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Shade711s FMT (for CFAP) Blog

FMT CFAP IBS-D Blog

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#1 Shade711

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Posted 20 October 2013 - 05:06 PM

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Im following in the footsteps of numbers of other people who have done thefreemans procedure for Fecal Microbial Transplant. However, instead of using it to treat IBS-D, I am using it to treat CFAP, or Chronic Functional Abdominal pain.
 
In 2003 and 2004 I  was regularly on antibiotics for a recurring sinus infection. The following year in 2005 I came down with a horrible case of gastroenteritis. A couple of months later I had horrible nausea and abdominal pain that still exists to this day. For this reason I suspect an FMT is a good match for me. In addition ever since I came down with this disorder I also developed major depression and panic disorder. Here's my whole story.
 
I do suffer from diarrhea, but I also have no gallbladder(also removed in 2005 in an attempt to correct the issue), so it is an unrealistic expectation for me to think it could cure me from having loose bowels, since they are likely the result of uncontrolled emptying of bile salts. I dont however know which percentage of my diarrheas are caused by IBS vs caused by my lack of gall bladder, so there could still be some interesting results there.
 
I followed the procedure pretty well, however it took me 40 minutes from the donation to getting it implanted within me. Additionally, I was only able to get half of it in. I decided against using the rest due to the length of time between the donation and having it ready. I was afraid it would have been too long. I originally attempted using a turkey baster, however it was too unweildy for me to use myself. Instead I used a large enema bottle. I thought I could do it mess free, but one thing I didnt take into account is that the enema bottle becomes a pressure vessel due to the bacteria continuing to produce gas. This caused a small mess that I hadnt expected, but was able to manage well enough.
 
I was really worried about being able to keep the product in my colon long enough for its effects to stick. I managed to keep it in for 5 hours before eventually using the bathroom(bristol type 4). This was a lot considering I didnt think Id be able to keep it in at all.
 
I will be regularly be updating; hopefully I'll have some good news.



#2 mr120

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Posted 20 October 2013 - 05:42 PM

Good luck, interested in hearing how it works for other bowel issues.  

Type 4, is that normal for you, or are you usually 5/6?

 

Thanks



#3 Shade711

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Posted 21 October 2013 - 06:56 AM

I haven't kept track but I'd say type 4 40% of the time, and 5/6 40% of the time, 1 10% of the time, and 7 10% of the time.



#4 Shade711

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Posted 21 October 2013 - 07:20 AM

Also, a few words about myself and my donor:

 

I am 245 pounds now. I used to be 130, but after I discovered anti-depressants brought my appetite back and reduced my pain/nausea, I gained a lot of weight.

 

Prior to the anti-depressants, every time I ate I would feel miserably sick to my stomach, and so I was afraid to eat.

 

Now, with the antidepressants, I feel sick if I *don't* eat often enough. Eve worse, the sick pain feeling I get doesn't seem to go away from a light snack, but rather until I am very full. I don't know why that is.

 

This makes it insanely difficult to follow a diet, and now I am pre-diabetic. For this reason, even though anti-depressants help me quite a bit, I am still looking for alternative treatments like the FMT in hopes that I don't feel the pain/nausea when I go without eating. It sure seems bizarre to have nausea that is cured by eating something.

 

As for my donor,

 

My donor is skinny as a rod and eats large amounts of health foods, and yogurts and other natural probiotics. My donor can eat anything and it doesn't bother him, but he prefers to stick with healthy foods. Additionally my donor has no memory of having every been on oral antibiotics, so I am grateful to have such a good donor.



#5 Shade711

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Posted 22 October 2013 - 06:01 AM

Day 2(Monday):

 

I had a really sleepy morning, so against my better judgement I got coffee from Starbucks. This is normally a mild trigger for me, but I really needed caffeine. I had two bm's while at work, a Bristol 4, followed by a 5. The rest of the day I felt mildly bloated, so much so that I tried to use the bathroom 2 more times, but was not able to go. It felt similar to being constipated, but the discomfort was negligible.

