My Fecal Transplant "Results" UPDATED

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UC_Hater
Regular Member


Date Joined Aug 2009
Total Posts : 45
   Posted 7/21/2013 3:35 PM (GMT -6)   
Had a follow-up colonoscopy 7/19, a month after a 10-day Fecal Microbacteriotherapy Transplant (FMT) procedure.


A little background...diagnosed 10/2008 with ulcerative colitis and have fought multiple flares through to remission each year since. I am on 800mg Asacal, 3 pills, 2xday. Predisone for flares as needed but losing efficacy. Hospitalized in April for IV steroids as the oral predisone was not reducing inflammation (even at 60mg).



Always wanted to try FMT so here was my chance. My gastro had zero experience with it so I saw Dr. Swaroop at UT Southwestern in Dallas. Gastro said, "try the FMT but if it doesn't produce positive results I want you on Remicade ASAP."



The UT Southwestern folks gave me their 10-day FMT protocol and I used my older brother as a donor. I made several process improvements over my 10-day experience and by Day 3/4 I was holding an entire 250ml sample 24 hours until I evacuated the next morning prior to the next day's application.



Going into the 10-day procedure I was having lingering flare symptoms even while taking oral prednisone still (remember, a few weeks prior I was hospitalized for IV steroids, which reduced my symptoms). These included blood with every BM, 4-6 BMs per day, cramping, etc. They didnt want me on prednisone during the FMT but I threw this all together quick and was still tapering off oral prednisone even into the FMT procedure week.



By the Friday of the week of my FMT I was off oral prednisone. Wrapped up the 10-day procedure that next Monday and headed home to Dallas, but I still had blood with every BM...frequency seemed to be reduced but it was hard to tell becuase I had been taking immodium that week to help me hold the FMT samples. However, 2-3 weeks after the FMT trial I had zero blood and frequency was completely normal...1-2 BM/day. I was still taking Asacal.



On to the results of the colonoscopy...up to 50cm into my colon the colon wall looked "completely healthy" (aside from previous scarring) according to my doctor. The mucous membrane was intact with no signs of inflammation. But passed 50cm the colon wall exhibited "cobblestoning", was generally ulcerated and inflammed (although currently I have no blood or typical flare symptoms, which is weird).



My doctor and I discussed this and an early theory we both had was the FMT enemas were only going so far up into my colon. The lower areas that logically would have more contact with the FMT sample appeared healthy. My gastro is going to speak with the specialists at UT Southwestern this week and get back to me. From here, I don't know what they will want to do. My gastro was very excited about the results.




Anyway, I'm not a doctor or expert by any means. I just wanted to share what I thought was potentially promising results. It's completely possible I was just coming down off the flare anyway and the timing of the FMT procedure and my symptoms normalizing is just a cooincidence. But this is the best I've felt in a long time and I hope some of you can get there...if it takes an FMT trial than so be it. I wish I had not waited this long.



I will come back and update you all once I hear back from my doctor and the folks at UT Southwestern.



---------------------------------------------------------------------------------------------------------



I'll just throw out what I changed with the protocol from UT Southwestern:



-Ditch the enema bag. Messy, cumbersome, time consuming transfer, etc. I bought a bunch of fleet enemas and emptied them out, then funneled the daily sample into the bottles for application. Took 15 minutes from start to finish with far less waste.



-I took an Immodium before each application and once I started using the enema bottles, I was able to hold the samples for 24 hours all but one day from Day 3-10 (once I ditched the enema bags).



----------------------------------------------------------------------------------------------------------



UPDATE



Just got a call from my gastro. Labs came back on the colonoscopy and just as she thought, the rectum and sigmoid (lower 50cm) showed no active inflammation (no colitis). It has been about 5 years since I could say that. Even when I felt OK "between flares", I typically had inflammatory markers in the tissue of my lower colon when scoped.



Likewise, beyond 50cm the results were as we thought...chronic, active colitis. The gastro and Dr. Swaroop at UTSW recommend I do the protocol again, but this time they want me to use at least a 400ml sample and try to take it at night so that I can hold it for an extended period of time while laying down, preferably with my feet above my head. I got a little cavalier with the protocol in dropping down to the 250ml Fleet bottles and that appears to be the big mistake. So they think this will help spread the sample past the first flexure and on to the deeper portions of the colon. Really high-tech stuff here. So there it is. I will try to follow up once I complete round 2 (no hard dates set).



Hopefully this is the FMT actually working and not some coincidence...and hopefully some of you can achieve similar results with it.



