Advice From a Friend 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. Over the years, I have had numerous NG tubes, NJ tubes, and a GJ tube. I have had my second J-tube for almost two years. On top of my feeding tubes, I have also had many PICC lines. Currently, I am on my fourth PICC line. Due to my chronic illness, I am currently NPO (nothing by mouth) and have been since November 2014. Here is my story of living with Gastroparesis.

Diagnosis

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.

Living with Gastroparesis means that every day I wake up with constant abdominal pain of at least a 4 (on a pain scale of 0-10), continuous nausea, vomiting (multiple times a day), and so many other symptoms. There are days when getting out of bed is not an option and there are days when I just have to push through it. Gastroparesis has no cure. I have tried all of the, quite limited, treatment options. Currently, 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.

PICC line placement

My first PICC line was placed when I was 16 years old and I 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 of 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 for 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 pounds, 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.

PICC line complications

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 on all of 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 that the home healthcare services provide to hook the line extensions up to while disconnected from the infusion pump.

While PICC lines hold a lot of risks for someone like me, they also hold a lot of rewards. Feeding tubes are great and can be highly beneficial. However, as I have continued living with Gastroparesis, 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. The nurses decided to place my latest PICC line after I had been at the hospital again for weeks at a time. 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.

My responses

I have faced many challenges from living with Gastroparesis, the most recent being that I will no longer pursue a major in nursing and change fields to something less demanding on the body. However, it has also given me a strength that I would never have known I 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 people 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.

My advice

Anyone with a chronic illness will tell you it sucks; it is an hour-by-hour process. You have breakdowns 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 in finding someone else who has the same diagnosis as you is amazing, and the support you get from anyone who has a chronic illness is awesome. 

Things like the PICCPerfect® PICC Line Covers that can take the place of ugly white meshy things are awesome! Tube pads with a cool design or pretty fabrics are also awesome! Little things like that make the experience of 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 some way able to relate to this, and those who don’t have learned something from it. To learn more about living with 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 Mighty Well for letting me share my story and for helping those with PICC lines have a better line-covering option!

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