Metal Kitchen Strainer
- Two plastic food containers (air tight) for collecting samples
- Hamilton Beach 51101B Single-Serve Blender with Travel Lid, Black
- Small glass bowl
- ½ cup measuring cup
- Funnel
- Metal serving spoon, or soup spoon
- 1-2 gallons of Distilled Water
- Gloves
- Several plastic grocery bags
Optional:
Here’s the procedure I used to do the infusions.
- Gather sample from donor in a plastic, air tight container. Be sure to use the sample as soon as possible. I tried to use it within an hour, but it should be used within 4-6 hours. Donor can store the sample in the refrigerator.
- Rinse glass bowl, funnel, blender, spoon, enema bag hose, and Fleet’s bottle with distilled water. This removes disinfection residuals from tap water.
- Assemble the enema device:
- Empty the Fleet’s enema bottle, rinse with tap water, wipe lube from the tip.
- Cut a 12-14” length of hose from the end of a disposable enema bag, keeping the lubed end for use. Discard the rest.
- Attach the newly cut length of hose to the Fleet’s enema cap. Be sure you have wiped the lube from the Fleet’s cap. Push it on firmly; you don’t want it to come off!
- Add 2-300g of the sample (about 1-1.25 cups) with probiotics and ½ cup water to the blender. Blend until smooth.
- Add distilled water until the sample is the consistency of thick paint. About 2/3 cups total distilled water. Use too much water, and you may not be able to hold the infusion for the desired 6-8 hours.
- Pour sample into the strainer and use the spoon to push the sample through the strainer into the glass bowl.
- Using the funnel, pour strained sample into the Fleet’s enema bottle.
- Secure the cap and hose (now one piece, since you’ve already assembled it) to the bottle.
- Rinse the equipment thoroughly with hot tap water. Boil to sanitize for next use. Do not use bleach. Do not boil the Fleet’s Bottle and Enema Hose; instead, rinse thoroughly. I can get about 3-4 uses out of one fleet’s bottle and cut piece of hose.
- Take the infusion as an enema as soon as possible from preparation.
- After the infusion, lie prone with your hips elevated for 30-90 minutes (or until you are sure you can hold the enema for 6-8 hours; you will need time for your intestines to absorb the water.)
- Hold the infusion for minimum 6-8 hours.
- Repeat daily until your symptoms are gone.
Maintenance Therapy: Some people may not need maintenance therapy; however, my gut feeling is that most people will need at least some maintenance. Whether that be 1x/month, or more, consider doing maintenance infusions—JIK. My (ideal) maintenance schedule: 1 infusion/week for 1 month. 2 infusions the following month. 1 infusion/month for 9-12 months. This schedule is ideal, and maintenance may be needed more often in the beginning. For example, I felt as though symptoms were returning four days after the end of my ten infusions, so I took another. I think this therapy favors the prudent.
Onward to Health.
Some References to Get You Started:
I found the Perfect Health Diet Series on Bowel Disease helpful. There are lots more references there too. Here is their post on fecal transplants.
- Borody, Thomas J, et al. 2004. Bacteriotherapy Using Fecal Flora: Toying With Human Motions. J Clin Gastroenterol • Volume 38, Number 6.
- Rohlke, Faith, et al. 2010. Fecal Flora Reconstitution for Recurrent Clostridium difficile Infection: Results and Methodology. J Clin Gastroenterol., Volume 44, Number 8, September.
- Grehan, Martin J. et al. 2010. Durable Alteration of the Colonic Microbiota by the Administration of Donor Fecal Flora. J Clin Gastroenterol. Volume 44, Number 8, September.
- Floch, Martin H. 2010. Fecal Bacteriotherapy, Fecal Transplant, and the Microbiome. J Clin Gastroenterol Volume 44, Number 8, September.
- Dethlefsen, Les & David A. Relman. Incomplete recovery and individualized responses of the human distal gut microbiota to repeated antibiotic perturbation. PNAS Early Addition. www.pnas.org/cgi/doi/10.1073/pnas.1000087107
- Borody, Thomas J. et al. 2003. Treatment of Ulcerative Colitis Using Fecal Bacteriotherapy. J. Clin. Gastroenterol. Volume 37, Number 1, pg. 42-47.
Tagged with: Bacteriotherapy • procedures • treatments
Filed under: Bacteriotherapy • Treatments
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Matt,
Firstly great post! That obviously took a lot of effort.
I notice that the amazon links don’t seem to be working.
