Fecal Transfusion and other Joys

This last week has been such an experiment.  I thought hookworms were a strange treatment.  Try fecal bacteriotherapy!

Or perhaps I should call it “transpoosion”.  This podcast has some interesting information from the king of fecal infusions, Dr. Borody in Australia.  He talks about an MS patient whose symptoms were reversed by fecal enemas!  It’s been described as the “ultimate probiotic” and this article talks about different uses for fecal transplants, including treating obesity!   In the US, it’s only approved for recalcitrant c. difficile infections, which it has a supposed 90%100% cure rate.  Dr. Borody had one study of 9 UC patients who got and stayed in remission longterm.  He has a protocol to follow and uses a nasal-gastric tube and colonoscope to get the bacteria in the small and large intestines.  And then the patient is instructed to do at least a week’s worth at home.  He has patients do an antibiotic course first, but this rat study showed that antibiotics actually prevented the bacteria from implanting as well. One study analyzed the pre and post treatment bacteria of the recipient, and found that the patient had the microbiota of the donor.  Here’s another study that found the same thing.

I figured I’d take advantage of being on antibiotics for so long, so I came off of them and started the fecal enemas that day.   Actually doing the infusion at home is rather gross.  Whether or not this will work for Crohn’s colitis remains to be seen, but I figured at the very least, I could implant healthy bacteria in my colon, which has got to help.

First you get an enema bag, a blender you’ll never want to use again, some distilled water, and a thing to put under your toilet seat to catch the feces.  You want a donor you can trust is free of viral pathogens, and preferably a relative or a spouse.  Most people test their donor, I did not.   I decided to use my 10 year old daughter, since I breastfed her for 2.5 years, (totally different microbiota if you’re bottlefed), delivered her vaginally at home (first population of our gut flora is what we swallow from our mother’s vagina during birth, and goes on to prevail for years.    And she’s never taken antibiotics.  Though I’m not sure if I gave her the correct flora, obviously being imbalanced myself, at least I’ve always had a healthy vagina, so hopefully her first bacteria were correct, she was full of bifidus infantis for the first 6 months, and I fed her basically SCD for the first few years, not introducing sugar, wheat, or cow’s milk until she was over 2.

Can I just say my family is wonderful?  My daughter is totally willing to do this for me, and accepts why I’m doing it without question.

So the first time, we collected the poo, added 1 cup of saline (sea salt added to the water, about a teaspoon and a half), and you blend that together.  (This is by far the grossest part, and my former chef husband did it for me, as I was sort of disgusted.)  He then filtered it through two layers of cheesecloth and put it in an emptied enema that I bought at the drugstore.

Lay on my left side, lubricated the tip with some propolis/calendula cream I got from a wonderful beekeeper I met at the biotherapy conference, and slowly put it in my rectum.  This is the most painful part, as I have external and internal hemmerhoids, and an inflamed rectum.  And then I squeezed.  And squeezed.  Nothing came out.

My husband brought it back into the bathroom and discovered that the enemas have a little insert with an X on it, and that was blocking the flow.  Unfortunately, in transferring the mixture back into the enema bottle, my husband lost 7/8 of it down the sink.  So I put a few ounces up my butt, and called it a day.

Interestingly, the very painful hemmerhoids I had been struggling with for days, and rubbing zinc cream on them every hour so I could walk, went away the next day.  But it might have been a coincidence.

The next day we tried the enema bag.  One tip that someone told me; make sure the mixture is all the way down to the end of the tubing, so you don’t put the entire volume of air into your colon.  You want to open the clamp and make sure it’s full by leaning it over the toilet, clamping when feces reaches the tip.  My husband, bless his soul, did this all for me.  We had about a 50/50 mixture of stool and water.

We hung the bag from my microphone stand, and I put a mattress on the floor, covered by a garbage bag, a towel, and a stack of cloth diapers.  Slowly put the tip in (ow) and my husband unclamped.

The hardest thing about trying to get something up your butt, is you’ve got a lovely anal scphincter in the way.  You’ve got to get past this, pushing the internal hemmerhoids painfully to the side if you’re unlucky enough to suffer from them, and keep going until most of the tip is in.  If not, the mixture will just drip back out, which we discovered.

So tip in deep enough, open the clamp, and slowly the mixture goes in.  It feels cold and weird pooling up in your rectum and sigmoid, and I started getting the chills, worrying that I was having a bad reaction.  Turns out I was just cold.  My husband would clamp and unclamp according to how I felt, and we got most of it in with a few tries.

I lay on my left side for 15 minutes, rolled to my back and tried to massage the mixture up my colon, lay on my back, then rolled over on my right side.  Then I got cocky and decided to move to my bed to read.  Had a feeling of gas, and suddenly, it all started coming out again, all over my bed and blankets, sheets, and as I tried to move back to the floor mattress, I think I lost most of it.  Sigh.

Third day, my daughter forgot, and pooped at the neighbor’s house.

