Share Facebook


 
09-17-2013, 04:10 PM   #61
sir.clausin
Senior Member
 
sir.clausin's Avatar
 
Join Date: Jan 2012
We have the same GI and now that GI is a believer in FMT
09-17-2013, 05:52 PM   #62
kss
Senior Member
 
Join Date: Oct 2011
Location: Fort Collins, Colorado

My Support Groups:
I've just published a blog post about FMT. I used Crohnology members who have tried it. The survey sent to users was modeled after the only review paper on FMT for IBD (2012). It basically adds 6 people to the total. The reference section is robust and raw data provided.

Please see: Analysis of Crohnology’s Fecal Microbiota Transplantation Users: An Open Source Peer-to-Peer Observational Treatment Study
__________________
Crohn's Disease diagnosed in 2001
Remicade + Azathioprine until 2006
Small bowel resection in 2007
Currently no prescription meds just vitamins and low gluten and nearly vegan diet + exercise
Erythema nodosum 2012-2013
09-20-2013, 12:33 PM   #63
wildbill_52280
Senior Member
 
Join Date: Sep 2009
yet another new study for fecal transplants, this time, and FINALLY, another one for crohn's disease.

previously there were only 2 studies for crohns and 6 for Ulcerative Colitis. now this new study will total 3 for crohn's. this is a total of 9 studies most ending in december 2014, one ending in 2016 and one recently completed for ulcerative colitis.

i will add this to the list of clinical studies in the first post.

http://www.clinicaltrials.gov/ct2/show/NCT01847170

Last edited by wildbill_52280; 09-20-2013 at 03:25 PM.
09-21-2013, 05:31 PM   #64
wildbill_52280
Senior Member
 
Join Date: Sep 2009
UPDATE:
summary of experiment-
the changes i experianced were 30% positive 70% negative for reasons i may now understand. I made some mistakes, so i am making another attempt in a few weeks. I cant really recommend this to anyone just yet, but if i am successful i will take the time to give more details about my experience. Otherwise there is not much to say if it doesn't seem to work, its kind of risky too. if you want to try a fecal transplant, try an enema.


more details-
all these results were based on no dietary changes, meaning i ate the same thing every day that i have eaten for the previous 2 months so nearly every bodily change is a pure reflection of the fecal transplant pills i took so as to make a fair judgement of the fecal transplant pills. these are the results of taking only one dose on one single day. before this experiment i have a bm 1x a day every day, no blood no mucus and firmness ranging from generally soft to firm and moist but not super hard or dry. so i started out pretty healthy and normal from following SCD principles.

2 days after taking the pills which would have represented the results of the pills, i had an obvious increase in bm volume and softness, without any mucus which i interpreted as a slight improvement in bowel health, as a result of taking the pills.

the next day i had another bm that was 3-4x the volume i would typically have compared to the previous 9 months or so, and very soft, there was a slight amount of mucus in this bm with no blood. i interpreted this to mean an improvement in bm health, with some uncertainty about making a qualitative judgement of the presence of mucus, tentatively, i will say that is a decline.

i then started to have increased tenderness in affected areas, and some acute moments of severe pain, then i had a day where i was constipated and had no bm. around this time i had some psychological effects of increased depression/emotional sensitivity. i tentatively interpreted this to mean a decline in health.

the next day was a relief of previous days constipation and came out at a normal time, along with what would have been my normal bm for that day. there was some discolorations and a noticable amount of mucus. the constipated bm was firm and dry and the remaining half of that bm was relatively soft, and more healthy.

the next 2 days my bms were very large soft with hardly any mucus or blood, i interpreted this to mean an increase in health. and possibly the worsening of pain and tenderness to possibly be a severe die off reaction of pathogens OR the pills i made were severely damaged from what had come from the donors body due to how i processed them. the pain and tenderness was now decreasing. my skin health improved, and now it seemed like my abdomen felt very squishy, where typically the places that are inflammed are firm or hard most of the time. i believe inflammation was lower now from where i started. but after the meals when i eat my refried beans, i still felt slight bloating and firmness in only one area. so improvements weren't uniform in entire intestine, but there were some.

