Stomachless and causing problems.

One of the problems being stomachless is that people don't understand it. 

The concept of living without a stomach is completely foreign to them. You are constantly explaining why you don't have a stomach, how your plumbing works, and how your life changed after your total gastrostomy.

I would like to say that this limited to the everyday person on the street, but many medical professionals do not comprehend it either. It is just not that common of a surgery and CDH1 mutation, where the number of affected families grows every day, is still very rare.

Due to this you end up becoming your own health advocate.

For example.

This past week I received a call from the U to go over the prep and details on Monday’s surgery. You know details like where the surgery is being done. When the surgery is. What time I need to show up. Reminding me that I need to get a pre-op exam before Monday. All pretty normal stuff.

Then they told me that I could only drink clear liquids and have nothing to eat after midnight on Sunday.

Well there is a problem.

It is not that this is anything new. I knew they were going to say it. This is not my first surgery. What changed was the time that this surgery was going to take place at. Before now all of my surgeries/sedations (insert dilations for strictures here) have been right away in the morning. This surgery is not scheduled until 2:30 in the afternoon. I don’t have to show up before 1:00PM.

The surgery is one hour long, with and they estimate an hour in recovery.

So if I eat right after that, I will have gone almost 17 hours without eating and that is if I eat just before midnight. Not a big fan of eating that late. So it will probably be closer to 20 hours without food, if I eat around 9pm.

For someone without a stomach that is bad. We need to eat often, in small quantities. As I have mentioned before, what works best for me is to graze all day. I usually have one meal so to speak, and then just munch my way through the rest of my activities. It works for me. My weight has stabilized and even if I go three or four hours without food I am fine, In this case we are looking close to 20 hours without food and that is if I feel like eating right after the surgery. I am not sure I am going to be up for that.

So I let the scheduler know that this timeline would not work for me and asked if this was a hard and fast rule that I couldn’t break or was there some wiggle room with the midnight timing. I went through the whole stomachless thing and she did not know what to say. I get that a lot.

She asked if it was possible to “eat a large meal as my late meal to carry me over?” I explained to her that there was no such thing as a large meal for someone without a stomach so she would have to come up with a better plan. She said she would have to get back to me and with that we ended our conversation.

In the end I got a call back a few hours later with some options.

None of them were great options, but options none the less. The midnight thing is just something they tell everyone. It covers them no matter what time the surgery is. The actual number is closer to eight hours. Well they actually said eight hours, but they said eight hour before I checked in, not when the surgery was scheduled for. We agreed to disagree on that topic. On their timeline I can get up and eat as long as I do it before 5AM. Not gonna happen.

I talked with my doctor and she suggested that I get up as early as possible and if I felt like I needed something have a piece of toast and her words “don’t tell them, you should be fine.”

I learned a number of years ago that I needed to become my own health advocate. Too often in today’s world we get told standard answers that covers the person answering the question no matter the question or the industry you are asking the question of. If these medical misadventures have taught me anything is that you need to ask why. And if you don't like the answer ask again and again until YOU are comfortable and satisfied with the response.

In the end it is just about you.

I will post something after Monday’s surgery. Thanks for stopping.

These are the contents of my head
And these are the years that we have spent
And this is what they represent
And this is how I feel

(Why  Annie Lennox)