P.S. As soon as I can get the website set up I will be selling my brother's turds for fecal transplant online at www.***.com. [img]/community/emoticons/blush.gif[/img]


Removed your link. It is against the TOS to advertise a website with the intent of selling products.

Post Edited By Moderator (notsosicklygirl) : 12/29/2013 4:23:34 PM (GMT-7)


hateuc
Veteran Member


Date Joined Jun 2010
Total Posts : 2347
   Posted 7/21/2013 3:48 PM (GMT -6)   
That is awesome news!!  Sounds very promising.  Please keep us posted on how things progress. Hopefully this will "reset" your system and you'll be doing great!
B
UC diagnosed in 2010 but had prob. in 2009
2 Lialda/day Rowasa nightly, periodic anucort supp, starting Cortifoam 8/12
VSL#3, slippery elm
Metamucil wafers

TroubledTurds
Veteran Member


Date Joined Jan 2004
Total Posts : 8328
   Posted 7/21/2013 5:14 PM (GMT -6)   
cool !
diagnosed with pancolitis december 21, 2003
currently taking: -- Astaxanthin,vit D, ALA, DHEA, a smorgassbord of probiotics, & Wild Harvest Inflamma Shield -
No Gluten, Rice, Corn, or Sugar - No Meds - Just good, healthy food -
Lots of H2O, exercise & sleep as much as possible & enjoy this great life that God has blessed me with -

@LoLil
Regular Member


Date Joined Jul 2011
Total Posts : 101
   Posted 7/21/2013 10:31 PM (GMT -6)   
I go to the same doc and did a 10 day FMT last year. Interesting that you already had a colonoscopy. They told me that they didn't want me having any colonoscopies or flex sigs for at least 6 months so as not to disturb any environment of the new colonies of bacteria. I have been so curious to know if they see permanent change in my colon.

Congrats on completing the FMT. We used those enema bags and those were a pain!! If I ever do a follow up treatment I am going to use the fleet bottles!
35 YR Female
First signs Nov 2010 at 16 wks pregnant; Jul 11 diagnosed Pancolitis.
Currently: 4 Lialda at night. Pre natal vit w/DHA. VSL#3 DS 1 packet per day, w/Kefir.
10 Fecal bactiotherapy treatments August 2012, Came off Aza!

MaxMilian
Veteran Member


Date Joined Dec 2010
Total Posts : 1246
   Posted 7/22/2013 6:41 AM (GMT -6)   
I am so glad you are having success with your FMTs. I had 6 done early this year and they have made me worse. I have horrible IBS now (with no signs of improvement) and my FMTs were done by doctors. I wasn't this bad even when I had active colitis. I've tried many remedies, had numerous stool tests, tried several life style changes without noticeable improvement.

the things that have shown some benefit are: immodium, pepto Bismol and a diet that is low in oil/fat.
2010: DX proctitis, IBS, cecum inflammation
2012: DX Crohns? (mild ulcers on terminal ileum), fructose + sorbitol malabsorption, non-toxigenic c.diff
Things I've Tried: Pentasa (Oral and rectal), Salofalk (Oral), FMTs (6 infusions)
STATUS: 23/03/2013 c-scope + biopsies showed zero inflammation. Still have IBS
CURRENT MEDS: Pentasa supps + oral tabs

imagardener2
Veteran Member


Date Joined Jan 2010
Total Posts : 5704
   Posted 7/22/2013 8:54 AM (GMT -6)   
I'm just a little confused (but happy for you):

Did you have this done at UT Southwestern by Dr. Swaroop?
When you say you switched from enema bags to fleet bottles it sounds like you did the transplants yourself.

Also I thought FMT procedure via doctor was by "spraying" the FMT throughout the colon. Yours sounds like the DIY-at-home style.

But... great news on the FMT front that you could get one without having c.dificile and you're so lucky to have it in your area.

I think this could be the BIG thing for UC.
Current diet=modified Paleo (sm amts of swiss cheese and some fruit OK)
In remission April 2010 after 10 years of UC with no remission ever
gluten-free (bleeding stopped) and dairy-free (less gas) started remission path+food diary
current meds=(9)Balsalazide+(2)Citrucel,(1) VSL#3 nightly
Rx meds have never worked for me except for mesalamine enema

UC_Hater
Regular Member


Date Joined Aug 2009
Total Posts : 45
   Posted 7/22/2013 9:36 AM (GMT -6)   
@LoLi,

The 6 month wait period is news to me. Probably should have had more communication between doctors. Hopefully that doesn't screw things up for me.

