fecal transfusion

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Well, the fecal transfusion failed to keep my CRP down.  Last time I checked, a week ago, it was 16.   And things are worse now, so I’m sure it’s even higher.  I don’t blame the fecal transfusions, since before, when I tried to come off antibiotics, I only made it 5 days without it descending into mushy stools and nighttime trips to the bathroom.   The interesting thing is I’m still having formed stools and almost no mucus, but what’s scaring me is a weird pain that feels right under my vagina, and a very full and inflamed feeling rectum.  I ignored too many symptoms last Fall waiting for the worms to work and ended up with 3 abscesses, and I don’t want to go down that route again

So today, relucantly, I go back on antibiotics, and I guess I’ll never see what the hookworms that reside in me are going to do.

I’m going through the hoops to try Prochymal.  I have a nurse today (that I’m going to cancel) come show me how to do Cimzia.  I think I’d rather try stem cells then another biologic, since Humira only made me worse.

I went to a new naturopathic MD, Dr. Cowan in San Francisco.  He has a protocol of supplements and drugs (all of which I’ve tried), including LDN, GAPS diet, fermented turmeric, boswellia, s. boulardii, e. coli Nissle, and Biokult.  I started 3 mg. of LDN two nights ago, couldn’t sleep the first night and felt a little happier yesterday, last night was fine, no side effects.  I tried LDN in the past, got it wrongly compounded, switched to Skip’s pharmacy and seemed to get better, then I broke out in a weird rash all across my butt, it was thought I was allergic to sulfasalazine so I stopped that, made a yogurt making mistake, and flared miserably.  So I came off the LDN to go on Prednisone.  I tried it again later and it didn’t seem to help.  But I’m always open to trying things a third time, even if I’m despondent about it.

He took one look in my mouth and said, “I don’t think you’re capable of fully healing with how many amalgams you have in your mouth.”  I have 7: 3 of which are huge. I’m pretty sure they were all put in the year I got Crohn’s, so it’s always been there on the back of my mind that mercury poisining is contributing to the Crohn’s.  The interesting tidbit is I always itch when I wear anything other then gold in my ears.  If  a closed wound reacts to metals, imagine what my body does to mercury vapors coming out constantly when I breathe and chew?

It’s something I’ve been wanting to do for 13 years, but I was either nursing or pregnant, or too poor.  I thought I was going to get a refund from AIT in the middle of March, but I have no idea if this is still happening.  It will help pay the $5400 it will cost to get all of the mercury replaced with composites, but the trips to SF twice a week will add up fast, especially as we currently have no car.   I’m supposed to go up to San Francisco twice a week to start the detox process.  Whether or not it will make any difference remains to be seen, but Dr. Cowan told me to expect that it will take 3 years to fully rid myself of the mercury.  I guess I won’t be having another child.

To say I am disappointed in worm therapy and everything else is a huge understatement.  I still think the right combination of worms will help me, but how the hell do I get them into me without a severe reaction?  And why is my body now churning out anal abscesses when it never has before except the first time I was diagnosed with Crohns?  Why am I now dependant on antibiotics, and need something like Cimzia or Prochymal just to get me off of them?

I love reading success stories.  And I’m insanely jealous of those with almost no side effects.  If that were me, I would redose in a heartbeat.  But the side effects from TSO were so severe, even 60 mg. of prednisone didn’t curtail the flare for days, and later, that’s when the abscesses formed, after coming off the pred.  I feel like it’s happening now in another location, so I go back on Augmentin full dose, and pray that it doesn’t cause some superbug that I will never get rid of.  I still plan on doing fecal tranfusion after coming off the antibiotics again, since we’ve got the hang of it and it’s no big deal anymore.  And the best way I know to restore the colonic bacteria.

I have to have a CRP > 5 and a CDAI over 250 to qualify for Prochymal.  I’ll also have to do a CT scan, which I hate, since I already had 2 this year.  But it seems like a way to temporarily alter the immune response, heal tissue, etc.  My UCSF GI has one patient who was in the earlier trials who failed Humira and Tysabri, who is now in remission 2 years later and considers herself “cured”.  I’ve also read threads on healingwelll that say it only lasted 3 months, but I’m really just buying time to get through the initial mercury detoxification, and perhaps redose with worms, have the LDN have a few months under my belt, and see if the e.coli Nissle + diet can make any difference.

I’m losing weight, which I hate.  My formerly lovely 165 self is down to 150 and I look skinny.  A diet of broth and soup isn’t helping.  Dr Cowan wanted me to go back on the intro diet for GAPS for 3 days, then do stage 2 for 3-7 days, etc.  The antibiotics will probably make me nauseous again, which is a plus when you’re not really thrilled about your food.  My daughter’s birthday was yesterday, and I watched my family enjoy a pizza, flourless chocolate cake, and coconut ice cream, while I ate my 6th bowl of the same beef stew and felt the strange pain forming under my vagina in my rectum, and thought of everything I’ve tried and failed over.  I woke up in the middle of the night, since my daughter slept with me and I didn’t want to show her my misery, and cried and cried at everything that hasn’t worked.  And then went back to sleep and dreamed, forgetting my pain for a little while.

Oh well.  I carry on.  We went to the SPCA yesterday to find a puppy.  There was one that was perfect; an Australian sheppard mix who was so friendly.  When we asked to see her, we were told she was on a 24 hour hold and was going to be adopted tomorrow.  All of the other dogs were either chiuauas or golden retrievers.  We did find a possible cute other one, but were told it was extremely shy, so wouldn’t fit in with our social lifestyle, with neighborhood kids coming and going all the time.  On the way home, my daughter cried and cried and said she’s giving up on finding a dog.  I told her that we had to keep trying, and reminded her of the little cross she once picked out with my mom when I was doing really badly.  It says “Never Give Up”, and when I’m crying at my extensive failures stacking on each other and still sick, she reminds me that I should never give up and some day I will be well.

It’s hard to believe after 24 years of disease.

What’s worse is being in remission for over 2 years on a small handful of worms, then going an entire year of redosing and getting worse and worse.  If they never had worked, it would have been easier.  I’d like to think the mercury amalgams are preventing my whole healing, but then why would the worms work for a while?  Why would I have been in remission in the past on diet alone?   I don’t have severe Crohn’s, I have moderately severe Crohns (as if that’s any better), but I thought if I just kept some worms in me, ate the right diet, and did a fecal tranfusion,  exercised, meditated, walked barefoot in my garden, etc, that I could approach some semblance of wellness.

So it’s back on the antibiotics, searching for “what’s next’.  In 2007, I had the choice of Procymal or worms.  I chose worms.  Now I’m having to choose Prochymal.  Oh well.

Never give up.

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?