Fourth day, she pooped around 11, but I couldn’t do the procedure until 2.  I decided to skip the salt water and just boil the distilled water first, then cooled it to room temperature.  I was afraid the salt was acting too much like a laxative.  We also added just enough water to make it go through the tubing, and didn’t bother to filter it.  I figured the less liquidy, the more chance I had to hold it in.   This time was the charm; I stayed on the floor mattress, did the 10-15 minutes per side, then fell asleep for an hour .

When I got up, I had a few moments that I thought I was going to lose it, but breathed and waited and clenched my butt (a common IBD sensation), but I managed to hold on to the precious mixture overnight, 16 hours!  My BM the next day was still skinny and solid, so no great revelations.

Yesterday, my daughter pooped again around 11:30, which was very inconvenient, but I dropped everything and helped my husband mix things up.  The tip was even harder to insert since it hurt so much, but we got about 5/6 of the mixture in before I declared my rectum had had enough, and I did the whole 15 minutes on each side thing until I remembered I had a dentist’s appointment, so had to do the clench and sweat thing until I could get up, put a pad in my underwear, and prayed I didn’t have to evacuate the contents during my 2 hour intensive teeth cleaning.

I didn’t, and held it in overnight.  My poo this morning smelled more like my daughter’s, but still skinny solid stools.

One thing I noticed after each infusion (even the one where I only got a few ounces in) is a strange feeling of calm.  Almost zen like.  I know our bacteria strongly influence our moods, (not to mention what we eat)  so I wonder if her bacteria were doing anything?  Could be a coincidence too; I’ll have to see if it keeps happening.

There were more gurgles then normal, and some gas I managed to expel without a mess (always a good thing), and that brings me to this morning.

I stopped the antibiotics 5 days ago.  The last time I did this, I went 5 days without issue, then started to get mushy stools, nausea, and was up again at night for the first time in weeks, so my doctor advised me to go back on them until I tried Cimzia or Prochymal.  So it’s still early days.  I’ve been feeling more pain in my ileal-cecal valve (where I have minor scarring, so when it inflames, gas gets stuck), and mucus has returned, just a little, even on the antibiotics.  Nothing’s changed yet.

I started the GAPS diet 2 weeks ago while back on the antibiotics, increased my probiotics, and began bupropion a week ago.  (Thought to perhaps have anti-TNF alpha properties.)  The bupropion amazingly is giving me only positive side effects; I could feel it the first day.  So happy and energetic!  I’m up to 200 mg.; will stick with this dose for a few more days, then go to the full dose of 300 mg., split up three times a day.  I notice my sleep is a little lighter, but so far I’ve been able to fall asleep and stay asleep the whole night.  (Insomnia is a common side effect of Wellbutrin.)

I’ve been doing twice weekly IM magnesium injections.  (Or I should say my husband is giving them to me.)  My last red blood cell magnesium test was finally in range; albeit only just barely, and I took it 2 days after a shot, so don’t know how accurate it is, but I am feeling better too.  Less twitching, no anxiety, no neuropathy.  I missed 2 weeks and things got worse.  Then I tried to dose two days apart, and that made things even worse.  Levelled out after a week, so I went back to the twice weekly.  I also notice if I do the whole vial, it’s too much.  We experimented with dose; about 3/4 is perfect; doesn’t waste too much, doesn’t hurt that bad, and doesn’t give me side effects, though I do notice I twitch a bit more for a few days.  The balance between magnesium, Vit D, and calcium are all subtly intertwined, and too much of one seems to unbalance the others.  For example, if I take more then 5000 IU of Vit D, I notice an increase in magnesium deficiency symptoms, so I back down again.  I’m hoping the higher I get my magnesium, the higher I can take in Vit. D.

I have Cimzia in the fridge.  Am investigating Prochymal.  Most of all, I hope that bupropion, the diet, the fecal infusion, and at last the worms kick in, so I don’t have to go down the biologic or stem cell pathway.  I have an appointment next week with a nurse who comes to the house to teach you how to administer Cimzia, and I am actively quering UCSF for more info about Prochymal, so I’m getting all my ducks in  a row regardless of what happens.

What are the worms doing?  Not much but negatives for the last year.  I have lost my love for helminths.  Though they turned my flare around and enabled me to gain weight and have a normal CRP for 2 years, the side effects each time are very long lasting and difficult, and I believe the prednisone and all the reinfections I had last year were to blame for the abscesses.  I hope I never have an abscess or fistula again.

So that’s my update.  I’m hoping a few more good, fresh fecal infusions start turning things around.  We’re supposed to go camping later this week, so I’ll have to pause then, but will probably do anther week’s worth since I’ve only had1  infusion within half an hour of my daughter pooping, so I want to do 9 more for a total of 10.  Then I might do them weekly for a while unless I feel I don’t need to.

Always very interesting in the Crohn’s disease world.  After the second infusion, my 13 year old daughter looked at me and shook her head saying, “Mom, you’re really brave.”  I caught my younger daughter trying to explain to her friend why I had a mattress on the floor.  I’ve asked her not to tell anyone, but these days, most of my friends and family don’t bat an eyelash when I tell them my next Crohn’s disease therapy.

