Hello! My name is Alexis and I am 23, me and my fiance have a one year old son, Caiden. 8 months ago I was diagnosed with gastroparesis, i’ll explain below but it causes me to have to rely on 24 hours enteral nutrition. Im a stay at home mom and due to my recent hospital stay funds are tight and keeping bills paid and caiden well taken care of has been top priority. Since making the adjustment ive realized three things.
1. A rectagular tube bag digging into my spine 24 hours a day is immensely painful, especially when I have back problems already.
2. Babies really really love cords, and tubes, and wheels which is essentially all the medical equipment I use.
3. Most tape causes blisters and tape must be used to hold my gj tube in place.
I am working to raise money to buy a tube feeding backpack that will fit my needs and allow me to run my feeds while caring for my son, and dylan is at work. I’ll be working to raise it as well and setting as much money aside as I can but I could really use your support. Even a dollor or two brings me closer to my goal and is immensly appreciated.
All money will go to buying a tubie backpack to fit my needs and an IV pole with a wheel lock, as my current one does not fit through doorways and makes our house hard to access. Sharing is also greatly appreciated thank you for your support!
Severe Idopathic Gastroparesis, is to put it simply, complete and permanent stomach paralysis with no definitive cause of what brought it on, though they have theories. Its been 8 months that ive been dealing with this. I didnt see a specialist until nearly 6 months into it, because for any of you who know my health history, ive spent alot of my life in hospital, and after just regaining some form of normalcy, I wasnt mentally prepared to go through all the testing and being told how my body is failing me again. I started researching and all of my symptoms matched, getting full after a couple bites of food, losing 85 lbs in 7 months, constant nausea and vomiting, always starving but if I ate I was left curled up in pain for hours. I wanted to eat, desperately. But everytime I did I got sick. About 6 months in I lost all my energy, I could eat less than my one year old son and I was desperate for some sort of relief. So I went to a specialist and after lots of testing, they confirmed that I had Severe Ideopathic Gastroparesis and almost 0 motility in my stomach. I had spent months researching my options, medications for mild gastroparesis, meds i was allergic to, gastroparesis basic diet, gastric pacemakers, digestive enzymes, botox of the stomach, homeopathic remedies for mild cases, and lastly permanent feeding tubes and tpn as a last resort if all else fails. There are very few desireable options in my case and with my other health stuff. I went in for my follow up to explore my other options and had emergency labs drawn because upon arrival my heart rate was 37 bpm and I was very weak. I was directly admitted and my labs showed severe malnutrition, my potassium was 2.6, and I could’ve gone into cardiac arrest at any point. They gave me bags of saline and electrolytes, placed an NJ tube for nutrition, and did more tests and tried an IV antibiotic that can stimulate the stomach which did not work. It came to a point where in order to get home and stay alive I would need to have permanent feeding tube placed that bypasses my stomach and allows me to get nutrition without it getting stuck. I am on it 24 hours a day from a tube in my abdomen with a backpack. Essentially liquids are fine because the can exit the stomach with gravity alone.
Until theres new research this is my option if i want to stay alive and be there for my family which I do with all of my being. As you can see from some of my pictures, my family is my world, I fight everyday for them. If those of you who can, can join with me and help make this transition a little easier this momma would definitely appreciate it. Thank you so much for your support ❤❤❤
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