November 21, 2017

Fecal Transplants at home cured Ulcerative Colitis – update a year and a half later

I have gotten many questions and comments on whether I am still symptom-free. I’m happy to say that I am still symptom-free and actually doing better than I was before getting Ulcerative Colitis. Today it will have been exactly 18 months since I did the last of my self-administered Fecal Transplants at home to cure myself of Ulcerative Colitis. I credit those who helped me along the way, including Dr. Barody for his article about how Fecal Transplant had been used to cure Ulcerative Colitis. Also to Dr. Colleen Kelly for talking to me on the phone and connecting me with others who I could talk to about this including Sky Curtis. Even though I ended up doing it myself without instead of with her I am still grateful for the time she took to help me and the information that she shared.

I also feel that there are several things that I did that might help others complete this procedure. This includes those who have had severe inflammation for an extended period of time and who also have a history of Irritable Bowel Syndrome (IBS). In my experience I was doing Fecal Transplants daily until I had a complete remission of symptoms including diarrhea, cramping and muscles spasm. However the addition of the anti-depressant drugs Doxepin and Bupropion Immediate Release caused an almost immediate remission of the remaining symptoms. I think this is because it sufficiently calmed the gut muscles enough to stop diarrhea and allow the new bacteria to finish establish themselves. This was after doing the Transplants on a daily basis for 5 weeks upon the advice of another person who successfully used Fecal Transplants who had done it for 3 months.

To this day I often take Valerian root extract to calm down for a good nights sleep. This also appears to help reduce occasional diarrhea and other IBS-like symptoms that I used to blame on eating certain foods. While I think diet definitely can play a role, I think calming the muscles and nerves in the core on a consistent basis is very helpful. I think it helps because it aids digestion. Whereas stress can cause indigestion because the body moves blood away from bodily functions like digestion. I think this good digestion and lack of any muscle spasms helps promote good, healthy gut bacteria as well. Then the good bacteria also helps digest foods as well as protect against infections.

I am gratified by the amount of attention Fecal Transplants or Fecal Microbiota Transplants been getting lately for Colitis caused by Clostridium Difficile however the next step is going to be more widely applying this therapy to illnesses like Ulcerative Colitis, Crohn’s Disease, Irritable Bowel Syndrome and even illnesses that are not directly related to the gut.

Why has this has not been more widely used for Ulcerative Colitis? The reason is that no single cause has been specifically identified as causing Ulcerative Colitis. I think it is possible that it is either an unidentified bacteria or a combination of several that is the problem. It could possibly be an unidentified bacteria that can also go dormant for extended period of time too. Once this illness has established itself it creates a self-perpetuating cycle in which the symptoms are also causes of the disease. This chicken and egg scenario is one where muscle spasms, diarrhea, malnutrition as well as the body’s inflammatory immune response and ulceration are not just symptoms of the illness but help perpetuate it as well.

In this scenario stress causes the body to go into a flight or fight response which causes indigestion. The indigestion causes either diarrhea or constipation. Then with diarrhea come muscle spasms and cramping. When there is diarrhea the body is more susceptible to bacterial infections or overgrowth of bacteria. The body attempts to fight these bacteria, however it can’t get the bacteria entirely under control. Toxins from “bad” bacteria cause inflammation and might also influence the body’s own immune response might create problems too. Damaged intestinal walls and diarrhea cause malabsorption and further ingestion.

So in summary, I think this is going to become increasingly popular for Ulcerative Colitis in the coming years.

Comments

  1. Just checking

    • How is it going? Are you starting to see better results?

