Dieting With Gastroparesis?

Okay, so that phrase seems counterintuitive, right? It is…but it isn’t. During chemotherapy I gained a substantial amount of weight. I needed to gain weight, but not as much as I did. I went from 120 pounds to 195 pounds. Ideally I’d love to hang out around 145. Currently I way 170. That 35 pound drop? Yeah, I got myself down to 190, but the other 30 is from gastroparesis.

So how the hell do I diet. I mean, I want to lose weight, but not because I’m not eating.

There isn’t really an easy answer. I eat what I can, when I can, and I try and make sure that the food I’m eating is easy to digest, but nutrient dense. It isn’t easy. Protein bars, protein cookies, etc., are all options, but sometimes the protein is really hard for me to process. Lately I’ve been doing toast with some butter and honey.

Today I’ve had two pieces of toast with honey, and two little pieces of soft fresh mozzarella cheese. 

That isn’t enough. I also wasn’t supposed to be eating the cheese, but I had a moment of hunger, and just went with it. The problem is that I’m so full, and haven’t had much to drink at all. That’s the other issue with gastroparesis (for me) is that I often find myself choosing between food and water. I know I need water, but I also need to keep my blood sugar up. Again, I go to honey. I have hot lemon water with honey. I think I’m just hoping the honey will keep my blood sugar up, while also tasting good and giving me some calories.

Yes, I want calories. 

This is where people can go down very different roads. Some people, like myself, want control over intake and output. I want my exercise and calories, to be well matched. I don’t want to lose weight too fast. I know that I need to keep muscle on, and burn fat. If I’m losing too much weight, I’m losing muscle, and telling my body to store fat. Others go down a very different path. They see the massive weight loss gastroparesis is providing, and they lean into it. It becomes an excuse for intentional disordered eating.

If you have a digestive order, and you’re using the symptoms or medications to help lose weight intentionally, please talk with your doctor. 

Some conditions and some medications cause weight loss, but you should be working with your doctor and your nutritionist to mitigate the impact of this. Being sick is not a good way to lose weight. I was 120 pounds because of gastroparesis. I gained weight during chemotherapy because of the drugs I was getting, including steroids. I also developed a ravenous appetite for sweets. I would eat a little bit, all day, and I could process the gluten free vegan options…so that’s what I ate.

Look, I’m not going to rationalize my weight loss or gain. The reality is I should have been receiving better care before I got to 120 pounds, but I honestly didn’t even realize I was that thin. I was so focused on the symptoms, and because I didn’t feel hungry, it didn’t dawn on me that it was an issue. Friends would make comments, and eventually I realized that I was wearing dress sizes and pant sizes that I had never worn. Sitting in a dressing room, holding a small and extra small, when you’re as tall as I am, can be a sobering moment. I remember thinking that I’d wanted to lose weight, but being utterly confused how I’d gotten so thin.

I don’t get hungry, so I try to be mindful of my nutritional and caloric needs. I am 100% sure that I’m deficient, but I’m not negligent.

I get infusions of vitamins and amino acids, because I cannot take in these specific vitamins and amino acids, by mouth. I’m also dealing with periodic malabsorption. I have ulcers in my intestines that prevent adequate absorption, and I also have sections of intestines that just don’t move properly, again, contributing to malabsorption.

It’s funny because I have moments where I’m just matter-of-fact about my gastroparesis. “No thank you, I can’t eat. I have gastroparesis, so I’m still full from breakfast,” she says at 8pm. Then there are other moments, where I get defensive. I’ve been told that not eating sufficiently, for x amount of days, makes me anorexic. There was a heated exchange because anorexia has a physical impact on your body, but ultimately it’s a disease of the mind. Gastroparesis can lead to anorexia, or contribute to anorexia, and severe enough anorexia can even lead to gastroparesis (or at least issues similar.) Someone who has gastroparesis, and loses weight because of it, is not automatically anorexic.

I want to lose weight. I do not want to use my illness to lose weight. I acknowledge that my weight loss is unhealthy, and I do everything in my power to slow down the weight loss, as well as to supplement nutritionally and calorically. 

We can go back and forth for the rest of our lives, but ultimately the important thing is achieving health. I want to be able to work out. I want to be able to eat salads again. I want so many things. The last thing I want, is my gastroparesis to decide my body shape, and for me to have to go along with whatever the disease decides.

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Dieting With Gastroparesis?

Don’t Ignore Your Service Dog

So I’ve been casually seeing this guy, and when I spend the night I don’t always stay on top of grabbing something to eat in the mornings, or before bed. Lately I haven’t had an appetite at all, and since I haven’t been on steroids, the weight has been coming off massively. I didn’t really realize how little I was eating until recently, because honestly I haven’t been hungry. I was heavier than I wanted to be, and I’m at a nice weight right now, so it’s not like I’m unhappy with the weight I’m at, it’s just scary that I got here the way that I did, and it’s scary to know that I will continue to lose weight (rapidly) if I don’t eat more.

