Tummy Troubles

Today's Toastmasters Speech - 

What would you do if your child or grandchild came to you and said, “My tummy hurts?”

What if that child came to you every week and said, “My tummy hurts?”

What if they came every day to say, “My tummy hurts?” 

What if they came every single waking hour?

This has been my experience with our 7 year-old daughter Caris over the past 4 ½ years.  What began as a stomach bug in February 2007 has persisted as chronic and intense abdominal pain, bringing her to tears on countless occasions, flat-lining her personality at times, and, in general, taking away her smile.

Just this week, we have gotten a glimpse of her beautiful smile again, and I am excited to share with you how that has come about; but first, I’ll give you a few details of Caris’s tummy troubles and also of what has been tried to help.

Believing the trouble to be a simple stomach bug at its onset that February, we let it run its course.  Caris was sick for over three weeks, with recurrent bouts of vomiting and diarrhea (even during a miserably-long car ride to and from a missions conference in Illinois).  Since that time, what has remained is a constant ache in her gut – an ache which leaves her lying on the hardwood floor seeking comfort from the bloating or doubled-over the arm of a sofa, moaning in pain. 

She is currently under the care of a respected gastroenterologist at Arkansas Children’s Hospital, who has taken much time in considering her needs and in answering our questions.  Yet questions linger.

After a liver ultrasound, a barium swallow study, an upper endoscopy, and a complete colonoscopy with tissue biopsies, along with a host of blood draws and stool samples, the only diagnosis has been Small Intestinal Bacterial Overgrowth.  Her physician has recently suggested a referral to the Functional Abdominal Pain Center for Children in Columbus, Ohio.  It is clear that Caris lives in pain, but the true source remains unknown.  And questions linger.

Many months of attempting to ward off her known bacterial overgrowth through the addition of a series of over-the-counter and prescription probiotics have only prolonged the status-quo nature of her pain.  Experiments with gluten-free and dairy-free diets also turned up empty for Caris.  Only two of many attempted treatments have shown promise:  one was the cyclical use of antibiotics targeted to “knock down” all of the bacteria in her system, only to allow the gut to repopulate with healthy intestinal flora over the course of a month or more and then wait for her symptoms to worsen as the “bad” bacteria take over, thus starting the cycle all over again. 

The second was the use of an adult dose of Entocort, a corticosteroid prescribed for Crohn’s Disease, which reduces inflammation and swelling in the GI tract.  Due to the nature of that medication, Caris could only remain on it for up to 90 days at a time. 

We abandoned both methods because of their obvious and potential side effects.

So questions linger.

In the waiting rooms of the clinics at Arkansas Children’s Hospital, I am filled with gratitude for the health and vitality my four children do enjoy.  As you look around and see the numerous maladies which bring families to seek top-notch medical care from around our state and region, it is easy to see that others bear greater burdens.

Yet back home (or even as we climb in the car leaving the hospital), as Caris moans and begs for relief from the feeling that she describes now like “someone just keeps slamming a board against my belly really hard,” I am humbled at my inability to simply do something to help her.  

Books and ideas abound on the topic of Irritable Bowel Syndrome (an umbrella term, of sorts) along with its causes and treatments.  But do you trust the one your neighbor hands you to read, or the one that currently has the most holds on it at the library?  Do you spend your few free hours reading the discarded copy you stumbled across at a book sale, or the one with the most professionals quoted on its back cover? 

I can assure you, each one has “THE answer” to all of my daughter’s gastrointestinal woes!  The confusion makes my tummy hurt!

Sitting on the floor of the library aisles poring over books and medical journals, as I’ve done on more than one occasion, can be another humbling experience.  I hold a Master’s Degree in Clinical Nutrition, and yet feel completely inept at helping my precious daughter.

What’s a mom to do?

Pray!

