IBD-A MOM's guide to survival
 
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this quote resonates with me now more than ever...
Well, here we are at day 17 of the home FMT. I was hoping for better results but it is appearing that the power of my poo ain't so strong. At least not for Maddy. As we all know by now, not all poo is created equal. According to my favourite ND, Mark Davis, you can have all the makings of an awesome donor and just be, well...not so awesome. I have daily regular formed bowel movements, great physical health, diet and lifestyle, I don't take any medications and I passed all the tests with flying colours. For some reason though, Maddy's body is not responding to my bacteria in the way that we'd hoped. At first, it seemed as though it might be working. She perked up a little initially but it was short lived and for the last week or so, the decline in her health has grown more obvious. She is becoming more lethargic, her appetite is declining and her stool gets less and less formed by the day. Sometimes the consistency of the stool can be a hard one to gauge. especially since she has been retaining the enemas for less and less time the farther along we get. When you blast her colon with liquid poop and its coming out 3-5 hours later, it's pretty hard to know if its watery because well...its watery. Or because her inflammation is increasing. We also started seeing the recurrence of first mucous and then blood.
I spoke with Mark Davis yesterday to confirm what I already knew. This just wasn't working. I already knew that our next course of action would be to switch up the donor.
It is definitely disappointing to do this every day for 17 days only to find out it hasn't been helping. I'm a silver lining kinda girl though and I am so grateful for that little boy in Portland and Dr. Davis because I know beyond any doubt that this works for her. If there is one donor out there who is the right match, then there has to be another. With any luck, that donor will be in our family or close circle of friends. So, we are testing the next in the line of potential donors..who will it be you ask? I will keep you in suspense....
Under the heading of things you never thought you'd ask your family and friends: "So, uh...Dad? You doing anything with your poop? No? Great! Pass the salt, will ya?  We don't yet know if our potential donors will make suitable donors until the testing is complete and even then, we won't know if their samples will work any better than mine. The science of this is so new and so much of it is unknown to even the experts, that it really is a giant guessing game.
In the meantime, we are in a holding pattern. It is really hard to watch Maddy get sicker again. And it's even harder knowing that my poop isn't her medicine. Not only would it have been logistically WAY easier, it is also a little upsetting knowing that my poop ISN'T her medicine. I CAN'T cure her. At least not alone. That, and my HUGE ego would have loved the thought of having super healing poop powers. ;)
In the meantime while we are testing our next donor, I will take a bit of a break from poop running my schedule, my social calendar, my life. I'd rather be continuing with a healthier child but sometimes you've got to look at the bright side, however dim it may be. I'm not going the lie, it was kind of awesome to poop today and not have any "prep" before or after.
Our daily routine has consisted of waking, me pounding coffee if I didn't have to "go" right away, prepping for FMT, collecting the sample, processing it, administering it to Maddy, followed by abdominal massage and acupressure for her. Then I make her a healthy homemade breakfast and serve it to her while she lies still to absorb the treatment. Unlike in Portland, she has had a lot more trouble retaining the treatments and has often needed to lie still for an hour or more each time and most recently for several hours.
By this time, I have cleaned up from breakfast, FMT and managed to get myself showered before heading out to get her to school for the last few hours of the day. I'm able to squeak in a few hours work before picking her up again at 3pm. Then more work, Maddy's activities, walk the dog, dinner, cleanup, bedtime, laundry and more work before Scottie gets home at 10:45.  The poor man gets the worst of me by then and never complains. For that I am grateful too, I have more support than I could ever hope for.   Thank god I am self employed! I have no idea how anyone with a real job could pull this off!!
Needless to say, a few days off from this schedule will be a welcome change but I know that Maddy's health will continue to decline with each passing day so I am eager to start again with a new donor as soon as we possibly can.
Now, one might think that the prospect of a third donor's poop might wig her out a little. Oddly, no. I pitched her the idea today and you know what she said to me? "Well ya mom, good idea. No offence but your poop is well...kinda the shits!" Then she smiled that coy 10 year old smirk that says "I know I'm going to get away with being totally inappropriate because I'm so damn cute and funny. "
And she did get away with it. Not because it was cute or funny (which it totally was) but because it was brave. Just like her.
 
 
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We started the home FMT on June 1st.  I planned to start on a Saturday morning so that I would have plenty of time to prepare.  We all stayed up late the night before so it was a late start to begin with that Saturday.  Maddy was intent on going to the Oak Bay Tea Party (a local fair on the beach) and I was fine with that, knowing that if we waited to start the FMT when we had a "quiet day at home" it would likely be October before we got started!
