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The Things I Do for IBS FMT Journal

IBS Cure FMT Fecal Matter Transplant Journal Story Diarrhea Constipation

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#1 ShaneM

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Posted 22 July 2015 - 07:37 PM

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Introduction:

 

Greetings to anyone who has stumbled upon this thread. This thread is meant to serve as a personal recollection of my experience with Fecal Microbiota Transplantation, or FMT. I will be undergoing this procedure on August 22nd; it will be performed by me in my own home as no doctor currently provides the treatment within the United States unless the patient suffers from C diff. I will be performing this procedure in an attempt to relieve myself of IBS–A (IBS–D dominant); a condition which has plagued me for my entire life making school and my social life extremely difficult to manage. Within this journal I will be explicitly and comprehensively detailing my experience with this procedure in the hopes that if it works I can help others achieve the same results. If it does not work, I will share that information as well.

 

My Personal History:

 

My Irritable Bowel Syndrome originated when I was very young. At the age of 3 – 4 years old I came down with a fatal case of food poisoning; I was hastily rushed to the hospital where I received multiple doses of heavy antibiotics in order to relieve the problem. This course of antibiotics is very likely to be the origin of my IBS. Since this point in my life I have suffered from constant diarrhea and abdominal cramping accompanied by gas. From the age of 4 to 15 my IBS was dominantly IBS–D and continued to worsen. From the age of 15 to 19 my IBS changed to IBS–A whilst still predominantly causing diarrhea. I have had an extraordinarily difficult time throughout school as during tests and extracurricular activities I would constantly fall ill and be encumbered by horrific stomach cramps. I have missed quite a few days of school because of this problem and in 2013 was forced to transfer from public education to a private online education program because I could no longer manage my schoolwork with how much IBS was keeping me out sick.

 

I have tried and tested almost every "cure" out there. I have extensively modified my diet to remove trigger foods; I no longer eat Gluten, Dairy (lactose), Nightshade fruits and vegetables, high fiber foods, pork, sausage, processed foods, preservatives, coffee, candy, rice, oats, or beans. I have followed the necessary steps to cure leaky gut. I have faithfully eaten fermented vegetables, cultured coconut yogurt, and taken probiotics. I have avoided excessive stress and anxiety. I slept as much as my body needed (10 hours a day). I've exercised for 2 to 3 hours a day. I've done everything I can; most of which has had a positive effect but is far from a cure – most of these are simply steps to take to keep the symptoms at bay. I'm now 19 years old and will soon be enrolling in college; FMT is my final stand against this ailment and hopefully it's an effective method.

 

On a side note, though this may be an unrelated issue: in 2013 I developed bilateral chronic pain in both hands caused by excessive muscle tension. I also suffer from a clouded/foggy mind and low levels of energy regardless of what I eat that day, or how much sleep I get. This foggy headedness has progressively gotten worse as I've grown older regardless of changes made to my diet and lifestyle. Lastly, I've had struggles with countless psychological disorders; including severe OCD, generalized anxiety disorder (GAD), and paranoia.

 

My Donor:

 

The Donor I have chosen is my mother. My mother has not used antibiotics since she was young, she has absolutely no stomach ailments, and her stools match the 3 and 4 on the Bristol stool chart. My mother is not obese nor does she suffer from any mental problems. I felt the best choice for a donor would be one's mother because essentially that is where the gut flora originates from when we are born.

 


The Procedure:

 

I will be following the procedure detailed here. The positions I will be using during the procedure to allow for propagation are detailed in this thread here. There are various optional steps suggested in the procedure which I will be following. The optional steps that I will opt to do are: colon cleanse/lavage, low fiber diet 2 weeks prior. The optional steps I will not do are: antibiotics prior to procedure.

 

Pre-Procedure:

 

August 7: Started a low fiber, low sugar diet; this will create an absence of substances which the bad bacteria within my colon could use to feed off of and propagate. (Notes: this diet has been quite difficult to maintain when paired with all the other food restrictions I already have in place.)

 

August 20: Taking a quick note on how I feel prior to the procedure so I can compare. Currently I feel fairly tired even with 10 to 11 hours of sleep, I'm having quite some difficulty properly focusing (I feel very zoned out and out of it), my entire body is very tense, my anxiety level is high (as it always is), and I have pain in my hands and a bit throughout my arms and back. My nose is still chronically stuffed, therefore I can't take in a full breath of air or smell. As a whole I do not feel very well.

