Share Your Rare: Rare Disease Day 2019

Hi all! It’s Rare Disease Day! A day where the rare disease community gathers and shares their stories, raises awareness, and maybe even paints their faces! I’ve gathered some answers from five of my rare disease friends. They all have very different diseases, but all require, or have required, TPN currently or at some point along their journey.

I’m excited to share a little snapshot into their lives, so let’s get to it!

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Q: What is your rare disease?

A: A myriad of multiple complex chronic illnesses involving Ehlers Danlos Syndrome (TNXB mutation), Factor V deficiency, autoimmune and connective tissue disease, Chronic Intestinal Pseudo Obstruction, and Gastroparesis.

Q: Can you give us a super short description of what this disease is?

A: These diseases impact every organ system in my body. The most severe complications have been periods of intestinal failure due to Chronic Intestinal Pseudo Obstruction; where my intestines do not absorb nutrients and cannot handle fluid or food moving through them. I had to have an ileostomy placed; which means my colon is unhooked and I have a bag where my small intestine empties its contents into. I have a central line where I have received my nutrition and fluids for three years. My joints dislocate frequently, my skin tears easily, and I have struggles with wound healing due to my EDS. I have autonomic dysfunction, which means that my body cannot regulate basic functions such as heart rate, blood pressure, temperature, and more. Continue reading “Share Your Rare: Rare Disease Day 2019”

Feeding Tube Awareness Week Features-Mellie+Allie+Kate

Hello! Happy last day of Feeding Tube Awareness Week! We are finishing off this week with three lovely tubie ladies who have shared amazing insights into their lives as humans with feeding tubes! Let’s not waste any time, welcome Miss Millie! You can find her on Instagram @thegirlwhocanteat where she shares more of her adventure!10

Q: What diagnosis led to you needing a feeding tube?

A: Gastroparesis

Q: How long have you been on tube feeds?

A: Around 5 years in total, I had to be on TPN for 2 years and even though at times it is a struggle with pain from the J feeds, I would much rather be a little more uncomfortable than to have to worry about infection constantly.

Q: What type of tube do you have?

A: I have a straight J-tube and also a G-tube that allows me to decompress air, etc.

Q: What would you love to share with someone new to tube feeding?

A: That no matter how hard things may be, remember the importance of your feeding-tube, being different isn’t bad. Continue reading “Feeding Tube Awareness Week Features-Mellie+Allie+Kate”

Feeding Tube Awareness Week Feature-Sara+Montana+Sarah

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!sara g!.png

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”

Feeding Tube Awareness Week Feature-Ally+Breanne+Mandi

Day three of spreading some Feeding Tube Awareness up in here! Let’s jump to it, as we have three precious humans to hear from today! First up, Ally! You can find her on Instagram @myhealthquirks!5

Q: What diagnosis led you to needing a feeding tube?

A: Gastroparesis due to Elher’s Danlos Syndrome

Q: How long have you had your tube/been tube fed?

A: 3 months Continue reading “Feeding Tube Awareness Week Feature-Ally+Breanne+Mandi”

Feeding Tube Awareness Week Feature-Rose+Sam+Ansley

Welcome back! Let’s dive right back in with day two of Feeding Tube Awareness week with my friend Rose! You can find her on Instagram @my.eds!14

Q: What diagnosis that led you to needing a feeding tube?

A: Gastoparesis, ntestinal dysmotility, MALS

Q: How long have you had your tubes?

A: Six months.

Q: What type of tube do you have?

A: An NJ tube and an NG tube.

Q: What would you love to share with someone new to tube feeding?

A: If tube feeds work for you it can be a complete life changer! It seems scary but if it can drastically improve your life try to be open to it. Continue reading “Feeding Tube Awareness Week Feature-Rose+Sam+Ansley”