today- now i'm constipated again for seemingly no other reason other then whatever the pills did to me/still doing, as nothing in my diet changed. and my psychological function has been fluctuating, i'm still having periods of depression i didnt have before, but they are definitely getting less then they were at its worst, so most of negative effects from the pills are fading away, it is taking a while though. i still have what seems to be less inflammation in some parts of my intestine, so i hope i retain some of these benefits and the negative effects continue to reside. my energy levels seemed to increase for 3-4 days after taking the pills, then they seemed to decline or go back more towards where i was before taking them, so not sure what that means.



im not sure if i accounted for all days of experiment here but that's my best for now. so you see, its hard to judge whether my experiences would be considered normal or good, i believe the noticeable negative effects i experienced would be abnormal, as i have never heard anyone describe doing enemas to have effects like this, but its also could have been from it being so effective that it killed of so much bad bacteria, and supposedly they release the lipopolysaccharide stored in the cell wall when it bursts, and when alot of them die at once, it can increase disease activity, so that may be considered a good thing. either way i still believe the pills were not made right but im still not changing anything in my diet and taking notes to see where my disease will eventually end up as i recover. so i will say i experianced 30% good and 70% bad effects due to the fecal transplant pills and will improve the process and try it all again since i'm obviously still alive and still recovering and retained some minor benefits.

UPDATE:
sept 21 -constipation relieved

sept 22- had a nice bm with slight mucus no blood. reduction in inflammation still noticable. today i believe i have completely recovered from the psychological side effects of ft pills. energy is back to about where i was before ft pills, as it first increased then declined after the ft pills, now it seem i am where i was before ft pills. so i suppose i have retained the improvements from doing this and all side effects seem to be about 95% gone.




more thoughts- im wondering if the reason im fluctuating in bm quality and symptoms is a sign that i did get some good bacteria to repopulate my gut, and the irregular patterns in side effects and beneficial effects are from them gaining ground, and everytime they come across some bad bacteria, hell breaks lose. of course this is completely theoretical.

Last edited by wildbill_52280; 09-23-2013 at 06:49 PM.
09-21-2013, 10:45 PM   #65
kss
Senior Member
 
Join Date: Oct 2011
Location: Fort Collins, Colorado

My Support Groups:
Excellent reporting Wildbill_52280!

If you try stuff and it doesn't work that's valuable info too.
09-24-2013, 03:18 PM   #66
wildbill_52280
Senior Member
 
Join Date: Sep 2009
related video:

https://www.youtube.com/watch?featur...PdrqdXx0g#t=53
09-24-2013, 03:22 PM   #67
kss
Senior Member
 
Join Date: Oct 2011
Location: Fort Collins, Colorado

My Support Groups:
Wow, YouTube has everything! Unbelievable. If you want feel free to post that in the comments section of http://bit.ly/1bm7R2y
09-27-2013, 09:36 AM   #68
mf15
Senior Member
 
Join Date: Jun 2012
Location: Pennsylvania
Here is some new info as to what is going on with the gut bugs after
FT for uc.
Old Mike
http://www.ncbi.nlm.nih.gov/pubmed/24060759
09-29-2013, 12:28 AM   #69
wildbill_52280
Senior Member
 
Join Date: Sep 2009
this isnt directly related to fecal transplants, but more about potential causes of inflammatory bowel disease, and a step closer in the direction of "proving" antibiotics can cause IBD, something that i personally theorize and suspect.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3705454/
Streptomycin-Induced Inflammation Enhances Escherichia coli Gut Colonization Through Nitrate Respiration
10-05-2013, 11:49 PM   #70
wildbill_52280
Senior Member
 
Join Date: Sep 2009
this is just a cool article on fecal transplants that i found.

http://onlinelibrary.wiley.com/doi/1...915.12047/full

Last edited by wildbill_52280; 10-06-2013 at 10:32 PM.
10-06-2013, 12:33 AM   #71
wildbill_52280
Senior Member
 