Anyhow, there are a lot of problems when you have no appetite, and an autoimmune disorder that makes you nauseas. First off, I have seizures, and while my medication works, if I’m not sleeping well, or eating well, I’m putting myself at risk for seizing. After two abysmal nights of sleep I was pleased that I at least got better sleep over the guy’s place than I had been at home the prior nights. Still, I’d eaten a whopping 400 calories for the entire day, and while I had noshed on a few potato chips at his place, it probably only got me to around 600, less if you consider calories burned.

I didn’t get home until almost noon today, which was later than I’d wanted. I was tired, and kind of hungry, but I had a ton of stuff to do for work, so I threw myself into working without even changing out of my clothes into something comfortable. I knew I wanted caffeine, but didn’t even stop to get my caffeine fix. My mind was on work…except my dog.

When I got PTSD 9 years ago, my dog stepped up in a big way. He learned to stop panic attacks, motivate depressed me out of bed, and check doors and windows if I was feeling twitchy. He also began to alert in the last few years to rapid heart rates associated with black outs, as well as begin to act funny during my pre-seizure auras. In the last few weeks I’ve noticed something else he’s on top of…low blood sugar.

So, as I sat there, trying desperately to get my work done, my dog was nudging my hand, whining, and licking my hands. I thought maybe he wanted me to move to the couch, but that didn’t do anything, in fact, me moving made it worse. I stopped what I was doing and did a body check. I wasn’t having an aura, so I knew I wasn’t going to seize unless I was about to have one totally random seizure which *knock on wood* has never happened to me. That’s when I realized it was pushing 12:30, and I hadn’t eaten more than a couple potato chips in over 12 hours. The last time I ate before that had been 12 hours before. In total, that was about 600 calories in 24-hours, with physical activity. I took stock of how I felt and realized I was kind of dizzy. I felt a little drunk, and confused, and was working slower than usual.

I ate a granola bar, with protein, and drank some vitamin water. I rapidly felt better, albeit nauseas because I wasn’t hungry but needed to eat. The dog, satisfied with himself, curled up under the blanket and slept while I finished my work.

People see me, and they’ll say, “you don’t look sick,” unless I’m flaring of course. (That’s when I’m told I look like death.) They see my little dachshund and wonder how he could possibly be a service dog…but he is. I need to remember he’s more in tune with me than I am sometimes, most of the time in fact, and I need to trust him to alert me to things I may not notice on my own.

I’ve been accused recently of having an eating disorder. Just because I’m glad that I’ve lost steroid weight, doesn’t mean I have an eating disorder. There is a huge difference between having an issue with food because your body doesn’t process it well, and wanting to be thin so you ignore the hunger. I rarely get hungry, and even when I’m hungry, I can only usually eat half of whatever it is I try and eat. I know I have that blocked celiac artery, and I’m sure it’s more blocked than the doctors think, because if it’s 60% blocked all the time, it must be more blocked when the vessels swell.

In any event, I feel like digestive garbage. Food doesn’t have pleasure for me. Lactose, gluten, alcohol, meat, and anything high in fiber? Yeah all of  that is out. I used to love salads. Now it’s a few bites and I’m in excruciating abdominal pain. Doctors push fiber so I can be regular, but anything with too much fiber and I’m doubled over and need prescription strength Imodium. This balancing act becomes such a pain that you double up on vitamins, and live off of bland foods because it’s the only way you can survive. I can eat like a normal person, or live like a normal person, but I can’t do both. I would love to eat at restaurants. Go on dates with guys and not have to explain why I’m only having a Sprite.

Anxiety obviously makes it worse, and I’ll admit that I do have IBS. My GI issues aren’t all Behcet’s related, though the bleeding isn’t necessarily a common thing in IBS patients. Still, the level of GI issues I battle? It’s intense.

So yes…I’m wearing smaller jeans. Half of my Facebook feed is congratulating me on the weight loss, while the other half is concerned. Me? I’m just glad my dog noticed my low blood sugar before my friend and I took off to buy new jeans. Passing out from low blood sugar is a drag. Seizing from it is worse. Doing either of those things at a crowded outlet mall by the California/Mexico border? Not ideal.

Apparently I should really be considering medical marijuana as a more regular thing instead of an occasional thing. I guess I’m still thinking about it as a drug drug, instead of a medication. It would be nice to be in a better mood, and have an appetite!

Don’t Ignore Your Service Dog