I had previously gathered all my supplies, including: a dedicated "poo blender" (thank you XS Cargo!), a rubber spatula, a double wire mesh strainer, disposable cups, Saran Wrap, cleaning supplies and enema bottles.  I searched high and low for empty enema bottles and called every medical supply and drug store in the city.  Apparently, this is not something that exists.  Who knew?  I actually have to buy "Fleet" enema bottles, empty the solution and rinse the bottles before reloading them with the fecal slurry (or poo slurpie as Maddy so named it!)  This is particularly annoying since these things cost anywhere from $6-8 each!  I have convinced my pharmacist to order them in by the case and sell them to me just above cost but these things are literally about $2 in the states!  It turns out that not only do we pay more for our bottles of booze but for our enema bottles too!! Yeesh!
Once I had my trusty kit assembled, I had about a week to mentally prepare before we began.  We were waiting to see if Maddy's symptoms would continue to decrease before starting the home FMT.  The usual protocol is to continue home treatment once a week for 8 weeks but we discussed it with Dr. Mark and decided that we would wait it out and watch Maddy's symptoms like crazy.  As soon as she started to get slightly symptomatic, we started the treatment within 24 hours.  Her first symptoms were the occasional mild cramping, slightly softer stools and a mildly decreased energy level.  One of those on their own may not have been enough to start up again but all the symptoms combined were enough for me to know it was time.
This is the part where I WILL get a little graphic (without intentionally being gross) in order to be as honest as I can be about this.  This isn't pretty so if you're squeamish, DON'T keep reading.  This is my reality and the reality of many others and I don't intend to candy coat it.  This shit is gross.  And funny.  If you can't laugh about it, you'll cry about it!  I tend to do both!
That first day of treatment Maddy was very cooperative and even a little excited.  I think she is so convinced of the efficacy of this treatment, it excites her to know that she can and will feel better.  As much as I wanted her to feel better, I can't say I was excited to fire up my poo mixology lab!  As usual, Scott was very supportive and put the coffee on when I woke up Saturday and didn't have to "go."  Naturally.  Why would someone who is frighteningly regular in their bowel habits have to "go" the one time it actually counts?  Don't be silly.
After breakfast and 2.5 cups of over-sweetened coffee, it was finally "go" time.
After I clumsily wrapped my toilet seat with Saran Wrap, readjusting it several times to get that perfect dip in it, I finally got the right fit to it.  You know that perfect "poo catching" position, not too high, not too low...you know the one right?  Oh no, wait.  You don't know.  Unless you are at home doing this too, you probably don't have experience making perfect Saran Wrap "poo divets" to smoothly cradle the ingredients to powerful medicine- that just happens to come from your bowel.
This part was pretty straight forward.  Now as I removed the Saran, being careful not to drop the poop or waste any of it rolling around on the plastic wrap, I moved to transport it into my trusty new poo blender.  It was when I was standing in front of my bathroom window sill, holding the poop over the blender, that I realized my first potentially catastrophic error.  The blender I bought was a small "smoothie" blender.  You know the one.  Well, the opening on this thing was only about 4 inches wide.  Now, I don't know about you but I think I have a pretty normal amount of poop on a day to day basis.  This was clearly a quantity that wasn't going to fit easily into that opening.  Small blender opening.  Average size adult poop.  This could be tricky.  To my surprise, I expertly maneuvered that poop into that small opening without making any mess whatsoever.  I was pretty impressed with myself!  It was at this point that I added my distilled water.  Somewhere between 3-5 oz. the protocol says.  You want the consistency of house paint I was advised.  After pouring and blending several times, I felt my poo slurpie was of adequate consistency.
Now here's the part that nobody will tell you.  I'm not going to try to pretend here that my poop smells like roses but I would say it falls into a normal range.  Fairly bearable, odour disipates quickly and nobody's ever been hurt.   It turns out though, that once you put your poop in the blender, add water and blend several times...the smell of it is intensified.  By like a hundred times.  Ok, maybe not a hundred.  But a lot.  It gets a whole lot stinkier.  I can see why nobody mentioned this part.  Not a huge selling point.