Also I wondered if you could let me know how you got hold of the study papers. I searched for them but can only find extracts. Have you subscribed to the journal to be able to get them?
Thanks for all your hard work.
Mike
Mike,
I’ll fix the links. Thanks for the heads up. The papers, you have to pay for. I have subscriptions to peer-review journals through work. If you have a university library nearby, you can often get a cheap or free membership–that would allow you access. Often universities will give cheap memberships to their alumni too. That’s the best I can to, since I don’t have rights to re-distribute these. I’m sorry.
Jennifer,
I’m sorry to hear that. So when you refused Remicade, your Dr. sent you away? That doesn’t seem right. There are alternatives to Remicade. Keep searching until you find a good Dr. It may take a while, but they’re out there.
Have you tried the SCD? or some of the protocols in Listen to Your Gut?
Matt,
Thanks so much for your protocol information. I am very interested in trying infusions next. My only option with my doctor right now is remicade which I have refused and was then asked to find a new doctor. The new doc is not open to anything non-drug related so that is very discouraging. The drugs he prescribed are $750/month my cost as insurance will not cover them. So then I am left with prednisone again which has not helped in the past.
Infusions seem to be the next logical option for me as I cannot afford these drugs that are less than 50% effective in remission.
Thanks again so much for the info I hope that your recovery is long lived. Tu have given me a glimmer of hope this morning!
Jennifer
All,
I fixed the links in the post. Thanks Mike, for letting me know.
–matt
I did do Scd for a while. Went through “detox” phase etc. but my results were never even close to your 80%. Some of my urgency symptoms were even increased on the diet and I would never narrow down the food trigger.
Yes after I refused remicade it was suggested that another doctor may be more helpful as I asked for too many non-prescription choices. I asked about Scd and was told food has no direct correlation to UC. When I asked about LDN after presenting Penn state study he laughed at me and told me that it doesn’t work and that he would never agree to it. I asked for ly stool to be sampled for c.diff or any other bacteria I may have and was told that the 2 colonoscopies I’ve had new conclusive enough to diagnos UC.
My next step is to either pay cash to see a natropathic doctor and try LDN or do infusions. I can’t sit around anymore waiting on doctors that only seem to want to make a percentage of my medication or treatment. Tired of medicine right now.
Jenn
Great post Matt, thanks!
I sooo hope this works out for you. God knows you deserve it after the herculean effort you’ve put into it. And if it does, I’ll find some guts, swallow my pride, and try your protocol. Speaking of which…So maybe I’m a more visual learner because some of your steps are still not clear in my head…And I’m wondering.. when you have the time of course…If you could make all of us a youtube style video that illustrates the steps of the protocol. Like preparing the enema and the sample etc. Obviously some parts would have to be left out:) But I think it would be really helpful to see. Just a thought. In any case, thanks so much again for writing down your protocol and providing all the links and references. Plenty of info to chew on!
Matt, How why did you decide on those two antibiotics compared to the three you discussed in your summary/the Borody study? Also, did you take them consecutively or simultaneously?
Thanks for this post it was incredibly useful!! My new favorite blog!
Mike,
They have different antibiotics in Australia. My Dr. and I looked at what they were using, and he thought that the two I took would provide the same coverage. I took them concurrently.
Pat,
I thought about a video, but to be honest: I have zero video editing skills, and it seems like a lot of time. Maybe if there are enough requests…but for now, I’m going to put that off for a while. I do understand the visual–I’m a visual learner too.
Jennifer,
Rotten luck. Just rotten. The way you’ve written it sounds like you haven’t found a Doctor who will PARTNER with you. It’s to our (the patient’s) detriment that there aren’t more doctors out there that see treating IBD as a partnership with the patient. Keep trying. They’re out there. That said, I would recommend you go to an ND anyway, if you can swing it. Mine is great, and I would recommend it to everyone. I think you’ll find partnership with an ND easy to find and refreshing.
Matt, how are you doing? Quick question – what was the reason that you used the tubing from the disposable enema rather than just the fleet bottle?
Thanks,
Mike
Mike,
I am doing well. Still no symptoms. Thanks for the reminder; I’ll write up a short update this weekend.
I used the enema tube to make sure I could implant the bacteria above the anus, well into the colon. You have to be careful with this, but I could usually get about 5-6″ of tube in there. Stop if there is any pain or discomfort at all, you don’t want to damage anything in there, you know?
