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The decision to have Faith’s ostomy reversal/ pull-through surgery is not an easy one. The surgery will reconnect her remaining intestines so that she is able to pass her bowels like you and I. It may seem like a no-brainer. That would make her “normal”. But really, what is normal? For Faith, her ostomy is normal. Right now, Faith is potty-trained during the day for urine, and we are working on overnight. Obviously, with an ostomy we are not training for poop.
Faith is very aware of her ostomy. When she goes to the bathroom, she can open it, clean it (well as good as a 2 year old can clean), and close it up. She can also tell us when her ostomy has a leak, and needs to be changed. Pretty bright girl! She is very well adjusted, happy, and healthy. So, when it comes to having the surgery, I sometimes feel like, “if it ain’t broke…”
There are a lot of cons with the surgery. Of course there are the normal complications that can go along with any surgery. Those alone are terrifying when you are talking about your 2-year old child. But, for this particular surgery, it is a long recovery time. Faith could have up to 20 bowel movements per day initially. This will eventually slow down to hopefully a manageable number, like 5-7 times a day. But, in the meantime, Faith may have terrible diaper rash. Not the normal kind of diaper rash. Faith’s poop is acidic. And it touching her skin for only a short time (minutes) can cause her skin to break down. So, let’s process this… Faith may have up to 20 bowel movements a day. That is almost 1 EVERY hour. Even throughout the night. If that stays on her for only a few minutes, her skin can break down and start developing a terrible rash. So you see, the rash is virtually impossible to avoid. The key (from what other HD parents have told me) is to keep it manageable. Parents have battled this rash for weeks to years.
Even more terrifying than the rash is the risk of illness after the surgery. There is an increased risk of enterocolitis, an infection in the intestines. This infection comes on quick, and if not treated can be fatal. At the first sign of sickness, fever, vomiting, lethargy, Faith needs to get to the hospital to be treated. The risk of enterocolitis does decrease over the years, but initially it is a real threat.
To top it all off, there is no guarantee that the surgery will work. She may have to have Botox injections, irrigations, enemas, etc. on a regular basis to manage her bowels. She may suffer from incontinence. Often HD children are teased and bullied in school because they have problems controlling their bowels. They are referred to as the “stinky” kid. HD bowel movements and gas can clear the room! Let me tell ya! It is worse than a grown man. While we have gotten used to it, sometimes it still hits me during bag changes, and I am like, “Girl! Whew! How could someone so sweet be so stinky?” But it is more than just stinky gas. It can take much longer for an HD kid to learn to control their bowels. Imagine being in elementary school and having a poop accident?! This wouldn’t be an issue, if she still had her bag.
Even after all of this, there is a chance that she would need to return to an ostomy. So the question arises, is it worth it? Will the surgery actually give her an increased quality of life and make her “normal” or create more problems? The answer is… we don’t know. Right now, Faith is happy. She is healthy. She is loving and living life just like any other 2 year old.
I don’t look at having an ostomy as abnormal. Just different. But I am also a grown woman. I know if we leave Faith with the ostomy she will most likely face some body image issues when she gets older. She also may suffer from low-self-esteem as a result when she realizes she is different. So, you may think, why would you put your child through all of that? The answer is, what if it does work? What if we get through the horrible rash and excessive poop periods and there are no more issues? No enterocolitis battles, no Botox or regular irrigations, etc? There is no way of knowing unless you try, right?
Our next appointment with her surgeon is in about 4 months. We will discuss the surgery more at that time. We chose to wait to do the surgery until after Faith was potty trained to try and help reduce the rash. The thought is that if she already knows how to use the bathroom, maybe she will take to pooping in the potty too. Her doctors are wonderful. Her GI doctor stated at the last visit that they believe she is ready. But both her surgeon and GI doctors have said multiple times, there is no rush. We can do it when we are ready.
So until then, we will continue to research, ask questions to other HD parents who have gone or are going through this. We will continue to pray and ask God to help us to make the right decision for Faith. I can honestly say that I do not know which decision we will make. But I can say that this is truly a walk in Faith. Either way, she will be in God’s arms of protection. We believe that this is the path that God has chosen for us to walk.