Hello! Welcome to day 4 of Feeding Tube Awareness Week! Feel like you’ve heard it all? Well I’ve got news for you! There’s always more to learn from each different tubie. We’ve all had such different experiences, even if they are the same medical device!
Today we start off with my friend Sara Grace! She has had a very different experience with feeding tubes, her’s did not go well and ended up failing. I love hearing her perspective so much. You can find her on Instagram @chronic_sgb!
Q: What diagnosis led to you needing a feeding tube?
A: hEDS, rumination and gastroparesis
Q: How long have you been tube fed?
A: J-tube duration was 2 months, TPN duration 8 months
Q: What type of tube did you have?
A: J-tube (long)
Q: What would you love to share with someone new to tube feeding?
A: Please listen to your body! Doctors may tell you that chronic debilitating site and muscle pain is normal for tube healing, but if the pain increases or doesn’t go away, tubes were not meant for you! (And that’s okay and NOT YOUR FAULT)
Q: How has your feeding tube helped to improve your life?
A: My feeding tube was supposed to be my saving grace, but instead it caused months of traumatizing and debilitating pain that has left me with scar tissue and ended up decreasing my motility further.
Q: What is a complication you’ve had that you never expected to happen with your tube?
I went to the Mayo clinic to have my feeding tube placed by the best, and none of the GI doctors on my team were aware of the potential complications that come from placing tubes in hEDS patients. Having finally found a GI doc that specializes in EDS based gastroparesis, he was able to explain why it was that my tube failed. After a barium swallow to confirm, he found that (due to EDS) my intestinal tract crumples at the bottom of my pelvis instead of staying in place when I sit/stand up or walk around. This made my tube placement incredibly painful, as it was pinning my small bowel to my skin and just hanging there. Continue reading “Feeding Tube Awareness Week Feature-Sara+Montana+Sarah”