I had an enormous pile of horse manure dumped into my driveway the day before I did my first fecal infusion.  I also did an egg count.  It was a day filled with poop, and I’m getting a little tired of it all.  But if it works, it will be worth the gross factor.  Horse manure smells a lot nicer then human manure, that’s all I can say.

Oh another tip; I rubbed Ben Gay all over my chest before I started.   Nothing like menthol to disguise the smell.

I still have eggs, and my husband does too! But he ate a walnut a few weeks ago and had a mouth reaction, so he hasn’t gotten any benefit yet.   It will be interesting to see if my egg count rises after a few weeks, and whether or not the egg count was affected by the antibiotics.

I wonder what next week will bring?

 

  1. Helen Love’s avatar

    Wow, thank you for posting this, you sure are brave. I hope it works too! I was told to warm up eardrops to body temp (by holding them in my hand) to make it more comfortable going in, maybe that would help you not get chills with your transfusion. That’s awesome that your family is so kind to you and understands so much about intestinal health.

  2. Erin’s avatar

    I hope this works for you. We are starting in a week or so for my 8 year old. Her doctor said to use a syringe to fill gelatin capsules, wipe off with a dry paper towel, then double encapsulate and store in the freezer. She will then stop antibiotics and take one a week for 2 months (if we don’t see anything negative the first week.) It might be worth a try in combo with your enemas if they are getting too much. Here’s to a brave new frontier!

  3. JCIN’s avatar

    I wish you well….I dont think anyone has a more detailed blog as yourself on this subject…I commend your efforts to heal.
    Thankyou for letting us know how you go.

  4. admin’s avatar

    About 9 infusions in now. I’m still having a lot of soreness internally, and it feels like my rectum is inflamed. But I’m also still having solid stools, albeit skinny, and my appetite has come back. I’m 12 days out from the antibiotics, so a great improvement over last time, when I started to regress after 5 days.

    Just wish my rectum felt better. Sigh.

  5. Jenna’s avatar

    Just wanted to let you know that your blog has been extremely helpful as I’ve researched Helminth Therapy… I have UC and just started whipworm myself. I’ve made a blog as well and linked your blog on mine, I hope that’s okay 🙂 Thank you for your help– I really hope your recent efforts with the fecal transfusions begin to work for you!

  6. admin’s avatar

    @Jenna, thank you so much. This means a lot to me since I get much criticism about how I’m turning people away from the therapy, and how I’m responsible for other people’s suffering because of it.

    I always intended to be honest about what I go through, the ups and downs. I’ve also been told by some people that my blog was instrumental in convincing them to try this, since I obviously am not an advertisement for companies involved in the therapy.

    I REALLY wish you success with the whipworms. May you forget you ever had UC, and get no side effects, and become able to travel and eat anything!!

    My IBD creed.

  7. Charlie Curtis’s avatar

    hey! very brave of you! i suffered for five years with chrons colitis. i struggled from 175 to 110 lbs over the course of those years. i tried almost every treatment in the book -scd, antimap, remicade, sterroids (gahhhhh steroids hate them) then started doing fecal infusions. i’m now 2 years symptom free. if your interested in my journey and what were doing in terms of spreading the word send me an email! we did everything very differently from borody even though he’s been an amazing support system and a great friend. you can email me –

    at.charlie@gmail.com

  8. Dave’s avatar

    Poop transfer. lol.

    I can tell you a much, much better way.

    Go to Custom probiotics.com and get the 4-strain bifidus powder.

    Use that for your implant using a 3/8 round-tip colon tube bypassing the rectum. Laying down, post enema, before bed. Retain overnight.

    2. Get some real kefir grains.
    google: toronto advisors kefir grains
    or
    google kefir lady.

    Do not use grocery store kefir. Not the same.

    Culture the kefir in raw goat or cow milk only.

    Add the following in the kefir:

    goji berries, mulberries, raspberries, blueberries, sunflower seeds, pistacios, raw cacao, raisens and cashews.

    Fill cereal bowl half way with kefir.

    Stir in tablespoon of flax oil with fork. fill bowl with condiments listed above. Top with tablespoon of colostrum powder.

    Consume the kefir everyday.

    Peace. Write me tell me how it works.

  9. Laraine Stegemann’s avatar

    Hey there! I’ve just stopped by to thank you for this great blog! Keep going that way.

  10. Eli’s avatar

    hi,

    thanks for the brave honesty.

    I have been struggling with UC for some time now, and i’m wondering how you have responded in the past year?

    warm regards

    eli

  11. admin’s avatar

    IVIg has been helping me greatly, about 70%. The 10 hookworms I added in December helped bring that to 100%, but then I killed them in late April thinking they were making me too magnesium deficient. So now I’m regressing, and have to up my IVig dose and move it closer together. I also try to do SCDiet, but have cheated a lot. VSL#3 and Florastor (e. Coli Nissle) I take every day, but the hookworms are more powerful.

    I’d consider fecal transfusion again, but with a colostomy now, it seems too hard. Good luck to you.

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