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Mixed emotions about my 3-year-old getting ostomy reversal surgery

She's doing so well with an ileostomy.

The time has finally come. My 3-year-old daughter will be having her ileostomy reversal and pull-through surgery this month. It's been a long road getting her to this point, but now we are here. There's no way to put my emotions into words. I'm excited, nervous, terrified — you name it! Yet, I have mixed feelings about it all. On one hand, I don't want Faith to have an ostomy because I fear the bullying and teasing that may come later in her life. On the other hand, she's thriving. Faith can eat just about anything. She's almost off the growth chart (in a good way; 95th percentile for weight), and is VERY well adjusted to having an ostomy. She named her stoma "Miss Poop" and can even empty the bag on her own. She assists me with changes and is also very proud of being potty-trained.

Faith was born with a severe case of Hirschsprung’s disease. Her particular type of HD affects approx 1 in 250,000 babies. At two months old, she had her entire colon removed and part of her small intestine. After Faith had surgery, it was so overwhelming. There's definitely a learning curve, but my husband Anthony and I soon became pros at caring for her ostomy. It was just part of our daily routine, and part of her. All in all, Faith has been healthy since receiving an ileostomy. She's only been hospitalized twice in the past two years. Now, that might seem like a lot but when you have a child with HD, believe me, this is amazing. So this had us wondering: Do we really want her to undergo pull-through surgery? Faith is doing so well. Do we want to potentially open the door for new complications?

Ultimately, we decided to go through with the reversal surgery. Faith is strong and resilient. We're fine with her ostomy, but we also want to give her the chance to live without one. As her parents, we believe this is the right time to do it. The healing process after surgery can take a while because Faith will have to learn how to go poop the "normal" way. This will be something new for her since she's had an ostomy almost her entire life. Our prayer is that she'll fully heal and learn to use the bathroom successfully before preschool starts. 

For months, Anthony and I have been preparing Faith for reversal surgery. At her doctor's appointment, she made it clear that she was ready! When the surgeon came in the room she told him, “I want you to take Miss Poop and put her back in my belly so I can poop out my bottom, and take a bath, and play with my toys whenever I want!" He could only respond, “OK, do you want to do this next month?” So her surgery was scheduled for June 21.

We had one scare recently which I thought would postpone her reversal. While we were at church, Faith threw up twice. She was lethargic and complained of her tummy hurting. She rarely complains about her tummy, and when it does, it's usually because she wants some milk or her ostomy bag is leaking. But this time, it was neither of these things. When we got home, I checked her bag and noticed very little output. Because Faith has an ileostomy, she constantly has output coming out. So the fact that there was very little poop in her bag was scary. The first thing I thought about was a possible blockage or obstruction.

We immediately contacted the on-call surgeon for at our children’s hospital and were advised to bring Faith in to be assessed. So, two weeks before her surgery, we packed our bags and drove three hours to the hospital in the middle of the night. Faith was admitted for a small bowel obstruction. Her doctors explained that there was nothing she did or ate that caused it. It just happened. Fortunately, she was still passing poop which meant that her bowels were not completely blocked. After a few days we were released, and do you know what? Faith went to her gymnastics class the next morning. It never ceases to amaze me how resilient she is!

Faith might be resilient but mommy, not as much. I've been exhausted since this last incident and getting little sleep just thinking about the pull-through. It’s a 6-hour operation. I know that she is strong and that God is protecting her, still, there's fear in my heart. Fear of the actual surgery and fear of what it'll be like afterward. She's such a happy, carefree girl. Will this change her personality? Will she struggle? It's hard for a parent to see their child in pain. I want so badly to take this burden from my daughter, but I know that can’t happen. She's a seemingly indestructible pillar of love and energy, and she's absolutely the strongest kid I know. Faith has inspired so many people in her life already, mostly me.

Article credit: Raising Our Faith