About Living with a Feeding Tube
Having a feeding tube isn’t as different as people think. Instead of cooking meals 3x a day, I make my formula which actually takes a lot less time than cooking and eating! It can definitely be an inconvenience in a lot of ways though too. Having a tube in your stomach can be uncomfortable and your body tries to close the hole, producing a lot of extra tissue which ultimately needs to be burnt off.
Another aspect is there is so much focus around food on a daily basis, but especially holidays. It can be hard to not be able to indulge in the same foods or connect with people in that way. It can feel very isolating and there’s a lot of emotions to work through that come with that. But overall, living with a tube is not as different as it might seem!
Some challenges someone with a feeding tube may face include:
- Having to be careful about putting too much strain on abdominal muscles
- Pain and nausea, depending on their diagnosis
- Just not being able to eat like a typical person
Normal life for someone with a feeding tube may look like:
- Possibly waking up throughout the night to your pump beeping if the tubing gets kinked or clogged
- Making formula throughout the day instead of having meals
- Changing the dressing around the tube daily
- Having to get granulation tissue burnt off (tissue that forms because it’s trying to close the hole in your stomach)
- Getting it changed, g tubes are a quick change but GJ tubes are done in radiology or under anesthesia
At Camp
Nurses are prepared to care for campers with feeding tubes in many ways. Nurses handle making the formula, mixing medications, etc, and accommodate any food allergies for kids who are able to eat a little bit despite being tube-fed. The kids just have to be hooked up and the staff handles the rest, helping take the feeling of abnormalcy from the campers!
As a volunteer, Lilly experienced a few special moments that show how camp can positively impact campers with feeding tubes.
There was a little guy whose mom saw that I have a feeding tube and asked if I would be comfortable showing him/sharing my experience and it was such a heartwarming interaction. He ran to hug his mom and it wasn’t only good for him to see someone similar to him but also gave the family hope for his future.
There’s also a kid that has had a similar health journey to me and he loved to share with people that “we both have tubies”. These kids are not only learning how to grow up but also have to deal with “feeling different” at a very young age so them feeling accepted and have a sense of relatability positively impacts them.
Meet the Expert
Meet Lilly Downs – a Roundup River Ranch volunteer, college student, and someone who lives with two Feeding Tubes. Lilly first got connected with camp through our Nursing and Medical Operations Director, Amy!
“I was inspired to volunteer after hearing about how amazing it is from Amy and previous campers, and I would have loved something like this when I was younger.”
Lilly’s favorite part about camp is that it is a place where everyone can be themselves. “It gives everyone a chance to be a kid despite their diagnosis instead of their illness instead of it limiting what they can do.”