I Woke Up One Day With An Incurable Chronic Illness (Gastroparesis)—Here’s How I Found Hope

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Developing Chronic Illness

“Throughout my teens, I have been battling multiple chronic illnesses that affect my stomach and digestive system. This is my story and my very own words to the truth of what it’s like to battle the devil inside you that you have no control over, has no cure, and has changed my life forever.

Before I became ill, I was a very outgoing, active, and loved life kind of girl. I had not long ago finished school and was attending college to become a hairdresser. I was very passionate about what I wanted and was looking forward to the future. 

In 2013, at the age of 20 years old, the ambitions, dreams, and life I was working for slowly started to become a battle. On the 21st of July 2013, little did I know I would wake up that morning and never recover from an illness that would have so much mystery and uncertainty. It was my mother’s birthday and we went out as a family and enjoyed a birthday meal.

Two hours after the celebrations I started to feel quite unwell. I thought to myself, ‘Maybe I have just overdone it and was tired.’ That was until I was vomiting in the most brutal way and the pain in my stomach was that bad. I truly felt like my stomach was on fire. I had never had a bug like this and I instantly knew something was so different. 

As the days went by, I was struggling to keep any fluids down; I wasn’t able to eat anything and struggled to get out of bed. I felt so weak and fragile. This was something like no other.

On the 24th of July, it was my grandad’s death anniversary, a day I normally don’t cope with very well. My grandad was a huge part of my life but on that day, I didn’t have the energy to even think about it.

A few hours went by and after visiting my auntie I couldn’t take much more of this sickness and I was rushed into the emergency department. I needed to have bags of fluid due to dehydration and an urgent blood test was needed. The doctor came to see me and said I had a very nasty case of food poisoning and in a few days, I should be back to my normal self so I was sent home just to rest.

Gastroparesis Diagnosis

As the weeks went by, I continued to struggle with stomach bugs, I couldn’t keep any food down as I was vomiting undigested food, and the pain was like I was living in hell. My doctor was concerned and knew further tests were needed because this was not a bad case of food poisoning. 

woman with chronic illness sitting in hospital bed takes a selfie
Courtesy of Christine McGuinness

From 2013 to 2016, I was in the care of a private hospital. Scans and procedures were done by a specialized gastro team. Unfortunately, they failed to see what was going on. I was then transferred back to a local hospital in Liverpool.

In 2016, I started to get some answers as to what was going on. I was diagnosed with Sphincter of Oddi dysfunction. This condition affects how the bile duct opens and produces the breakdown of food.

Sadly, I had type 3 and was told surgery would be risky and could make the disease aggressive so instead, I had to eat smaller portions of food. However, after many gastroscopies, colonoscopies, Hida scans, and gastric emptying studies, I was also diagnosed with Gastroparesis. Gastroparesis is paralysis of the digestive tract.

Part of me was relieved something was found because it felt like a long battle without answers to what was making me ill. But at the same time, all I could think of was ‘Where does leave me?’ At first, my weight was stable; I was eating smaller meals and foods I could tolerate but I would be overcome with pain so in time I was introduced to Ensure drinks. This is a nutritional drink that would give me the nutrients and calories needed. 

Weight Changes

As time went on, I was seeing different specialists and doctors but I wasn’t getting better.

2018 was the start of living with the devil and my life hasn’t been the same. I started to get sickly, I wasn’t eating at all and I started to lose a lot of weight. At the start, I was a healthy 120 lbs but as time went by, I was just under 112 lbs.

I was very clever in how I was hiding my illness. I wore baggy clothes and put an everything-is-okay mask on when on the inside I was fighting my health.

September 2018 was the moment my illness became very noticeable. The weight loss was shocking and concerns grew, mentally and physically. I was faced with so many negative comments that truly made me feel suicidal.

I just didn’t want to be here anymore. My illness was so out of control and I couldn’t cope. 

My specialist grew incredibly concerned as my weight dropped to 84 pounds. I had weeks to turn it all around by having an NJ feeding tube fitted. If not for that, I wouldn’t be here. My body was shutting down. 

woman with chronic illness has feeding tube and backpack on
Courtesy of Christine McGuinness

Accepting Life With Gastroparesis

2019 became a year of uncertainty. As the months went by my weight was stable and the gastro team with the agreement of dieticians knew tube feeding was the only way to save my life. That year I saw life with Gastroparesis and a life I could have because I got engaged and started to find the new me.

As I started to accept the new way of living, I started blogging about my chronic illness and helping others. I was even starting a campaign for positive body image and started modeling.

It was the highlight of feeling positive and in control, that was until I received a lot of online bullying because of my feeding tube and how I looked. Words truly hurt and not many realized the mental impact it had. Even until this day I struggle with my body confidence and feel ashamed of how my illness has left me.

As you know, the world was hit by Covid and due to the lockdown, my appointments were canceled for 2 years. Because of this, my illnesses turned and the Gastroparesis affected my bowel function. Sadly, I was told I needed to have a Sacral Nerve Stimulator to help my bowel function but it was too late. My bowel was completely gone. Today, I’m now preparing to have an ileostomy.

As I look back and see the longest battle of my life, I know it’s not over and in time there is a greater chance my condition will get worse. Still, hopefully, with my Jejunostomy feeding tube and the ileostomy surgery, I will have a life that can involve going back to work, being more sociable, and most importantly finding ME again. 

I try and help many with chronic illnesses because it can be a very lonely world despite having amazing support from loved ones. As I’ve battled, I’ve also been able to find the love of my life and got married this year. Back in 2018 when my illness got so out of control, the thought of marriage was certainly not in my mind.

couple on their wedding day stand outside
Courtesy of Christine McGuinness

I had my funeral all planned but now look at me, newlywed and looking forward to the future regardless of what that might be. I’m incredibly blessed to have support from family, friends, and the chronic illness community but especially my husband who has been exceptional throughout.

I appreciate the team of gastro specialists and surgeons but especially my community dietician. Because of their care and dedication to treating me and never giving up on a disease that has no cure, they are the reason why I’m still here.

I write my story to give hope and strength to those fighting battles. Never give up and always know there is hope.”

woman with chronic illness holds sparklers while wearing a sparkly blazer
Courtesy of Simon Peter

This article was submitted to Love What Matters by Christine McGuinness of Liverpool, UK. You can follow her on Instagram. Join the Love What Matters family and subscribe to our newsletter.

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