 

After work I had to go grocery shopping, and this worried me because I would be very late eating dinner, since I hadn't ate anything since noon. Normally after waiting longer than 4 hours without eating(except when I'm sleeping) my gut starts getting angry and I start grimacing and having panic attack like symptoms. Well while at the grocery story the feeling was about half as strong as it normally was, and though it was unpleasant it was much more manageable than all the other times.

 

This being said, I've undertaken treatments before where I thought I was feeling better, only for it to be the placebo effect. The placebo effect is surprisingly powerful, and it's fooled me before.

 

Over time we'll see.



#6 Shade711

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Posted 23 October 2013 - 09:23 AM

Day 3(Tuesday),

 

I'm still noticing some differences, but not in the ways I expected. My gut pain is still there, but I seemed to have more energy and by bedtime I still had plenty of energy left over and did not feel run down. Early in the morning I had 2 very large Bristol 4 type stools, and this alleviated almost all of my mild bloating.

 

I had dinner at chipotle consisting of rice, beans, salsa, lettuce and corn. Lettuce and corn tend to be painful for me but mixed with rice it becomes quite tolerable. I didn't experience any symptoms last night other than the dull pain in my gut I normally experienced irregardless.



#7 Shade711

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Posted 25 October 2013 - 08:22 AM

Day 5(Thursday),

 

The past couple of days the dull pain in my gut has been constant, and yet my energy level was still higher than normal. However, the wife made tea with xylitol for a sweetener Wednesday night in order to try a different "healthier" sweetener. I prefer stevia, but I wanted to try a different sweetener to see if I might like it better. Well My wife and brother in law drank 3 big cups each, and I drank 1 cup. Within an hour of their 3rd cup,  my wife and brother were practically taking turns in the bathroom because the diarrhea was so awful from it. I had some minor cramps, and the next day I had minor diarrhea(it was more like oatmeal than water). That zapped my energy and now I feel similar to how I did prior for the FMT. However, I do not have a gall bladder, and so I handled the situation better than I thought I would. We'll see after I become regular again if the extra energy I got from FMT still sticks.

 

I think what worries me most is if the FMT fails, I won't know why it failed.

 

I won't know if my pain was a result of bacterial imbalance.

I won't know if my panic/depression was a result of bacterial imbalance.

I won't know if it failed because I didn't do the FMT properly, or if because FMT is not the solution for me.

 

There's just too many unknowns for why an FMT failed, and that's frustrating me.

 

It is however, still too early to say it failed. We'll see.



#8 lookingforcure

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Posted 27 October 2013 - 03:41 PM

Shade711, you mentioned you don't have a gall bladder. Have you ever tried a bile acid sequestrant? Some people without gall bladders see their IBS symptoms worsen, and this is often greatly improved by using a drug like Welchol or Colestipol. I use Colestipol, as its cheaper, and it has helped quite a bit (even though I still have my gall bladder). Ask your doctor about it.



#9 Shade711

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Posted 28 October 2013 - 06:43 AM

Thank you lookingforcure, I'm going to look into that.

 

I'm sad to say that this weekend I was in some pretty gnarly gut pain, and I'm ready to call this treatment a failure for my condition. I'll look into welchol and colestipol, and see where it gets me. Perhaps I'll blog that too lol.



#10 kthejung

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Posted 31 October 2013 - 04:40 PM

you may want to try the FMT procedure more than once.  In your story, what caused the initial vomiting and diarrhea to occur?  I feel for you that people wouldn't believe you; people rarely acknowledge or understand problems that they have not personally had.  It's crazy that doctors haven't really solved this thing yet isn't it?  



#11 useraccount

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Posted 01 November 2013 - 12:04 AM

CDD in australia recommends 5-10 infusions.  They also suggest it should take 4-6 weeks for major improvements.

 

This treatment makes a lot of sense and it seems very exciting.

 

Don't get discouraged. 



#12 Shade711

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Posted 01 November 2013 - 06:06 AM

you may want to try the FMT procedure more than once.  In your story, what caused the initial vomiting and diarrhea to occur?  I feel for you that people wouldn't believe you; people rarely acknowledge or understand problems that they have not personally had.  It's crazy that doctors haven't really solved this thing yet isn't it?  

