Day 1 - I continue to push myself

"I wouldn’t be living the life I am today"

My name is Sonali and I’m twenty-one years old. I suffer with Ehlers-Danlos Syndrome, postural orthostatic tachycardia syndrome and Gastroparesis.

One morning I woke up vomiting unable to keep anything down, seven years later I rely totally on enteral feeding. I started off with a naso-jejunal (NJ) tube and then I had a percutaneous endoscopic jejunostomy (PEJ) placed which worked well up until 2015. Following a long hospital stay I had a central line put in and things were working well but three weeks later I had sepsis and septic shock, I ended up in ICU. Luckily for me while the central line was out of use we tried to use my PEJ to see if the couple of month breakhad rested my bowel. Over the next few days I was able to increase the feeds, it was far from the ‘ideal’ rate but however for me it was great. The central line came out and I could tolerate the PEJ feeds.

To this day I’m still not able to manage as much feed as is ideal but it’s an ongoing process. Recently I had a dye test with Gastrograffin, used for better imagery, to test the transition time within my digestive system and to examine my intestines. It showed slow colonic transit which shows why I struggle with bowel motions and getting my feed rate increased to an ideal rate.

It’s always a battle with my conditions etc., but without enteral and parenteral nutrition I wouldn’t be living the life I am today. I certainly wouldn’t be doing the things many people take for granted. Personally, I like to explore new places and go to the cinema, it’s a challenge though, my confidence isn’t that great. I make sure I do as much as possible though when I can, I make myself do things that allow me the opportunity for a much-needed change of scenery. I’ll continue to push myself to do all the things I so enjoy!

I remember being scared when the doctor first mentioned having permanent feeding but with support from PINNT and other groups it’s made the journey easier.

Sonali