 

August 21: Formed a mixture of 3 cups Gatorade and 1/3 cup(s) Miralax at 12:30 in the morning; drinking the mixture throughout the day. Consumed one bottle of Magnesium Citrate starting at 7:30 PM and ending at 12 PM. Following a liquid diet.

 

Journal:

 

 

Day 1 [Day of Procedure]: Took Imodium at 1 PM. The procedure was performed at 2:30 PM; the stool used was a 3 to 4 on the Bristol stool chart. The procedure itself honestly isn't that bad; it felt like it went by fairly quickly. The only part of the procedure which was difficult was inserting the enema – I had trouble doing so because of my chronic tension. I would suggest having someone around to help you with this procedure if available. All in all the procedure really isn't a big deal; the cleanse the day before was a bit bothersome because I essentially had to starve myself to clear out my colon and inserting enema was not comfortable but aside from that it's not that bad. Today I will be eating organic chicken, organic turkey, organic carrots with the skin still on, organic cabbage, organic blackberries, and some cashews, almonds, walnuts, pecans; all I'm drinking today is water. (Notes: I will be holding in the solution until 2:30 AM; this will make it a total of 12 hours holding the solution in. The solution is a bit difficult to retain for the first 3 hours and then the urge to go passes.)

 

Day 2: It's now Day 2; I ended up holding the solution in all the way through today. The abundance of fiber I ingested yesterday clogged me up a bit, which I do not mind because the longer I can hold it in the longer the bacteria has spread and propagate. I ate an excessive amount of fiber yesterday which normally would make me quite ill; yet it only gave me subtle gas – nothing compared to what it did before. I have not noticed any substantial changes yet however. My diet will be essentially the same as yesterday.

 

Day 3: Finally went to the restroom at 2 PM today; I had not been able to go since the procedure – this means I held in the solution for 48 hours.The stool was a type 5 on the Bristol stool chart; therefore not in line with healthy stool. I'm not sure whether this is due to die off of the bad bacteria or if it means the procedure does not work, I will have to wait and see. I should know that a heavy amount of fiber is recommended so that the new bacteria can propagate; however if your body is not used to dietary fiber then take it easy the 1st few days or you will constipation yourself – a mistake I made. Today I begin taking Intestinew; a supplement meant to help repair gut lining in order to fix my leaky gut.

 

Day 4: It's interesting; I'm actually feeling a bit worse than before I did the procedure. I'm having IBS attacks frequently and my anxiety has risen. I followed the procedure perfectly; so I'm quite dumbfounded on how it could make things worse. Either my problem extends farther than dybiosis or I'm still experiencing die off symptoms; I hope it's the latter. If anyone has experience with fecal matter transplant die off symptoms please do share what they were. Today I'm continuing with Intestinew and reducing the fiber that I've been eating to try to calm the symptoms down.

 

Day 5: Due to a lack of any results I'm going to discontinue this journal here; I will revisit FMT in about a month and will update my progress then. This specific FMT unfortunately did not yield any results; this may be due to a variety of reasons which will be addressed next time. I still feel FMT is a real means of fixing the bacteria in one's gut but I can't say anymore until next month.

 

[Read the end of this thread, which is page 2, to see what I did following this journal. The FMT's did work, but it took a much more comprehensive plan.]

 

 

If you would like to request any more information during the course of this journal feel free to ask and I will answer as soon as I can. I would like to make this as descriptive as possible in order to give people considering the treatment a comprehensive look at its affects and benefits.


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#2 jaumeb

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Posted 23 July 2015 - 03:35 AM

Thanks for sharing. May i ask about your diet? What are you eating? Are you using probiotics? Do you have any kind of fungal problems? Have you tried goat milk yogurt?

#3 ShaneM

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Posted 23 July 2015 - 05:33 PM

Thanks for sharing. May i ask about your diet? What are you eating? Are you using probiotics? Do you have any kind of fungal problems? Have you tried goat milk yogurt?

 

I don't eat a whole lot, I'm very restricted. My diet consists of all fruits (though I can't eat too many per day because of the high sugar value), coconut yogurt with probiotic, hummus (also cannot eat much because of high fiber), organic tortilla chips with the hummus, naturally raised chicken, naturally raised turkey, gluten-free sandwiches with turkey – some ham – lettuce – mustard, only water and some orange juice for drinks (The water is natural spring water and the orange juice is fresh squeezed), squash, asparagus, cabbage, carrots, mushrooms, and every 2 to 3 weeks I'll have a steak. That's about all that I can eat, it's not much; and I have never tried goat milk or goat milk yogurt. I don't believe I have any fungal problems, no. I have used heavy dose probiotics and also eat probiotic yogurt and fermented vegetables – such as sauerkraut. The problem with fermented foods or probiotic supplements is you may get beneficial bacteria from these sources however it would be almost impossible to get every strain of bacteria that the human gut naturally has from these sources. If I wiped out a good deal of my bacteria when I was young due to the antibiotics I used a FMT is the best chance I have of getting every strain back.



