Crohn’s Disease

Our sweet little Halle has been diagnosed with Crohn’s disease.  Back in April she had a bout of sickness that we assumed was just a regular stomach bug.  Then a few times in May she skipped school because her stomach was hurting.  She was also acting much more tired than normal.  She was having a hard time keeping up at running club and at soccer practice she was stopping for frequent breaks.  I thought maybe just the stress of the end of the school year was being a little hard on her body.  It wasn’t until I saw her at her 5th grade graduation lined up next to her peers that I realized something was really wrong.  She looked so thin and frail next to her healthy friends.  We went to see a Dr who said that probably when she got sick back in April she had thrown off the balance of good/bad bacteria in her gut and her body was just having a hard time regulating.  She said that if the probiotic and an antacid didn’t help, we’d run further tests in a few week.  She ran BolderBoulder and it was much, much harder than it should have been for a girl who had been in running club all year.  She even threw up later that evening.  Just a few days later we left for South Dakota and she was miserable most of the time.  She sometimes gets carsick, so I thought maybe she just had a particularly bad time on this trip.  But it didn’t get better when we got home.  Back to the dr for stool samples.  Everything came back normal.  No parasite, no infection.  On to blood work.  Poor little thing HATES to have her blood drawn and was kind of afraid.  But she was brave and powered through. 

When the blood work came back, that’s when we had a real indication that maybe something more serious that a prolonged stomach bug was going on. At this point she’d lost about 7 lbs and was sick all the time.  She was hardly eating, even the most mild physical exertion wore her out and she was napping almost everyday. My heart just ached for her.  Her blood showed that she was very anemic, deficient in Vitamin D, her platelet count was high and her SED rate was really high. SED rate is a non specific marker for inflammation in the body.  So, we knew she was having inflammation, but we weren’t sure where. 

Next came a pediatric Gastroenterologist.  When we first called to get an appointment the wait time was almost 6 weeks.  I didn’t know how we were going to survive that long.  And then a miracle occurred (really, it was a miracle). The office called the next day and said they had a cancellation and could see her in two days.  I was overjoyed.  As we explained her symptoms to the dr, he said it sounded like we had enough evidence that an endoscopy and colonoscopy were in order.  And ask luck (another miracle) would have it, he had an opening 4 days from now that she could take. 

That Sunday we held a family fast for her.  I know it gave her strength and made her feel so loved.  She got calls and texts all day from Grandma’s and Grandpa’s, aunts, uncles and even cousins who were fasting for her.  Even sweet little Blake went without breakfast.  I am grateful for the power that comes when a family unites for a common cause.  These is nothing equal to it. 

The prep for the colonoscopy was not fun.  Miralax and gatorade all day long.  No solid food at all.  The poor thing was starving and feeling so sick from all the sugar.  But she never complained.  I cannot even tell you how brave this girl is.  I have been impressed over and over at her fortitude and determination, even when I knew she was feeling really terrible.  And then, once we got to the hospital her procedure got pushed back by a few hours.  At this point she hadn’t eaten in about 36 hours.  I have never felt so sad or so helpless in my life.  When they weighed her right before the procedure she weighed 57 lbs.  I had to turn away so she wouldn’t see the tears in my eyes.  She’s lost about 15% of her body weight. 

It didn’t take long and the dr was back with results.  And not ones that I wanted to hear.  She had all sorts of “itits” all over her digestive tract.  Stomach, esophogus, small intestine, colon.  But only mild little bits.  Lots of healthy normal tissue in between the diseased bits.  He said the pattern was consistent with Crohn’s disease.  Crohn’s is an Irritable Bowel Disease.  Its chronic. It can sometimes be controlled by medication, but it is never cured.  I had done lots of internet research and was prepared to receive this diagnosis.  It’s the one that fit best with all her symptoms.  But Rusty wasn’t.  It made him physically sick to hear. 

We spent a lot of time learning about this disease and our options for medications.  The goal is to get the disease to remission.  Some people live in remission for years or decades.  Others are not so lucky.  We feel grateful to have a diagnosis, even if it’s not one we hoped for, because now we can move forward and start her on the path to healing. 

Halle has taken the news pretty well.  We’ve both cried together, but we’ve also spent some time reading and learning together and talking and working through questions.  This girl is strong.  There is something inside of her that just makes her amazing.  I know that she will get through this and even when it’s not easy, her good attitude will carry her a long way.

Update:  We delayed starting her medication until we got back from Germany.  She’d been doing much much better and we felt ok about waiting.  While we were away she continued to improve, which is NOT normal for Crohn’s.  The dr said he’d like to redraw her labs and see us again before she started meds.  When we redid the labs, all her markers were either totally normal or trending back to normal. She has gained back all her weight and is eating normally  (ravenous, actually) and is back to her old self. There is not great explanation.  Could be that she has an unusually high and good response to probiotics.  Could be spontaneous remission.  We just don’t know at this point. But the medicines are to potent and not without risks.  The dr said that we want to see clear and measurable change to justify these types of drugs, especially for kids.  Because she is feeling so good, at this point we would not see enough change to justify the meds.   We are delaying  for 3 more months and going to redraw labs again then.  

When I see her running around, joking with her dad, and just feeling good, tears come to my eyes and I just feel GRATEFUL.  Grateful for every healthy day we get.  I know this ride is far from over, but we’ll take it as it comes and face each day with faith.