Matt
Hi Matt,
May I ask if you continued with the SCD diet after the infusion as I’m considering this treatment for myself and am trying to find out what people that have followed this approach did afterwards to help maintain remission?
Thanks in advance for your help
Jane
I did continue with the SCD. From what I know, people who have done FTT and remained in Remission have taken good care of their health afterward. To me, this meant maintaining what helped my UC before FTT. I may one day go off the SCD, but not until I’ve been symptom-free for 2 years or so. Does that make sense? So I’d plan on maintaining the natural treatments that work for you now, even after FTT.
–matt
Thanks Matt.
It makes complete sense and helps a lot. I’ve been following the SCD for nearly 3 years and although I still rely on a lot of medication, I still feel that the diet is helping.
Many thanks for a great site.
Jane
Hi Matt,
I just printed out this post for future reference. I wasn’t sure if I should post this on the blog or write you privately, but I suppose more people will learn if it’s discussed on the blog. I actually have found a doctor who is willing perform a fecal transplant on me. He’ll do it via colonoscopy, and spray the transplant through the colon. However, he’ll only be doing it once, as opposed to, I believe 5 times that was listed under the Borody study. So, here’s my dilemma, and I’d love your advice since I feel like you are a wealth of knowledge.
Do you think that after I do the transplant, that I should try and do a couple enemas the following days? My donor is out of town and will be here the day of the transplant and I believe the following two days, so I could probably do it for 3 days total. I wasn’t sure if having it spread throughout the whole colon as opposed to just an enema would maybe help things along since it covers more area. I’m honestly really apprehensive about doing the home infusions, because I’ve never given myself an enema, I have no idea what I’m doing, and I gag every time I have to donate a stool sample of my own, so doing it myself should be a real trip.
But, if you think it’s invaluable to do it a couple times extra to help the good bacteria adhere, I’ll get over it.
Also, I’ve been on antibiotics and will remain on them up to the day of the transplant. Can I take those Klaire Labs Interfase enzymes with the antibiotics? Is there any issue with taking them at the same time?
Then as far as the diet that is recommended, did you go low fiber before the infusions, and if so how low? Were you able to go high fiber after you started? I’m a little worried about going super high fiber, since I’m in a flare and after doing the prep/colonoscopy I’m wondering how well my body will tolerate the fiber. Would you mind sharing what you ate? Hopefully I didn’t miss this in other posts.
Thanks for your blog, Matt. This is such a great resource for the rest of us dealing with IBD and wanting to find/share our experiences with alternative treatments.
Amber,
Thanks for putting this in the comments. I agree that others could benefit from the conversation.
I think you absolutely should do more than one infusion. You’re right, it’s not a pleasant experience, mixing the stool samples, but if it works for you I dare say it’d be worth it. From what I’ve read, five is the minimum I”d think about doing. Ten is the most I’ve heard of. I did ten. You don’t have to do them daily. You could do 1-2/wk for 5-10 weeks if you’d rather do it that way. I think that’s the way Borody is doing them now–spacing out the infusions.
For the antibiotics, make sure that they are out of your system, or that your blood levels have fallen below therapeutic levels before you do that first infusion, or you risk killing all or most of the bacteria in that infusion. Depending on what you are on that could be anywhere between 24 hours and 5 days. Your Doctor will know. Ask him what the half-life of your antibiotics are and how long it takes to clear them. Do your first infusion as close to when you quit the antibiotics as is reasonable, but too soon and you’ll just kill that first infusion.
I don’t know abou the enzymes. I don’t see any reason you couldn’t keep taking them, but ask your Dr.
I stayed SCD the whole time. I figured, If it ain’t broke…
I know the studies talk about doing a high fiber diet, or adding psyllium (to your diet, or to the infusions) while you are actively doing infusions, but if you are on the SCD, and it’s helping now, it will still help. What happens if you drastically change your diet during this therapy before your gut is ready for all those foods. Or worse, what if those fibers were one of the causative factors in your disease etiology? Do what you know works for YOUR BODY, eat what YOU know your body can handle. Those bacteria are versatile enough, they don’t need a pre-biotic, or high fiber to thrive in your gut. They can live solely on your intestinal mucus during times when you’re not eating.
Again, I stayed SCD. I tried rice once, just to see, and it didn’t work. Otherwise I ate my normal SCD diet throughout.
Thanks for the comment, and the encouragement. Let me know how your FTT goes. If you need a sounding board during or after, don’t hesitate to contact me.