Honestly though, my last meeting with Dr Swaroop's PA left me a little discouraged...I was asking very specific procedural questions about the protocol and she really didn't seem to know much about it...actually said it was "very trial and error" and the process was constantly evolving into "what works for each individual".

I am curious though, do you recall how much of the sample you were accepting and also how long we're you holding it?

UC_Hater
Regular Member


Date Joined Aug 2009
Total Posts : 45
   Posted 7/22/2013 9:38 AM (GMT -6)   
@imagardener2,

Yes, this was DIY procedure. Donor, blender, saline solution, strainer, fleet bottles and lots of cleaning supplies.

MossPiglet
Regular Member


Date Joined May 2013
Total Posts : 183
   Posted 7/22/2013 9:49 AM (GMT -6)   
Did the clinic run tests on the donor? was any of this covered by insurance? if not- the donor tests- if you feel comfortable would you mind sharing the cost? I am listening to a piece on NPR right now discussing the human microbiome and yes! FT!
UC, 17 years, dx age 33
was on Asacol just switched to Apriso
and 50 mg Imuran
Canasa now as had flare
have been on prednisone, Rowasa and hydrocortisone enemas
probiotics via homemade yougurt of: culturelle, Sacc boulardi, Primadophilus reuteri

UC_Hater
Regular Member


Date Joined Aug 2009
Total Posts : 45
   Posted 7/22/2013 4:13 PM (GMT -6)   
@MossPiglet
 
My brother was my donor (they recommend using a dude - something about men having more potent poo...I'm not kidding). He was given a list of lab tests to complete - blood work and stool samples to check for communicable diseases, etc. There was no cost out of pocket for him (he has really good coverage though).  I had similar labs run recently and it was about $150 for me out of pocket. He just went to his general practitioner to get the labs ordered and they sent him to a Labcorp type facility.
 
The procedure is a 10-day protocol and its completely do-it-yourself. You buy a blender ($25 at Walmart), enema bags ($30?), saline solution (this was like $50 because the pharmacy only sold them in small bottles and you need approx. 300-400 ml per sample), rubber gloves, filter, funnel, bleach wipes, trash bags, Immodium, etc. I trashed the enema bags a couple days in and went to Fleet enema bottles, so my cost was a bit inflated. All in for materials it was probably like $100-$125.
 
Just got off the phone with my doctor and apparently I was using too small a sample. So if you go with the enema bottles, you have to find ones that hold a 400 ml sample (or about 16 oz).

curl3d
Regular Member


Date Joined Feb 2012
Total Posts : 382
   Posted 7/23/2013 12:46 AM (GMT -6)   
@UC_Hater:
Thanks for sharing your story! I also used an enema bottle but refilled it a couple of times during each session.
Status: In remission since beginning of April 2012
Diet: No gluten, no starches and avoiding eating much sugar.
Medicine: Asacol 4x100 daily
FT: Performed Fecal Bacteriotherapy at home using my wife as donor starting the 29th of February for 27 days. Please see tinyurl.com/bw5fn8g for the procedure I used

Petah
Veteran Member


Date Joined Nov 2012
Total Posts : 1206
   Posted 7/23/2013 7:34 AM (GMT -6)   
MaxMilian said...
I am so glad you are having success with your FMTs. I had 6 done early this year and they have made me worse. I have horrible IBS now (with no signs of improvement) and my FMTs were done by doctors. I wasn't this bad even when I had active colitis. I've tried many remedies, had numerous stool tests, tried several life style changes without noticeable improvement.

the things that have shown some benefit are: immodium, pepto Bismol and a diet that is low in oil/fat.
What have Drs said about your symptoms? Are you still on Meds? Have they checked for returned inflammation?

beachlife
Regular Member


Date Joined Feb 2009
Total Posts : 473
   Posted 7/27/2013 9:47 PM (GMT -6)   
Thanks for sharing UC_Hater. I'm about to do FMT in a week or two. Though I have proctitis I do wonder about fully coating the colon with the transplant, I thought I read laying on each side for 30min(3 total), and I once spoke to an ND who was performing FT, but no longer, and we spoke about headstand/shoulder stand/plow type poses(I use to teach Yoga). Did Dr recommend any methods to get the FT higher up your tract? I've heard of some making capsules.

