Monday, July 21, 2014

Stomach Issues, Surgery, and 21 Day Fix

As I am writing this, I am anxiously waiting for Ellie's gastroenterologist [GI doc] to call.  Last Monday, Ellie had an ABR and an anorectal manometry performed under anesthesia.  Essentially girlfriend had a fancy hearing test involving electrodes and a complex rectal exam involving a tube with a balloon up her bottom and some funky wave patterns.  As expected, everything was/is normal.  Except for a ton of internal hemorrhoids :-(

Yes, she wore those boots into the OR.
Yes, they let her bring her flashcards too.

I cannot remember if I told you all or not, but Ellie was hospitalized in April for . . . are you ready. . . constipation.  Yep, baby girl couldn't go.  For over 8 miserable days.  She was distended and unable to eat much.  She was spitting up.   Nothing we did for her was working.  While it may seem ridiculous to be hospitalized for lack of bowel movements, it is common among preschoolers and school age children.  It is also serious--severe constipation that is.  Severe constipation can lead to colitis (infection) and intestinal perforation (ruptured intestine).  Perforations can lead to severe infection &/or death.  So yeah, you can die from complications related to constipation.  

Did I mention that her surgery was running 3 hours late?!

Bear has had GI issues off and on since 3 months of age.   If one more person tells me about prune juice, I will blow a gasket (I kid you not when I tell you that as we were getting discharged from the hospital, the nurse asks me if we ever tried prune juice?!??!  It was a miracle I didn't smack her with the discharge paperwork).  If I hear about fiber and increased water intake, I will also lose it.  These were the methods we used to treat Ellie's constipation when she was a wee little baby/girl.  Every once in a while a glycerin suppository was needed.  Ellie was more of a happy spitter.  Reflux R Us.  At age 2, Ellie had an Upper GI that rule out celiac's disease which can also present at constipation.  Her thyroid is checked every 6 months as hypothyroidism is also common in Down syndrome and can cause constipation.

Over the years, things have gotten worse.  We had to start giving Miralax daily even with her ridiculous consumption of berries and grapes (honestly, I would never be able to leave the bathroom with the amount of fruit this child eats!). 

This year has been particularly rough.  Her Miralax doses go up and down, but she is never off of it.  The constipation gets better for a few days and then worse and then better and then worse.  Occasionally things get pretty bad like in April and like this week.  I am constantly told that she must be withholding (as in refusing to poop because it may hurt) but her rectal vault is empty.  This means there is no urge to go and so it sits and sits and sits higher up.

When things get really bad, one day may look like this: 

1-2 capfuls of Miralax (up from her usual 1/4-1/2 cap)
Exlax
Milk of Magnesia
Pedi Fleets Enema

This may produce nothing.  We do enemas in 3s--Friday, Saturday, Sunday.  Exlax can only be given twice a week, tops as it is a stimulant laxative and the gut can get dependent on them.  So guess what we tried to do this past weekend?  You guessed it!  Enemas.  Only the 2nd one wouldn't go in.  I don't know if I hit a hemorrhoid or what, but I would not force it. We skipped the 3rd and called GI.

What happens when she still doesn't go????  X-rays.  They look for an obstruction.  Usually the obstruction is stool, very high up in her gut.  


In April, she was refractory to treatment and we were sent to the ER to then be admitted for nasogastric tube administration of GoLytely.  All of you who have undergone bowel prep for colonoscopies know what I am talking about.  There is nothing like watching your child scream in pain as her abdomen becomes taught and swells to the size of pregnancy while that GoLytely tries to get absorbed.  Then, thankfully, 8-9 days of waste flow out and girlfriend is no longer uncomfortable.

After that hospital stay, it became apparent that Ellie's constipation is stubborn.  And severe.  The anorectal manometry was ordered to officially rule out Hirschsprung's disease., which is another issue that can be more common in Down syndrome.  Hirschsprung's is usually diagnosed at birth when the baby doesn't pass meconium (that first tarry bowel movement) due to missing nerve cells in part of the colon.  However, mild cases may not be diagnosed until late childhood.  The manometry looks at how the internal and external sphincters coordinate--imagine if one opens but the other closes.  It looks at how the rectum responds to pressures as the doctor inflates and deflates the little balloon on the tip of a tiny tub inserted in the bum.


Wave patterns.  Anorectal Manometry
Image: www.ajpgi.physiology.org
Picture of balloon catheter for Anorectal Manometry
Photo: www.mja.com.au
So here I sit at the computer, waiting as my daughter is going on day 8 of no bowel movement.  Waiting for the results of the X-ray and praying that soon my child will find relief.  Thankfully, Ellie is still eating okay and she doesn't seem uncomfortable.  I am hoping that we can find some way to manage her GI problems without constantly traumatizing her.





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A few weeks back, I wrote about my lifestyle modification that led to a fair amount of weight loss.  I have had many readers contact me to find out more.  I want to let you know that I am starting a 21 Day Fix Challenge in August through Beachbody.  This is the Challenge that changed my life and led me to become a beachbody coach.  If you are interested or know of someone who might be interested, message me through my FB page 
or email me at thechroniclesofelliebelliebear (at) yahoo (dot) com
You can also learn more at 



I still can't believe I am posting before and after pictures!



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3 comments:

  1. Ugh. So sorry you & Ellie have to deal with this - hospitals are no fun. Sending lots of love.

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