My story is long and complicated, but to keep it simple; I wasn’t able to eat for months. I lost one-third of my body weight. I’m 5’11 and weighed 89 pounds. Radiation for colon cancer destroyed much of my small intestine. This is how I felt being unable to eat for months, other people may feel completely different. I had multiple surgeries, feeding tubes, TPN nutrition, and constantly threw up.
Even with assistance from feeding tubes and IV’s, I was starving to death because my body couldn’t absorb the nutrients it needed to live. If your loved one, or you want to know what it feels like to starve to death, I can most assuredly tell you. I was put on hospice care (I beat the odds and it’s almost two years later) but I was very near death.
The First Few Weeks: The first few weeks of not being allowed to eat are the worst. I used to have dreams about food, cry, and beg for just a bite of something. You can survive for quite some time without food, as long as you have fluids. The doctors didn’t hook me up to IV nutrition or give me a feeding tube at this stage, because I was expected to recover. Your stomach cramps can be pretty bad, you feel desperate for something to chew on and swallow, and you may have nightmares about starving to death. It’s a different feeling than being hungry because you haven’t eaten all day. I don’t know how to describe it, other than being able to feel your own body’s desperation for nutrition. Like every cell is crying out for food. It’s a deep and desperate need that you can’t quench; like walking through a desert for days with nothing to drink.
Ask if you or your loved one can have a popsicle for comfort. It’s your body. While you may not be able to digest food at all, a small comfort, the act of having something in your mouth, can change everything! Sometimes, the doctor will say no. I just kept asking. I would throw up the popsicle, but it made me happy to have it. I believe that should be the patients choice. If you’re going to get sick anyway, might as well be happy! If the doctor told me no, I would cheat. I threw up whether I had a popsicle or not, so I decided if I was going to die, I would do it on my own terms. I sucked on a cherry popsicle everyday for a month before I was put on hospice. It was the happiest hour of my day.
Changes to Your Body and Mind: A lot of changes are going to happen to your body. It’s very hard to watch yourself waste away to nothing. It makes you feel like you’re slowly being erased, bit by bit. I looked like a photo of a Holocaust victim. My arms and legs were as big around as a young child’s, my eyes looked too big for my face, and I couldn’t stand without help. Eventually, I couldn’t stand at all. My feet and legs went numb, breathing became labored with even minimal effort, and I began having nightmares about death. One night, I spoke to my children for half and hour although they were two hours away. I read about it in the nurses report a year later. Doctors don’t realize it, but being extremely thin is painful and you are freezing. You really need an airbed and pillows to place between your legs, to prop up your arms and head, and a ton of blankets. It could be 85 degrees in a room and a starving person will be absolutely freezing! Basically, it’s like bone rubbing against bone with no padding.
Starvation can become so severe that your body will atrophy. That happens when your body begins to eat it’s own muscle to survive. This happened to me. In the last stages of starvation, your organs will begin to shut down. This happened to my liver, kidneys, and my heart began beating irregularly. Your limbs will eventually go numb as your body try’s to keep it’s vital organs functioning. Your toes and fingertips may turn black or a bluish color. I know this is scary to read, but I wanted to know what would happen to me. How it would feel to die. I asked the hospice doctor if it would hurt. He said, “No. You’ll just go to sleep and stop breathing.” To be honest, I felt comfort in that.
Your entire body aches because your body isn’t getting potassium, this causes muscle spasms. You can take medication for this. My doctors kept me very comfortable. Hospice doctors can prescribe and deal with intense, end of life, pain much better than any other doctor. If you hurt, don’t be afraid of taking an adequate amount of pain medication. Dying can be painful (mentally or physically) or very peaceful, depending on how it happens…but whatever you are feeling, you have every right to die with dignity and on your own terms. Starvation is slow and your body shuts down bit by bit, not all at once. You’ll have time to say your goodbyes, at least I did. It takes months.
It Stops Hurting: Eventually, your stomach won’t cramp at all or it won’t be very often that it does. You reach a place of accepting that this is happening to your body. It doesn’t mean that you give up, that you are going to die, or that you aren’t trying anymore. It just happens naturally, whether you want it to or not. It’s very difficult mentally to watch these changes. Everything you associate as ‘you’ is slowly stripped away. An anti-anxiety medication may help. One of the scariest parts about the whole ordeal for me, was feeling like I couldn’t breathe. That frightened me. I got so small and sick that I knew death was close. I don’t know how to explain it, but I told my boyfriend, “If I’m going to die, it’s going to happen soon.” He wheeled me out into the courtyard and we told each other goodbye.
I Made It: I made it through this ordeal. It involved multiple surgeries, a strong will to live, and the thing that made me never give up (even when the doctors had) was my children. It helps, or helped me anyway, to have something to fight for. Someone I loved more than I loved myself. I decided I would just keep trying, until my last breath. I swore to my children that I would come home to them, no matter what. I had no intention of breaking that promise, and here I am.
Surgery after surgery failed, but I had an awesome surgeon. In one last desperate, all or nothing attempt at life, my surgery worked. My intestines functioned again, to a degree. I still spent months on feeding tubes, IV nutrition, and unable to eat, but today…I can eat by mouth, drive myself, walk, hug my children, and work from home. Some days I still throw up, I get dehydrated, take lots of medicine, and get tired very easily…but my good days outweigh my bad ones. Don’t give up until you’re ready to…no matter what anyone says, even your doctors! Doctors can be wrong, dying is between you and your maker! The human spirit and the love you feel for your family can be stronger than even death…
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