The Curtis Sky protocol(google it) calls for a pretty extensive treatment plan, especially for those resilient cases
https://sphotos-a-sjc.xx.fbcdn.net/hphotos-ash4/426655_151910908329635_1926713350_n.jpg

You're probably already aware but there's a really informative blog site and secret facebook group with 500 helpful members
http://thepowerofpoop.com/success-stories/
http://lifewithcolitis.blogspot.com/
Flexitarian, Gluten Free, Health coach and Yoga teacher
'00 - UC - Proctitis
your beliefs become your thoughts, your thoughts become your words, your words become your actions, your actions become your habits, your habits become your values, your values become your destiny

Ferg520
Regular Member


Date Joined Mar 2006
Total Posts : 24
   Posted 12/29/2013 10:35 AM (GMT -6)   
This is great info. I have a consultation with a GI doc in Tampa tomorrow afternoon to further my opportunity for FMT. Its a 5 day process but I think it will be worth the money. Please let me know how you are doing now since it's been 5 months. I'd like a new update.

imagardener2
Veteran Member


Date Joined Jan 2010
Total Posts : 5704
   Posted 12/29/2013 4:39 PM (GMT -6)   
Ferg520

Do you have C. Diff? I'm south of Tampa and doctors here will only do FMT if you've had C. Diff that does not respond to antibiotics.

This is good news that you can do it. Keep us informed. What is your doctors name?
I'm not in the market but like to know what is being done locally.
Current diet=modified Paleo+potatoes, white rice, hard cheese
In remission April 2010 after 10 years of UC with no remission ever
gluten-free (bleeding stopped) and dairy-free (less gas) started remission path+food diary
current meds=(9)Balsalazide daily (mesalamine enema only when needed)
Rx meds have never worked for me except for mesalamine enema

TroubledTurds
Veteran Member


Date Joined Jan 2004
Total Posts : 8328
   Posted 12/29/2013 4:57 PM (GMT -6)   
again, WE DO !
diagnosed with pancolitis december 21, 2003
in submission - no meds
current supplements: vit D, cal/mag, Primadophilus Reuteri & GOL Raw Men, Wild Harvest Inflamma Shield -
no gluten, rice, corn, soy or sugar - just good, healthy food, lots of all natural well water, exercise, sleep as much as possible & enjoy this great life that God has blessed me with -

pmedic
Veteran Member


Date Joined Nov 2009
Total Posts : 1682
   Posted 12/29/2013 5:19 PM (GMT -6)   
Can someone please post the exact procedure for ft. I was just diagnosed with c-diff and am afraid I will not be able to take the antibiotics due to my severe reactions to medications. I plan on trying the antibiotics first but would like to be prepared to try this myself if I can't find a local GI willing to do FT.
Dx:Ulcerative Colitis March 2008
Dx: Crohns May 2008
Avascular necrosis bilateral knees from Prednisone. Surgery on left knee was Oct 2011, Right knee April 2013
8 blood transfusions, SVT due to low H&H, Anxiety during new medication injections due to past reactions.
Currently on Lialda, Ambien, xanax(prn) D3, probiotic, Rowasa, Cimzia

Guardian7
Veteran Member


Date Joined Apr 2006
Total Posts : 2682
   Posted 12/29/2013 6:43 PM (GMT -6)   
pmedic said...
Can someone please post the exact procedure for ft. I was just diagnosed with c-diff and am afraid I will not be able to take the antibiotics due to my severe reactions to medications. I plan on trying the antibiotics first but would like to be prepared to try this myself if I can't find a local GI willing to do FT.


www.youtube.com/watch?v=xLIndT7fuGo

TroubledTurds
Veteran Member


Date Joined Jan 2004
Total Posts : 8328
   Posted 12/29/2013 7:16 PM (GMT -6)   
there is no EXACT method - ///

get poop
make poop shake
fill spray gun
shoot poop shake from spray gun up the ally
hold on tight
nitey nite

:-)
diagnosed with pancolitis december 21, 2003
in submission - no meds
current supplements: vit D, cal/mag, Primadophilus Reuteri & GOL Raw Men, Wild Harvest Inflamma Shield -
no gluten, rice, corn, soy or sugar - just good, healthy food, lots of all natural well water, exercise, sleep as much as possible & enjoy this great life that God has blessed me with -

pmedic
Veteran Member


Date Joined Nov 2009
Total Posts : 1682
   Posted 12/30/2013 3:32 AM (GMT -6)   
How do you get the Dr to agree to test the donor?
Dx:Ulcerative Colitis March 2008
Dx: Crohns May 2008
Avascular necrosis bilateral knees from Prednisone. Surgery on left knee was Oct 2011, Right knee April 2013
8 blood transfusions, SVT due to low H&H, Anxiety during new medication injections due to past reactions.
Currently on Lialda, Ambien, xanax(prn) D3, probiotic, Rowasa, Cimzia
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