My DIY fecal therapy thread

sheesh, what some won't try.

wonder who will follow this suggestion??

q

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*Heather* I give suggestions, do with them what you will.
Status: ...Asacol 3 @ 2x daily; Salofalk enema @ 3rd night (nightly/ flares, tapered/maintenance)
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol 20mg as needed; Zantac 150mg; Pulmicort/Airomir (asthma);Effexor XR 37.5 (depression)
~vitamins/minerals/supplements; Probiotics....(RenewLife Ultimate Flora Critical Care+Primadophilus Reuteri capsules @ bedtime)
~Metamucil capsules 6 twice daily with meals; Vitamin D 4500 IU
~URSO for PBC(or PSC?) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS" worth it !!!

Nope. No significant change in bowel habits other than a definite change in the smell. I've technically been in Prednisone induced remission for months and my stools are usually fully formed unless I eat something crazy. I wish it was just infectious colitis but three different docs since 1986 and countless colonoscopies with biopsies diagnosed it as UC.

The test of whether the FT works is going to be the Prednisone taper. I am planning on doing at least three more weekly FT enemas with a Miralax prep. Wish I could follow my donor around to catch every poop but she has a busy social life.

Minor update

Down to 12.5mg of Prednisone w/o GI problems. Did have some wicked all-body aches today that went away with a dose of Wobenzyme. Hydrocort enemas have been tapered - 60ml every other day and now 60ml once every three days. Yesterday decreased Asacol from 4 pills/3x to 4 pills/2x.

Had a weird energy spurt a few days ago but I can't pin it on the FT. Its getting close to the one month mark so I hope to see some solid proof soon.

I've been wondering how you were doing weirdal...glad all is going well!
B

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Proctosigmoiditis

Weirdal68, you live up to your name, but I am impressed that you are prepared to experiment on yourself in such a radical manner.

My brother had to explain to my niece that I needed her poop because I had a tummy-ache. I plan on writing a thank-you letter for her but wait until she's older to give it to her.

While I'm new here, I suspect the "Evil Big Pharma" idea has been beaten to death in the forums. Why sell a pill that would cure a disease if you can sell them pills that you have to take every day to treat a symptom? I completely agree that EBP doesn't want anyone to find a cure. The same goes for the CCFA.

Just to illustrate my point - back in the 90s I discovered the work of a local doctor (Michael McCann) who had cured UC and Crohns using antibiotics and three different probiotics (Natren Trinity, Mutaflor and a bug isolated from a Mr Pingel). When the Pingel bug managed to get a foothold in the patient, remission usually followed as long as they kept taking the other probiotics. When I last talked to McCann, he said nobody was interested in the treatment (this was roughly 20 years ago). His treatment was called "reflorastation" in case anyone wants to track down his work.

Facinating thread!  

As far as big pharma not wanting a cure, perhaps yes perhaps no. Today we have access to research from all over, europe, china,russia, even iran,you would think if someone really found a cure we would know about it.
Ther eare probably enough doc's with UC to spill the beans if there truly is a cure.
I also am pretty sure that someday they will put poop in pill form to put us into remission,even if it is dead bacteria the dna may be enough to do the trick.
Part of the restistance to HPI by the established medical community is, not invented here syndrome, dangerous procedure due to possible donor having some sort of undetected infection, not FDA approved for UC, but since it is an FDA procedure for C DIFF there is hope.
Old Mike

Hey WeirdAl, hope you are continuing to improve after your "poo tea treatment." My son (UC diagnosed 4 years ago) recently underwent FT Jan 6 provided by his long term GI doc via colonoscopy. We did not do follow-up enemas, but are using a good prebiotic called Prebiotin, available online and affillitaed with his GI practice. Treatment was provided after I have badgered his doc for various formats of his medical history to send to Borody in attempt to get a consult. He is still tapering prednisone. So, we are not sure what the result will be, but at this point he is doing ok. You can get info on his docs at this link: http://www.pennlive.com/bodyandmind/index.ssf/2012/01/fecal_transplant_aids_hard_to.html

As for Big Pharma, they are in business to make a profit. I just don't think they will throw research money at something that doesn't benefit the bottom line. Whether or not that's evil depends on whether or not they are actually suppressing research into a cure. The research for this type of cure is going to have to come from private donors. Maybe we all ought to set up a fund where we can donate $10 or $25 collectively to throw at a researcher willing to go after this. Or perhaps badgering CCFA or a celeb with IBD to go after this. I don't know. As a mom watching my adolescent son deal with this lousy hand dealt to him, I have been thinking about this problem every day since his diagnosis.

