Chloe, the girl with the feeding tubes

I started being sick around 2016 with these mysterious episodes of severe nausea and vomiting that would last for days or a few weeks at a time. Then I would have a week or two episode free. I couldn’t eat, drink or keep any of my medication down. I was constantly being admitted to hospital for IV-fluids and low potassium, due to being dehydrated. I would go out for meals with the family and then would have to run to the bathroom to be sick. I would feel so guilty and weak.

Fast forward a year to September 2017. I was being violently sick everyday, and there wasn’t a time that I was episode free and not in excruciating pain like a dull achy pain in my stomach. I had no appetite. My mum took me to a&e where I was told It could be suspected appendicitis. However, after a CT-scan, that was ruled out. The doctors were baffled as to what was wrong with me. I got transferred to the gastro ward where I was seen by the mental health team, gastro doctors and neurologist. I had numerous scans including a gastro empty, endoscopy, barium swallow, someone watching me eat to see if I was actually being sick, urine and stool samples to check for crohns and colitis and many more scans. They all came back negative, which was frustrating, as I was no closer to getting any answers as to what was wrong with me.

After many months in hospital, and going nearly eight weeks with no nutrition, just IV-fluids and anti-sickness medication, they tried a feeding tube to get some nourishment into me while they worked out what was going on with me. A nasogastric (NG) tube was the first option, which didn’t work. I vomited everything up that entered my stomach, the next option was nasojejuna (NJ) tube, which I tolerated and remained on that for about a month.

December 2017 – the day my life changed forever, the day I finally got listened to and got a diagnosis. I remember this day like it was yesterday. A specialist in nutrition and a gastro doctor came and sat on my bed and mentioned this rare condition called CVS. All my symptoms added up to CVS. However, I don’t just have CVS, I have abnormal CVS; mine doesn’t come in episodes that last days to weeks, and then go into a period of episode-free. I’m constantly sick, everyday, up to 5-6 times a day. I can’t tolerate anything orally, including food, fluids and medication. There is no cause and no cure. It can only be managed by taking anti-sickness. Unfortunately that doesn’t stop me from being sick, it only reduces the amount of times I’m sick. So on December 13, 2017, my doctor and I agreed it would be best if I got a feeding tube fitted called a peg J (Percutaneous Endoscopic Gastro-Jejunostom), which bypasses the stomach into the small bowel, as my stomach doesn’t tolerate anything in there. 

I was discharged from hospital in January 2018 with my new feeding tube, a diagnosis  and a feeling of relief that finally someone listened to me and didn’t think it was me making it up, or me making myself sick or relapsing from eating disorder.

Having abnormal CVS can be really tricky, its life altering and very tiring at times, but it’s made me the person I am today. With my different health conditions and feeding tubes, I still do the things I love. It takes me a little more time than other people to do stuff, but it doesn’t stop me. I love raising awareness of having a rare invisible illness. Just because someone looks fine on the outside, doesn’t mean they are.