My Story of Coping with Constant PEG Tube Pain

Not long ago, to make a long story short, I had a bunch of GI issues. The GI team decided to give me a peg tube.

The peg tube was painful and uncomfortable

I want to be friends with it, but it's a battle. I can never be fully comfortable with the tube, because I've been in pain 9/10 times since the minute I got it. I kept being told the pain would stop, and it never did.

I had a Mickey button for years. But because I ended up needing a feeding pump, they decided that it would be best to switch to a peg tube just because a peg is supposedly low maintenance. I just have to laugh at that, because nothing with SMA is low maintenance unfortunately.

I just have to say that being okay with all these changes then, and now more than a year later, has been tough. I feel like people told me to just move on, but I'm still living with the consequences at least a year later. And things happen with the peg just when I forgot about everything and feel calm.

Difficulty dealing with pain

As I write this, I recently had a cauterization and everyone said it would be painless and easy. I was expecting terrible pain, but what I got was way worse. Even though I had something to numb the area, it was awful. I put this procedure off for a while because I had anxiety about it all. But I had to do it to avoid more long-term problems and even worse pain.

Able-bodied people’s pain tolerance and mine are extremely different. I truly wish that living with spinal muscular atrophy were so much easier. I live life as fully as possible. I don't have time to be held back by something I was told would be easier.

There are still positives of the peg tube, I remind myself

When I feel sad and frustrated by all this, I definitely try my best to remind myself of the positives that came from getting this peg tube. Like how I can finally not have to worry about nighttime fatigue because I have the feedings and nutrition to help give me energy!

Due to the fact that I have struggled with depression, I try really hard to find the balance of my negative and positive thoughts so that I don't spiral. But I have be completely honest: sometimes you need a breakdown, you need a cry, you need to say screw you, SMA!

Trying to balance positives and negatives

Sometimes SMA is just super tough and overwhelming - and that's okay. I always want to remind people that it’s okay to hate your SMA sometimes. It can be a lot to handle, and it absolutely doesn't mean that you're ungrateful.

To myself and to the community, I hope you find ways to help yourself when you need it. And to be able to cry and scream when needed; you just have to!

I love you so so much my friends. I hope that you can take care of yourself, however that looks for you.