Stool Sample (or TMI 3)

Earlier this week, I wrote "I'm not done, but the biggest hard part is behind me."  Since then, I have pondered the veracity of that.  In some ways, it is very true.  

But, as I found myself thinking earlier today, in other ways, "the biggest hard part" isn't yet quite behind me...

Today's agenda included collecting a stool sample.
And on tomorrow's agenda is a blood draw and an early morning upper endoscopy...

Yes, there are definitely still some hard parts left to do.


Prior to my participating in the investigational study, I had never collected a stool sample.  For anyone who has never done this, let me just say that the process of collecting a stool sample allows for a special kind of intimacy with one's stool.  I didn't particularly enjoy the process of collecting my stool sample back in August, and I was definitely not looking forward to doing it today.  

In fact, the whole chronic abdominal pain, constipated, not constipated (read: frequent and often unexpected diarrhea -- but only at random times) thing made me sort of nervous.  (How could I collect my stool if I had little control over my next bowel movement?  Worse -- how would I collect my stool if I simply never had a bowel movement today?)  So, while I wasn't nervous about collecting my stool...I was decidedly nervous about whether or not I would be able to capture the stool today that I needed to collect to turn in tomorrow.

And so...I decided to stick close to home as much as possible this morning...and hope for the best.

I drank a lot of water, and I hung out.
And I waited.

And I got nervous, because while my stomach really, really hurt, I wasn't sure anything was going to happen while I was home.  And the thought of trying to collect a stool sample while out and about -- well -- no words.


Eventually, just when I was about to resign myself to having to schlep my stool collection kit along with me, I really did have to go.  And what I observed while collecting my stool prompted me to write about this very intimate experience.

For the uninitiated, the process of collecting a stool sample allows one a first-hand look (and smell) at one's stool.  It also allows one a special sense of the consistence of one's stool.  And my stool sample from today was decidedly different than the stool sample I collected eight weeks ago -- far smellier, far softer and looser, and with large undigested bits of food.  While I was not really surprised that it was different, I did not expect it to reveal quite so much...


For now, the three test-tubes are safely tucked away in a brown paper lunch bag in my refrigerator. 

I don't know for sure what they will reveal, and while I won't know for some time whether or not I was one of the four controls in the 12-subject investigational study, I feel I can say with confidence that if I was not one of the controls in the study, this particular protocol (Montelukast) did not work for me.

And if I have learned anything?  It is that there is a tremendous need for a cure, a treatment...something.

Chronic Abdominal Pain...

and bloating, 
and diarrhea 
and constipation...
  (yes, oddly enough...both)


As much as I wish I had sailed through the investigational study without a single complaint, that is not the case.  While I won't know for some time whether or not I was one of the four controls in the 12-subject investigational study, I feel I can say with confidence that if I was not one of the controls in the study, this particular protocol (Montelukast) did not work for me.


I consumed my last dose of gluten this morning, making today the 42nd straight day I have consciously consumed gluten after having seriously and purposefully avoided gluten for 1964 days (I was diagnosed with Celiac Disease on April 27, 2011, and have been gluten free ever since).

Late last week, I suddenly realized -- while fighting nausea and breathing deeply through waves of dizziness and holding tightly to the railing while descending stairs as the edges of my vision grayed and tiny pinpricks of light danced in front of me -- that I feel very much like I did before I was diagnosed with Celiac Disease.  

The realization struck me hard, like a run-on train.

Incredibly, while I have known (really, since the beginning), that I haven't felt well, the symptoms and complaints have slowly compiled until -- staggeringly -- if I can trust my memory, I feel at least nearly as unwell as I did before I was diagnosed with Celiac Disease...if not more unwell.

...if not more unwell.

Because, on top of the symptoms I once had -- including extreme fatigue, to the point that I could not climb a flight of stairs without pausing, without gasping for breath -- I now have new symptoms -- gastrointestinal symptoms that threaten to rule my life.


