Fecal Transplant - I took the plunge! PART VI

I know it sounds weird....but yea, the smoking is a SHORT term thing as opposed to steroids that no longer work. If smoking works again it gets me into remission in a few weeks...I'm only using it in the hopes of a quick remission and to quit it as soon as I have a long term strategy. Smoking for a few weeks is looking way less detrimental than years and years of immunosuppressants, esp at like 3 a day. Immunosuppressants with a risk of lymphona, melanoma and other cancers, vs cigarettes for lung cancer. Pretty much it's cancer either way for either option long term.

What I'm really looking for are long term ideas of maintaining remission without immunosuppressants, cigarettes, steroids etc... I believe in the FT process, but sadly can't get a regular donor to do it weekly/monthly if that's what it takes, so was wondering about the frequency that people have used to maintain remission and is anyone using FT alone, without other drugs like 5ASA, 6MP, Imuran, Remicade, etc....

I start the ten days of antibiotics today in preparation for the FT. We are aiming to have colon cleanse on Jul 27 and first FT on Jul 28. We think we need the weekend to perfect the routine and process before the next work week starts. I have been trying to eat a low fiber diet. Besides cooked vegetables, poultry, fish, and white pastas/potatoes I hope I'm doing the right prep. I want to follow Borodys home procedure best I can.

I'm a bit concerned about the FT enemas. I have only done 2 enemas previously ...ever. In prep for a flex sig. My care provider says that I will most likely hold this one better since I'm not flaring now....thanks to Aza.

I ordered 12 Basic Cleansing Enema Bags that are in a kit. It's my understanding I need to hang the full bag from a post or wall. I hope this is the right equipment! I think it will take the first FT before I truly understand the precise procedure.Since I am supposed to do a colon lavage the day before the first one, I need to make sure I am all set!

words of encouragement or advice welcome! Excited and hopeful here.

Hi, just a quick update... We are doing this morning and night since the UC is pretty severe. So far he's done 4 infusions in 2 days/nights. Morning FTs he has been able to hold for about 3 hours... Nighttime ones for about 1 hour.

No real change in bowel movements noticed yet... We are going to do this for at least 2 weeks or maybe a month... And then taper down. I hope we start to see some improvement in his condition.

I use ordinary dish soap which is quite mild. Use a glass container to collect the enema if you aren't already. Plastic is harder to clean. If you are using a strainer I use a brush with the dish soap to clean that. If is a stainless steel strainer which is way easier to clean than plastic. Don't worry too much about sterilizing things; just clean what you can see.

The saline soultion is 0.9% sodium chloride. It should be the same as they use for contacts.

It is probably ok to keep taking probiotics during FT.

I don't think you have to do two enemas a day. It is more important that the donor stool is as fresh as possible. How much of your husband's colon is affected? How much enema are you putting in and how thick is it?

I spoke with Dr Borody a couple of months ago and he suggested using 100-150ml particularly if the entire colon is affected. It sounds like your husband is flaring right now? I think FT works better if a person is not flaring. Some protocols recommend going on prednisone to reduce the inflammation and number of BMs to give the enema bacteria chance to colonize. I don't know if this is a possibility with your husband. The longer he can hold the enema the better.

It's good that you are elevating the body as it is important to get the enema to where it needs to be. You should try to elevate even more than you are doing. We use a mattress with one end resting on the side of the bed. I only blend for 3-4 seconds. I don't think the strainer needs to be a fine one. Maybe a courser one will allow for a thicker mixture and therefore more good bacteria.

I really hope FT helps your husband. It has proven to be a very long process with my son and right now he is doing very well. I hope it continues.

Good luck and let me know if you have any more questions.

Hi,

I just found this forum after a visitor to my website told me about it. I thought I would add my story of success using Fecal Transplant to treat Ulcerative Colitis. I'm a 34 year old man who was diagnosed with Ulcerative Colitis after coming back from a trip to South Africa just before my 21st birthday in July 1999. Stool tests were negative for any known pathogens. After 60 mg of Prednisone and 12 x 400 mg of Asacol did not work I was put on Cipro and I achieved remission. Over the following years I had repeated flares and nothing seemed to work. I tried pro-biotics, I tried diets including Specific Carbohydrate Diet, gluten-free and diary-free. While on Remicade I ended up getting a severe skin infection from a scrape I got while playing kickball. However while in the hospital I once again had a rapid remission for a day while on Vancomycin. Then they stopped it and things went back to where they had been.

I found a GI who would use anti-biotics, I did a stool test again, again negative. However he only gave me Flagyl, in retrospect I should have insisted on Vancomycin. Then as the flare continued I was told surgery was my last option. I heard about Fecal Transplant from an article in Slate.com, however it appeared it was only for Colitis caused by c. diff.

As the surgery date approached I started getting better. The colo-rectal surgeon told me to take protein shakes to boost my low blood albumin levels. While taking the shakes I was able to taper off of Prednisone and was in much better shape, and I started to have more doubts about surgery. Then three days before my surgery date I found a reference to Treatment of Ulcerative Colitis using Fecal Bacteriotherapy by Dr. Borody. I told the colo-rectual surgeon and he said I was crazy and that my rectum and sigmoid colon were "burned out" and had too much scare tissue to ever recover. At this point I had decided not to listen to anything more, since the fecal transplant option had never been mentioned to me. I cancelled surgery and after struggling to find a doctor that would perform the procedure as soon as I wanted I decided to do it myself.

