When Hope Disappoints

And Disappointment Hopes...

Photo by Wisnu Prayoga on Unsplash

I haven’t written much about my SIBO journey until now, but yesterday found I needed to help myself process. It’s not an easy thing to write about, but I’m hoping it might encourage others to keep hoping in the midst of difficult situations.

“Jennifer? I’m Marie. I’ll be running your lactulose breath test today. Right this way.” The young masked medical assistant in green scrubs pushed open the heavy door, zigzagging down a labyrinth of hallways to the room for specialized GI testing.

“You’ll be here for three hours this morning. The bathroom is right through that exit. Once you exhale an initial breath and drink the syrup, you will wait in this chair. I return every twenty minutes to take another sample.” Marie rattled off continuous instructions in a monotonous tone. I guessed she might be on the spectrum, but she seemed very kind.

“OK,” I replied, resigned to my fate. I’d gone through this procedure more than a dozen times over the past five years, both in a hospital setting and from home. It wasn’t hard, just time-consuming. Being stuck in a hospital chair provided the small blessing of uninterrupted “found time” which enabled me to accomplish some reading, study, and writing.

“When was your last meal? (‘Seven p.m.’) Did you eat anything this morning? (‘No.’) Did you avoid Pepto Bismol, chewing gum, and exercise this morning? (‘Yes.’) Are you in any GI pain at present?” (‘No.’) Marie robotically fired questions as I tried to keep up. She exuded efficiency.

“Ready for your first breath? Blow in this plastic bag and then I’ll start the timer,” came my instructions. I blew out into the mouthpiece to expand the blue bag, as she pulled some of my exhaled air into a syringe to test. I hoped and prayed that any bacterial gases measured would be significantly lower than the last test, four months earlier.

For those unfamiliar with SIBO (small intestinal bacterial overgrowth), bacteria that normally help with digestion in the large intestine somehow migrate into the small intestine. They create havoc by stealing your nutrition before your body can absorb it (I lost 15 pounds in several months’ time), and fermentation (creating bacterial gases) occurs too early in the intestines.

Symptoms almost always include intense bloating and pain, increasing as the day wears on. The bloating feels like a balloon pushing upward and outward against my stomach. It can make sufferers without treatment look pregnant, and cause nausea with the pain. Typically, both my eating and sleeping are interrupted during flare-ups due to these problematic symptoms.

When I explain this to friends, the next question is always, “What causes something like that?”

“Great question!” I answer. “There are multiple underlying reasons for why this can happen; my symptoms seemed to stem from exposure to black mold over the years. Apparently, I’m one of the 25 percent of the population susceptible to damage from microscopic mold pieces and toxins floating around the air. These mold toxins drove my struggling immune system down enough to begin driving the whole SIBO cascade.” Explanations feel both complicated and lame in my own ears.

Marie swished closed my privacy curtain, and I heard the machine beep as she inserted the sample to take the measurement. I wouldn’t get results until the whole report is read, signed off, and sent to my physician. But one advantage to the hospital test is that results come almost immediately, unlike waiting weeks for tests sent off from home.

Meanwhile, treatment is on hold while we see if previous treatments helped. Are the bacteria levels lower? If so, how much? Testing the bacterial gas levels informs us of the need for continuing treatment, and which ones might work best for me.

People have prayed over me for healing through the years. Yet healing remains slow-- more like a “one step forward and two steps back” type scenario. I’ve been told by well-meaning prayer warriors that healing depends on “just believing it in faith”. When one believes with all their might in the goodness and power and healing that God CAN choose to do, (according to HIS will and not mine), yet still suffers from anything chronic, this can create extra stress and a sense of personal failure.

After all, even Jesus suffered in surrendering to God’s plan and will, warning us, “In this world we will have trouble. But take heart! I have overcome the world.” (John 16:33, NIV).

Two hours in, I shift in my chair, anxious to move on with my day. And because I’m writing about all of this, I sigh heavily. I don’t like to dwell on the SIBO situation and try to focus more on living a normal life. But testing draws everything forward into my frontal lobe--like how continued health issues create stress, frustration, and depression along with a longing for my eternal home.

I ask for prayer before test days as subconscious questions ping-pong around my mind:

Will this test show any improvement? Or will things have worsened? (I know I’m feeling better in some ways, but that doesn’t guarantee that the bacteria are gone).

What will I do if results come back worse? (Seems unreasonable right now, but it’s happened in the past…).

Can I possibly hope for a massive improvement this time? (Not likely, but I’m always hopeful…).

Should I even check the test results, and risk possible disappointment, or avoid them and simply let the doc instruct me on next steps?  (This actually happened eighteen months ago, when I refused to look at my test results out of frustration. Two months later, I found out they came back close to normal but unfortunately, I relapsed quickly.)

Will I ever be able to say that I’m SIBO free? Or is this simply part of living in a broken world and God’s continued plan for me? (I don’t pretend to know.)

“Last breath and you’re done!” Marie announces as she collects her supplies. She opens the privacy curtain, and I dart out to drive home, anticipating lunch.

As I’m clearing my plate, I hear a “ping” from my phone. A notification of results, already?! I breathe in sharply and proceed to the site.

My initial baseline for both gases tested (hydrogen and methane) is lower than it’s ever been. Great news!! When I started this journey, hydrogen was way over 100 ppm.

However. The hydrogen gas rose 52 points over three hours. Anything over a rise of 20 is considered SIBO positive.

Huge sigh.

No tears. I will not cry. I will not cry.

My brain takes a stab at reframing: Never mind, at least I’m feeling better—tried some new things that I know are helping, even if it’s a slow go. I won’t let myself feel defeated.

Next, I try rationalizing: Since it takes four hydrogen molecules to form one methane, when you eliminate the methane, it makes sense that hydrogen levels might rise.

Still. I can’t pretend that I’m not severely disappointed. I really thought the results might be closer to normal.

So much hope dashed again. I’m tired of disappointment!

Hope can be elusive in the middle of the mess. Romans 5:3-4 reminds me “…but we also

glory (ESV) / rejoice (NIV)  / give praise (MSG)

in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope.”

Suffering brings me closer to Christ as I lean on him for strength and help. I haven’t quite mastered the battle to maintain hope at all times...

But. I can pray my perseverance is forming a character more like Christ, even now. And I’ll continue on with his next good work.

“And this hope will not lead to disappointment. For we know how dearly God loves us, because he has given us the Holy Spirit to fill our hearts with his love.” (Rom. 5:5, NLT).