Best,
Matt
Matt,
You’re the BEST! Thank you for being so helpful and being a guide for me. I really can’t tell you how much I appreciate it.
I’m so glad I asked you, because I didn’t even think about the half life of the antibiotics. I’m kind of in a slightly odd situation in that my GI isn’t doing the infusion, but a recommended colo-rectal surgeon is, although my GI is the one that has me on the antibiotics. Honestly, I think you know more about the FTT than both of those doctors, though the surgeon has done them before, he’s done them mostly for c. diff, and never a Crohn’s patient, though one UC patient. So, I really appreciate your bringing that point up. I’ll have to consult with my doctor on that.
I totally agree with having repeated infusions, as much as I’d like to deny that and not do them. But at this point, I’ll pretty much do just about anything to get well.
I’ll definitely stay on SCD. I was just thinking about having to go higher fiber within SCD, as in not cooking all the veggies/fruits etc. Though you make a good point, I need to know what works for my body. Unfortunately, as much as I wish SCD was working for me, it’s certainly not enough at this point to keep me off drugs and I keep going back on steriods and antibiotics. Hopefully the FTT will help, it would be great if it REALLY helped, but even if it just helps enough to get me to respond better to the diet, at least that would be a step in the right direction.
I hate to get my hopes up and not have it work, but even if it doesn’t seem to “work” this time, I would do it again. It just makes sense to me that IBD has to have a bacterial component.
OK, well, you have me convinced, I’m off to order some of the supplies you listed and psyche myself up for the experience. I think I may need to purchase some nose plugs too…I’m such a wimp!
You rock, Matt. Thanks for all the tips. I hope this works. By the way, I always look forward to your blog posts, and I wouldn’t have been able to have stuck with the vegan cleanse either, especially since you have to remain within SCD. Too restrictive, I’d be starving. I really hope you can figure out what is still causing your issues.
Take care,
Amber
Hi Matt,
Just wanted to get your advice about my situation. I had the fecal transplant done last Friday via colonoscopy. Per you advice, I sucked it up and did some at home infusions as well. I made sure to wear a nose plug to keep me from gagging, it worked!
My donor doesn’t live nearby, but she stayed over the weekend, so I was able to do 3 infusions at home.
I noticed a difference right away, it cut down the frequency of my bowel movements from 6 to 2 or 3, which was normal for me. However, by Tuesday, I was right back up to having 6 bowel movements again. I’m not sure what to think about the process, did it work for me originally, or was that just a fluke? I am on prednisone right now, but even while on that, it didn’t bring down the frequency, so obviously FTT helped in some way, but I don’t understand why all of a sudden I took a turn for the worse.
A few variables did change, but I’m not sure which made a difference:
1. I took my Humira shot the day before things got bad. Humira hasn’t really done anything for me, but I’ve still been taking it in case I need to combine it with another drug that may help it work. But I’m not sure if it’s possible that Humira could be making me worse? The first day I started Humira, my fever got higher than usual and I had to take prednisone, but I don’t know if these things are coincidental.
2. The day before things got bad, was also my last day of home infusions.
3. I took it easy at the gym the week before the infusion, but I kicked it up a notch this week. I’m not sure if that is affecting me.
4. I tapered from 20 mg to 15 mg of prednisone, but I did that a couple days before things got bad.
Since you have personal experience with this, do you mind sharing your opinion? I don’t know if I need to do more infusions. I could possibly get one this weekend or next. Or do I just give up on this therapy and conclude that it doesn’t work for me? I do have Crohn’s, so possibly that may be why it’s not as effective, by my Crohn’s is in my colon. But if it didn’t work, then why did my symptoms improve for those few days?
I’m not sure what to do at this point, give up or try a few more. What would you do?
Thanks,
Amber
Amber,
Your experience isn’t uncommon. I don’t know which of those might have hindered your progress…it’s most likely that you needed some combination of more infusions, more bowel rest, and some helpful supplements to go along with it (like L-glutamine or Butyrate). I’m not suggesting that adding these things would have changed the outcome for sure, but they could help. You could add them now.
In my mind, there are a few things you can do:
1. Continue to do 1-2 infusions/week for a month, and see what happens. You’ve had Crohn’s for how long? You can’t expect overnight recovery (even though I did).
