My Life Without Food

(How I got here, and what it’s like to inhabit this lonely island)

(TW: Discusses extreme weight loss)

Hi Everyone! It’s Tuesday, and I’m back with another instalment of The Near Life Experience. I decided to write about one of the main reasons that I live most of my life “on the sidelines”, as I think many of you wouldn’t know many people like me, that literally eat zero food.

I attempted to eat food for the last time on January 29th, 2022. It was seasoned, puréed potatoes, watered down to liquid form. I managed one tablespoon full, and was so nauseous for the next 3 hours, I sat motionless on the couch. (Side note: if I’d known that was going to be my last bite of food EVER, I would’ve eaten chocolate for gods sake!).

As with many things Multiple Sclerosis related, this story began long before I got the feeding tube. It was March of 2021, I’d had a great day with lots of delicious food, then I woke up around midnight that night in incredible pain, which landed me in emergency, after spending the night in and out of consciousness on the bathroom floor. At emerg it took so long for them to get my pain under control, and they had to give me a blood transfusion immediately because of the amount of internal bleeding/blood loss I’d had over the night. My thoughts were racing, and my mind immediately jumped to my Grandma’s death when I was 19. Similar symptoms, similar pain, vomiting bile, and then she died within a few months of Stage 4 colon cancer. Terrified, I wondered if I would share that same fate.

The emerg Dr sent an urgent referral for me to see a gastroenterologist. In Canada , an “urgent” referral could mean waiting 6 months or even a year (groannnnn). But I think I got in to see him about 2 months later. He ordered a gastric emptying scan , where they give you radioactive food to eat, and then take scans of your stomach and intestines every hour for the next 5 hours to see if the food is emptying as it should. They kept me longer than five hours, doing more scans, which made me think it wasn’t going well. I also had an upper endoscopy, and a colonoscopy (simultaneously, while awake. 0 out of 10 stars. Do not recommend).

My Gastroenterologist called a month later, saying I had something called Gastroparesis caused by damage to my vagus nerve, from my MS lesions on my spinal cord, and added that there was no way to reverse that damage. My stomach was just holding all food that went in, and fermenting it, not contracting anymore to break the food down, or moving food out at all.

I had to live off of Boost fruit drinks with no dairy for 3 months, and then last May when my stomach wouldn’t even allow the Boost drinks anymore; I went into the hospital for a week (missing an extremely important wedding, which was heartbreaking for me), and had a permanent J-tube put in (which bypasses my stomach altogether and empties a special formula that is already broken down, into my small intestine. During my time there, I experienced severe re-feeding syndrome, which happens when a persons body has been deprived of food for a very long time. Introducing any amount of “food” has to be done with extreme caution, carefully monitoring blood levels multiple times a day. I’d never felt like I was dying before, but when I was going through the worst effects of the re-feeding syndrome, I actually thought I might die.

There are a lot of different illnesses that can cause Gastroparesis, or situations that require a feeding tube for a length of time. But mine is forever, and that has been very hard to accept. It never once crossed my mind that having MS would ever cause me to be unable to eat. But here I am, and this place with no food can be a very lonely island.

Think about every special event/gathering you’ve ever been to. Weddings, baby showers, Thanksgiving, Christmas, retirement parties, church picnics, family reunions, birthday parties; they all have one thing in common… food, and so much of it. Now think of your normal everyday life. Eating is an integral part of each day; and let’s be honest, it’s often it’s one of the highlights! I used to love going to new places to eat, and trying new things; or discovering a new amazing bakery!! Eating GOOD food is one of the joys of life!

So, what happens when that huge part of life is gone? Well, it isn’t easy. Over the past 10 months, I have learned many lessons (the hard way), that have helped me to cope without food, in a world where food is literally everywhere you turn.

First of all, I can never step foot into a grocery store again. I shop for all of my kids’ groceries online, and honestly even looking at the pictures of the food online is VERY difficult. The two teenagers that still live at home, have had to become independent when it comes to cooking. And they know the drill: Mom’s bedroom door gets closed (Mom stays in her room); the hood fan above the oven goes on high; A bath and body works three wick candle (that doesn’t smell like baking cookies) gets lit; and there can be no onions, garlic, tacos, or bacon cooked in our apartment. My kids have been so awesome, and understanding throughout this whole ordeal.

Smelling food cooking is a problem that I didn’t know would actually be a physical problem. I thought it would just be a mental hurdle that I had to deal with. But unfortunately, my brain doesn’t know that when I smell food, that I’m not going to be eating it. So it triggers my stomach to produce a bunch of acid to break that food down; which has ended up with me vomiting (just from smelling food for too long), and the excess stomach acid that’s produced. This also limits the places I can go. There are a lot of places, and peoples homes, that smell like food cooking all the time. Or there’s an event where the smell of food will be too much for too long, so I can’t go, or I’ll end up vomiting in the bathroom the whole time.

The other extremely difficult thing has been the amount of weight that I’ve lost, and have been unable to gain back. I’ve always been a girl with curves, and I LOVED my curves. I loved how I looked in my clothes. But, now, 60 pounds down, when I look at myself, all I see is a “sick person”, not the sexy, curvy woman I used to see. This aspect is gonna take a lot of time to work through. I don’t see “me” when I look in the mirror. I don’t recognize myself anymore. And despite the fact that I’m running my pump 22 hours a day, I’m not taking in enough calories to gain any weight; and on top of that, I don’t have the energy from extra calories to exercise, to try to gain some of my muscle back. (My gut motility is extremely slow, so I’m only taking in 44ml per hour. And we can’t push it, or it can make things a lot worse).

I’ve had one night in the past 10 months where I finally went on a date and felt good about how I looked. My daughter did my makeup, I got a new, short dress, and went out on a postponed Valentines Day date, since I wasn’t well enough on February 14th.

This was the first night, I looked in the mirror and didn’t see that “sick girl” staring back at me. These “good days” are rare; but when they work out, I definitely soak it all in.

There are still a lot of things to figure out, so that I can spend a bit less time on this lonely island. I’d love to figure out how to travel with all of this gear, and heavy formula bags on a plane… but I’m not there yet. I wouldn’t even know where to start. The possibilities of stressful health complications looms too large, especially if I was to leave Canada. I do hope someday I can travel again; but much more research (and strength on my part) is needed to accomplish that. The possibility of a cottage stay, a few hours away, might not be impossible though. We’ll try to start there.

As I end this Tuesday post, I want you to know that writing this wasn’t meant for you to feel sorry for me. I really want to educate people about what it’s like to live without eating food, and having a feeding tube that requires surgical replacement every few months. People like me aren’t very common, but understanding is key, incase you or someone you know has to go through something similar to this as well.

So, until next Tuesday, I’m sending you all love; to those of you watching life mostly from the sidelines, as well as those of you playing the whole full contact game. Neither is easy, because let’s face it, life isn’t easy.

Until next time,

With love,

Kim

(P.S I BEG of you not to send any medical advice. I have Drs for that :)