As for those who are so appalled by this treatment, I would like to remind everyone they transplant pig heart valves into people and no one seems to have a problem with that. I am much more concerned about the potential for diseases crossing species through such transplants than a potential infection from people poop. I mean really...we probably are exposed to other people's poop much more than we care to think.

Weirdal That local doc you spoke to sounded interesting. Did you undergo treatment with him in the end?

Welcome Pinkey,

How is your son doing..any UC symptoms? I've been researching this for months now and do believe an ongoing home FT enema protocol will better the odds of success. Daily for at least a week, weekly for several months, and monthly up to a year. Its great you were able to get his first FT via scope. If UC is nothing more than an underlying infection science hasn't discovered yet (Borody's theory), then it is a resistent one that requires more than a one and done treatment of any kind. Acute colitis (infectious) can be cured with one treatment...ie cdiff, but chronic colitis (UC) needs ongoing therapy to eradicate.

Welcome to the forum and good luck with your son....how old is he? Please keep us posted.

Also, I like the idea of finding a celeb with IBD to try and hopefully succeed with FT. If it worked for them, they would no doubt become our spokesperson. Does anyone know of any celebs that may be interested??? Joe Rogan (Fear Factor) has Crohns....not sure how he manages it? A celeb with UC would be best though.

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5yr old (Jack) Diagnosed UC in Aug/Sept, 2010.
Diagnosed 8/10: Inpatient for one month.
Cdiff infection from inpatient stay.
Remicade since 10/10
Severe relapsing cdiff and uc flares until: 10/11
Bacteria (fecal) transplant 10/11: Remission?
Current maintenance: 7 wk, remicade

wrt Dr McCann and reflorastation, I wasn't able to get a sample of the Pingel bacteria from McCann because he had retired to Ohio. He was in his 70s when I spoke to him and I don't know if he's still alive. Who knows what happened to the all-important Pingel bacteria.

I stopped taking my Asacol on Sunday, haven't had an enema for a week and my gut hasn't acted up in the slightest so I'm pretty sure I'm in remission. I was hesitant at first to think I only needed the two enemas and one oral dose but everything seems to be working. Maybe it was the one oral dose or maybe my niece has really awesome poop. Just announced the good news on my Facebook page an hour ago.

This weekend my brothers and I will be breaking out some Jamesons to celebrate. I'll raise a glass for Dr Borody and for my niece as well. Need to think of a few other toasts.

I have two friends with MS so hopefully I can convince them to try FT. A cousin has lupus and I wish she was brave enough to try this. She's had it for nearly a decade and she's in pretty bad shape with colitis, diabetes and lots of other issues.

Post Edited (weirdal1968) : 2/21/2012 1:01:41 PM (GMT-7)

Looks like I should have held off announcing my remission. Had some cramping and D Friday. I am pretty sure dropping the Asacol was the cause so I started taking it again. I'm certain the previous oral and rectal transplants worked since I was able to decrease my Pred and stop taking my Hydrocort without any problems.

Just received more poop from my niece so another round of enemas will occur shortly.

It is NOT advised to stop UC meds while doing FMTs. You will more than likely need to do them in conjunction for several months to a year before attempting to wean off. OR, be happy with using it as adjunctive therapy. Either way, it takes time for colonization of donor flora to take hold in UC.

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5yr old (Jack) Diagnosed UC in Aug/Sept, 2010.
Diagnosed 8/10: Inpatient for one month.
Cdiff infection from inpatient stay.
Remicade since 10/10
Severe relapsing cdiff and uc flares until: 10/11
Bacteria (fecal) transplant 10/11: Remission?
Current maintenance: 7 wk, remicade

I don't think trying to decrease the dose of Asacol is a good idea while you're doing all the other things. You're already trying to get off prednisone which is challenging on its own for many of us. I'd stay steady on the other meds, at least this way you will have an idea of what caused symptoms if they arise. Have you considered 6mp or Imuran?

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Co-moderator: Ulcerative Colitis
Diagnosed with Pancolitis, Laryngopharyngeal Reflux & Migraines. Battling Extreme Exhaustion.
Currently: Asacol (2800mg) + 6mp (25mg) + Pristiq (50mg) + prilosec (40mg) +Canasa (1g PM) + cerazette

Are you still on any pred (oral) at all? I agree, the asacol should be the least of your worries. If you get off pred in remission that would already be miraculous! Good luck, hopefully just a blip.

is any GI officially willing to help with UC FMT in any state in USA? I see lot of doctors willing to try it for C diff.