I was feeling like it was hard to explain how I feel until I realized earlier today that I know exactly how to explain how I feel.  Much as there is a very specific pre-vomit pooling of saliva that occurs under one's tongue, there is also a very specific post-stomach flu shakiness and unsteadiness -- that wrung-out feeling -- that hangs on until one is properly rehydrated and until one has eaten something solid.  That is how I feel.  But, that post-stomach-flu wrung-out feeling isn't a short-lived -- just until I drink and eat and maybe sleep a bit -- feeling...it is nearly constant...hanging on, ebbing and flowing, but always there.

And really, it makes sense.  

These days, life with my stomach goes something like this:

My stomach hurts.

I am getting (or have) a headache.

I might be hungry -- but nothing sounds good.  Nothing is appealing.
  (Just thinking about some foods even makes me nauseous.)

And I know...from previous recent experience...that while I might be both hungry AND experiencing a stomachache...eating is likely to resolve only one of those complaints...while worsening the other.

But I also know that I cannot simply not eat, and so...eventually, carefully, planfully...I eat.  And incredibly, sometimes eating is fine...sometimes I even feel better for a short while...whereas other times, eating results in severe abdominal pain and gastrointestinal distress.  And the worst of it is that I never know what to expect.

I picture the villi lining my small intestines damaged and angry, unable to do the job they are there to do, and I wonder what the doctor will see during my upper endoscopy later this week.  And yet, I think I already know the answer.  I expect she will will tell me that she cannot tell anything without a microscopic examination of the ten biopsies she will take.  It is staggeringly hard to believe that it takes a microscope to see the kind of damage I expect has occurred...and yet, I have traveled this road before.

Fortunately, my last dose of gluten is behind me.  Healing -- while likely indiscernible -- will have begun before my upper endoscopy even takes place.

I'm not done, but the biggest hard part is behind me.

And if I have learned anything?  It is that there is a tremendous need for a cure, a treatment...something.

Rough Day

I have always felt that it would be easy to let the way the day starts set the tone for the day, but I have never wanted to be that kind of person.

Rough start?
  Overslept?
  How water heater out?
  Hair dryer suddenly not working?
  Kids uncooperative?
  Running late?
  
Shrug it off.
The worst is already behind you.
The day can only get better.

And so, when my day got off to a rough start -- when a piece of my already-squished-nearly-flat (FACT:  regular bread squishes in a way gluten-free bread does not...and my bread had a rough trip!) gluten dose got stuck in the toaster (at the breakfast buffet in the hotel I typically stay at while working in St. Louis) -- I decided NOT to let that define the rest of my day.  

After fishing the flattened piece -- barely 1/3 of a slice of bread -- out of the crumb catcher under the industrial toaster (yuck) under the watchful eyes of not one, not two, not three, but FOUR curious hotel guests, I retreated to my table, where I buttered and then ate the bread and picked at the rest of my breakfast.  

I couldn't decide if I felt queasy because of where that piece of bread had been or because that's just the way things are right now.

I returned to my hotel room.
I caught a few Pokemon (that hotel has TONS of them!).
I dried my hair.

I went to the bathroom.
My stomach hurt, and I felt really queasy.
I sat on the bed in my hotel room and reviewed my schedule for the day.

My stomach hurt, and I felt really queasy.
But, I had a jail visit scheduled with my client and I knew I needed to leave in order to arrive on time.

I had a tightly scheduled day:  client visit at the jail, team meeting with death penalty resource counsel from out of town, back-to-back source interviews with important (and reluctant) witnesses.
I went to the bathroom again.

I couldn't help bur worry about what it would be like to be locked in the bowels (pun intended) of the jail in a visiting room with my client while my stomach was...as it was.

Feeling as though I had very little option, I headed toward the jail -- a 45 minute drive from my hotel.

About twenty minutes after I departed, I suddenly felt much worse.  
I knew I needed to find a bathroom -- and fast.

