Blog: Living Mighty Well

Spoonie Stories: Living with Gastroparesis & Feeding Tubes

My name is Shannon, I’m 22, and I’ve suffered from a chronic illness my whole life. I have Gastroparesis, which causes the muscles and nerves in the stomach to not function properly, causing my stomach to not empty properly. I also have dysmotility of the small intestine causing even further GI problems. I have had numerous NG tubes, NJ tubes, a GJ tube and I have had my second J-tube for almost two years. On top of my feeding tubes I have had PICC lines, and I am currently on my fourth PICC line. Due to my chronic illness, I am currently NPO (nothing by mouth) and have been since November 2014.

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I have always had trouble eating food due to my Gastroparesis. When I was younger, food would frequently give me stomach aches and cause me to get sick. As I got older, my eating habits continued to make me sick and quickly limited my food options. I would frequently end up in the hospital for days at a time, unable to eat anything or maintain hydration. While I was going through this doctors could not figure out what was causing these problems and I went undiagnosed. Some doctors thought it was all in my head while others just believed I could not eat certain foods. Finally, at the age of 17, I was officially diagnosed.

Everyday I wake up with a constant abdominal pain of at least 4 (on a pain scale of 0-10), continuous nausea, vomiting (multiple times a day), and so many other symptoms. There are days where getting out of bed is not an option and there are days where I just have to push through it. Gastroparesis has no cure. Treatment options are quite limited, and I have tried them all. I am on thirteen daily medications and multiple as needed medications. I have had all the surgeries available to me, and sadly none have helped. The promising “treatments” have always been my feeding tubes and PICC lines.

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My first PICC line was place when I was 16 years old and received TPN as my main source of nutrition. My diet by mouth at this time was almost nothing, limited mostly to clear liquids and occasionally a couple bites of plain bread and Cheerios. Adjusting to having a PICC line is always hard. The lines have to be flushed daily, the dressings have to be changed weekly and you are hooked up to an infusion pump 2-12 hours a day depending on your cycle. You can’t get the line site wet, making it hard to shower unless you wrap your arm with A LOT of press n’ seal wrap. You are also not allowed to use that arm to lift anything that weighs a maximum of 5 lbs. as this could cause the line to move or puncture through your vein causing a serious, life threatening problem. Other high risk complications include infection and blood clots.

Unfortunately for me I have experienced both a blood clot and two infections in more than one of my lines -my last infection only being two weeks ago. When faced with these risks, it is important to know the signs and symptoms as well as know the protocol for these situations. Thankfully, I have received excellent care from my hospital all these occasions and the PICC nurses at my hospital have been amazing. Another problem I have encountered with my PICC lines has been an allergic reaction to some of the dressings used, along with frequent skin irritation from the netting the home healthcare services provide to hook the line extensions up while disconnected from the infusion pump.

While PICC lines hold a lot of risks for someone like me, they also hold a lot of reward. Feeding tubes are great and can be highly beneficial, but as my chronic illness has progressed my GI tract has gotten worse and worse making it harder and harder to maintain my nutrition status as well as my weight. While I was using my J-tube for nutrition as recently as March my weight was dropping dramatically fast and my ability to function as a nursing student was taking a serious toll. Having been in the hospital again for weeks at a time the decision to place my latest PICC line was made. Since the line has been in place, my weight and nutrition status have returned to healthy levels allowing me to finish out my school year on a positive note.

6While due to my illness I have faced many challenges, the most recent being to no longer continue my major of nursing and change fields to something less demanding on the body, it as also given me a strength I would have not known I ever had. Though I can’t eat or drink anything, I still love food! I love to cook and bake for my family and friends, I love to buy them random food items I want because that is a way for me to still enjoy and maintain a positive image of food. I’ve been in the ER till 5 a.m. and showed up to work at 8 a.m., I’ve maintained a 3.0 or higher in college even when I’ve missed weeks of school due to being in the hospital, I work my ass off to make sure what defines me is not my illness but my determination to overcome it.

Anyone with a chronic illness will tell you it sucks; it is an hour by hour process. You have break downs and you hate the world and feel so alone at times it physically hurts, but the strength you find within yourself to keep going is endless. The comfort you find in finding someone else who has what you have is amazing and the support you get from anyone who has a chronic illness is awesome. Things like PICC line covers that can take the place of ugly white meshy things are awesome! Tube pads that are in the shape of things or with pretty fabrics also awesome! Little things like that make having all these annoying, but life saving things sticking out of your body a little bit better.

I hope anyone who has a chronic illness has been in someway able to relate to this and those who don’t have learned something from it. To learn more about Gastroparesis you should go to G-pact.org! I also have a blog where I can express myself and my feelings about having a chronic illness. Feel free to check it out at fightinggastroparesis.tumblr.com..

Thanks to PICCPerfect for letting me share my story and helping those with PICC lines have a better line covering option!!

 

Learn more about WHAT IS A PICC LINE.

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