Fecal Transplant Log Part II

Hello Everyone,

Tonight I have been reading curl3d's incredible journey and the hopefully still successful remission. Along the way I have also been privy to the trials and tribulations of many others, including banana girl, who seems to finally have the sympathetic (if not yet understanding) ear of her mother. It moved me to register on this forum, and to join with like-minded people.

I am 56 years old and have had ulcerative colitis for the past 12 years. It started as proctitis and gradually grew from there. In 2008 I suffered a severe relapse that required large doses of prednisone in order to gain some control over the symptoms we all know so intimately. For the past 4 years I have tried drug after drug, including remicade, in order to wean myself off of the devastating steroid, but to no avail. Finally in the Summer of 2012, the prednisone itself started to fail, even at 40 mg/day. I was 3 weeks away from signing consent forms to have my colon removed when the universe tapped me on the shoulder and whispered "Fecal Transplants". I read Borody's (et al) study and became quietly, excitedly optimistic.

Armed with another report on the use of home fecal transplants to combat C diff, and using my wonderful wife as the donor, we applied the protocol they outlined with some small revisions. They also suggested using an enema kit, but we were having difficulty (as were others) when the spout would become clogged, even when the fecal matter had been run through the blender. Instead, my wife found a cake icing applicator at the local crafts store (Michaels) with a selection of heads; one being long and thin with a larger diameter opening. The icing applicator looked much like a caulking gun, and allowed for up to 250ml of mixed fecal matter to be ejected slowly with a trigger.

When we started the transplants on Aug 6, 2012, I was on 40 mg of prednisone a day and having approx 10 small, painful, bloody bowel movements a day. By Aug 18, 2012 we had completed 9 transplants, and my wife had to travel for work. By then my pain had gone, the blood had disappeared, the number of bowel movements were down to a few, consistency was becoming better formed, and urgency was anywhere from normal to little. I was also able to reduce the prednisone; down 5 mg every 3 weeks. Because Borody's study indicated a number of transplants from 5-10, we didn't continue, and I thought that I was well on my way to a cure - oh happy day.

After a measure of success during the rest of August (I cancelled the appointment with the surgeon) and September, I started to experience inconsistencies in October, with the bowel movements increasing and sometimes urgent. During this whole time, I had been experimenting with some different foods that I has stayed away from for the past several years, including wheat. I would still have itchiness of the hands and feet after eating certain foods, but the effect it had on my bowel movements was much less short lived than I was used to. Regardless, on Oct 12, 2012, after almost 3 weeks down to 15mg of prednisone/day, I had a relapse.

We immediately started the Fecal Transplant protocol again, but with my wife traveling often for work, were able to do only 18 transplants between Oct 13 and Nov 9, 2012. Nov 10th I felt that we were back on track again. I am currently on 20mg of prednisone/day (went back up on Nov 5) and have not had a transplant since Nov 9, 2012. I feel great, 1-2 BM a day, little to no urgency, well-formed. I will soon start going down on my prednisone again, but after reading the forum, may try to continue the fecal transplants as I do, if my wife's traveling schedule allows.

One thing I should mention that may affect this second try of weaning off of the prednisoe (besides the large number of transplants) is that I went to see an alternative healing practitioner to identify and cure the food sensitivities that seemed to affect my UC symptoms. The process was woo-woo, but if it works and my food sensitivities no longer impact, then it may hasten my cure/remission.

Hi Peaceful Forest and thanks for sharing your story! I am indeed still in remission!

I am typically a sceptic about anything, even stuff that seems very probable to work so I am still planning on staying on Asacol and stay away from complex carbs for quite some time.

What I think will happen over time is that will will eat complex carbs sometimes when you can't really easily get anything else but stick to my own diet otherwise. My advice is stay on the defensive even when you gain positive results. Your body has been in the state of colitis before so even if you get out of it and in long term remission then your body is still prone to get back to the stage of having colitis.

I will never lay down the weapons against this disease completely. These bacteria should have picked a different target they wanted an easy fight.

great stuff Peaceful Forest! I think your description about what triggers this disease is a great description. Keep posting your progress and feel welcome to discuss any details around the procedure as you do so. I am checking in here every now and then

Congratulations Mackster.

Are these the clinical trials scheduled for next year at McMaster University in Hamilton, Ontario? The website for that trial is http://www.clinicaltrials.gov/ct2/show/NCT01545908?term=fecal+transplant&rank=3.

Yes, it might suck to get the placebo instead of the real thing. But then again, placebo's have sometimes been known to have wondrous qualities of their own.

This morning I have started on the antibiotic Vancomycin, the hardest-hitting of Borody's preparation materials. The plan is to take this for 14 days to wipe out any C diff that may be lurking and repopulate again through fecal transplants (though not as many) before trying to reduce from 20mg prednisone/day.

curl3d - might I ask you how you were able to retain your fecal transplants for so long? When I did my previous transplants, I followed the advice of a study for getting rid of C diff which suggested 1-6 hours, but Borody's study suggests at least 6-8 hours. I timed my transplants for 3 hours and stayed bed-ridden and still for all of them. My transplant aimed at medium thick milk-shake consistency and about 200ml.

Any suggestions, more descriptive reminisces of your past transplant experiences would be appreciated;
What was the size of the transplant?
Did you tend to more liquid?
Did you use Imodium, and if so, how much?
Did you stay in bed, still or moving, or did you get up and walk around?
Did you schedule your transplants for the evening so that you could sleep through them?
Anything else you can think of

If anyone else has suggestions as well to help aid in the retention time of retention enemas, they would be greatly appreciated.