Join Date: Sep 2009
One thing that I´ve noticed several times...is that everytime someone else have used a toilet before me, their "aftermath" smells so much more than my shit...the smell is very strong and profound, but mine never smells too much. I wonder if that is a evidence of a diverse flora vs simplified flora?!? I don´t know if you guys have ever noticed.

i thought of your observation when i read this. it is a article i found on the american society of microbiology website blog written by a surgeon or something who says when antibiotics first came out he saw many people gi system destroyed from unregulated doses of antibiotics and they starting giving them feces in pills to restore the flora and it was able to restore their issues. the report of healthy bowel having a strong odor and damaged flora having little odor was something i thought peculiar.

The physician in question, who I will simply call Dr. S, thought after examining and talking to patients who had not “felt right” after their surgery had suffered from the aftereffects of the antibiotics that had been given them to sterilize their bowel flora before surgery. The feces of many of these patients would yield no growth on blood agar plates and MacConkey agar for days after their surgery. (We didn’t do anaerobic cultures in those days though). The stools were even odorless. Few stools can make that claim. S thought that their normal flora had been disrupted by the antibiotics. ‘Healthy bowels, and regularity made a happy patient”, he said.
http://schaechter.asmblog.org/schaec...-old-days.html

Last edited by wildbill_52280; 10-06-2013 at 01:34 PM.
10-14-2013, 12:35 AM   #72
wildbill_52280
Senior Member
 
Join Date: Sep 2009
just wanted to let everyone know im still planning on making a second attempt at a fecal transplant pill with many changes/improvements. The time frame is about 4 weeks from now. working hard everyday though on my next plan!

also, i emailed alexander khoruts from the university of minnesota who is a leading researcher in fecal transplants and owns patents on these processes to perform fecal transplants and to make fecal transplant pills. the email was just to obtain information of any upcoming study's for the use of a fecal transplant pill to treat crohn's disease, he said at the moment he wasn't aware of any, but he is doing a study on treating c diff infection with a fecal transplant pill.
10-16-2013, 04:35 AM   #73
Amaze
Senior Member
 
Amaze's Avatar
 
Join Date: Jun 2013
Location: New York, NY

My Support Groups:
This sounds gross lol. Best of luck. I read your reports and I don't see improvements. Correct me if I'm wrong. Hopefully that stem cell thing I hear about works.
10-16-2013, 01:32 PM   #74
wildbill_52280
Senior Member
 
Join Date: Sep 2009
This sounds gross lol. Best of luck. I read your reports and I don't see improvements. Correct me if I'm wrong. Hopefully that stem cell thing I hear about works.
I agree with you, its confusing for a novice. if you only decide to read some of the information here then you are not going to understand what is going on, and what sense to make of everything. also, there is information i'm not giving here either, that i will make more clear later on.

i did have about 5 days of zero inflammation during the second week after taking my fecal transplant pills, but now i'm almost entirely where i was at the begining and i have only retained some of the benefits.

im trying to demonstrate/prove that fecal transplant pill can be superior way administer a fecal transplant to treat and possibly cure crohn's disease. what you are witnessing here are the ups and downs of that process. fecal transplants have already cured ulcerative colitis and may have cured crohn's as well. there is no standardized protocol for administering fecal transplant either by enema nor by pill, and if you were to read my initial post you would see that the 9 or so studies that are planned for the next 2 years, are going to gather information to determine the necessary protocol for giving a fecal transplant by way of an enema, but not a pill as of yet. what im trying to figure out here is not quick or easy, but the end results and what i learn will actually be very simple for anyone to do themselves independant of any doctor or medical institution.

i wish the answers were shorter and simpler then that, but thanks for visiting!!
10-16-2013, 02:52 PM   #75
wildbill_52280
Senior Member
 
Join Date: Sep 2009
coincidentally, here is a related article to what i was just trying to explain.

http://www.healio.com/gastroenterolo...sured-approach
10-16-2013, 03:38 PM   #76
Clash
Forum Monitor
 
Clash's Avatar
 
Join Date: Apr 2012
Location: Georgia

My Support Groups:
Hi wildbill_52280, I've been following your journey. I hope this next experiment goes better for you.

