Glimpses of Me

More than half way through our 10 day process and I’m happy to report that it’s still been relatively uneventful.  Ashley held yesterday’s infusion a full 24 hours to the minute.  She continues to feel happy and motivated.

Lee was able to produce enough donation today for the standard 2 infusions of paint consistency.  Ashley infused at about 12:30pm today.  The first hour was rough.  She reported a lot of “air” being infused today.  She wasn’t sure what she’d done differently, but it caused a lot of discomfort in her lower bowels.  She opted to take some GasX and then to continue to lie down for a while.  After about an hour, things had settled and she was good to go.

She managed to hold today’s infusion until 6:30pm.

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Today was a good day.  Ashley continued to enjoy her new found energy.  She cleaned the house again today and washed her car inside and out.  I’m always so surprised that she can move around that much while holding an infusion.

She’s had some gas, but we are pretty sure it’s due to the fiber as it’s high up in her intestinal tract.  Moving around and being active has been enough to manage it.  I am so thankful that we don’t have food sensitivities or allergies to work around.  I consider us very lucky on that count.

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Well, today was a bust. Lee couldn’t produce enough ‘material’ to create an infusion so we took the day off. Ashley was bummed because she is just wants to ‘get this over with’. Lee was disappointed because it means one more day until he can gorge himself on candy.

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Another successful and uneventful day, which is a good thing.  Ashley managed to have a regular bowel movement before her infusion today, which was good.  I should note that she had been having solid bowel movements prior to starting.  Her Sulfasalazine has been keeping her inflammation down.

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Day 3 and things continue to go well. Ashley held her infusion yesterday for a whopping 22 hours! She didn’t ever feel the need to evacuate and, in fact, had to try and force it this morning as Lee was preparing her next infusion.

I’ve definitely noticed a shift in Ashley’s attitude. When we began this process, she complained about having to miss school, about having to be home resting all the time, and generally just made it known that she wasn’t happy about this, but she’d tolerate it. After a few days of these infusions she has a whole new outlook. She’s now described her time out of school and stuck at home as a “Spring Break”. She’s digging out old hobbies she hasn’t worked on for a while and finding things to occupy herself. She’s even having friends over to watch movies and keep her company. Her disposition, in general, is just happier. She’s mentioned several times that she feels happier. I find it very interesting, as I’ve come across research about UC and depression and how it may all be gut related. I think I’m a believer!

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WARNING: POTENTIALLY GRAPHIC DESCRIPTIONS AHEAD

Day 2!  Ashley managed to hold her first infusion last night for 5 full hours with very little trouble.  This morning’s infusion donation came around 11:30am and was ready for Ashley by 12:00.  Today Lee had enough donation material for two bottles, as suggested.  He managed to get one cream consistency again, but the other much closer to paint consistency.  He’s getting it dialed in.

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Today we finished week 2 of the prep diet.  I wish I could say I’d found more really delicious recipes, but this week was a lot of “Meh”.  We have two more weeks of our high fiber diet to go (Ashley will continue from here out) while the infusions take place.

Today, Ashley did a colon cleanse using MiraLax in the same way it’s prescribed before a colonoscopy.  We used Mango Peach Crystal Light liquid drink mix for flavor.  Ashley said it totally eliminated the flavor of the Miralax.  She opted to start the cleanse this morning and ‘get it over with’.  Lucky us, by evening time Lee had a donation!  We did some research and found that MiraLax stops working about 2 hours after the last drink.  We waited a few extra hours to be sure (Lee can poo on demand, how lucky are we?!).

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So I thought I’d write a post about the foods we’ve been eating for the last week, in case anyone was curious or needed ideas.  We are 1 week into our 2 weeks of preparation diet suggested by the CDD.  By “we” I mean Lee and Ashely, but the rest of us are pretty much following the high fiber diet with Lee as it’s just easier than cooking too many different meals.

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Today we had our final visit with our Naturopath, Dr. Stephanie.  The goal was to go through a list of questions we had for her about our FMT process and to get the official leave of absence letter that Ashley will need for school and work.  It was an excellent visit, as always.

Here are the questions we asked and the answers we received, paraphrased of course.

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We’ve been patiently waiting for the right moment to present itself for our FMT.  I had fully intended to have it done in February or March, but life has gotten in the way.

Ashley had an opportunity to “Fast Track” at her school.  She has to have 1800 hours of floor time to graduate and missed 6 weeks of school this winter due to a major flare up.  So, she had to take this opportunity.  This means she’s in school 5 days a week for 11 hours a day until the end of March.  So, first two weeks of April it is!

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