Thursday, March 3, 2016

I didn't come all this way to have NOTHING happen after my FMT Treatment!

**Warning** Frank talk about gut health ahead!

Day 3 - Different Day; Different Donor; Different Response

I was still feeling the effects from my chaotic gut from the day before when I woke up in the morning. Despite continuing to take the Oxyklenz, which softens the stool, and feeling like I had "lost" a lot of the liquid transplant material through multiple trips to the toilet, I was starting to feel constipated again. I decided to move things along a bit with a glycerin suppository. I figured if I removed that urgency then maybe I would hold this next transplant a little longer.

I remembered to drink very little – just enough to swallow the prebiotic powder – so my colon would be "thirsty" when it received today's implant. Landon make me a couple of eggs, then we headed to the clinic.

The clinic is on the first floor and has no elevator, so there are 19 stairs (they are moving to a new facility with accessible access this spring). For me, this is my first and best indication of my energy levels and ability. Landon holds my left arm as I use my right arm to firmly grip the railing and climb the stairs. It was harder today.

The nurse took me early, which was just as well because I felt bloated and had a stomach ache. As with every day, I go through a list of questions with her, such as "how would I describe my general wellbeing?" and "how would I describe my level of pain?" She takes my temperature, blood pressure, and oxygen saturation. I gave her a lower answer for my level of wellbeing today because of my energy levels and unsettled gut. Somehow, that felt like I was admitting I was losing.

The transplant went smoothly and I feel the nurses gave me a little extra time and TLC before ushering me back to the waiting room. I was definitely feeling more sluggish than I was 24 hours earlier. Landon was already in the treatment room when I came out, so I was a bit concerned about making it to a toilet, if needed. The clinic washroom in the waiting area is another physical challenge - up two narrow stairs with no railing. The combination of urgency + physical challenge = potential nightmare! Luckily, Landon came out and we chatted for quite a while before I decided I needed to go. We think it was about 2.5 hours since my transplant, so MUCH better than my first two days! We waited for Bill, then headed down the stairs.

Because my urgency was a lot better than the day before, we decided to head to a tapas bar. Their washroom, too, had two steps up! Landon had to help me twice to the toilet through our lunch. The first time, it was difficult for me to lift my feet onto each step while he steadied my balance. It was difficult again to navigate inside the washroom stall. Landon had to squeeze inside, shutting the door behind him, so he could help me. On my second trip to the toilet, it was still even more difficult to climb the steps. Landon had to balance me, but also lift me. However, as Landon waited for me so he could help me stand and get dressed again, a wave of renewed energy came over me. I easily stood on my own and got dressed. Landon helped me down the stairs, but it was obvious to me my energy fundamentally elevated.

Bill noticed it too. He said my voice was improved and I was engaged again. My energy stayed very good through the rest of the day and evening -- even while two my male roomies had naps!

I had a few rumbles after this transplant, but my gut settled and was calm. So very different from the day before!

One of the conversations I had with Annie, a member of the clinic staff, today concerned probiotics vs. FMT. She said probiotics, because they are cultured commercially and not inside a living being, lack the ability to effectively attach to the colon and colonize the gut. Most just float right on through. Annie said they are also subject to mutation because of their artificial duplication. She stressed they can still do good things for us but, like the literature I cited in my first blog, said they must be taken regularly because they don't stick around. Second, she recommended we rotate probiotic brands. I was taking VSL#3 regularly, so this was a timely reminder to rotate three or more different types.

The microbes received during an FMT, in contrast, are very much alive and eager to multiply. They went from donor to clinic, then frozen, then thawed and incubated to body temperature before insertion.  While being warmed to body temperature in the incubator, they are fed Bimuno, a microbe-specific prebiotic. From their perspective, they haven't had time to miss their old host yet. When they see a new opportunity (me!) to dig in and start doing their job, they are primed and ready. I guess that explains the "action" -- all the gurgles and sensations that happen in the hours after a new transplant.

Day 4 - Where did all my energy go?

Well, so much for having more energy! My leg spasms continued on and off through the night. By morning, I was dragging my feet quite badly. But – good news – something in my microbiome was working properly and produced results about 2:30 AM! Again, I had a mild stomach ache heading to the clinic for my late morning appointment.

The stairs posed an even greater challenge for me today. Even shifting myself on the treatment table to the different resting positions proved more difficult. My gut was gurgling almost right from the start after the transplant and I knew I wouldn't be able to hold it long. Sure enough, as soon as my time was up (again, the staff was very kind and gave me some extra time to rest), I lost some of the transplant. Back in the waiting room, I was happy to see Landon emerge in case I needed an urgent trip to the "two steps up" toilet!

I didn't have long to wait. Landon got me in there with relative ease (we were getting good at this, or so we thought). After I was done flushing a lot of my new microbes (I know millions, or even billions are left behind) I stood up with a great deal of Landon's help to go down the two steps and back into the waiting room. Now, imagine a British telephone booth.


That's about as much room as we have at the base of the steps before we have to go through a heavy door to the waiting room. So, Landon places my walker in that small square space and stands between the handlebars waiting to help me down the steps. In a perfect world, this works. Today, the world was not perfect. My right leg spasmed as I stepped down the steps and I collapsed forward onto my knees. My left knee was crushed underneath me and my right foot had at least three toes pinned at an awkward angle. There was no room to manoeuvre. Imagine Landon, me, and my walker pinned against the door and walls. Ouch...

Landon and I had to rapidly problem solve to get me sitting at the top of the two steps instead of forward on my legs, pinning him against the walker. Thankfully, my left knee and right toes escaped without lingering damage. From there, Landon was able to assist me to a stand and we joined Bill in the waiting room. Problem solved. Dignity saved. At least this happened on my way *out* of the washroom! This was just another close call in the life of someone with MS and her caring partner.

Even the stairs to leave the clinic were harder today. I'm consoling myself with chocolate rice thins. A rare aberration from my Wahls Paleo diet, but one I think I needed today. Interestingly, my upset stomach diminished greatly after eating the tapas yesterday and I had that sustained energy surge. I'm counting on some similar effect today after my chocolate treat!

Cheers everyone,

~Sandra





4 comments:

  1. Lots to think about, eg diet variety, and of course mobility and access to Heaven! ;)

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  2. Thanks for giving the down and dirty lowdown on your journey. I'm sorry about your accessibility issues. Continued best wishes to you and your male roommates. 😉

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  3. Can't wait to read your next blog Sandra.....looking forward to it.....

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