2. Check your supplements to see if they are increasing your D. What supplements are you taking?
3. Are you on the SCD?
4. When this happened to me, I was so discouraged. I kept doing infusions, and even though my D returned, it didn’t return at the same level as before. That told me there was another layer, another contributing cause. For me, it was most likely diet. So, I got a stool test, a CDSA. It showed that the FTT worked! But it also showed a huge IgE mediated allergic response. So I am on an elimination diet, and it seems to be helping–Peel back the layers. Ask yourself what the other contributing factors may be. You will need help finding them. A good naturopath can help with this; help you peel back the causative layers.
5. Begin probiotics, if you haven’t already.
Try and learn from this; see what your body is telling you.
Best,
Thank you for your advice, Matt, it means a lot to me.
I technically don’t really have D, they’re mostly formed, so I guess that’s good, but it’s most likely due to prednisone.
1. I think I probably will continue to do a few more, probably once a week since I have to travel a couple hours to get to my donor. I’ve had Crohn’s for 2 years now, you’re right I can’t expect it to be better overnight. I guess I’m confused on what to expect. Since I had an immediate response, I figured that regressing in symptoms is a bad sign. But then I’ve also read to give the therapy a few months so that bacteria has time to establish itself.
2. I have been taking glutamine, but only on days I work out, and only a tsp. Maybe I should ramp that up. I’m not taking anything supplements that I wasn’t taking before…actually now that you mentioned it, I started taking my prenatal vitamin again, so perhaps that’s maybe a cause. I’ll pull that for a while. I’m also taking vitamin D, boswellia and bee propolis. Maybe I’ll pull all those for a while and then add them back in one by one.
3. I am on SCD. Unfortunately, I don’t see much of an effect on my disease, but I’m still sticking with it.
4. I completely understand your discouragement. I’m really at a low point right now. I had really high hopes for this therapy, despite having it mostly work for UC patients (and C. Diff). It just seemed logical that it would work since my Crohn’s responds well to antibiotics. I’m so glad that it did work for you, perhaps the same will happen with me. I most likely do have other things going on. I’m looking into finding a naturopath, hopefully they can help me.
5. I’m taking s. boulardii and consuming kefir and yogurt…this is just my thinking “outloud”, but I do kind of wonder how effective the probiotics are if you’ve established a good bacteria base through FTT.
Thanks for your encouragement. It’s so great to have you as a resource.
Amber,
I had the same expectations, but they were unrealistic.
I would take the glutamine every day, and make sure that at least one of the doses is on an empty stomach. I take mine in the morning right when I get out of bed. It sounds like a good plan to remove those supplements and reintroduce them one-by-one.
What do you use to track your diet, supplements and symptoms? Do you make your own Kefir?
The probiotics will still be helpful as they can colonize the mouth, throat and parts of the lower small intestine. With your Crohn’s this will be helpful to your body.
If you don’t see much difference with the SCD, I’d suggest a few things:
1. Did you do the intro diet?
2. Try cutting out: Dairy, eggs, nuts, and legumes for 10 days and then adding them back in one at a time to see if that helps. These are the most common culprits that lead people to fail the SCD.
Hang in there! The natural treatment way can have some bumps in the road…but it’s rewarding in the end.
–matt
Matt,
I’m so sorry it’s taken me so long to respond. I want to thank you for being so helpful with this whole process.
That makes sense about the probiotics. I’ll continue to take them. Yes, I do make my own Kefir. I’m not yet sure if it helps or not.
Thanks for the tips on the SCD. I did do the intro, and I have already cut out nuts & legumes. I did cut out dairy for a month but didn’t notice a difference, so I added it back in for the Kefir probiotics. I was going wild on eggs for a while, but I haven’t been eating much lately. I suppose I could try and see if that helps if I cut them out.
I have definitely noticed improvements, so this is good. I’m just hoping I don’t regress, and I’m really hoping I keep getting better.
Thank you, thank you! Hope you are doing well and I look forward to you next post.
hey matt
i have been doing the home fecal transplant for a couple weeks to treat my UC. the results have been up and down, and i think it is because we did not do the antibiacteria treatment before hand. do you know of any doctors in California that are receptive to this treatment and i could consult to get the meds? i want to do it completely by the book this time and hopefully rid myself of this disease. also, do you have any research information as to what the antibiacteria treatment is supposed to accomplish?
Thanks
Brian
Brian,
I don’t know of anyone in california, but as progressive as the state is, you should be able to find someone. You may have to do some calling around. Maybe start with a complimentary/integrative medicine practice? The therapy assumes that there is a large bacterial component to UC. The antibacterial component of the treatment does two things: It wipes your slate clean, so you can begin anew, and in doing so it reduces colonization resistance, which allows the new, FTT introduced bacteria to take hold more easily.
