06 January 2018

Admission for DIOS - 6:55am post

We have been unexpectedly admitted again.  For GI issues again.  I feel like I'm in shock.

It all started several months ago, Bennett started showing returning signs of a bowel blockage.  Bowel blockage is a common complication in CF.  I feared another stricture but knew compaction of stool is more commonly the issue.

Since there were only slight changes in the frequency of his poops,  his doctor and I decided get Bennett an X-ray about 6 weeks ago.  Everything seemed to look fine on the X-ray so we decided to see if symptoms improved.  If they didn't we were going to do the barium enema in February to see if possibly his returning GI symptoms were due to another stricture forming.

While traveling over the Christmas holiday, Bennett had two episodes where he couldn't make it to the bathroom in time.  His GI symptoms were quickly becoming disruptive.  So, his doctor and I agreed to move the barium enema test up to next week - to Tuesday, in fact.

On Monday or Tuesday of this week, Bennett started complaining of abdominal pain.  Abdominal pain in CF is not that uncommon so I worried a little but figured it would subside. Besides, he's 8 years old so his complaints about ailments aren't always very clear to me.  I couldn't really tell whether or not to worry.  By Thursday's complaints, I decided a bowel blockage might be emerging so i began the at home regimen for such a thing: large doses of Miralax.  I just kept hoping to make it to Tuesday.

But, late Thursday night, upon returning home from of hanging out with some close girl friends, I found Brian with Bennett who was on the potty doubled over in what Bennett described as "9 out of 10" pain.  At that point, I realized we wouldn't make it until Tuesday.

I feared a complete or nearly complete blockage, likely due to a stricture (meaning scar tissue in the bowel may have completely closed up). I got in the car at 1am and drove to the ER.  Brian stayed home with the kids that night.

After a 10+ hour day in the ER yesterday, we are now fully admitted to the GI floor at Children's Medical Center.  The good news is the doctors were able to confirm that there is not a stricture forming from our last surgery.  The bad news is Bennett was diagnosed with Distal Intestinal Obstruction Syndrome (DIOS) - a blockage in his ileum where the small intestine and large intestine meet.

DIOS is relatively common in people with CF, particularly those who were born with meconium ileus, which includes Bennett.  Food gets stuck in the bowel and can't move through.  It's like constipation in that it's stuck poop in the bowel.  DIOS is different because it happens quickly, rather than gradually as constipation does.  Unfortunately, the bowels of many CF people just doesn't have the hydration it needs to move the food through easily.  People with CF are always concerned about bowel issues such as this.  There are not a lot of good medicines for improving the CF bowel yet.  So, there's not a lot you can do to prevent it.

Right now, we've been told Bennett will likely be in all weekend.  They will keep doing gastrografin enemas every day until they can break up the blockage...or until surgery becomes the only option.

Bennett had to undergo two enemas yesterday.  I can't even describe how awful that was...two in one day was literally traumatic for him.  I told the docs that when we do another this morning, they have to give him medicine to relax him and to give him pain medicine.  I refuse to allow that to happen to him again.

I feel like I'm in total shock that we're going through this again.  I feel like...that feeling you might have if you've accidentally driven your car into a telephone I'm still just trying to stand up and shake it off.  But questions inside my head keep arising: "what am I doing here?" "is this really happening right now??"

Bennett had been doing so well.  And then boom, almost without any warning, we're in the hospital looking down the barrel at surgery again.

We knew, since Bennett was born with meconium ileus, he was at risk for DIOS.  But like most of these things, we hadn't really been prepared for what we would deal with.  This is a whole new learning curve and one I didn't want to learn right now.  We just returned from traveling, and Christmas holidays - we're still getting over two surgeries and a colostomy from exactly one year ago.  Besides, we had things planned for this weekend.  But CF doesn't care.

I will not be surprised if Bennett doesn't walk away from this situation with PTSD.  It's' hard to believe that one day you're fine and the next day you're absolutely not.  ....and this is your life.  This was supposed to be the easy part of CF, the early years.  And yet, we're being hammered with these things over and over and over again.

Today, we face another day of addressing this DIOS.  Bennett is showing some small improvements so we are cautiously optimistic.  But we've been told we'll be in the hospital through the weekend, maybe in to next week.  We'll see how today goes. 


  1. I have a 19 month old son with CF. I enjoy reading your posts. I hate what all Bennett has enduring at such a young age! He is a true warrior! Prayers for strength for Bennett, you and your whole family!

  2. Breck—I’m praying for Bennett to endure the procedures in the hospital and that surgery can be avoided. And that this will resolve quickly. Get passed this then back to smooth sailing. Hang in there!

  3. My BFF and I have been praying for Bennett ever since we heard about him!!! Stay strong and know that no matter what, our GOD IS BIGGER!!! He WILL give you the strength!!! Isaiah 40:31


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