Although I am always surrounded by my family and friends and have always been blessed to have that support, there are many days especially over the last year and a half that I have felt totally isolated and alone.
It sounds stupid, but there are not a lot of people like me. There are actually a surprising (to me) number of people living without stomachs throughout the world. These people and these support groups have been invaluable to me and brought me close to others similar to me.
Here is the big difference…..the majority of stomach less people that I have come across, either have / have had gastric cancer, carry the CDH1 gene mutation that almost guarantees them gastric cancer as well as other types of cancer and treatment for both go those is removal of the stomach. There is another group that I have found that have had bariatric surgery that has failed and end up having to have their entire stomach removed. Until I found these groups of people I felt completely alone….
If you google or do any internet search for total gastrectomy, the most results that you are going to receive are bariatric surgery to stomach cancer pages. None of those apply to me. Being unique is not a good category to fall into medically. There is not research on what happened to me, there are very, very few people that have all of my conditions as well as not having a stomach.
What’s the big deal…first of all, I NEVER know if what I am feeling is just part of my new normal or if I am having a problem. If I called the Dr. every time something felt wrong it would be a daily occurrence. That is not reasonable or feasible. So, I wait. Will it get better, will it get worse, does someone else without a stomach feel this way also? I find that a lot of us in the “stomach less” groups try to help each other constantly with trying to figure out “is this normal?”
I was hospitalized about three weeks ago for a bowel obstruction. I felt something might be wrong for a couple of days but was unsure. I had also just had more surgery the week before that at Mayo to repair a large hernia in my abdominal wall. I waited too long. I waited until I could not even sit up straight and my husband woke up at almost 3am and took me to the ER as I was still trying to wait it out. I know longer no when to trust my instincts about my own body because every single thing is different.
I have huge scars and little scars and tons of scar tissue inside my body. This alone causes pain, pulling, discomfort and makes me wonder if it is just healing. I have developed other health problems relating to not having a stomach in addition to the host of problems that I already had.
I now have hyperinsulinemia hypoglycemia. When I eat, since things move so quickly through my body my insulin spikes way up and then crashes down. My lowest to date is down to 29. This causes me to shake, feel nauseous, sweat, feel as though I am going to pass out and just generally sick. So after consulting with my GI at Mayo clinic, I was again told this is part of my new normal. The only way to combat this is to basically eat nonstop all day. That would be great except for it seems with every passing day that food becomes more repulsive to me. So I do the best that I can, I carry glucose tabs, glucose paste as well as an emergency glucagon kit in case I would go into a coma.
After these episodes it zaps every ounce of energy that I have. I am getting better at finding the balance but seem to be having more difficulty recognizing the lows until they are super low.
Research and knowledge make me feel more in control and it is difficult when I cannot research my own issues to the extent that I would like to. It is getting better with my new found stomach less friends to support me.