Gastro = stomach
Paresis = paralysis
"Gastroparesis, also called delayed gastric emptying, is a disorder that slows or stops the movement of food from your stomach to your small intestine, even though there is no blockage in the stomach or intestines."
Gastroparesis has been my nemesis for about a year, but looking back I can see signs of it being around (intermittently and at a more manageable scale) for far longer.
I saw my gastroenterologist on Friday the 7th of May 2021 in the afternoon and he decided to admit me for "three to five days" the following Monday for some IV treatment and meetings with different doctors and a dietician as an inpatient. This was annoying (who wants to rearrange appointments and work last minute?) but I honestly felt so unwell that I didn't care that much. The drug we would use through the IV had worked the last time I was in hospital so I had high hopes. I was convinced I'd be home by the weekend with more energy and more foods I could eat - what a fool I was. It was clear by Wednesday that nothing we tried was really helping - my stomach had given up.
On Thursday we inserted a nasogastric tube (a tube from nose to stomach) to see if some slow rate formula feeding would help to wake my stomach up. Spoiler alert, it didn't. After the weekend from hell we settled on a longer term nasojejunal tube (from nose to the jejunum in the bowel, completely bypassing the stomach). We are hoping to be able to trial a new medication that has some promising trial results after a few months of the nasojejunal tube.
It took two trips to theatre and three insertion attempts to fit the tube which made for a sore nose and a long day. We started my first feed at 4pm on Thursday May 20th. It hasn't been easy and we are nowhere near my goal rate of feeding but boy howdy is it an improvement. I can't take much in orally, I drink a gulp of water with my medications three times a day and am veeerry uncomfortable after that. I am surviving on anti-nausea medication, but hey, it's something.
Now, two and a half weeks later, after many, many tears and many laughs I am finally going home. I may be leaving the hospital with an extra accessory but I would happily live the rest of my life with a tube on my face if that meant I would be healthy and get back some normality in my life. I'm nervous, scared and embarrassed of the way I look but I also feel hope for the first time in a long time.
My stomach may be paralysed but I am full of hope and love.