#4 jaumeb

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Posted 24 July 2015 - 04:03 AM

Thanks for your answer. Good luck.

#5 athlon4800

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Posted 25 July 2015 - 06:27 PM

Are you not going to screen her stools for parasites? Many people harbour things like pin worm, Dientameoba fragilis and Blastocystis hominis and are asymptomatic. These parasites are actually relatively common in western countries. I would have her screened by Genova Diagnostics using their parasitologist test before I did anything with her stool! You could make yourself worse.

#6 ShaneM

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Posted 25 July 2015 - 07:26 PM

Are you not going to screen her stools for parasites? Many people harbour things like pin worm, Dientameoba fragilis and Blastocystis hominis and are asymptomatic. These parasites are actually relatively common in western countries. I would have her screened by Genova Diagnostics using their parasitologist test before I did anything with her stool! You could make yourself worse.

 

She will be screened. I plan to post the results on this thread once they come in.



#7 TooMuchPain

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Posted 26 July 2015 - 03:31 PM

Hi ShaneM:

 

Thank you for sharing your story.  I was fortunate enough that my childhood and early adulthood was relatively easy, food-wise, and I could indulge and eat the average American diet including lots of fried foods, high fat foods, dairy products, chocolate, pizza, ice cream, etc.  Then when i got to be about 40 years old, suddenly I started having horrible stomach cramps and sudden attacks of truly awful and painful diarrhea.  It was a puzzle to me at first and then I connected the symptoms with my intake of dairy and fried foods and anything involving vinegar or lemon or acidic foods.  

 

Anyway, I have cut out all those foods and it has helped a LITTLE but not eliminated the attack of IBS-D.  i had all the tests years ago, upper GI, lower GI, colonoscopy, celiac test, gall bladder tests, etc.  All pretty negative and the only thing that has helped me is a very restricted diet.  Plus I discovered acupuncture which has decreased the pain and number of the IBS attacks, which really were quite debilitating and caused a lot of anxiety for several years.

 

I wish you the very best of luck with your fecal transplant and applaud your courage.  Really.  I have read about this type of treatment but am still nervous about considering it, so I look forward to hearing about your experience.

 

Thank you for your posting, and my very best wishes to you.

 

-Alison



#8 ShaneM

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Posted 26 July 2015 - 05:21 PM

Hi ShaneM:

 

Thank you for sharing your story.  I was fortunate enough that my childhood and early adulthood was relatively easy, food-wise, and I could indulge and eat the average American diet including lots of fried foods, high fat foods, dairy products, chocolate, pizza, ice cream, etc.  Then when i got to be about 40 years old, suddenly I started having horrible stomach cramps and sudden attacks of truly awful and painful diarrhea.  It was a puzzle to me at first and then I connected the symptoms with my intake of dairy and fried foods and anything involving vinegar or lemon or acidic foods.  

 

Anyway, I have cut out all those foods and it has helped a LITTLE but not eliminated the attack of IBS-D.  i had all the tests years ago, upper GI, lower GI, colonoscopy, celiac test, gall bladder tests, etc.  All pretty negative and the only thing that has helped me is a very restricted diet.  Plus I discovered acupuncture which has decreased the pain and number of the IBS attacks, which really were quite debilitating and caused a lot of anxiety for several years.

 

I wish you the very best of luck with your fecal transplant and applaud your courage.  Really.  I have read about this type of treatment but am still nervous about considering it, so I look forward to hearing about your experience.

 

Thank you for your posting, and my very best wishes to you.

 

-Alison

 

Thank you Bud; I hope the procedure goes well for me and in turn you decide to try it and it fixes all your problems. :-) – I understand being nervous about such a procedure, I was too at first. When I started thinking about it though; it's only 20 minutes of an uncomfortable feeling with a bit of ick factor and then 6 hours of holding in, sure it sounds like it'll be uncomfortable but if that's all it takes to save me from this ibs for the rest of my life then that is absolutely nothing.



