IBD-A MOM's guide to survival
I'm pretty sure that's a line from a Soul ll Soul song...but if you aren't a dancing queen of the nineties, that's probably a reference lost on you! ;)
Well, it's been an interesting week! Since returning to Victoria last Saturday, we kinda hit the ground running!
We spent a low key Mother's Day doing laundry and hanging out around the house after a lovely brunch at my favorite breakfast spot in Victoria, The Village. That's us at brunch in the photo. :)
Then, it was pretty much back to reality! Maddy was back to school and full of energy! She has been routinely difficult to wake up in the morning, often sleeping until 10am and going to school late, if at all. Not this week! She was up by 7:30am every day, hungry and full of energy and made it to school on time, every day this week! She easily took her meds with no stalling and no complaints. On Wednesday she rode her bike about 20km and ran around the beach all day on a school field trip. She then went to her guitar lesson, immediately followed by fueling up on Thai food before going to her 4H Club meeting and spending the last half of the meeting running again during a raucous game of tag. She didn't get to bed until 10pm that night because she was so wired!! She never would have had the energy to do any of these things before the FMT so this is all really amazing and really scary. The scary part is that our home treatment might not be as good as our doctor's treatment. What if my poo isn't as powerful or pure as the donor poo? These are all questions that will soon be answered...and it's scary.
On Thursday, Maddy had a bit of an off day. She went to school and her energy level seemed ok and after school she had a friend over and played pretty rowdy for several hours. After her friend left though she said she had a headache and spent the rest of the evening on the couch. This concerned me at first but she still ate a lot of dinner and said she had no pain. She had complained twice this week of her "normal pain" which hadn't existed in Portland and had one stool that was slightly less formed with a small amount of mucous so when her energy went down, I got concerned. I didn't feel great that night either so we both went to bed earlier and we all slept in the next day as Scott and I had the day off and Maddy had a Pro-D day at school. After hanging out in bed reading all morning, she bounded down the stairs full of beans again and ate a huge breakfast and had an awesome formed BM!
So, I'm chalking that low energy blip up to potentially battling a bit of a flu bug as she seems fine now! She had a friend over for a sleepover last night and they are up running around as we speak. It is so easy to get worried every time your child has an off day. As anyone with a chronically ill child will know, you are constantly on pins and needles. Will this medicine work? Will this therapy make a difference? She seems great today, will they go back downhill tomorrow? How many times did she go to the bathroom today? Is she in pain? And on and on and on...
I've been in the position so many times where I thought "this time she's in remission" only to be disappointed when symptoms return. It's a constant state of worry and you watch their symptoms and behavioral changes like a hawk. And it is SO hard sometimes to tell the difference between just being a kid and having normal mood swings, cold and flu symptoms and the off days we all have from time to time.
So, with FMT it is no different...except, for the first time EVER, we have a treatment that we know works, has no side effects and is completely free and accessible, NO MATTER what. The FDA can shut down doctors and clinics (which is happening and this is a whole other post) and my poop might not be as powerful as her donor's, her symptoms could return. But now I know that (at the very least) there is a 7 year old boy in Portland who's poop is my kid's medicine. Which means that many other people's poop can be her medicine too, and hopefully mine will be the medicine she needs.
I have now gone through all the testing necessary to clear me as her donor. 3 fecal test and whole host of blood tests, hopefully I don't have some kind of weird parasite picked up in our Central American travels! ;)
I've also spent the week gathering supplies for our at home FMT treatment. Now THAT was an interesting exercise in weirdness at its finest. I went to excess cargo to buy a "dedicated poo blender" (so, yes it's safe to come to margarita night at our place! ;)
I had to search the city for empty enema bottles, which apparently don't exist around here so for now we will be purchasing the generic enema kits and emptying the bottles to refill with poop. I have assembled my "medicinal poop factory kit" (as I am calling it) to make it seem less creepy to Madison and to myself! It's all sitting in my bathroom in a large Tupperware bin, ready to go. As soon as I get the ok next week, we will begin twice weekly infusions for 8 weeks.
Oddly, (or perhaps not) Madison doesn't seem at all concerned. For one, she trusts me. But also, she knows that this works and that she's never felt better. That is all the convincing she needs.
Yesterday, we received the news that we have been waiting for. For all the improvement in symptoms, appetite, energy, bowel urgency and frequency, etc. the real proof of success lies in the numbers. (For doctors at least)
C-Reactive Protein (CRP) is the test that measures inflammation in the body and is the most common blood test marker used to monitor inflammation in IBD patients. The normal range is 0-5. Maddy's levels have been as high as 97 (yikes!) and never lower than mid 20's since we've been testing her CRP. Her CRP was 45 prior to the antibiotic pretreatment preceding her FMT and it was 37 on the Tuesday prior to her FMT beginning. Not as insanely high as it had once been, but not good either. She had just come off the prednisone less than a month prior to the FMT so that number was better than it had been in the past but it was steadily climbing without the prednisone in her system.
Yesterday, the news we were waiting for finally came in. In just 2 weeks of FMT, her CRP was at 18. It had come down 19 points in less than 3 weeks. This is INCREDIBLE news. This is confirmation that this works for her. On paper.  The three of us actually did a group family happy dance, it wasn't pretty, but man it was satisfying!! ;-)
What ever the coming months and years hold for us, we know this works.  IBD feels at times like a life sentence of pharmaceuticals and knowing that there is a real viable alternative living in each and every one of us, it's like a real life miracle.  I've said it before and I'll say it again: we will do it as often and as long as we have to to keep Maddy healthy.  I have never been so relieved in all of my life. :)



05/18/2013 2:19pm

Way to go you guys!!! Soo excited to hear the good news!! Thanks for continually posting these updates. I sip my coffee and read with eager anticipation. :)). After you do your hone FMT this week, I'm wondering if you'll have any time to Skype perhaps next weekend sonetime? We are getting closer to doing ours as well. Thanks again for the update. :))

05/19/2013 12:19am



Leave a Reply