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.

Q: What is something about having a tube that you find most frustrating to deal with?

A: Because it was so chronically painful, finding the correct way to fold the tube up and strap it to my body was a constant struggle! Nothing was comfortable.  I eventually settled on using the mesh band to hold up a rolled hand towel that my tube wrapped around – it stuck straight out! But that was the least painful way to go about it for me.

Q: What question do you hate answering about your tube? How could someone ask it in a kinder way?

A: I found that A LOT of people wanted to know how people had sex with tubes.  Most people assumed that you just can’t have sex with a feeding tube.  If you’re curious about our sex life, don’t assume it’s made any less sexy because of a couple inches of plastic.

Q: What does your feeding tube mean to you?

A: My failed feeding tube meant the end of the road for my and my team of specialists.  It was the last chance to really be able to use my GI system before resorting to long term TPN.  The tube sent me down some of my darkest days, but we needed to know if feeding tubes were the right call for me and turns out they weren’t.  So if this is you, try not to see it as a failure, but just more information gathered about your totally unique body. There are ALWAYS more options – don’t give up!

Thanks so much for sharing Sara! Now, let’s give a warm welcome to my friend Montana! You can find her on Instagram @monteehock!8

Intro: I have Gastroparesis, digestive tract paralysis, and median Arcuate Ligament Syndrome along with some others that have been recently diagnosed. I have had an NG, ND, NJ, G, and currently have a GJ, we are looking into getting a J tube but I am currently being fed through TPN

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

A: It does get better! I was so thankful for my tube, yet I hated it all at once. It was messy and time consuming, but it got better! Now my tube barely takes anytime out of my day and I’ve developed a routine to care for my tube and manage it that works great for me!

Q: Do you have a tube you use for something other than feeds? 

A: Yes! I use my g port for draining/venting, and my J port for meds/feeds along with my Hickman for IV nutition and medication.

Q: How has your feeding tube helped to improve your life?

A: My feeding tube helped inprove my life until my disease progressed! It has given me more energy over time and a lot of stress has been taken off of my body because I can vent and drain when the pain becomes too much for me to handle!

Q: What is a complication you’ve had that you never expected to happen with your tube?

A: The hospital that placed my tube PROMISED that the tube would not flip… and oh has it flipped… I’ve not even had my tube four months and I’ve had it replaced over a dozen times! But that’s not common, this is due to my anatomy! Definitely talk to your doctor about the possibilities so that plans can be in place to prevent this sort of thing! Also not so much a complication but doctors often tell families a tube doesn’t change the way you live your life and for the most part it doesn’t! But it can! I will likely be getting a j tube placed, and if that happens I can no longer swim in lakes or hot tubs! My suggestion is maybe have one last day at the lake or a hot tub party before surgery! I thought my life would be destroyed as I practically live at the lake but I’m back to riding horses now instead! There is always something new!

Q: What is something about having a tube that you find most frustrating to deal with?

A: I work at a hospital… so as you may have guessed I can’t work while hooked up to feeds! That has been frustrating but more than anything having to explain to family members or random people passing by that I’m okay! I just can’t eat, nothing can cure me and that’s okay! I love to educate but it’s difficult when a tube is noticeable and people not only ask questions but push their crazy cures on you (especially when you are just trying to enjoy a day out with a friend.)

Q: What question do you hate answering about your tube? How could someone ask it in a kinder way?

A: “Well why don’t you just eat?” It’s not that I hate answering the question, it’s just a very broad question with a somewhat complex answer. Maybe if someone could ask, “May I ask why you have a device/tube?” “Does it prevent you from eating?”

Q: What is your favorite tubie product? 

A: I personally love pump stickers! I have cows on my pump! And I really love tube pads, they are a great alternative to gauze. But I waited some time before using them!

Q: What’s your top tubie trick you’d like to share? 

A: My feeding tube trick, hmm. I do think I have a pretty sly way of setting up my drainage bag! And have found ways to make bags out of most anything, as my insurance doesn’t cover them! I personally love the Mickey button! I’ve had AMT, Mic-key, dangler and all the NJ/NG style tubes!  If anyone needs advice for nasal tube placement! I’m your gal!!

Q: What does your feeding tube mean to you?

A: My tube means another shot at life!! It means energy and adventure! You know how you see those ads about energy bars or drinks and people hiking or playing soccer then stopping to take in their go to form of energy and nutrients? Well, that’s how I think of my tube! It’s what keeps me going!

Thank you so much for sharing, Montana! Love that you have a cow sticker on your pump! So cute!

Now let’s meet Sarah! You can find her on Instagram @_sarahdame!9

Q: What diagnosis led to you needing feeding tube?

A: Gastroparesis (initially), Ehlers Danlos Syndrome

Q: How long have you been on tube feeds?  

A: Six Years on J-tube feeds

Q: What type of tube do you have?

A: I have a J tube, a mickey button, but have had an NG, NJ, and a GJ as well.

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

A: That this is not the end of you life and although its scary, you’re going to be okay.

Q: Do you have a tube you use for something other than feeds?

A: I have a cecostomy in my cecum, which is basically a little button I connect to a gravity bag and flush my colon with laxatives daily. It is not as fun as it sounds.🙃

Q: How has your feeding tube helped to improve your life?

A: My feeding tube has enhanced my quality of life and quite literally saved my life. It has made things possible like going to school, traveling, and doing stuff I wouldn’t have energy for otherwise! Practically speaking, it keeps me nourished, hydrated, and allows me to get an elemental formula easily absorbed into my jejunum.

Q: What is a complication you’ve had that you never expected to happen with your tube?

A: My first surgical feeding tube was a GJ tube and it was placed in my ribs, so each time I ran my feeding tube I felt like I had a knife stabbing me. Lets just say, thank God for a doctor realizing it and a J tube placed!

Q: What is something about having a tube that you find most frustrating to deal with?

A: Wearing a backpack for 18 hours a day gets old real fast and my back still has not recovered. Also, the tube becoming disconnected without you knowing, like when you are sleeping and wake up to a big old mess. Eeek, that’s the worst.

Q: What question do you hate answering about your tube? How could someone ask it in a kinder way?

A: I honestly don’t mind answering questions regarding my feeding tube, I actually prefer questions versus just staring at me. I am pretty open about it and love to educate others.

Q: What is your favorite tubie product? Or a product you’re interested in?

A: The Mighty Tank coming out very soon! It is the BEST. It keeps my tubes secure and is super versatile (check out Mighty Well for more details)

Q: What’s your top tubie trick you’d like to share?

A: I mix coconut water with my elemental formula instead of plain water to keep me better hydrated.

Q: What does your feeding tube mean to you?

A: It means life. I hope I don’t need it forever, but am very thankful for it nourishing my body for six years.

What a lovely group of answers from these two gals! Thank you both so very much for sharing your reality with us!

Stay tuned, tomorrow is the last day of Feeding Tube Awareness Week!

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