#9 ShaneM

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Posted 27 July 2015 - 06:41 PM

Small Note: this week I have let myself go a bit (in terms of diet) and consumed excessive sugar and not enough probiotic foods. I've noticed that my foggy head has gotten worse throughout this week, furthering the idea that my grogginess/foggy head is correlated with my gut. I'll be very interested to see if this treatment cures more than my IBS. The treatment is scheduled for August 21st.



#10 Jill83

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Posted 13 August 2015 - 10:48 PM

Shane, thanks for replying to my post and your encouragement. I hope your treatment goes well and you get the cure. You are in my thoughts

#11 Jill83

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Posted 13 August 2015 - 10:49 PM

Shane, thanks for replying to my post and your encouragement. I hope your treatment goes well and you get the cure. You are in my thoughts

#12 jaumeb

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Posted 23 August 2015 - 05:44 AM

Thanks for your updates.

#13 Jill83

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Posted 23 August 2015 - 07:46 AM

Thanks Shane, i hope everything went well. We are rooting for you.

#14 Freud

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Posted 23 August 2015 - 03:29 PM

It will be interesting following your path - hopefully - to recovery. I've made two FMT's myself performed at a hospital but sadly it didn't do a whole lot for me. Well, it got worse at first until it actually got a little better but I may have ruined it by over consuming junk food as a reaction to being abstemious for 1-2 years. My gut flora is a mess though. I have low bacterial diversity and no growth of the most common beneficial bacteria such as lactobacillus and bifidobacterium. I’m however determined to find out what's wrong with my body, I finally have a couple of decent clues that I can work with so I'm hopeful that I will get some answers soon.
 
The connection between mental health and GI health are intriguing. Doctors are so focused on the brain-gut axis that they totally forget about the gut-brain axis. They aren’t always very well informed about the abundance of new scientific studies suggesting that humans and our mental and physiological health is largely a product of our microbiota. Especially conditions such as OCD, GAD and depression has been linked to disturbances in our bacterial composition or even linked to specific viruses or bacterial species. I find it rather bizarre that the theory of psychosomatic disorders have such a strong hold on our modern health care system. Freud (yeah, my user name is sarcastic) is largely to blame, and he was a total nitwit, everyone knows that but his theories still have a huge impact on our society, and doctors continue to label patients who comes to them with real, somatic, concrete symptoms (such as chronic diarrhea) as being the hysterics of the modern century. It’s scandalous.
 
I really hope this procedure will work for you! 


#15 acureisoutthere

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Posted 25 August 2015 - 09:41 AM

Wishing you the very best with your outcome ShaneM.  Looking forward to hearing of your success !  I'm glad to hear that your research has helped you to understand what can solve your digestive issues.  I hope that you have read many of my posts about this, and that they have been helpful.

 

Something worth noting, both Borody and Taylor are doing everything they can to limit exposure of the sample to air.  This is done because many of these bacteria are anaerobic, and exposure to air kills them.

 

Diversity also plays a role in the success of an FMT.  The more diverse the microbiome, the better.


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#16 acureisoutthere

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Posted 25 August 2015 - 10:00 AM

 

I don't eat a whole lot, I'm very restricted. My diet consists of all fruits (though I can't eat too many per day because of the high sugar value), coconut yogurt with probiotic, hummus (also cannot eat much because of high fiber), organic tortilla chips with the hummus, naturally raised chicken, naturally raised turkey, gluten-free sandwiches with turkey – some ham – lettuce – mustard, only water and some orange juice for drinks (The water is natural spring water and the orange juice is fresh squeezed), squash, asparagus, cabbage, carrots, mushrooms, and every 2 to 3 weeks I'll have a steak. That's about all that I can eat, it's not much; and I have never tried goat milk or goat milk yogurt. I don't believe I have any fungal problems, no. I have used heavy dose probiotics and also eat probiotic yogurt and fermented vegetables – such as sauerkraut. The problem with fermented foods or probiotic supplements is you may get beneficial bacteria from these sources however it would be almost impossible to get every strain of bacteria that the human gut naturally has from these sources. If I wiped out a good deal of my bacteria when I was young due to the antibiotics I used a FMT is the best chance I have of getting every strain back.

Your so correct ShaneM !   It's impossible to get every strain of bacteria that has been damaged by antibiotics, from probiotics.  There are literally millions of bacteria that populate the large intestine.  Also, according to Dr. Borody ; probiotics don't attach to the intestinal wall (so they're not giving a lasting cure).  They also have a very small chance of surviving through the stomach acids.


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#17 jaumeb

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Posted 29 August 2015 - 05:12 AM

Your effort was really helpful. Thanks for sharing this diary.

