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.
 


Comments

06/19/2013 6:18am

Hey there! I may be totally out of line for saying this, but my son just had FMT on may 31 (different reason) and our doctor is one of the ones that has been doing this for years. He actually has a whole crew of "stool donors" that come in often to donate, and he is using their stool for a host of people. Didn't know if you thought of that already? Probably... We used my husbands stool, but the doctor informed us that my husbands stool would be the last fresh stool that he would use as his donor base has grown and it is easier to use stool already collected.....

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Rebecca Kirstein
06/20/2013 9:55pm

Thanks for your comments Danielle! Not out of line at all! Where are you located? Who is your doctor Where is this donor bank? We don't have any doctors doing fmt in the entire country and certainly no donor banks as far as I know...I'd love to know where this exists!
I'd love to hear more!

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05/29/2014 2:13pm

Ironically the night that I first tried fmt was the evening that the Canadian Study results came out negative for fmt. I personally think their protocol was flawed. I think they performed fmt twice per week for 6 weeks. This is not scientific but imagine if you only took one dose of an antibiotic once per week for 6 weeks. It wouldn't work. I did fmt for five days in a row and am going to continue for 6 weeks.

I am almost symptom free after three weeks. (ws traveling so couldn't do it for two weeks. Laying here now in bed, having started again.

I have had UC for 20 years. Wont give you all the heartache details but Ive taken just about everything and had good times and bad….mostly bad though.

When I say I am close to 100% I am not exaggerating. Im hoping its not just a dream. I'll keep you posted.

Until they ( the same medical establishment that has failed us for so long) develop a real protocol, all of this is guesswork.

best of luck to you and your daughter. My advice. Use the stool promptly. I don't trust the idea of freezing. My guess is that it kills some strains of good bacteria. Make the slurry more of a liquid than of paint. The liquid seems to go further up in my intestine and is very easy to retain. Do it every day.Also I only use about 40 ml. I don't think you need to use a ton. I have been using a tap water enema before the fmt to clear me out so the enema can go further up my colon. Again, I am not sure if this is necessary but for me it works. Try to go for 6 weeks straight. Again, none of this is science but for me it has worked…so far. Oh and by the way, before fmt I could not even think about eating dairy. Two days ago I ate cheese for the first time in about 5 years. Ive also been eating milk chocolate every day. I know…Im pushing it.

My donor is my 11 year old son. What is interesting to me is that his poop barely smells. His twin sister who I was going to use first has poop that smells fairly bad and she gets gas from dairy. Again, there is no science here, just an observation and I don't know what it really means in the end.

I had perhaps the worst gas on the planet before fmt. I barely have any gas now and my poop barely smells….much like my sons.I know, it really is crazy.

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