My Esophagus Is Dead

I just got released after two weeks in the hospital follow a major surgery.  My name is Joey and I want to to tell you my story to encourage those who are going through hard times and friends and family members of those going through hard times due to health issues.  I still have a long recovery ahead of me, but the hard part is over.

Seven years ago my first symptoms started.  It was hard to swallow.  I would throw up undigested food that sat in my stomach all night.  At least that’s what I thought.  I didn’t know it never actually got to my stomach. I didn’t understand how I can eat a meal the night before and wake up to a full stomach that hadn’t been digested.  I lost about 20 pounds.  I had to chug water just to try to get my food down.  And even then it still came back up half the time.  Something wasn’t right.  Eventually I was smart enough to go and talk to my Doctor’s about it.

After a couple endoscopy’s, they finally gave me an explanation.  The first endoscopy didn’t work because they couldn’t get the camera passed the food that was stuck in my esophagus.  Then they sent me to a surgeon that could remove the food from my esophagus through my mouth, and then they could get the camera down.  But finally, they diagnosed me. I had achalasia.  That means that the valve at the bottom of my esophagus was stuck shut.  It would not open to allow food to pass through into my stomach.  And because my food was staying in my esophagus, it was building up and stretching out my esophagus creating a little pocket of food right there in my esophagus.  At this point there was no recommendations on how to get it fixed.  All they told me was achalasia is the problem.  No recommendation on how to fix it. So I lived with the problem for a while.

Sill throwing up.  Still losing weight.  And several months later it was too much. I started the process all over.  I went in and had another endoscopy where they couldn’t get the camera down because of all the food.  But this time they gave me an esopohagram where they had me drink some glow in the dark liquid and took an X-Ray to see where the liquid went.  Of course it didn’t go anywhere.  The Doctor’s finally realized I can’t eat.  Of course that’s what I’ve been telling them all along.  After seeing this they sent me to the emergency room where they removed the food out of my esophagus through my mouth again. Then they took pictures of my closed sphincter stopping food from getting to my stomach.  But the good news this time is the emergency room Doctor knew another Doctor that could performs surgery and get it fixed.

After two weeks of only clear liquids, I got the recommended surgery.  They removed the valve completely at the bottom of my esophagus and wrapped the top of my stomach around my esophagus to create a new valve.  I was very excited, after another few weeks of only clear liquids to allow my esophagus to recover, I could finally eat again.  At least to a certain extent.  My esophagus was still stretch out with zero motility.  That means that my esophagus did not push the food down to my stomach. I had to wash my food down with water to get it to go into my stomach.  But at least at this point, my food did go into my stomach.  So I was very thankful about that.

Things went good for a few years after that surgery.  I know I still had limitations.  And I still couldn’t eat like every one else.  But my body was getting nutrition and I put most of the weight back on.  This is when I started dating my wife Rebecca.  It was embarrassing to go on dates with her at restaurants because I had to get up several times during the meal to chug water and get my food down.  But she was very nice about it and never judged me.  She judged me for other stupid things I would do or say.  But she was always understanding and kind about my eating disorder. Soon after that, we got married.  

When I started losing weight again, I know things were just as tough for her as they were for me.  But just like the rest of my family and friends, she has always been very supportive helping me through these health issues and Doctor’s appointments.  She might have even been stronger than me through all of this.  Always having faith that i would get through it. I on the other hand had doubts at times. Sometime I let these doubts in my mind take over. I questioned why this is even happening to me.  I’m a good person. Why me? I had to check my attitude.

I’ve gone to church my whole life.  I play the guitar on the Worship Team.   I give. I help others. I never swear. So why am I the one going through all this?  Every where I went, work, restaurants, church, parties, barbecues; why was I only one that couldn’t eat?  It wasn’t fair.  I hated going to going to restaurants with friends because I didn’t want to admit that I have a problem.  I didn’t want them to see me chug. I definitely didn’t want them to know I threw up. I didn’t want them to know about my situation.  I didn’t want to be different. 

I’ve been praying and confessing healing.  I’ve had my Pastor’s pray for healing.  I’ve had them lay hands on me.  Why wasn’t I receiving healing?  Was it my lack of faith? Was I praying wrong?  Is God real? Is it because of my sin? I didn’t know the answer. I still don’t know all of the answers. But as I look back, I know that God was there with me every step of the way.

After losing close to thirty pounds.   I started the whole process again.  I had another endoscopy that gave me no answers because they couldn’t get passed the food that was stuck in my esophagus.  Then after removing the food for the second endoscopy they discovered that my valve was closed again.  No food was getting through.  And again this time no recommendations on how to get it fixed.  No follow up appointments.  No referring me to another Doctor.  I was stuck on my own living with not being able to eat, and the Doctor’s at this point, were just going to let me live with it.  