 

I never saw a doctor for the gastroenteritis as those symptoms resolved itself over 24 hours. It's a very reasonable assumption to say the vomiting and diarrhea were caused by gastroenteritis. When I was a child I had panic disorder, and I had a terrifying phobia of vomiting, and when I was having a panic attack I would be quite nauseated, but ultimately it was my brain generating that symptom. This is why after I had gastroenteritis which was the pinnacle of my fears being realized, I assumed my symptoms that cropped up afterwards were all anxiety related.

 

When doctors couldn't find anything, and my symptoms dragged on for years, people were trying to push me to "move on", because it's just in my head, or I'm making it worse than it really is. Though their intentions were good, this multiplied my depression, because I was incapable of moving on, and so desperate I wanted to die because every time I tried to move on I couldn't.

 

I just got insurance for the very first time since 2004 6 months ago. I racked up 15 grand debt over those years either trying to figure it out, or going to the ER when the pain was too much for me. My doctors started refusing to see me because of the money I owed them. I also applied for disability and was denied. So in short, I couldn't see doctors for continued treatment and just had to suffer endlessly because nobody could help me.



#13 Shade711

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Posted 01 November 2013 - 06:19 AM

CDD in australia recommends 5-10 infusions.  They also suggest it should take 4-6 weeks for major improvements.

 

This treatment makes a lot of sense and it seems very exciting.

 

Don't get discouraged. 

 

I will eventually come back to this treatment, but there are still other angles that I can look at in the meantime, so I will probably come back to this later. Right now I want to take the sibo approach, and see if that's the cause of my issues, and after that I want to look into how my gall bladder is affecting my IBS. Almost all my stools are more yellow than brown, and that suggests to me their transit time is pretty quick. After doing the FMT I was bloated because for the first time in a long time things weren't moving, and I didn't lose the extra energy I found until after I started having loose yellow bowels again.

 

I'm never discouraged for long. I have a peace that passes understanding.



#14 mr120

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Posted 01 November 2013 - 06:37 AM

My BM's were yellow too,

 

After my first FMT, they are now brown, and sometimes Bristol 3/4..

I still have all the issues i had before though, but as i've reiterated before, I did the propagation steps wrong - but i did manage to keep it in for 24hrs+, just waiting on my donor to go again.



#15 useraccount

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Posted 01 November 2013 - 09:33 AM

I started trying the SIBO approach (gaps diet) about 4-5 months ago.  Before that I was a lot like you describe....totally lost and totally desperate.  I was sick as hell and no idea what was at the root. 

 

A little time on the diet and essentially all my sypmtoms were gone.  But I had to stick to the intro diet (basically soup and meat)....anything else added in would bring the symptoms back.

 

So I agree that trying the that approach is well worth it.  The elemental diet would probably be even better.

 

Ultimately though, I believe that if the problem is with microbes in the gut, FMT will very likely be the way to deal with it.



#16 lookingforcure

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Posted 02 November 2013 - 04:30 PM

 

I will eventually come back to this treatment, but there are still other angles that I can look at in the meantime, so I will probably come back to this later. Right now I want to take the sibo approach, and see if that's the cause of my issues, and after that I want to look into how my gall bladder is affecting my IBS. Almost all my stools are more yellow than brown, and that suggests to me their transit time is pretty quick. After doing the FMT I was bloated because for the first time in a long time things weren't moving, and I didn't lose the extra energy I found until after I started having loose yellow bowels again.

 

I'm never discouraged for long. I have a peace that passes understanding.

I would definitely look into the gall bladder angle FIRST, since it is often easily improved with a simple pill and can be quickly ruled out. And given your symptoms (many beople with bile acid malabsorption complain about yellow watery stools) and lack of gall bladder, I think there is a pretty good chance the two are related. There is a well established correlation between gall bladder removal and IBS/bile acid malabsorption for some people, which you can find plenty of info about online. The wikipedia page is a good place to start: http://en.wikipedia....d_malabsorption

To be honest, I'm surprised your doctor hasn't already suggested this to you!



#17 Shade711

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Posted 07 November 2013 - 01:47 PM

thanks lookingforcure, I set up an appointment with my doctor but I can't see him till the 20th, so I have some time to kill until then. I just wish it didn't take so long.







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