#18 acureisoutthere

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Posted 07 September 2015 - 08:49 AM

ShaneM,

 

I am sorry to hear about your outcome. 

 

1. Something important for you to consider :   90% of the bacteria in your large intestine are anaerobic.  Therefore, when you use a blender to homogenize your sample with sterile saline, you incorporate air throughout the sample, thus killing off many/most of the good bacteria you are trying to transplant.  The PowerofPoop website is using an outdated procedure, if they are still using the blender method.

 

2.  As I'm pretty sure you understand ;  your good bacteria have been displaced for some reason or another, and bad bacteria have taken their place on the intestinal wall. Thus, the reason for using the antibiotic to displace these bad bacteria,   before   you transplant in the new, good, helpful bacteria.  I hope you understand this point and it may play a role in your success. 

 

When good bacteria line your intestinal wall, they do their best to exclude the bad bacteria from gaining a foothold.  When we take antibiotics we kill off bacteria, thus giving the bad bacteria an opportunity to attach to the intestinal wall.  Dr. Borody uses a special antibiotic to displace these bad bacteria in a person with disease, thus giving the newly transplanted bacteria a better chance at colonizing and attaching to the intestinal wall.

 

It's a process of exclusion.  Right now, you have thousands of bacteria on your skin.  These bacteria (if you are healthy) normally exclude other, harmful bacteria from gaining a foothold.  They're actually helping to keep you healthy.  Then if they get displaced for some reason, you may end up with bad bacteria in their place, thus causing you disease symptoms.

 

3.  Dr Borody stated that he only achieves a 70% success rate with one infusion, so he does several.

So, after you use an antibiotic, and do the clean-out, and do your transplant/infusion, you    may    need to do infusions every day, or every other day, for the next several days after your initial procedure.

 

Your on the right track.  It's time to evaluate what you can do better for the next time.


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#19 ShaneM

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Posted 09 September 2015 - 01:57 PM

ShaneM,

 

I am sorry to hear about your outcome. 

 

1. Something important for you to consider :   90% of the bacteria in your large intestine are anaerobic.  Therefore, when you use a blender to homogenize your sample with sterile saline, you incorporate air throughout the sample, thus killing off many/most of the good bacteria you are trying to transplant.  The PowerofPoop website is using an outdated procedure, if they are still using the blender method.

 

2.  As I'm pretty sure you understand ;  your good bacteria have been displaced for some reason or another, and bad bacteria have taken their place on the intestinal wall. Thus, the reason for using the antibiotic to displace these bad bacteria,   before   you transplant in the new, good, helpful bacteria.  I hope you understand this point and it may play a role in your success. 

 

When good bacteria line your intestinal wall, they do their best to exclude the bad bacteria from gaining a foothold.  When we take antibiotics we kill off bacteria, thus giving the bad bacteria an opportunity to attach to the intestinal wall.  Dr. Borody uses a special antibiotic to displace these bad bacteria in a person with disease, thus giving the newly transplanted bacteria a better chance at colonizing and attaching to the intestinal wall.

 

It's a process of exclusion.  Right now, you have thousands of bacteria on your skin.  These bacteria (if you are healthy) normally exclude other, harmful bacteria from gaining a foothold.  They're actually helping to keep you healthy.  Then if they get displaced for some reason, you may end up with bad bacteria in their place, thus causing you disease symptoms.

 

3.  Dr Borody stated that he only achieves a 70% success rate with one infusion, so he does several.

So, after you use an antibiotic, and do the clean-out, and do your transplant/infusion, you    may    need to do infusions every day, or every other day, for the next several days after your initial procedure.

 

Your on the right track.  It's time to evaluate what you can do better for the next time.

 

I did not use a blender; we opted for mixing the sample in a Ziploc bag. I do agree with you on the antibiotic part now that I have done more studying; I also agree with having to perform the procedure multiple times. This first procedure was more of a test, to see what it was like. The next time I do it, likely in October, I will go all out. I will take antibiotics for four weeks, wash myself out, and then perform the FMT every day for a week. I won't be journaling that experience; however I will be sure to update this thread if there are any results. I'm also testing for candida, SIBO, and having a colonoscopy done to rule out any other possible ailments.


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#20 ShaneM

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Posted 09 September 2015 - 02:05 PM

It should also be noted, however, that my brother who suffered from IBS as well although to a much lesser degree did the FMT as well. His case was much less severe; but he was still commonly in crippling pain and stuck in the restroom. The FMT worked for him and he says it's completely changed his life. I have no doubt that the FMT works; my case is just much more difficult to resolve due to the length of which I have had it.


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