I pulled off the highway and stopped at a gas station in what was definitely not the best part of town.  I didn't care.  I am pretty sure I was wild-eyed as I looked around the tiny store that served the gas station for a bathroom.  A kind woman working there pointed toward the back room.  I ran for it.  Later, as I was leaving, I saw a sign that said "Employees Only."  

I sat in my car for a few minutes after that stop.  I was shaky, and still felt slightly nauseous.  And I was late.  I texted the superintendent of the jail to tell him I was running about 15 minutes late.  

I resumed my drive toward the jail, all the while wondering how -- if -- I could really visit my client.  

Ten minutes later, I knew I was going to have to stop again.  This time, as I pulled off the highway, I saw many signs for restaurants and gas stations and I hoped they would be close to the exit.  There was a McDonald's just off the exit, and thankfully, I got there in time.

I sat in my car for a few minutes after that stop.  I was shaky, and still felt slightly nauseous -- but I also thought maybe the worst had passed.  But by that time, I was running even later.  Not my style.  I texted the superintendent of the jail again, to explain that I would be even later than anticipated.  He responded "take your time."

I drank some water, thinking that staying hydrated was really important, all the while hoping that the water wouldn't go right through me.

By the time I arrived at the jail, I was feeling better. 
I can do this, I thought.
The worst has passed.

I processed into the jail and spent two hours with my client.  While my stomach made some pretty funky noises, it otherwise behaved.  My client joked that I needed some "jail food" to silence it.  I grimaced, thinking jail food is the last thing I need.

Drinking water as I went, I drove directly from the jail to the attorney's office where I -- along with the attorneys  representing my client -- were scheduled to consult with a brilliant man who has dedicated most of his life to the defense of indigent capital defendants.  He had traveled there specifically to meet with us that afternoon.

I was early, and I wandered down the street the attorney's office building was on, considering whether or not to have lunch, and if so, what to have.  I bought a giant bottle of water and marveled at the fact that I seemed to be both queasy and hungry at the same time.  I wondered if I could trust my stomach.  None of the many options looked good, although I remember thinking that the gluten-free vegetarian me could have done quite well there, had I wanted to eat.  Instead, I decided to snack on some gluten free crackers I had and some salted cashews (I don't know why, but salted cashews are my friend these days).

I remember thinking we might get done with our meeting early enough for me to pick up a gluten free pasta from one of the restaurants -- linner (lunch/dinner), as we call that in my house.  I remember thinking maybe my stomach would feel more trustworthy later.

About two hours into the meeting, I suddenly started to feel sick.  Saliva pooled under my tongue -- that distinctly pre-vomit feeling and a wave of heat washed over me as strong cramps gripped my abdomen.  Even though we were discussing something that directly pertained to my role in the case, I excused myself and walked as quickly as I could -- unsteadily -- to the restroom.  I wasn't sick, but I did have to urgently use the bathroom.  

After, I leaned against the counter in the bathroom, waiting for the feeling to pass.  The cramps continued.  And when wave after wave of dizziness washed over me, leaving me faint and breathless, I bent forward, allowing my head to hang low.  I ran my hands -- which I had washed in cold water but not yet dried -- over the back of my neck.  I breathed deeply.  I actually contemplated laying down on the bathroom floor.  As the minutes crept by, I kept hoping whatever it was would pass.  Eventually, I started to feel a bit better.  I knew I needed to get back to the meeting.

I can do this, I thought.
The worst has passed.

I returned to the conference room.  The attorneys had moved on and were now discussing something less directly relevant to me.  I thought "Good.  I'll just sit here and listen."   I didn't feel very good, but the worst seemed to have passed.  

Twenty minutes later, I knew the worst had not passed.  I was dizzy, faint.  I bent over, rummaged around in my bag for something, anything -- hoping my head would stop swimming, that the world would stop spinning.  Nothing helped.  Certain I was going to vomit, I nearly ran from the conference room to the bathroom.  When I didn't vomit, I found myself almost wishing I would, thinking that if I did vomit, maybe I would feel better.  At the same time, I wondered what, exactly, I would vomit.  Bile, probably, I thought.  

