Let’s talk GI, part 1


full-stomachJust a little warning for my readers, this post talks about poop and other GI issues, so if that makes you queasy, you may not want to read this one, for others, this is Joey’s GI story…

From the time we started Joey on baby food, he always had chronic diarrhea. I knew there was something not right with his stomach. Around 2 years old, I finally got him in to see a GI doctor at CT Children’s Medical Center.

After a few months of seeing a GI doctor, she ordered an upper GI to see if anything could be seen there. Unfortunately, the doctor DID see something. It was discovered that Joey as born with malrotated intestines, aka flipped intestines. Obviously, this would require a surgical fix. I’ll never forget walking out of his appointment and calling my mom crying, after all, even as an adult, who else does one turn to when things don’t go right, one’s mom…

Surgery was scheduled for a few weeks later, thankfully my parents were able to come up from Ohio to help with Leah while Joey was recovering. While in the operating room, the doctors also discovered a Meckel’s Diverticulum and that his appendix was even  on the wrong side of his body, both of which were removed during the procedure.

Poor Jojoe (and mommy), we spent 1 week in the hospital before he was able to be discharged. His bowels had to start moving again and he had to be able to hold down food before we could go home. After that, recovery wise, wasn’t too bad. Just had to halfway keep him out of trouble for a few weeks before he could resume normal activities.

Unfortunately, this surgery did not fix his chronic diarrhea. We tried switching around his diet, we tried gluten free, dairy free. One issue still to this day is that Joey can’t eat solid food. He has some pretty severe sensory issues with solid food and not being able eat them so that also has always added to his BM issues. Obviously, not eating solid food, means not having solid poop…

Two common issues with Down syndrome is Celiac Disease aka an allergy to gluten, and also Hirschsprung’s Disease aka chronic constipation (which we already know is not Joey’s issue, lol!).

One trip to see our GI specialist had also discovered that Joey’s BM had blood in it.The next step Jojoe’s GI doctor and I agreed on was a colonoscopy and endoscopy.  The colonoscopy came out negative for Celiac and other food allergy but positive for Lymphocytic Colitis. Along with changing his diet and trying a few different colitis medications that are safe for pediatric use, we never truly found a cure for his chronic diarrhea. There was no medicinal cure that got rid of the blow out diapers, it’s just something that we’ve dealt with all of these years and sadly, there’s more to Joey’s GI story, but I will save that for another day soon.

To be continued…



One response »

  1. Pingback: Let’s talk GI, part 2 | Raising Joey

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