November 26, 2014

Fecal Transplants are under way – Day 7

I started with the Fecal Transplants /Human Probiotic Infusions / Bacterial Therapy to treat Ulcerative Colitis last Sunday night June 12, so that would make today day 7.  A quick note is that there are many names for the simple process of taking fresh stool, mixing it with salt water and then infusing it using an enema for the purpose of treating Ulcerative Colitis or Crohn’s Disease or lesser infections of the large or small intestine that are recurrent and otherwise unresponsive to anti-biotics.

So far everything has been going pretty well and is getting smoother over time as I get used to the process.  For the mixture of fecal matter and sterile saline solution I ended up deciding to make my own sterile saline by boiling a quart of distilled water with a packet of pharmaceutical grade salt sold for use in a saline nasal rinse or neti pot. I did this because I could not buy a large bottle of sterile saline without a prescription.  I am convinced this must be a racket to protect sales of sterile saline in small expensive batches for contact lenses and nasal rinses, because it is exactly the same concentration of saline in water. Even with a prescription  a bigger bottle of salt water should not cost $5. I argued with the Pharmacist at CVS even as I realized the futility. “It’s just clean water and about a table spoon of salt!” But I digress … After the first 2 days I got tired of boiling the water, it’s distilled water and I am mixing it with stool, so I’m sure it’s clean enough. Although others would advise that it come from a pharmacy or be boiled first for 10 minutes.

I haven’t used a blender in a long time and I did not put the base on the blender when I assembled it. Opps, this caused a big mess when I poured in the saline water mixture on top of the stool in the blender. However I didn’t notice the smell because of the chronic sinusitis I have had for years and I got over any squeamishness long ago because of my experiences with Ulcerative Colitis.

Fortunately there was still enough source material to work with for the infusion. I poured it out of the blender into a Glad Ware container and then used an anal syringe ($10 at CVS) to suck up the solution by squeezing the bulb. Then I attached the tip and used a little KY jelly to lubricate the tip. It’s good to know that I have these things laying around my place, although that was not my original intent that I bought it for :) Then I laid on my side on the edge of the bed after covering it and two pillows to put under my hips with a garbage bag and a towel and I was ready for business.

Inserting the tip was no problem, it was about the width of a pen. The bulb took a little getting used to at first as it took some pressure to squeeze it. I found that if nothing would come out I could just twist the bulb and tip or pull it out slightly and then it would start to work again. The contents of the bulb went in pretty quickly within a minute or two and I put the empty bulb in a plastic bag by the side of the bed and then used the balance of my time to catch up on phone calls, text messages, Facebook and then posting this blog entry.

At day 7 I am doing pretty well, no visible blood in stool, still relatively frequent diarrhea which has alternated with loose stool that was a greyish color. There was a lot of gas the first 2 -3 days. I don’t notice this as much now that I am taking generic Gas X (Simethicone) to combat this. I think the gas is a result of new bacteria that is colonizing the colon and the reaction where the new bacteria is killing off some of the old bacteria.

Day 2 I woke up early at 6 am on about 4 hours sleep went out to Silver Diner for a nice big breakfast and coffee, but then ended up taking a nap around 9 am for 4 or 5 hours.  I felt wiped out, although I had been told to expect this so I was not alarmed.  I guess this is related to trillions of new bacteria coming in to take over. Otherwise this has been a process of getting used to new things.

Feel free to contact me with any questions, comments or concerns. It still seems amazing to me that something with so much potential to heal what doctors told me was an incurable condition can be so simple to learn to do.

Fortunately I have also had some experiences with enemas before, Mesalamine enemas as part of my treatment for Ulcerative Colitis.

Thank you once again to Sky Curtis, creator of some helpful guidebooks for Fecal Infusions / Transplants and author of the soon to be published book Gut Reaction, a story about the process she used to cure her son’s Crohn’s Colitis.  Sky gave me some excellent advice and about how to do this procedure and the assurance that it does work, and that Crohn’s and Colitis is a curable condition even if it might take some time. Thank to this blogger who has shared his Fecal Bacterialtherapy experiences in a series of detailed blog posts.

Also a big thank you to my donor, an open-minded friend willing to do what some people seem to think this is kind of weird.

I’m confident it will work and am encouraged by early results. While these may not sound too pleasant, keep in mind that my alternative was to have 2 different surgeries, a full Colostomy with an Illeal Pouch for at least 3 – 6 months followed by a 2nd surgery to have a reconstructive J pouch. Even then I was still going to have to go to the bathroom 5 – 6 times a day. So even if this process takes 3 -4 months of infusions to be completely effective it will be worth it.

