My Life Without A Stomach... Year 1

The doctors told me to give it a year.
They told me that it would take a year to feel “whole”. 

Well as of today it has been one year since I had my stomach removed. 

So, how do I feel?  
Do I feel “whole”?

To be honest, I don’t know. I think so..

I had my stomach removed on August 4^th 2015 to ward off cancer. I carry a mutated version of the CDH1 gene. During follow up visits to the Mayo Clinic it was discovered that I also had a condition known as Barrett's Esophagus. Combined together my chances of getting a rare form of gastric cancer was placed at over 90%.  My options were limited and I decided not to take the risk. So I had my stomach completely removed. When my test results came back they indicated that there was no cancer in my stomach or esophagus.  

The doctors felt that I got lucky. How much longer my luck would have held out is anyone’s guess.

When all is said and done, life without a stomach is not that big of a change. It is more of just an adjustment to the way that I live my life than it is a change to my way of life if that make sense.

I feel the same as I did before. It doesn’t feel like I am missing my stomach. I feel like it is still in there. I just know that it is not. I can still eat food and drink beer just as I could before the surgery. I just need to slow down, eat/drink more often, but in smaller quantities. That's probably not a bad thing.

Over the past year I have had set backs. Strictures were a constant reminder that I was no longer normal and things were different now. There was dilation after dilation. Then came "that damn stent". The good news is that I have not had a stricture since the stent came out. 

I am at the point where I can pretty much eat what I want. There are things that are still off the menu though. It may sound strange to some, but I miss having a salad. I have tried to have them a couple of times and lettuce is the problem. It gets stuck, which never ends well.  Broccoli slaw is another problem. Our family uses broccoli slaw in some of our favorite menu items. For instance I use it when I make my BBQ chicken wraps and a similar style pizza. Since the surgery the rest of the family still gets to enjoy them, but I have to stay away. I also miss eating raw carrots. I use to grab a mitt full of carrots and munch away. Now I can eat them cooked, but I get in all sorts of trouble if I try to eat them raw.

Food gets stuck all the time. It is just something you learn to live with. I can go days or weeks without having an issue and then all the sudden it seems like I am throwing up all the time. In most cases, these are self-inflicted. I am eating too quickly, or I am too busy talking and not paying attention to how well I am chewing my food. Eating is no longer just second nature, I have to remember to think about eating while I eat or I am going to have a problem.

I miss deserts. I can have small amounts of ice cream. I sneak a piece of candy here or there. The challenge there is that I have no will power and a sneak here or there sometimes leads to more sneaks and then the wheels come off my day for a bit. Let me be clear. Dumping syndrome is a bitch no matter when or where it happens.

I struggle to stay hydrated. Drinking enough water is always a problem. You know on those hot days when you are thirsty and want to take a big gulp or guzzle down some ice cold water. Or better yet, you want to take that big pull off of an ice cold beer. Yeah, I can’t do that anymore. I am not a big “sipper”.  If I want to drink something, I want to take a nice sized gulp. Now every time I try to do that, it gets stuck, and comes back up as fast as it went down. I know what you are thinking “How can water get stuck?” Trust me it can get stuck and it does. 

Before the surgery I weighed around 250 pounds. Now I weigh 186 pounds. I might swing a pound here or there, but I have maintained this weight for a number of months so it is safe to say that this is my new weight. I like the way that I look. The exception to that is how I look in a muscle shirt. Recently I needed something to cover my scar while in the ocean over vacation. I tried on a couple of muscle shirts and yeah, no one needed to see that. Trust me not a good look. T-shirts work, I will stick with t-shirts.

I do not like my scar. It’s not healing correctly. It still hurts and is really ugly. The University of Minnesota wants to start steroid injections into the area so I think that I am going to give that a try.

So after a year what do I Know..
I know that I am a CDH1 genetic mutation carrier and I always will be. There is no cure for this and there is no way to fix it. So this label will be with me for the rest of my life. If research links this specific mutation to anything else then I will be at risk.

They did not find cancer so I am not a cancer survivor. I just had to make a decision. Sometimes I find myself wondering what would have happened if I hadn’t made the decision I did. Would they have ever found cancer? If so when would they have found it? Would it have been over this past year, or five years from now. The doctors feel certain that they would have eventually found it, but when? I don’t regret my decision, but I do think about the “what if” more than I probably should.

I wonder how my children’s lives will unfold. They have a 50/50 chance of inheriting the mutated gene from me. They have all made the decision not to let this “chance” spoil them out of any experience that life has planned for them. They are all strapped in for the long hall and ready to battle, fight, rejoice and celebrate everything life has planned. My god, my daughter and her husband are going to have a baby in January. If anything says “I got this”, it’s having a baby. All three of the kids have the same “I Got this” attitude. I can’t tell you how proud I am of all of them.

Still the father in me keeps reading and keeps researching in hopes that, if they ever need to make this decision, they will have options that I didn’t have a year ago. Advancements in treatments are being made all the time and my prayer is that hopefully, soon, they will be able to break the link between this mutation and cancer.  Wouldn’t that be nice.

It’s been a long year…

It's times like these you learn to live again

It's times like these you give and give again

It's times like these you learn to love again

It's times like these time and time again

(Times Like These  Foo Fighters)