As far as my symptoms, I just posted (here: http://www.naturaldigestivehealing.com/blog/2011/07/11/the-value-of-an-elimination-diet-in-the-treatment-of-crohn%E2%80%99s-and-colitis/) about them. I’m doing pretty well. I’ve been most or all symptom free now for a while.
Matt
matt,
forgot to ask, how are your symptoms now? looks like it has been about 6 months since you started so i would be really interested to hear your results.
thanks
brian
Hey Matt,
Thanks for the quick response. So it looks like the fecal transfusion helped, but not a cure all. Are you off all meds for the UC? I am currently taking 20mg/day of Prednisone and Colozal. Would be nice to at least get off the Prednisone even if my gut does not go back to 100%.
I just ordered the Interfase pills online and will need to start searching out doctors to get the antibiotics.
Thanks
Brian
I’ve been off medication since mid-2009.
matt
Matt,
I just started taking the Interfase. When you completed that stage, did you take the Vancomycin and Flagyl together, or Vanco for 1 week followed by Flagyl for 1 week?
Thanks
Brian
I took both together.
matt
Matt,
I started the SCB a couple weeks ago and it has been up and down. When you started did it take right away or did it take a while? For the first week I have cut out most foods except for chicken, salmon, banana’s and yogurt. I have a good day and then fall back a little. Would be interested to hear how your first month went on this diet.
Thanks
Brian
Brian,
I think daily fluctuation is normal when you are beginning the diet. My first month was up and down too, heck, my first 15 months was up and down. But the SCD took me from 24 BM/day to 2 BM/day (eventually). Since I was tracking closely and journaling, I could see the big picture–I was getting better. That helped me not to ride the roller coaster. Do you track and/or keep a food/symptom journal? That will really help.
have you tested the yogurt to see if you tolerate it well?
Matt
Matt,
That is good to hear. Thought maybe it was not working but I just need to be patient and stay with it. Has only been a couple weeks. I have not started a food journal but sounds like a good idea. I think I might have had an issue with the banana muffins because of the almond flour so I put those on hold. Will try it again in a couple weeks. Just re-introduced some cooked broccoli last night and seem to be ok. Have been eating a lot of yogurt with honey and banana – maybe too much. Just reduced to 2 times a day. I seem to tolerate the yogurt ok.
Thanks for the response. It is very helpful to hear your experiences.
Brian
I loaned that book Breaking the Vicious Cycle out and don’t think I’ll ever see it again. I’m trying to remember some of the diets. Wasn’t it mostly no grain carbs and no sugars? I was able to do it for 1 month (and it worked!) Has anyone else gotten high uric acid? I don’t know if it was from diet or from the prescriptions.It complicates tyring to do the diet which I remember had a lot of meat and egg dishes–right?
Questions:
If I take antibiotics for 10 days then would it be correct to start the infusion on day 11? How close should it be to the cut off of antibiotics? I saw someone said the antibiotics should not still be in the body. But I would imagine that to keep the colon clean of bacteria one can’t wait too long. What did you do?
Just found this site through the ND Mark Davis in Portland Oregon and am hanging on every word I read on here. I started reading Dr. Borody’s info a few years ago. Forgot it and now am back ready to take the plunge. I am going to go ahead and do this on my own. I start antibiotics today. Not the same ones that you have taken but they should work.
In the past when I have taken them they have stopped my diarreah! I used to be on prednisone and it destroyed my hip bone so now have an artificial hip. Everytime I visit the dentist I have to take antibiotics as they are afraid of infection around the hip. (clymamiacin)
Jamie,
Thanks for your comments. Let me see if I can answer some of your questions:
1. If SCD worked for you, it’s worth $10 for a new copy. Yes, no grains, no sugars, no yeast, no lactose (a sugar). SCD Lifestyle and peacanbread.com are good resources. Let me throw this out there: I think the reason FMT didn’t work for me was that I didn’t have my diet dialed in. So if you’re starting FMT now, I’d start the SCD too. If I had done an elimination BEFORE FMT, then I think I’d be 100% right now.
2. You’ll need to ask your pharmacist what the half-life of the antibiotics are that you are taking. When do they decrease below therapeutic levels? It’s different for each drug. For me it was 24 hours.
3. Good luck with FMT. Let us know how it goes for you.
Matt
Brian, did u find any type of doctor in California to help u with FT?