I am very happy to see that things working out for people suffering with UC. we all live with hopes and sometime we need some encouraging news like this

ucga Boston Chidren's will do it if you ask. It's becoming increasingly available for UC as GIs finally realize the potential of this therapy.

Last Thursday my niece provided a large sample around 8pm and I decided to be brave and do a poopshake and an enema. It was quite fortunate as earlier that day I had a chocolate malted that didn't agree with me which resulted in a quick and dirty GI flush. It cleaned me out good! Given the relatively clean state of my colon, I realized it was the perfect time to ingest some poop.

A few weeks ago I had to take some antibiotics and my gut hadn't recovered fully but this round of FT seems to have helped greatly. The first movement was stool and plenty of mucus but this morning's BM was quite firm and didn't need much cleanup. It wasn't very large but it was a major improvement.

I wonder if more people would be willing to try the poopshake if drinking a chocolate malted was part of the treatment?

Down to 10mg of Prednisone and my gut hasn't felt this good since before I was diagnosed. Stools are usually large and well formed requiring only minimal clean-up. The only cramping I experience is probably due to constipation from painkillers for post-herpetic-neuragia. Haven't done any more enemas or poopshakes since the last post and the improvement has been slow but steady.

I saw my ophthalmologist today about my current Shingles flare and he asked why I had dropped my Prednisone. Felt brave so I told him about the FT. Since I had not told any of my docs when I did it, I expected some resistance to the idea but his reaction was priceless. His initial reaction was essentially "You did WHAT?" followed by "Does your GI doctor know about this?" My response was simply "No - why should I tell him?" He threw out the usual reasons not to do it ("Didn't you get sick?" etc) but in the end realized there was nothing he could do about it. The student doctor watching us looked as if he was going to be sick. Hopefully I can convince him to spread the word that FT isn't just for C.Diff anymore.

Post Edited (weirdal1968) : 8/8/2012 7:54:01 PM (GMT-6)

Weirdal is weird but effective.

Drinking the poop lol. I hope it cures you forever because you got gutz to do this.

You got my respect, the man will try anything to get rid of this disease. *Bow*

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DX Ulcerative Colitis (panchocolitis) - May 2011.

"Life is like a box of chocolates; you never know what you' gonna get. " by Forrest Gump

I was stable at 10mg of Pred but it looks like the Prednisone was hiding a few surprises. After numerous episodes of abdominal pain/nausea, the ER docs diagnosed me with kidney stones and an inflamed gallbladder. The gb was confirmed via ultrasound as having at least one stone and multiple projections from the tissue wall (noncancerous) that are either polyps or embedded stones. The kidney stones were never seen on xray but two were recently passed thanks to a kidney cleanse tea. The pain in my right side may not be due to the gallbladder so I can't tell if my ascending colon is worse or not.

As much as I want to win the war against UC, I have scheduled an appointment with the GI surgeon to discuss gb removal and a colectomy. If I could get the diseased section of my colon removed I'd take that option in a heartbeat. Too bad that option was out of the question according to him.

Everything I have read so far suggests 100gm poo, 300ml saline, 5 days in a row as an enema is the optimum for UC. You may not have been hitting high enough.
Most of it is listed here http://www.cdd.com.au/pdf/publications/All%20Publications/all_publications.html

Borody has just patented what he thinks is the future.
http://www.faqs.org/patents/app/20120177650

As well as that, you need to remember that you need to feed these microbes optimally for them to take. I'm considering a series of retained ememas and I'm looking at a donor who is a vegetarian, who has never had antibiotics in her life and has never needed B vitamins because her levels are supplied by her microflora. If I expect to get the best benefit, I'll need to change my diet, at least until they are established.

From what I'm reading, often the original microbiota are still there but suppressed and once the FT occurs, over time they get a chance to retake, combining the best of both intestines.

My dysbiosis was probably caused by antibiotic use and a clean out for colonoscopy.

The research that is occurring into the gut/brain link is just amazing.

IT is difficult to evaluate "not hitting high enough" in a case where the guy reports drinking the poop.

everything I see in the Brody patent says "c.diff" over and over again all it is talking about is c.diff. it is not a patent for a device to deliver FT, but a patent of a bacteria strain that targets c.diff.

good for the c.diff patients, but I am c.diff negative, and don't see much future benefit here for me.