  • http://www.primaltraining.co.uk Tim Rees

    Hi,

    What’s the latest? Are you feeling better? Any unexpected side effects, good or bad? Thanks

    • admin

      Hey,
      Thank you for asking. Yes, I am continuing to feel better and still consider myself CURED of Ulcerative Colitis. I have now been free of Ulcerative Colitis flares for 15 months. I have had no blood in stool or chronic diarrhea with severe sudden urgency, after over 12 years of having Ulcerative Colitis (Pan Colitis). I am also not taking any prescription drugs for the sole purpose of maintaining remission from Colitis, although I do take Dextroamphetamine for ADHD during the work week. I also take Velarian root extract to help for sleep at night and notice that it helps me have thicker stool / less diarrhea. I am also about to start with Bupropion again for seasonal affective disorder related depression. St. John’s Wort appears to cause diarrhea for me. I still don’t have insurance, but Bupropion is generic so the out of pocket is not too bad.

      While I sometimes limit trigger foods that appear to cause diarrhea or gas, oftentimes I just eat whatever I want and deal with the resulting IBS Symptoms like diarrhea and / or gas. However I have not had a flare which resulted in blood in stool since immediately after my last colonoscopy. Therefore I consider myself done with Ulcerative Colitis but subject to ongoing Irritable Bowel Syndrome (IBS) symptoms which I can manage by managing emotional state and diet.

      Once again I strongly encourage you to give it a try if you or a loved one are dealing with Ulcerative Colitis

  • Catherine

    How many ml or oz of the poop/saline mixture did you hold in? And for how long, usually? Doc wants it to be 500ml for an hour for me, but as I commented elsewhere on your site, I haven’t been successful with it yet.
    Thanks,
    Catherine

    • admin

      Do you mean that you haven’t been able to retain it for an hour? Have you taken an anti-diarrhea (anti-spasmodic) drug like Immodium an hour before doing the enemas? I started by following the instructions outlined by Dr. Silverman which was 500 ml. However it was hard to hold the enema at that high a volume of solution. As time went on I used less liquid, sometimes as little as 200 ml in the blender which contained the stool, just enough to cover the stool I had put in the blender to mix. It was easier to retain the enema at lower volume. Also I found that taking Immodium an hour before the enema helped a great deal. Later I had good results from anti-depressant or anti-anxiety drugs which were also very helpful for being able to retain the enema.

      Part of the problem is a misconception that you need to flood the whole colon with bacteria. You don’t, the enema just goes in and then back out again. The reason low volume enemas are effective is NOT that the bacteria come in and stay where they are left per se. Rather it works because the stool delivers the new bacteria to seed it and then the bacteria grows and propagates up through the colon. Pre-treating with anti-biotics to wipe out competing bacteria could help the new bacteria colonize faster – in my case without doing that I had a lot of bloating and gas which I assume happened because the bacteria were competing with each other. However notice that watery diarrhea and frequent bowel movements is almost always part of a flare. I think this is because the watery diarrhea helps perpetuate whatever bacteria or combination of bacteria is causing the flare and makes it difficult for good, healthy bacteria to thrive.

      So my suggestion is to pre-treat with a drug to calm the muscles of the bowels, if you haven’t already been doing so (this includes over the counter anti-diarrhea drugs, prescription anti-anxiety or anti-depressant drugs that sometimes cause constipation or even the herbal supplement Valerian which I recently started using as a sleep aid, only to discover that I had better formed stool without diarrea on a regular basis. Also try a lower volume of fluid, too. You still need to strain it so that larger chunks of fiber won’t clog your rectal syringe, but as long as the stool mixture watery enough to flow as an emema then it will work to deliver the bacteria and start the new colony of bacteria. After that you need to slow bowel transit consistently so that the new bacteria can grow all the way up the colon without having to essentially swim extra hard upstream against diarrhea. You can do this through drugs/herbs and/or soluble fiber supplements and foods that helps soak up excess water and add bulk to stool.

  • Dr Bret Palmer

    Hi,

    I’m glad to hear that you are improving. I’m looking into FBT as a possible subject for my PhD. I note there has been a very successful trial in Holland for the use of FBT for C.diff. I’m trying to get enough interest at my university (In England, U.K.) to be allowed to do study its effectiveness of this method for U.C. via a Randomized Control Trial (RCT).

    My question is how many rectal enemas did you use in total?

    In my proposal I was going to suggest 2 enemas (one on a Monday and another on the following Friday) of 500ml, containing 50g of fresh stool in unchlorinated tap water. These enema amounts and type of water used, appear to be what is the most effective in all the systematic reviews I’ve read regarding C.diff.

    Please note I won’t be going along the NJ tube or endoscopy route. I want to find out the effectiveness of the low cost solution of simple rectal enema for UC.

    Thank you for your time.

    Regards

    Bret Palmer

  • Dr Bret Palmer

    Sorry just seen the ‘how many do you need to do section’.

    If you know of any UK based researchers (At Professor level) who are interested in this area of research please let me know. I’m having a difficult time tracking anyone down.

    Regards

    Bret