Post Edited (Peaceful Forest) : 11/30/2012 8:24:15 AM (GMT-7)

Edbar - I certainly don't mind you making suggestions and thank you for it. The one about elevation is something I will try next time and perhaps decreasing the amount so that it's easier to hold in longer.

I'm sorry to hear that your son flared again after being in remission through FT's. It suggests that for some reason or another, the cause of the UC was not dealt with, and over time, the good flora depleted again. This is not indicative of Borody's study in Australia, where the patients were still in remission (or rid of the disease?) years afterward. This has been the study that I have used as a benchmark ever since I contemplated FT's because it seemed to indicate that the UC condition could be obliterated without having to live a controlled life. curl3d also found remission, but he hasn't been there long enough to know if it's long-term (like Borody's study suggests) or short term with the need for continual maintenance, as you have found with your son.

That's why even though I currently seem to be in some form of remission but taking 20 mg of prenisone/day, I am still taking steps to come as close as possible to duplicating the Borody study before I start reducing the medication again. Either Borody's study results are bogus (I hope not) or there is something they have done in their trials that is significantly missing with the process people use who are less successful.

No symptoms - no meds - eat what I want - that's the final goal.

Thanks curl3d - I will take this into consideration for my next round of FT's.

Espresso, eh? Always a good way to start the morning.

Hey All,

Glad to hear the FT movement is alive and well. Just an update about my now 7 yo son. He is 13 months full remission following a scope and follow up home FT protocol. Jack had severe UC and cdiff infection prior to starting FT. After months of Vanco, rifaxamin, Flagyl, pred, etc., we ran out of options. He was also on Remicade, but NOTHING was working. 20-30 bloody bms/daily. Severe weight loss, infection, anemia, blood transfusions, morphine, etc.....2 days following the initial scope FT, he told us he felt he had a "new tummy". That said, we posponed his next Remi, feeling he may not need it anymore, only to have symptoms appear again after his interval dose time had elapsed. So, that is a clue that this may take some time to really "dig deep".

So, my theory is very similar to Edbar and Peaceful Forest. IMO, UC is an auto-immune disease triggered by infection and caused by gut flora inbalance. I believe some people can "reset" their immune system, rebalance the flora, and create a new healthy colon. That said, this process may take a long time depending on severity of disease. Like Curl3d, our goal is to get my son to the 2 year mark of remission before weaning him off the Remi and onto an Asacol type product. We are now doing monthly FTs and plan to continue for another year at least. FYI: We only use 60ml each time, but he is only 60#s. We started with this amount and wil continue. The initial scope was much more, but we feel there is NO need to stuff him full with the DIY in fear of him not holding it or being any more unpleasant than it already is. That said, I think quantity is not as important as quality.

Edbar talks about a spore cycle of certain "bad" bacteria....research supports a 2 year period as being the time frame to eradicate such bugs (MAP, etc.) The unknown for me is whether to believe the initial infection had rid itself, but triggered the auto-immune process (of which FT, worms, and various other techniques may be able to reset the system)...OR, whether an unknown pathogen still exists. The latter is entirely possible given science does NOT know the majority of our flora identity. I figure either way, FT SHOULD help. Inflammation is key IMO with the success of the FT. The more inflammation, the lesser the odds of success....thus, staring FT during a flare might be tough in many ways. This is why I believe FT is an adjunctive therapy needing something else to supplement its long term effect.

Sorry so long...I wanted to chime in on such an awesome therapy that is giving UCers one more chance to regain normalcy. I must add, med side effects are always scary and rightfully so. My son although in remission for 13 months, got strep throat 7 times during this period...having to go on abx each time. He got through it, and eventually had a tonsilectomy this summer. I believe the Remi definitely makes him more prone to this stuff. However, I also believe the FT kept him strong with his UC through all of it. I should add, I also know my son's trigger was consuming contaminated lake water. Before that day, he was perfectly healthy.

I'm obviously not around much these days...I'm enjoying my son living life again. But I also feel obligated to help in any way I can with FT. NO doubt it saved my son's colon. There are many trials, publications, clinics, drug companies, etc., responding to the demand for FT. I believe you have almost a 100% chance to clear a cdiff infection with this therapy...I also believe you have a better than 50% chance to find success using this as adjunctive therapy for UC. Crohn's on the other hand seems a bit more resistant. I recently heard 70% of our body's immune system is generated from our guts flora being well functioning and healthy (balanced). There is a brain gut connection as well. My son had terrible anxiety with many unexplained things during his sickness. That is all gone now.....IMO, don't waste your time focused on what meds to suppress the problem....This lipstick approach will do nothing for the root cause/problem. Kudos to the FT community...you are focused on the right thing. Research Dr. Borody (Aus) and Dr. Brandt (US). They have it figured out. Funcional medicine focuses on the fixing the problem, not covering up. Keep it up, congrats on your success, don't ever give up, and NEVER stop fighting this fight.

Like I said several paragraphs ago, sorry so long. I'm very passionate about this and needed to blow off a little steam. Good luck to all, hello to Edbar.

bumping my old thread. Around 9 months in remission. Merry X mas and happy new years to you all!

"The alternative healing sessions to identify and rid myself of food sensitivities lasted between Nov 6-16, 2012"

any chance you could share some of the details ?

did it involve any shrunken heads, beads, or bat pee-pee ?

sometimes it's best to just leave things alone -

hmmm, think i'll stick with the bat pee-pee for now -

hope this works for you tho -

and i would maybe try laying off the gluten for a while - it takes about 60-90 days to get it out of my system -

just a thought -

Hang in there