That was my first question…is this even a possibility? Is this going to kill me? Am I going to have to live with a feeding tube?
Yes, I can eat. A year after losing my entire stomach there are still some struggles that I face with eating, but for the most part it is getting better. The first thing that you have to learn is that there is nothing to break down your food. No stomach acid, and no longer a way for your body to control the speed at which your food is released into your intestines. When my food goes into my mouth I have to chew, and chew and chew some more. My GI dr at Mayo advised me that they way I swallow my food is the same way that it will come out. I started with liquids, then soft foods, then experimenting with everything else. I can eat almost anything now but sugar. It makes me super sick for hours and hours. I can have a bite of something here or there or if my blood sugar is super low.
I rarely eat with other people anymore. Simply because if I get started talking or get distracted in any way, I forget to pay attention to chewing my food. If I eat too fast nothing is going to stay down. There is a feeling that I call my heart attack pain that occurs if I eat too much, too fast or do not chew well enough. It radiates throughout my chest and it feels like everything is just stuck. This usually results in vomiting or hours of pain waiting for it to move. It seems like taking a drink would be a simple solution but actually makes the problem worse. You are actually advised NOT to drink 30 minutes before, after or during a meal. There are several reasons for this. First, it fills you up too quickly and you need that room for nutrition. Second, my food is already going directly to my small intestine way too fast, drinking while eating just pushes food through even faster and you lose more nutrition that your body desperately needs.
Nourishment… The reason for eating. I used to eat for fun, for comfort and simply because I really loved food. I now have to force myself to eat. There is no enjoyment. My tastes have changed also. When I do eat something that tastes really good I usually end up eating too much and then it ends badly. This last year I have come to despise eating. I know I have to and I will continue to but it has lost nearly every ounce of enjoyment.
Drugs… I have tried using marijuana as an appetite stimulant. It does make me feel a little hungry which is awesome but the downside is then I usually eat too much or too fast. Not a good solution as well as not legal, even medically in the state of KS. I was able to purchase what I tried in the state of Colorado where it is legal both medically and recreationally. I am a firm believer in the legalization of both.
Alcohol…I have only drank a handful of times since losing my stomach but have found that half a drink and I am drunk. If I stop then in 15-20 minutes I am totally sober. If I continue drinking then I maintain the same level of drunkedness and no matter the amount that I drink once I stop, the effects seem to be gone within an hour and no hangover.
I am supposed to eat every 2-3 hours. I developed severe dumping syndrome and hypoglycemia. Due to this I have been advised to try and eat non stop. Gag. I do make an effort every day and even set alarms on my watch to remind me to eat every two hours and keep lots of snacks with me and at home.
Nutritional failure…we discussed this the last time I was at Mayo clinic and visited the GI dr. and what all this would consist of. I have lab work done all the time…seriously am surprised that I have any blood left. A lot of vitamins and nutrients are totally or mostly absorbed in the stomach. B12 is one of those and I currently give myself an injection every other week. Potassium was very hard to get to a stable level and I hover around low normal now finally with supplements. My vitamin D was chronically low before this and dropped even further even with supplementation. I have started tanning and spending more time outside and I finally got that level into a low normal range. There is really nothing about my body that works normally anymore. I have stabilized my weight finally between 125 and 130. I am 5’9″ and hover with my BMI bouncing between underweight and normal. It is still shocking to see myself in the mirror or in a picture. Rapid weight loss is not pretty. If my weight would continue to fall again or my body is unable to maintain adequate levels with supplementation it will be back to being on TPN or J tube for feeding. As much as I despise eating now that is the reason that I keep trying. I do not want to be tube fed or IV fed again. I know it will probably be a reality at some point in my life but I am planning for it to be way in the future.
Speaking of eating…time to take a break and eat…