I have a question in relation to this:

i did have about 5 days of zero inflammation during the second week after taking my fecal transplant pills
How did you determine you had zero inflammation? CRP? ESR? Fecal calprotectin level?

Good luck in your journey.
__________________
Clash
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
10-17-2013, 07:11 AM   #77
Amaze
Senior Member
 
Amaze's Avatar
 
Join Date: Jun 2013
Location: New York, NY

My Support Groups:
I'm looking forward to more updates. You definitely have my attention,
10-17-2013, 12:49 PM   #78
wildbill_52280
Senior Member
 
Join Date: Sep 2009
Hi wildbill_52280, I've been following your journey. I hope this next experiment goes better for you.

I have a question in relation to this:



How did you determine you had zero inflammation? CRP? ESR? Fecal calprotectin level?

Good luck in your journey.

zero isnt an accurate description there was nothing precisely numerical about my measurements, what i meant precisely was, there was no detectable abdominal mass/masses, upon my own physical examination.

i check this on a daily basis and feel my abdominal area to see how things are going at least 2 times a day or more, i did this before and after the fecal transplant pills so i have a good comparison, to judge the effects of the pill as fairly as possible. i had 5 days of just pure squishy flatness, and no hard masses. after those five days it would periodically fluctuate between no detectable mass to slight or obvious detectable mass, now im pretty much where i was before the fecal transplant pills where 80% of the time, there is at least some mass detectable in abdominal area, and 60% of the time it is very noticable, and nothing subtle about it.

therefore, 5 days of consistent reduction in the inflammatory mass, is a unique event for me, only attributable to the ft pill, as nothing else changed in my diet, or anything i ingested. i believe the pills i made contained some beneficial bacteria that momentarily found there niche, yet also the process i took to get it into the pill, changed the flora in the pill in a way that may have been responsible for some of the negative effects i experianced. i have read more about what it takes to handle bacteria properly, and now the second time around i believe there will be much more benefical bacteria in these next pills.

Last edited by wildbill_52280; 10-17-2013 at 05:37 PM.
10-17-2013, 03:00 PM   #79
kss
Senior Member
 
Join Date: Oct 2011
Location: Fort Collins, Colorado

My Support Groups:
Soft bellies are excellent! I went years w/o one.

This is besides the point so not to take away from the value of your experiment at all: I believe it's properly called a stricture as opposed to a mass. I used to have a physician who was about 85 years old who used to try and measure my "mass" with a ruler. When I talked to another physician and explained what he'd been doing she said it's not a mass it's a stricture. And she was like "Did he really call it a mass?" I was like "Yep, every time I see him." She, disapproved.
10-17-2013, 06:09 PM   #80
wildbill_52280
Senior Member
 
Join Date: Sep 2009
Soft bellies are excellent! I went years w/o one.

This is besides the point so not to take away from the value of your experiment at all: I believe it's properly called a stricture as opposed to a mass. I used to have a physician who was about 85 years old who used to try and measure my "mass" with a ruler. When I talked to another physician and explained what he'd been doing she said it's not a mass it's a stricture. And she was like "Did he really call it a mass?" I was like "Yep, every time I see him." She, disapproved.
so you are saying, inflammation does not present itself by physical visual external examination with noticable swelling in IBD? but yet this is how we can confirm stricturing? i would have thought the term mass would have been a more accurate description, in the sense that, that is as accurate as diagnosis as i could get just by feeling it with my hands. mass would seem the only justifiable term/conclusion at that point, as it could also be a tumor, or something lodged in my intestine.

In way though, i previously and still understand it to be, pretty much one and the same, stricturing occurs due to long standing inflammation, and inflammation typically involves swelling of tissues. so they like happen in the same area, although not always at the same time. i'm really no expert at this though, and this is way far from the questions, concerns and goals i want to focus on. i have a mass, that i have almost always had that is related to my crohns diagnosis, i suppose thats what i am justified to know at this point without giving myself or having someone else give me a colonoscopy.
10-17-2013, 06:43 PM   #81
Clash
Forum Monitor
 
Clash's Avatar
 
Join Date: Apr 2012
Location: Georgia

My Support Groups:
Stricturing does occur due to inflammation but you can have a stricture also due to scar tissue.

