I am currently in the study that Dr. Aroniadis is leading that you referenced in this edition of your newsletter. Here are my findings so far:
FECAL MICROBIOTA TRANSPLANTATION FOR THE TREATMENT OF DIARRHEA-PREDOMINANT IRRITABLE BOWEL SYNDROME
The objectives of this study are (1) to determine the efficacy of fecal microbiota transplantation (FMT), given as oral capsules, compared with placebo for the treatment of refractory diarrhea-predominant irritable bowel syndrome (IBS-D); (2) determine the impact of FMT on the intestinal microbiome of patients with IBS-D; and (3) assess the safety, feasibility, and tolerability of FMT for patients with IBS-D.
This is a double blind placebo study. Which basically means that I will either initially receive the actual pills or placebo, then 3 months later, receive the other.
As everyone knows from my prior posts on this blog, I have patiently (well, not so patiently) been awaiting the start of the holy grail of all protocols to commence. Yes, THE FECAL PILL TRIAL AT MONTEFIORE HOSPITAL!
I started researching this procedure a little over 2 years ago, and began talking to doctors in NYC about this trial in February of this year. 5 long months later, I was hoping that I was on the precipice of a total healing.
This is what transpired..
Prior to my departure, I felt butterflies and major trepidation. Why you ask?
A variety of reasons, including but not limited to:
a.) What if it didn't work?
b.) Would I almost pass out on the long 5 hour flight to and from NY? In the past, air travel has been quite debilitating and has triggered some horrible IBS symptoms and attacks.
c.) How would I eat during the flights? Remember, I need to eat every 2-3 hours and the TSA is quite challenging when trying to bring food and liquids on board, despite doctor's letters and my failed pleas. They also don't truly offer gluten and dairy free options for purchase on board, despite literature they promote to the contrary.
d.) Sleeping in foreign beds, the change in time and various air/allergen issues could make my stay in NYC and New England almost impossible.
e.) Would I get the pill or the placebo? If I received the placebo, I would have to wait 3 more long arduous months before I might find relief. If I received the pill and didn't get better, medically, I would be out of options.
f.) Cost of the 6 trips over the next 6 months and the toll on my body.
g.) FMT is both the holy grail and the end zone…there's nothing left.
For the reasons listed above and a plethora of others, I actually went back and forth about getting on the plane and traveling to NY and starting this process. Then there were concerns about the protocol itself, which included 5 days of:
*Taking Nexium before breakfast, despite being diagnosed with extremely low stomach acid (Nexium would reduce my stomach acid levels even further). "The nexium is given because gastric acid can kill the bacteria that is ingested during the FMT. It is a standard protocol that has been adopted when FMT is done by the upper/oral route."
*3 days of adhering to a clear liquid diet from midnight to 11:30 a.m each morning, followed by a 5 hour fast before I could eat anything..
*Taking the actual 25 capsules (Pill or Placebo?) for 3 days.
Of course in retrospect, all of these are only minor concerns when compared to the doctors repeatedly reminding me that "…you are taking these pills at your own risk. We don't know if 5 years from now another illness or disease, that wasn't tested during the screening process, might show up from ingesting someone else's stool."
Could I get Alzheimer's? Parkinson's? Some strain of parasites that went undetected? There are a thousand possibilities, since many things don't initially show up or appear during the vast testing that is done for donors.
I decided to go anyway!
I did this because although most people believe that IBS is only a minor hindrance, for some, it can alter their entire lives.
While many people are able to spend money on vacations and trips, electronics, and concerts, and other luxuries, I'm spending over $200 a week in food and even more in supplements just so I can survive. I suffer daily, moment to moment, and the stress from work and the elements can be almost unbearable. I'm just trying to keep this demon at bay.
So on Monday, 7/13 at the crack of dawn, I jumped on a United flight where I felt nauseous and bloated for 5 hours. Then I picked up my Priceline booked vehicle and drove about an hour to my first 3 destination's: supermarkets.
Prior to flying out I researched where the closest Whole Foods, Trader Joes and Fairway markets were located, because I have to adhere to a very strict food regimen. Any deviation from this could signal immediate doom in the form of bloating, diarrhea, and dehydration as well as constipation, shortness of breath and distension.