The abdominal cramps were intense, crushing, and left me breathless and having to use the bathroom again and again.  I just sat there, trying not to cry, wondering how to make things better.  It couldn't be any worse, I thought.

What is happening to my body?

Could this be gluten?
How could it not be gluten?

Eventually, I returned to the conference room.  One of the attorneys (the one I have known for nearly 20 years -- the one who drove me home the night I witnessed our client's execution) took one look at me and stood up.  I grabbed hold of the table.  I hung on, knowing I looked terrible -- ashen, hair stringy and sticking to me, sweaty, unsteady.

I cannot recall exactly what I said -- something incoherent, I think, about a clinical trial for Celiac Disease, eating gluten, having had a few similar episodes before (looking back, that is laughable, as this was unlike anything that had happened yet)...the attorney I know well offered to call me a cab, to drive me to my hotel.  Either or both probably a good suggestion.  The logistics of that loomed large…the meeting would end, my rental car would be stranded.  I would have to sit there and wait while everyone got organized…and all I could think was that I had to get out of there.

I wasn't sure what was going to happen, but I knew I could not trust my body.

I waved him off.  I shoved my things into my bag.  I walked unsteadily to the door, then out of the office, to the elevator that opens nearly directly into the attorney's office space.  I stood there, hanging on to the elevator shaft while I waited for the elevator to come -- knowing the attorneys could likely see me standing there through the glass walls of the conference room -- holding on for dear life.  I didn't care.  All I could think was that I had to get out of there.

Down the elevator.
Across the street.
Halfway down one block.
To the parking garage.

I instructed myself every step of the way, as I walked hunched, like a wizened old person.  I sat in my rental car, the air conditioning as high as it could go, as cold as it could go.

I wondered if I could drive.
I wondered if I should drive.
I wondered if I would have to stop...to find a bathroom somewhere, anywhere.

All I wanted was to get back to my hotel.  As I sat in the cold of my rental car, taking big, deep breaths, the dizziness started to subside.  I texted the first witness I was supposed to interview and cancelled, apologizing, explaining that I had gotten sick.  She did not respond.  I briefly wondered how many weeks, months, it would take to rebuild the tenuous relationship I had formed with her.  

As I sat in the cold of my rental car, taking big, deep breaths, I decided that the cold air seemed to be helping.  I decided I could drive, carefully.  I did not think I would be able to sleep, but I wanted to lay down, to let go of all responsibility for the day.  Mercifully, traffic was light, and I arrived at my hotel in about thirty minutes.

I parked close to the entrance of the hotel and gathered my things just as a huge, crushing cramp grabbed hold of my abdomen and saliva pooled under my tongue.  I rushed for the door, stumbling in.  I was dizzy, nauseous, unsteady.  

I went directly up to my room, falling onto the bed.  I laid there, shivering so hard my teeth were chattering while I dripped sweat.  How is that even possible?  I turned the heat up in my hotel room -- way, way up.  I took out my contacts, set an alarm for the last possible minute to contact the other witness I was supposed to interview.

I texted with a very good friend who lives about two hours from St. Louis.  With a history in corrections, she likes to keep tabs on where I am when, especially when I am in the inner city streets of St. Louis.  I knew she would be relieved to hear I was not planning to conduct the interviews I had scheduled, but I also knew she would be worried about me.  She offered to come.  I thanked her, but asked her not to, knowing there was little she could do for me.  And then I curled under the covers, giving in.

When I cancelled with the last witness I was supposed to see that day several hours later, I tried not to hear the recrimination in her voice:  "But you said it was very important that we meet."   I explained, again, that I was sorry to have to cancel, but that I wasn't feeling well, all the while thinking understatement.

Hours later, the worst had passed.
I can do this, I thought.

A (Not So) Random Thought: What if...