      • Catherine says:

        Hi! I was trying to post a comment on your site yesterday but every time I got past 10 lines it didn't seem to let me write anymore. So that's why I put really short comment to see if that might work. Anyway, hopefully I can figure it out eventually. You do seem to have a new format. I am really pumped, because things seem to be going very well this time. I did 29 day antibiotic regimen. That was getting a little old by the end! I was on three and sometimes four antibiotics and one antifungal. The doctor had initially said we would start the fecal transplant on January 16. But, he changed his mind a few days before that and said we should go for January 28. At this point I got really discouraged, and was thinking of just throwing in the towel. I know my G.I. doctor would probably give me surgery as soon as I want. But, thankfully many people were praying for me and God came through and sort of dragged me through… Despite major whining and discouragement on my part. ; ) So, on the 28th I ingested 40 pills filled with good bugs. In the evening, we did the first enema and it was way better than the last try. I was able to retain about 300 ml for one hour and 10 minutes. Yesterday night we did the second enema, and I retained that for one hour and 38 minutes! I am very encouraged and hopeful about the process. Right now as I write this I am doing the third enema which is at the one hour and 15 minute mark. I think I'll just stay here for about two hours total. My husband came home at lunch to start the enema for me, he's back at work now. But I am super blessed to have a good friend here watching the little kids as I flop on my bed. : ) You can definitely post this as a comment on your site if you want. It may be helpful to other people just know that there are quite a few of us crazy people out there with colitis who are doing the fecal transplant. The doctor that I am working with is named Thomas Louie. He is an internationally known research Dr. mostly working with infectious diseases, specifically C diff. I am still not exactly sure why he agreed to take me on as a patient, but I am super glad that he did! If you Google his name you will find that he has been interviewed in a few different places and has some articles published in G.I. journals. One drugs he really wanted me to try but we didn't end up using was Rifaximin. He seems to think that because of a promising study from Japan, Rifaximin may be the most potent drug for clearing out the G.I. tract for a fecal transplant in the case of colitis. But, this drug is not currently available in Canada, so we were needing to imported from the US and I would've had to pay a pretty hefty price for it. So far with this procedure, I have massively benefited from Canada's medical system And my husband's benefit plan which has completely covered all of the expensive antibiotics that I needed to take. I haven't actually paid a penny to Dr. Louie so far, but we will make a donation to his lab research work. Most of what he does is for C Difficile. But still, once things are considered normal in terms of using fecal Transplants for that disease, then we can get it going much more widespread for colitis. This is what I hope, anyway. Hope all is well for you and keep getting the word out!!!
        Catherine

        • Hi Catherine, I switched comments on here to a program called Disqus (pronounced discuss) which should make it easier to manage. It looks like it is working for you now. In any event you touched off a long response which will probably turn into a post soon.

          I’m glad you have good health insurance since you are in Canada, and I do think you are on the right track here. It’s also good that you have a doctor who has used fecal transplant as a treatment option before for c. diff. The next frontier for doctors in the U.S. and Canada is going to be using this for Ulcerative Colitis and / or Crohn’s Disease. So hopefully your experience will help pave the way for mainstream acceptance in the U.S. and Canada. Of course Dr. Barody from Australia published an article detailing 6 case studies where FT was used to cure Ulcerative Colitis in the American Journal of Gastroenterology back in 2003! It was my discovery of this that convinced me to give this a shot.

          Ironically I think a major contributing factor to my drive to get better was the realization that for me in the U.S. I simply couldn’t afford to be sick with the health insurance I had at the time or any I would probably be able to get in the future. I also realized that the doctors really didn’t know more than I did when it comes to using this for Colitis and that doing the fecal transplants didn’t require any special equipement or skills to do. So why pay wait and suffer for several months and then pay thousands of dollars when I can do this myself?

          With all due respect to the education of doctors and the services they provide, I think the reason there is not “wide spread” acceptance is that no one can really make any money here, once people realize how simple this really is and that it is not any worse than having to clean up after pooping your pants. I sure didn’t until I actually did it. Worse yet for the medical industry, this actually cures the illness. People won’t have to keep coming back to the gastroenterologist for persistent monitoring and treatment of something that is “incurable,” it also will cut into the business of colorectal surgeons and pharmaceutical companies. Even the anti-biotic drugs really aren’t necessary for this procedure. In the case of c. diff Colitis they were often the cause of the illness in the first place.