Pray and read; pray and ask questions; pray and do research; then pray some more.  After all, God is the Great Physician, and as the One Who knit Caris together in my womb, He knows and loves her best.  So I pray and expect God’s healing, all while asking the Lord to use these years of pain in Caris’s life to make her stronger and to give her a greater dependence on Him.  (I need that, too!)

And I journal, though not often enough.  Here’s an excerpt from a blog entry I made in October 2010:

. . . her smile has gone away. After putting her down for the night, I literally left her room and wept. . .

Caris's sweet attitude tonight really broke my heart. A little while after we put her down (and also following two bedtime snacks), she called sweetly, "Mom?" From my bedroom I called back, "Good night, Caris. It's time for sleeping." (not an unusual drill) She called again, "Mom?" "Yes, Caris, what is it?" "Mom, can you please come here so I can tell you something?"

No begging. No demanding. Just "can you please?"

I suspected it was yet another tummy complaint, but walked down the hallway nonetheless.

"Mom, could I please have just a little something to eat. My tummy really hurts."

Ugghh. I took the time yet again to explain that the pain she feels must be the food moving through her system, not hunger. Her cues are so confused. How disheartening it must be to never be able to define what's really going on inside. . .

. . .Caris was only 2 when this pain began to plague her. It breaks my heart to know that over half her life has been fraught with abdominal pain. I've grown afraid that these will be her most vivid memories of childhood. Her personality, her outlook, her attitude all change during "seasons" of greater discomfort. Oh, how I wish I could give her her smile back.

That smile!

We have seen glimpses of it in the past few days.  My oldest even reported that Caris laughed when she tickled her on Thursday.  We’ve never heard that response before.

I recently returned to a book I’d perused several years ago, called Gut and Psychology Syndrome (or GAPS) by Dr. Natasha Campbell-McBride.  It led me to a similar book written by cellular biologist Elaine Gottschall entitled Breaking the Vicious Cycle.  Both authors promote the idea that total gut healing must occur before normal intestinal function can return for patients with Crohn’s, Ulcerative Colitis, Celiac Disease, and other related GI disorders.  Their work is based on the research and clinical experience of Drs. Sidney and Merrill Haas in the 1930’s-1940’s.  I could take a full hour to explain the science behind their findings, which are fascinating, and I believe I will for a future speech!

For today, suffice it to say that starving the gut of all complex carbohydrates – anything that takes two or more steps for digestion – rids the intestinal bacteria of the “soil” they need to overpopulate and wreak havoc in the gut. 

This is not an easy approach, by any means.  The “Haas Diet,” since renamed to the Specific Carbohydrate Diet, limits intake to homemade, high-quality broths for a time, followed by the very gradual introduction of one new food per day (or less) in order to allow the gut a period of one-two years to heal, at which time complex carbohydrate foods may be cautiously reintroduced. 

There has been a great deal of cooking going on in our house since we began the Specific Carbohydrate Diet the day after Thanksgiving.  All six of us undertook the introductory days for moral support, and three of us are continuing on it for the duration.  Excellent attitudes and helping hands have lightened the increased meal-planning and preparation load.

The pain scale on our fridge, which became a regular part of our day before Caris was verbal enough to explain her needs, has always garnered a “7” or “8” response at a minimum over the years.  On rare, rare occasions, Caris has given her pain a “5.” 

After one week on the Specific Carbohydrate Diet, she said “3”!  We are overjoyed. 

The holidays are ahead, and with them many opportunities to be tempted with sweets and treats.  Even one bite of a “non-compliant” food would mean returning to the intro diet again.  This course would seem to be quite difficult, but the hope I have had since seeing Caris really smile, and the resolve she has because of the subsiding pain in her belly leave us encouraged that God has led us further toward healing than we have ever been before.

Perhaps, as our questions turn to answers, her childhood memories will be of smiles and laughter after all!

“Flowing Tears”  October 30, 2010 Blog Entry

Sometimes the tears come unexpectedly. Tonight, they've been flowing freely for over an hour.

