Today we hit 4 months off of medications, post FMT!  In addition to this, we’ve passed a ‘stress test’ too!

Ashley’s adventure on a sustainable living farm in Hawaii came to an abrupt end.  She was under a great deal of stress as she tried to maneuver shipping all of her things home (including her car) and finding someplace to stay with only $50 in her checking account.

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9 weeks!  We’ve made it 9 weeks with no UC symptoms returning!  It’s still far from conclusive, but we remain cautiously optimistic.

Outside of the UC symptoms, Ashley has always struggled with candida.  Literally ever since she was an infant.  She did let me know she’s having some issues with this again.  She’s starting to take her Oregano oil again as well as some probiotics.

Candida isn’t related to UC…it’s a separate issue.  Because anti-fungals are used, it won’t affect the bacteria therapy we’ve done, thank goodness.  From my research, however, I understand that it can slow the healing of the UC, so we will be working to get that back under control.  I suspect the increase is due to her current diet.  She’s living on a sustainable farm for 6 months, having a life experience.  The diet there consists of a lot of fruits and veggies, carbs and not a lot of meat.  They also make their own beer.  I suspect the fruit, carbs and beer at her access is probably the reason for the “uprising”.

I had fully intended on being better about posting these updates, but life gets in the way. I am SO happy to report that Ashley is doing fantastic! She’s been officially completely weaned off of her Sulfasalazine for about 3 weeks now. She’s had no symptoms at all. Typically it takes just a few days of being off of her meds for her to feel her symptoms start creeping back.

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It seemed like forever to lead up to doing the FMT.  The whole process went a lot smoother than any of us anticipated.  Now comes the hard part.  The waiting.

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This post is intended to sum up everything we learned and how we worked through this process.  Hopefully it can serve as a guide to anyone looking to try this process themselves.  Here are the steps we took.

1. Research.  Read about this procedure.  Learn about all of the options.  Learn from other people who’ve tried it with or without success.  With alternate healing methods, you are going to have to be the expert and educate your doctor.  Present them with studies you’ve found, papers to read, etc.
   • Friend ‘Sally Brown’ on Facebook – these people have a wealth of information to share.  They are all sufferers of IBD or family of.  Many have tried FMT and will gladly share their knowledge and resources.
   • Visit The Power of Poop website, TONS of information.
   • Read Ulcerative Colitis from the Bottom Up: A memoir of home treatment with fecal bacteriotherapy by Vivek Apte.
   • Here is a recent study, at the time of this writing, on FMT and C. Diff.:  Netherlands Study of UC and C.Diff
   • Here is a recent study, at the time of this writing, on FMT, UC and children/young adults:  Pub Med
   • Search terms for Google: FMT, Fecal Microbiota Transplant, Fecal Bacteriotherapy, HPI, Human Probiotic Infusion, Poop Transplant.
2. Find a doctor.  I strongly recommend finding a medical professional that will at least help you make decisions along the way (each case of UC is different with it’s own set of challenges), and to help facilitate the donor testing that I consider extremely necessary.  If your conventional GI doctors won’t help you, find a naturopathic doctor.  They are more likely to be open to alternative treatments and have the same privileges that conventional MD’s have.
   • Power of Poop has a list of doctors that do FMT.  If there isn’t one in your area, make some calls to local GI’s and ask.  Remember to try naturopathic docs too!
3. Find a donor and get them tested with the help of a doctor, according to the guidelines in this doc: HPIHomeInfusion.pdf
4. Purchase your supplies.  Here is the list of Supplies we purchased.
5. Two weeks prior to beginning the FMT’s:
   •  Put the patient on a low fiber diet/no cured meats (to starve the gut bacteria) according to the HPIHomeInfusion.pdf document.  Begin antibiotics if you are choosing that route.
   • Put the donor on a high fiber/no cured meats diet according to the HPIHomeInfusion.pdf document.  Here are some high fiber recipes we enjoyed: HighFiberRecipes.pdf
6. When you are ready to go, you’ll need the following:
   • 1 day prior, you want to do a bowel lavage.  We followed these instructions: ColonPrep.pdf.  Some folks have more sensitive systems and opt to just do 24 hour liquid diets with no lavage.  Use your doctor and your instincts to make the decision that is best for you.

**Thought: Retaining seemed to be easier at the beginning with the empty colon.  I wonder if it would be beneficial to recleanse the colon after 5 days, to start with an empty colon again for the last 5 FMT’s?**

• Donation Instructions for the donor: DonorInstructions.pdf
• FMT Preperation Instructions: PreparationInstructions.pdf (We hung this on the bathroom mirror with tape).  These are instructions written by Vivek Apte with slight modifications that we found helpful for our process.
• Recipient Instructions: RecipientInstructions
1. Switch the recipient of the FMT’s to a high fiber diet as soon as the infusions start and begin taking the Probioplex Intensive Care.  My suggestion is also that the recipient continue to avoid processed/cured meats for a minimum of 3 months.  Our doctor recommended avoiding alcoholic beverages for at least 2 weeks following FMT.

OUR COSTS :

Last day!  What an experience.  More so for poor Lee who had to stick to an unfamiliar diet and make the infusions, and Ashley who had to suffer the infusions.  I am so proud of my family!  Ashley managed to hold this last infusion for 3.5 hours.  Lee was late today and Ashley and I are taking a dance class Thursday evenings. She was not confident in retaining during the class.

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We are almost done!  Lee is very excited that after his donation tomorrow, he can splurge on Easter candy.  He’s done so well managing those cravings, which is a huge feat for him.  Anyone who knows him will tell you he eats an insane amount of candy on a daily basis.  Lee and I are both pretty surprised there were no withdrawals!

Ashley is also very excited to be finished with this process.  She has a life to get back to and school to finish up!  She’s also impressed me with her willingness and determination to make this work.

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A busy day yesterday threw me off of my game and I forgot to post.  Ashley infused 2 slightly thin paint consistency infusions today.  She was able to hold for 5.5 hours.

We still haven’t seen any negative effects, which is great.  She is noticing that her bowel movements are smelling differently now.  More like dads.  This has been documented many times by other folks who have done FMT.  I see it as a good sign!  I’m hoping it means that his biome is taking over!

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Lee was back on track today.  We had a two bottle, paint consistency donation at about 11am.  It seems like Ashley has more difficulty retaining when she’s had a day off.  It’s not a very scientific observation, since it’s just been twice.

She had a bowel movement prior to her infusion, as usual.  Today she had a lot of urgency and spent most of her retention time lying down.  She managed to hold for 4.5 hours.  We’ll take it!

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Weekends always throw Lee off of his schedule and today was no exception. No donation today. Tomorrow ought to be plentiful!

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