Of course, I really shouldn't be thinking about any of this as much as I am, but, I am.  Last night, in the wee hours of the morning, I lay awake feeling generally older than I am and listening to the pulse in my foot (ankle?), thinking.   

What if...

What if some of the symptoms I am experiencing are from the study drug (read:  the Montelukast, not placebo)?


This is where a visit to the great Dr. Google is so enticing, and would most certainly yield some very definitive answers, I am sure -- but I promised myself at the outset of the investigational study that I would not do that, and I will not.  But, it would be so easy.  Montelukast Side Effects

As Montelukast (also known as Singulair) is a drug Susan now takes, I could certainly justify such research in my own mind, but I would know that (not even so deep down), my curiosity is not driven by the fact that Susan is taking it.  If I were a really good, curious, diligent parent, I would already have done that, but...I didn't, and I will not now.  

The truth of the matter is that when Susan's allergist proposed adding Singulair to her list of medications after Susan's third anaphylactic reaction to a maintenance dose of peanut, I didn't ask a lot of questions.  Sure, I knew that Singulair had been linked to mood changes, depression and even (reportedly) the onset of personality disorders...and even to suicidal thoughts and behaviors -- particularly in adolescents.  But I also knew Susan desperately wanted to be able to continue her oral immunotherapy (OIT) for peanut, and I felt the benefit of the safer, freer life she was pursuing outweighed the mental health risk...and without any research into or consideration of side-effects, we added it to her daily medication and supplement regime.  That insert that comes with every refill?  I've never read it.  And as tempting as it was to read it when I refilled Susan's prescription last week, I didn't -- feeding it, instead, directly into our shredder.

And -- dare I even write it?  Singular seems to have worked, as Susan has not had a reaction (anaphylactic or other) to her peanut dose since. 


So, I am left wondering.
What if some of the symptoms I am experiencing are from the study drug (read:  the Montelukast, not placebo)?

(What if a giant paradigm shift is in order here?)


-- What if the headache that started about forty-eight hours after my first dose of the study drug, intensifying in the hours immediately following the gluten challenge and then hanging on for a week, following me around like a shadow -- increasing, ebbing, and then finally, mercifully, slipping away -- is not related to the fact that I ate gluten but is instead a side effect of the Montelukast?

-- What if the fatigue that I am dragging around, like a boat anchor, is not from my on-going exposure to gluten but a side-effect of the Montelukast?  And here I need to issue a foreshadowing & spoiler alert, for in the blog post entitled Time Capsule, which is scheduled to post on November 8, 2016, the last day of my enrollment in the investigational study, I wrote about the fatigue that hit me hard on the morning I took the second dose of the study drug -- before the gluten challenge.

-- What if the nausea -- that sneaky feeling that washes over me, suddenly, hot, sweaty, filling the space under my tongue with saliva unlike any other...saliva that I must swallow hard, carefully, all while taking big, deep, cooling breaths is not somehow related to my consumption of gluten, but instead a side-effect of the Montelukast?  

-- What if the dizziness that comes over me unexpectedly, making me pause to steady myself, stilling my body while it washes over me and is then gone nearly as quickly as it comes isn't so much related to the nausea, to my daily consumption of gluten, as it is a side-effect of the Montelukast?

-- What if the hoarseness -- that froggy voice that hearkens the onset of a cold for many -- that even I can now hear, is not somehow related to my consumption of gluten, but instead a side-effect of the Montelukast?  

I've never been one to take a lot of medication, but over the years, I have heard and read enough about various medications to know that medication side-effects are not at all uncommon.  And, when I look over my particular list, I think most (if not all of these) are fairly common side-effects in medication.

I'm not sure quite what to think about my foot/ankle and the joint pain, but if I set those aside, and I separate all of the symptoms I am having that could be side effects of the study drug, the Montelukast, apart from the gastrointestinal symptoms and issues -- which are not great but basically improving, I wonder...

What if...
What if I am getting the Montelukast, and what if it really IS working?