Once I picked myself up off the bathroom floor and stopped dry heaving, I began the super awesome task of straining my poop through the poop strainer.  Now, I can honestly say, of the whole process THIS PART is the WORST.  Without a doubt.  It takes forever. While you are pushing your poop through a mesh strainer with a small rubber spatula into a beer cup, you have time to ask yourself: WTF am I doing?  Has this seriously become my life?  I am stirring my own poop in a strainer right now.  Am I crazy??  And then, just when I thought I had really lost it, I reminded myself of the health and vitality I had seen this provide.  For my own child.  And you carry on. 
So, it turns out that about a 5th of my poop is the fibrous material that won't make it through the mesh strainer, whether this is relevant or not, I have no idea.  I was just surprised at how much of my poop was fiber that won't make it through the strainer even after being blenderized!  Huh.  I've learned something here.  However inane and irrelevant it may be, I found it quite surprising and most interesting.  Clearly.
Once you've got your smelly little cocktail ready to go you need to get that mixture into the teeny tiny opening of the enema bottle.  Potentially catastrophic error number 2: nowhere in the protocol supplies list does anybody mention a funnel of any kind.  C'mon really?!?  Enter supportive Scottie to the rescue once again.  He braved the foul odor (that now took over not only my ensuite bathroom and bedroom but most of the second floor of our house) and fabricated a funnel in no time out of household items.  I was back in business!  Once the enema bottle was filled and the lid tightly secured, I looked around at the mess I had made and realized that the worst was yet to come!
When all was said and done, it took me about 45 minutes to prepare the damn thing and about 5 minutes to administer it to Maddy.  I massaged her belly.  She hung out and read comics and ate lunch in bed.  I washed and scrubbed and bleached my bathroom and my tool kit.  I put Eucalyptus drops under my nostrils.  I needed a drink. 
Then Maddy hopped off the bed full of energy and was off to the fair to play with her friends.  I'm glad my patient found this quick and painless!!!


 
 
After 3 weeks of having a healthy active 10 year old since her FMT treatment was completed, we had our first follow up treatment with Maddy's GI team at BCCH. Without going into too much detail, I will say that their reaction was less than encouraging. We were warned about risks, long term success rates being unknown and home treatment being unsupported and definitely not recommended.
After being a part of the FMT community through various blogs, Facebook groups and direct Skype and telephone support conversations, I know first hand how this treatment can and does change people's lives. The fact that this treatment still remains so inaccessible to so many people and the lack of support available in the medical community, is distressing to say the least.
While I do support the FDA's involvement in investigating FMT in order to legitimize and standardize the procedure, I cannot possibly support their decision to enforce protocol that essentially puts a stop to FMT as a treatment option in anything other than dire situations. This only further enforces the need to do this treatment at home and without medical supervision. In many cases it is a last resort when it should be a first line of defense. Not only that, the only known risks associated with FMT are related to lack of or improper donor screening. Many people can't afford the donor screening and with lack of medical support, screening is very costly-even in Canada.
This further encourages desperate people to take unnecessary risks with their health and the health of their children. I for one am not willing to risk my child's health by administering FMT from anyone other than a screened qualified donor (in this case myself) but I can't say what I would do if faced with a sick child and no other options.
I am one of the lucky ones. I gained access to a doctor performing this procedure who taught me how to do this safely. Madison had completed this procedure exactly one week prior to the FDA's intervention that halted the treatment by her doctor in Portland and all other doctors performing FMT outside of clinic trials in the US.
Not only that, I am a qualified donor, I can provide this treatment to my daughter anywhere, any time. And no one can stop me. Many other people and many other parents are not so lucky. What about them? What options are left? I am left feeling a lot of sadness for those who aren't so lucky. And a lot of gratitude for those of us who are.
Madison became symptomatic again this past week..the signs are subtle but they are there. I have been watching her carefully, inspecting every bowel movement, watching for slight behavioral changes and asking lots of questions...today I asked her if she was feeling as good as she was in Portland. She said "no mom, I am starting to feel not as good. And I'm really tired. That coupled with a few softer stools and some mucousy ones too, had led us to the decision to start the home FMT treatment. I was hoping she would feel better longer but she has had an incredibly solid 5 weeks of good health and vitality. She hasn't felt this good in years.
So, we will start FMT again this weekend. It isn't ideal but it's a FAR better option than more meds. Most importantly, we know it works. And if we have to repeat it every month for the rest of her life, we will. And we will be grateful that something does work. I don't have to give her more medications and wonder if they will work and hope that there aren't more side effects. Because we are among the lucky ones. We have a treatment that does work and there are no side effects. It's free, it's safe and it's accessible. For us. But not for everyone. This has got to change.
And we will do our damnedest to make sure it does.