So I took things into my own hands and contacted the same surgeon who performed my last surgery.   He had to do some tests to see what it going on now.  After having another esophagram, an X-Ray, and a CT scan, he came back saying that my esophagus is now stretched out four times the sized that it’s supposed to be.  It doesn’t push the food down to my stomach like it’s supposed to. And even if it did, the valve is stuck closed again.  My esophagus is dead.

His recommendation, to remove my esophagus completely.  An Esophajectomy.  No more esophagus at all.  That us scary stuff.  But not only that, he said that he can’t do the surgery at this time because I am so much under weight the surgery would be too much for my body to handle. The surgery is so major that my body, being 30 pounds underweight, would not be able to recover. 

Which brings up the question. How do I put on enough weight to have the surgery without eating any food?  If food isn’t going to my stomach, it’s impossible.  I couldn’t eat.  The whole reason I need the surgery in the first place.  After several weeks of trying to drink enough nutritional drinks to put on weight.  But of course throwing it all back up.  The answer became clear.  I needed a feeding tube. 

So after getting a feeding tube installed, and two months of eating nothing by mouth and everything by tube, I was able to put on fifteen pounds and I was ready for the surgery.  They told me that I would be in the hospital seven to ten days after the surgery to recover.  And it would take more than six weeks to completely heal up from this surgery.  And, due to the coronavirus, no visitors.  (Thankfully right before my surgery that changed and I was allowed one visitor per day.)

Now the whole question of how much is this gonna cost entered my mind.  Of course it was not a factor in deciding whether or not to have the surgery because my body was dying.  I needed the surgery.  I wouldn’t survive without it.  But it was and is still a concern.   How much is Insurance gonna pay?  And how much am I gonna have to pay?  Nothing in the healthcare field is cheap.  Hospitals are expensive.  Seven to ten days in the Hospital, could add up to be a lot of money.  But I needed the surgery so that’s something I’ll have to worry about later.

So the Doctor went in, through several incisions, and first removed my esophagus completely.  Then after that, he made some more incisions and moved my stomach up to my throat to create a new esophagus.  After all that, I woke up to enjoy seven to ten days of recovery in the Hospital.  I was so excited.  Just kidding.  I had a drain in my chest going into my lung, I had another drain in my nose going down my stomach pumping all the blood and juices out of my stomach, and I had a catheter in.  And of course no food or drink by mouth. I am still on the feeding tube.  Then after looking at some X-Rays, they inform me that I need to have another procedure to have a drain put in my other chest because there is liquid in my lungs.  I went to the Hospital for one surgery.  I wan’t supposed to be having another one. Or two…

Three days later, after another X-Ray, they are now recommending a third surgery.  They discovered that when they moved my stomach up to my throat, they also moved my colon partially upon there as well.  So they went back into my stomach, using some of the incisions they used for the first surgery, and moved my colon back down to where it’s supposed to be.  Now all my organs are where they belong.  So after eight days, three surgeries, and two catheters (Let’s just say after they took the first one out, they decided to put another one back in.  Way too painful), I was finally released to go home.

My wife, being so amazing as she is, got the whole house cleaned and ready for me.  So now I am at home recovering.  I’m still connected to the feeding tube, and still not allowed to eat or drink anything by mouth.  But my Doctor says there will be no limitations when I am allowed to eat.  My only limitations is going to be smaller meals more often during the day, because my stomach is now my esophagus and my stomach.  Rebecca thinks I’m crazy for watching the food network all day when I can’t eat anything. But I tell her its for inspiration and motivation. Diner’s, Drive In’s, And Dive’s, among other shows, gives me a lot of ideas for recipes I want to try and places I want to visit when I can eat again. I’m gonna be cooking and barbecuing like crazy when that day comes. And it’s coming quick. I can’t wait!

And I just want to thank my family being with me through this whole process.  

4 Comments Add yours

  1. Jan Ehlert says:

    Joey we love you Bud. Looking forward to that day of BBQs with you again. I’m thinking you need to write a book about all of this. Gods been with you and you’ve been given an opportunity to possibly help others with this or even to encourage others to not give up with no answers. We are so proud of you.

    Liked by 1 person

    1. joeykelly19 says:

      Thanks. Maybe this should be the beginning of a book.

      Liked by 1 person

  2. Irene says:

    Joey,
    Your story is amazing! I am so glad you shared it with people. You are a very strong person to endure all of this. I know that the strength you have to endure all of this is from God. He is a great God to us and he will continue to guide you through this journey.

    Liked by 1 person

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