Surgery helped us

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We're almost 9 years into this struggle. I see many parents here describing the same cycle we were stuck in - cleaning the same messes, having the same frustrations with doctors, fighting and crying over enemas. So, I wanted to share our story in case it can help any other families.

Surgery isn't for everyone, but it has been the best solution for us. And I haven't seen too many posts about it on this sub, so I don't know how many parents are aware. We certainly weren't told about any for many years.

My child started having accidents in 1st grade. We struggled for 8 years with differing routines of miralax, laxatives, diets, and enemas with both our pediatrician and the continence clinic at our children's hospital. This resulted in a stretched colon, muscle weakness, nerve damage, and multiple accidents a day.

Finally, we talked to a surgeon and learned about a couple of options that could help. We decided on an appendicostomy. It's a tube that's inserted into the top of the colon (through the appendix) that allows you to basically do an enema from the top. The nightly 'top-down' enemas clean everything out each night and they can stay accident free the next day.

It's not perfect, but it's not permanent (this was a big one for us!). It's also not painful, not smelly, and you can't see it under their shirt.

The change in confidence in my kid was worth every penny. It'll be a long while before things are healed, but hopefully they won't end up with a lifelong continence problem or need to have to have a more complex solution like a colostomy.

The years of miralax and laxatives were just compounding the damage to their body and we were making things worse by avoiding surgery. It might be worth talking with your doctor to see if you have any options that might help.