After spending $300 in food to survive the trip, I drove to my aunt's lovely townhouse in Nanuet. Thank God for my aunt and her hospitality. Without her help, I would not have been able to complete this trial.
poo-enema
After hugging and kissing her and my two cousins, I began cooking and cooking and cooking. That's what I do. Half of my life is spent preparing meals. After the stresses of my current job took over, my guts went crazy. Preparing food and finding a quiet place to rest my head, are the only ways to keep the IBS attacks at bay.
Then I slept. Well, actually, I attempted to sleep. The 3 hour difference made it impossible for me to fall asleep before 3 am (EST).
The trial began the next morning – 7/14.
I was told that I was going to receive 75 capsules (either stool via defrosted capsule or placebo), which combined amass a total of 50 grams; this was determined because of the last study performed by Dr. Brandt and Dr. Aroniadis.
Prior to arriving I was asked to complete over 30 blood, urine and stool tests, as well as approximately 100 pages of questionnaires and personality tests. I guess my results all came back within the spectrum allowed, because here I was.
Over the next 48 hours (I would have 2 follow up visits on 7/15, and 7/16), I was asked about 100 questions, all relating to the questionnaires and my medical records. After finalizing all the data, Dr. A and the three Medical students who were present administered the capsules.
That's a whole lots of pills to take at one sitting. 25 cocoa butter encapsulated pills will a glass of water. Gulp, gulp, gulp 
poop-pills
Here's what transpired:
1st and 2nd day some increased bloating and significant gas. VERY SIGNIFICANT GAS.
On the 3rd day, I suffered morning bloating and yet more gas again plus constipation. I had small stools and 1 episode of explosive you know what which could have been from all the orange and yellow jello, plus the chicken and vegetable broth I consumed. It also could have easily been a result of taking the nexium for 5 days.
I was told to continue with my usual eating regimen.
As documented, I've tried hundreds of supplements, bone broth recipes, a variety of diets – SCD, Low Fodmaps, Elimination, Elemental…you name the acronym, I've tried it.
For the next 7 days I was told to document my litany of symptoms using a FMT diary including temperature and Bristol stool chart.
On the 4th and 5th days I actually felt much better. My guts didn't really bother me that much at all, although I was extremely careful about what I ate and when I ate it; and I worked out daily.
I originally believed wholeheartedly that I received the actual fecal pills. My immediate signs of constipation, extreme flatulence and other unseemly symptoms were not necessarily the same as those I suffer from daily. However, now I am not too sure. The cocoa butter used to encapsulate the pills could have triggered them, as could have the nexium, liquid diet and or the tough travel schedule I had just endured.
The doctor and medical students have no idea whether I received the pills or placebo, so they were unable to draw from any resources, and I am now left wondering…
7 days after the final 25 capsules were consumed, I went back in for a follow up. The doctor checked my vitals, did a brief exam of my breathing and my abdomen (for bloating) and then she gave me my follow up protocol for the next 30 days. It included a diary and schedule for my next 5 visits.
I flew back to Los Angeles on Friday, enduring the loudest flight ever as well as uncomfortable and claustrophobic seating conditions. I almost passed out during the first hour of the flight, and stood by the porta potty in the rear of the antiquated aircraft I was on. I honestly didn't think I was going to make it…I ran a fever of 100.2, was extremely nauseous and unwell for the entire 345 minutes on board that death trap.
I go back to NYC on 8/15. No more pills will be administered or taken until the 4th month, when a "changeover" (where I receive the other batch of pills) is scheduled. At that time, I will once again follow the original set of rules which include the litany of 30 plus stool, blood and urine tests, questionnaires, as well as ingesting the nexium once again for 5 days, the liquid diet and fasting protocol.
Today, I am left to wonder if I received the actual pill or placebo because I am still not better. The brief 2 day period of 80% symptom relief came and went, and with that my immediate hope for perfect health.
I still believe that I will be healed and that this horrifying 7 plus year odyssey will end. I know that someday soon I will wake up without a heating pad on my stomach and having to greet the dawn with sadness.
I will continue to document my journey…every day believing that today is the day that Michael Motta returns and my light reappears.
Until then, God is with me, and I will continue to wage war against this insidious condition…
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Fecal Pills