Feeling my son's belly for softness would be a poor indicator for us, since not all inflammation causes stricturing. But thanks for replying to my question.
10-17-2013, 11:29 PM   #82
kss
Senior Member
 
Join Date: Oct 2011
Location: Fort Collins, Colorado

My Support Groups:
so you are saying, inflammation does not present itself by physical visual external examination with noticable swelling in IBD?
Nope, not what I said at all.
10-18-2013, 01:07 PM   #83
wildbill_52280
Senior Member
 
Join Date: Sep 2009
Nope, not what I said at all.
sorry, my previous response was wordy and confusing. i wasn't sure what you meant, so i was trying to clarify. it sounded like you were trying to say all intestinal masses are strictures. which is probably not what you meant. i believe you may have meant in your particular case, you had a stricture when the doctor was using the general non specific term "mass".

otherwise, if you were analyzing my reasoning and how i determined the mass was due to inflammation and not something else unrelated to IBD, that's a good thing and i appreciate that.
10-18-2013, 01:13 PM   #84
wildbill_52280
Senior Member
 
Join Date: Sep 2009
bacteria in gut may hold key to many diseases- CBS news, October 18th 2013

http://www.cbsnews.com/8301-204_162-...many-diseases/
10-18-2013, 01:21 PM   #85
wildbill_52280
Senior Member
 
Join Date: Sep 2009
here's an observation that should help establish the safety of fecal transplants even more so.

Fecal Transplant an Option Even in the Immunocompromised-Medscape, October 16, 2013
http://www.medscape.com/viewarticle/812685

Last edited by wildbill_52280; 10-18-2013 at 09:29 PM.
10-18-2013, 01:47 PM   #86
kss
Senior Member
 
Join Date: Oct 2011
Location: Fort Collins, Colorado

My Support Groups:
Wildbill, I just clicked on you link and it take me to the sign-in page. If you take off the "?src=rss" part it will go to the article: http://www.medscape.com/viewarticle/812685

Last edited by kss; 10-18-2013 at 01:48 PM. Reason: typo
10-24-2013, 12:10 PM   #87
wildbill_52280
Senior Member
 
Join Date: Sep 2009
a testimonial of someone who did a Fecal transplant to treat IBS, supposedly it worked for him.

http://www.ibsgroup.org/forums/topic...ibs-d-success/
10-27-2013, 06:02 PM   #88
wildbill_52280
Senior Member
 
Join Date: Sep 2009
MAJOR NEWS RELEASE: Seattle times, October 26, 2013.

New evidence of Fecal transplants efficacy in crohn's disease in a recently completed study. actually the first study reporting efficacy for crohn's in the U.S.A. This could inspire even more studies for fecal transplant in crohn's disease now. There were only two studys as of date, including this one.


At Seattle Children’s, Dr. David Suskind has just finished the first FDA-approved studies of fecal transplants in children with inflammatory bowel disease. Those with ulcerative colitis didn’t see much improvement, but seven of 10 Crohn’s patients went into remission — results similar to those of drug treatments with more potential side effects.

Now, Suskind says, “I think there are very many more important questions to answer.”

http://seattletimes.com/html/localne...splantxml.html

Last edited by wildbill_52280; 10-30-2013 at 12:51 PM.
10-27-2013, 11:44 PM   #89
sir.clausin
Senior Member
 
sir.clausin's Avatar
 
Join Date: Jan 2012


Thanks for posting
10-31-2013, 09:10 PM   #90
wildbill_52280
Senior Member
 
Join Date: Sep 2009
here is yet, another person, who says he cured his ulcerative colitis with a fecal transplant.

http://www.kztv10.com/news/man-cured...al-transplant/
Reply

Thread Tools


All times are GMT -5. The time now is 05:20 PM.
Copyright 2006-2017 Crohnsforum.com