I got a friend of mine to be my donor and we became roommates. I started the fecal transplants in the 2nd week of June 2011, going every day. I got better and then started to have another flare. I went back on Prednisone until I started to run out. My GI doctor said he would not give me anymore Prednisone, so I ended up getting a prescription for Bupropion and also a low dose of Doxepin (Silenor) from a psychiatrist and also refilled a prescription for Apriso. The first full day after I started taking the anti-depressants while rapidly tapering down the Prednisone from 30 mg I had an almost spontaneous remission. This was 7 weeks after I had started 5 weeks of Fecal Transplants every day, and 10 days after I had stopped doing the transplants. Another 6 weeks passed and I had a scheduled colonoscopy. My GI doctor was surprised since there were now healthy patches in the colon where I had had pan Colitis before.

I looked at the colonoscopy results and sure enough there were significant healthy patches where there had been inflammation for over 10 years! I saw that as having turned the corner. I also believe that the anti-depressant drugs helped the bacteria become established by slowing diarrhea. So over 18 months later I am quite healthy and not taking any drugs for Colitis, nor am I on an overly restrictive diet. Many foods that appeared to trigger a flare or otherwise cause problems do not now that my colon has had a year and a half to heal.

Hopefully if I can do it, after having a very severe case that brought me to the bring of surgery that others can too. If you want to read more about how I did it check out my website at www.FecalTransplant.org

Michael

Thank you for the response. I do believe the anti-depressants played a major role since I had such a sudden dramatic remission in symptoms. I did take Immodium almost constantly for many years and took it regularly while doing the Fecal Transplants. It did help with immediate diarrhea to an extent, however it is short acting so you need to keep taking it every 4 hours. What happened with the addition of the anti-depressants was a permanent shift that persisted after I stopped taking them.

After looking over some other discussion threads here on healingwell.com where people used Bupropion to treat flares of Crohn's Disease with varying levels. Since many drugs used to treat Colitis were first approved for Crohn's Disease, including Remicade, I thought it might help for Ulcerative Colitis as well.

I did some more research and found a clinical trial of Bupropion for Crohn's Disease that had been done in 2005, however without published results. The hypothesis was that Bupropion would act an a TNF inhibitor, without the severe cost and side effects. I also found a study which suggested benefits for IBS symptoms. Sure enough I learned that IBS-related diarrhea and muscle spasms has been treated using a variety of anti-depressants before. I think it is quite possible that symptoms like diarrhea can be both a symptom caused by inflammation and well as a factor that perpetuates it. This could explain why emotional stress or a change of seasons can often trigger a flare. The diarrhea caused in part by emotional distress open to door for the inflammation-causing bacteria.

As for meds putting people in a zombie-like state, Bupropion does not do that. It is an energizing anti-depressant, with some similar qualities to stimulants. As for Silenor (sub-clinical dose of the anti-depressant drug Doxepin) yes, it can make you drowsy and a little dopey right before you fall asleep. I imagine this might be similar in some respects to Lorazapan, but possibly with fewer side effects and other risks. I actually spoke to another person who treated used Fecal Transplants and Lorazapan was part of their treatment protocol. However that was for Prednisone-related insomnia, not necessarily slowing bowel movements. No matter what drugs you take, I'm sure their side effects are usually less severe than Prednisone. I had this dramatic improvement at the same time I was rapidly tapering off of Prednisone 30 mg to 0 in less than two weeks.

The good news is that now I do not have to take any drugs for Ulcerative Colitis at all. Have you started the fecal transplants yet?

@Canada Mark

I am still taking Bupropion XL 300 mg right now as well as stimulant drugs Vyvanse or Adderall. I went off it last spring but then went back on it as winter approached. I have also had a fair amount of stressful things going on in my life, like being unemployed. I also use Valarian root extract for sleep at least a few night a week. The Valerian also makes a big impact in terms of having more solidly formed stool. I've also taken 5 HTP here and there. It does seem to help a little but if I'm not taking the others it seems to cause diarrhea. I just glanced at the link to the thread, good stuff, I'll formulate a well-reasoned post to add to that discussion.

More than remission. After 12 years of bloody stool and some form of diarrhea through most of my life, this is the best I've ever been. Since this is without anti-inflamatory drugs, immune suppressing drugs, anti-biotics, restrictive diets etc. So I use the word cured, since I believe the root problem is a reoccurring bacterial infection / imbalance. I believe considering the illness to be done and defeated is key to avoiding the trap of thinking of sickness and then somehow manifesting it in ones life.

The fecal transplant works, and you can do it at home, so I highly recommend it. I also think the link between irritable bowel and inflammatory bowel is also key to solving this illness. However one of the biggest hurdles I had to overcome was, what happens once the illness is gone. What is holding me back if I can't blame being sick. I guess change can be scary even when it would seem obvious that it is for the best.

"or have they given up and are now living off dew and grass in a cave somewhere? "

did you mean to say Liven Up ? cuz that's where i'd like to be ;-)

ASSuming you haven't tried it already, don't waste any more time asking questions and wondering - just get as much info from the threads as you need, and DO IT !

it really is more fun that you ever thought possible - and sometimes it actually works