Caris is still struggling with intense abdominal pain that just won't go away. She has been on an adult dose of Entocort (Crohn's medication) for 7-8 weeks (with a max of 90 days on this one), and though it seemed to help a bit in the beginning, the pain returned in full throttle about 3 weeks ago. Watching her in pain, seeing her personality change. . . it was too much for this mom.

I emailed her pediatric GI doctor last Thursday to tell him we were ready to try the milk-free route, one of only two ideas he had remaining. He is so good to respond quickly, and Caris has now been milk and soy-free for 7 days.

Apparently, I had talked myself into believing that milk was the real culprit. After eliminating gluten, cutting out all refined sugars and additives, and more. . . I had begun to believe that if I were only a "better mom," willing to bite the bullet and eliminate milk, her symptoms would go away. This trial has been so long in coming because Caris LOVES sour cream, yogurt, cheese - they are mainstays of her diet, and she eats 6-8 times per day! I knew it would be harder than the gluten-free attempt. She was quite compliant with that for a full 16 days. This week, she has been more than willing to try my new recipes and hasn't been sad when her sisters have had yogurt or cheese. She's done great with it. . . but there's been NO change.

In fact, I would say that her symptoms have continued to trend upward since the complaining returned several weeks ago. What makes me most sad of all is the way her smile has gone away. After putting her down for the night, I literally left her room and wept. The tears have not ceased yet.

How can I, as her mom, know that she's in pain and do so little to change that? How must she feel, knowing I know that she's in pain, asking us to do anything to change it, and yet getting nowhere? When the complaining comes multiple times every quarter-hour, a parent begins to try anything to appease or distract, and then I feel guilty for overlooking her pain. . .if only I knew what to DO to actually address the need!

Caris's sweet attitude tonight really broke my heart. A little while after we put her down (and also following two bedtime snacks), she called sweetly, "Mom?" From my bedroom I called back, "Good night, Caris. It's time for sleeping." (not an unusual drill) She called again, "Mom?" "Yes, Caris, what is it?" "Mom, can you please come here so I can tell you something?"

No begging. No demanding. Just "can you please?"

I suspected it was yet another tummy complaint, but walked down the hallway nonetheless.

"Mom, could I please have just a little something to eat. My tummy really hurts."

Ugghh. I took the time yet again to explain that the pain she feels must be the food moving through her system, not hunger. Her cues are so confused. How disheartening it must be to never be able to define what's really going on inside.

I told her again about Dr. Fuchs' final idea of us spending some time in Columbus at the Functional Abdominal Pain for Children center there. Though it seems far-fetched, I am willing. She asked again for food, and I rubbed peppermint oil on her belly instead, and began to tell her once more how very much I love her and how I wish there was anything at all I could do after all of my questions, all of my reading, all of my prayers, to HELP her.

I prayed over Caris and asked our Great Physician, the One Who created her, to bring her freedom from the pain.

Caris was only 2 when this pain began to plague her. It breaks my heart to know that over half her life has been fraught with abdominal pain. I've grown afraid that these will be her most vivid memories of childhood. Her personality, her outlook, her attitude all change during "seasons" of greater discomfort. Oh, how I wish I could give her her smile back. I told her so, and she replied, "Well, I do feel like smiling sometimes when I wear my slippery socks and slide around on the floor."

As I began to cry, she turned over to try again to fall asleep, saying, "You're going to make me cry, Mom." I took my tears back to my bedroom, and cried all the way through half a box of kleenex and tonight's read-aloud chapter. Callie and Coplea tried to tell me I've done all I can for her, that (in Coplea's words) "even the specialist is out of ideas." But it doesn't make my heart hurt less for my child.

I write all of this to capture to some small degree the emotions I've been feeling surrounding my inability to bring relief to this precious daughter of mine. Hopefully some day I'll read it and breathe deeply, a sigh of relief, knowing that the issues have been resolved and Caris is once again carefree.

Lord, may that day come soon.

posted by MyFairLadies at 7:42 PM