          Ironically after several hundred thousand dollars spent on my care alone, the cheapest solution was the one that worked, free poop! If I had had endless amounts of money to spend from insurance I probably would have gone along with the surgery at $25,000 plus continued expenses to monitor my health and deal with complications or indefinite amounts of Remicade at $10,000 a dose, possibly 12 times a year for many years!

          As you have seen in my case I was successful WITHOUT pretreating with any anti-biotics and that was the case with at least one other person I spoke to as well who was my mentor in this process. In my case I was 3 days away from surgery after 12 years of pan Colitis. The doctors gave me no other option than surgery. So, while it’s hard to compare cases I can say that mine was definitely severe and resisted all other treatments. In the other case I was aware of the illness was also very severe Crohn’s Colitis and the patient had been hospitalized on several occasions.

          While I can see how anti-biotics could possibly help, by wiping out any competing bacteria so the newly transplanted bacteria will have less competition and can establish themselves more quickly. However since the harmful bacteria cannot be eradicated by anti-biotics, then it is still going to be up to the newly transplanted bacteria to either kill off, crowd out or otherwise keep the bad bacteria under control.

          In my case where I first got better while doing the fecal transplants and then had another flare of Colitis while I was continued to do them, I think that is what happened. The bad bacteria came back again possibly from dormant spores maybe something like MAP and caused a flare. However I think that the reason I got better was that newly transplanted bacteria which was being given daily boosters was able to kill off or otherwise suppress the inflammation-causing bacteria before it could produce more spores for the next round.

          What was truly astounding to me was the breakthrough I had about 7 weeks after I had started the FTs and about 10 ays after I had stopped doing them. This was about 30 hours after I started taking the anti-depressant drugs Bupropion and Doxepin.

          Some of this could have been due to other factors, Dr. Barody’s patients started showing substantial improvement so they were abe to taper off steroids after 6 weeks. I had also recently gone back on Prednisone and also went back on Apriso (mesalamine.)

          However a day after I started taking the anti-depressant drugs, the diarrhea stopped, muscle spasms stopped and I had near solid stool without either prednisone, Remicade or Vancomycin for the first time in over 12 years! In addition to the relief of those symptoms, I also believe that the drugs helped by making conditions more favorable for the newly transplanted bacteria and less for any remaining inflammation triggering bacteria.

          I think it is also possible that once the “bad” bacteria are gone, that symptoms may persist due to Irritable Bowel Syndrome (IBS) and / or from the damaged intestinal lining that is still healing and regaining it’s elasticity. I think this is another way the anti-depressants helped just like they have been known to help for IBS.

          In retrospect I think I have had Irritable Bowel Syndrome (IBS) for most of my life. Since my cure, there have been times where stress has caused me to have loose stool / diarrhea however I have taken the herbal supplement Valerian root extract instead of the prescription anti-depressant Doxepin. This has cause more firm stool within a day. So I now take it at least a couple times a week for sleep and I have good stool once a day.

          I am willing to bet that for many people suffering from Crohn’s and Colitis the impact of emotional stress on the digestive tract made them more susceptible to developing Colitis or Crohn’s as well as contributing to flares. In my case I was struggling with depression in the months before and at time I was diagnosed with Colitis.

          I think that the diarrhea, which is a symptom of the disease, also helps perpetuate an environment where inflammation causing bacteria flourish. It becomes a vicious cycle where part of what can cause the disease, and trigger flares also perpetuates the bacterial environment that sustains the flare. However what if changing the bowel transit time, digestive muscles and solidness of the stool to more closely match the bowel habits of a person with good stool can also help the “good” bacteria to flourish?

          • I did not mention it before but I am taking Wellbutrin or Bupropion as well. 9 mg of Entocort (since Nov… Very disappointing results). And now I take a small dose of Valium 45 min before each enema. Hoping this transplant will work wonderfully and that I can taper off Entocort by mid-March, maybe? I think I will keep the Wellbutrin though.

  2. Catherine, would love an update. Also, does anyone know if faecal transplant has helped with salicylate intolerance, symptoms including anal itch, tinnitus and acne.

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