Chronic Health Condition

This may sound crazy considering I chose to remove my stomach over 3 years ago.  But over the last several months I am accepting the idea/fact that I have a chronic health condition.  Let me explain bit.

Early March, I flew back to Maryland for my 3 year post-gastrectomy follow up appointment.  Leading up to this I was feeling great.  Good energy.  Maintaining weight.  Hair growing back.  So many good things. At these appointments they draw labs for so many different nutritional things.  One of them being iron levels.  For those of us without a stomach iron is not as easily absorbed.  Our intestines are routed differently.  When they remove the stomach they also do something called a Roux-en-y.  It's very common in bariatric surgeries as well.  Here's a graphic showing the difference in anatomy of somebody with a stomach vs somebody without.  Anyway, when they do the roux-en-y, the duodenum (the first part of your intestine) is routed a different way to stay connected to your common bile duct among other things.  To allow your liver, gallbladder, and pancreas to still do their job.

Image from https://www.nexussurgical.sg/upper-gastrointestinal-surgery/stomach-cancer/

Well, the duodenum is responsible for a lot of our iron absorption.  Now that my duodenum is re-routed, my food and supplements do no pass through it.  Making it a little challenging to absorb iron.  So the first 3 years without a stomach, I knew it was important to be diligent with taking my iron supplements.  But I didn't fully understand why.  At least I don't remember paying much attention to it early on.  So, they checked my iron levels in March and they were the lowest they have ever been.  They gave me an iron infusion.  It was a bit of a whirlwind as I planned my trip to be less than 24 hours because I didn't want to spend any more time there than I needed to.

Let me digress for a minute.  Early on this adventure, when I first learned about my genetic mutation, I was all about making a 'vacation' out of going to Maryland and the NIH.  Why not make the most of it?  Right?  Last year, I went by myself.  Which is totally fine.  I'd gone solo before and actually kind of the enjoyed the alone time.  But it was different last year.  COVID has really changed the atmosphere.  I didn't feel safe riding the Metro alone in the evening going from the airport to my hotel.  It's hard to explain on paper, but I didn't like it.  So this year, I opted into an overnight flight so I wouldn't need to navigate the city after dark.  

Okay, so adding on an iron infusion to my already jam packed day was craziness.  Rushed to the airport, with some time to spare thank goodness.  However, I did leave my AirPods at the hospital.  DOH! Thankfully the staff is amazing and sent it Fedex that day and they arrived on my doorstep the next day. Which is insane to me.  The bummer part was I didn't have them for the 5 hour flight home.  Thank goodness I had a good book to read.  Phew!

Okay, so after needing the iron infusion it really started sinking in that I am going to be living with chronically low iron the rest of my life.  That has not been an easy pill for me to swallow.  Accepting the fact that I have a chronic health condition has not been easy.  This whole time I've been trying to be 'normal'  Trying to prove to myself and others that living without a stomach is no big deal.  People do it.  Seahorses do it.  ;)

Maybe that had been my way of coping.  Coping with the fact that I had the possibility of getting the deadly cancer my dad had.  Maybe it was the only way I could cope while making the decision to take my health into my own hands by eliminating that possibility.  Telling myself, it's no big deal.  Lots of people have done it so why can't I?  In the moment, I felt I was doing my due diligence to ask all the questions, research all the things, interview many surgeons, watch other people who had gone though the same thing.  Trying to eliminate all possibilities of future complications and such.  I mean I had list of questions for the surgeons that was a mile long.  I had it printed out on several pieces of paper.  One for each surgeon I would interview.  To make sure I was asking them all the same questions and taking notes so I could compare the pros and cons to each one.  I was very active in the CDH1 facebook group leaning as much as I possibility to be the most prepared I could be going into this new chapter.  

Sometimes, you do all of those things to prepare yourself.  But none of those things actually prepare you in all the ways.  There's always something you can't foresee.  We are constantly growing, evolving and learning new things. It's kind of like becoming a parent.  You can read all the books, take all the classes, but when that baby comes is when you really start to learn.  

So I've learned through this whole process, just do the best you know how to do today.  Try not to stress about the future.  We can plan for the future, sure.  But it's not worth our fight or flight response to get all worked up about and stress about what might happen in the future.  My dad actually always told me I worried too much.  Growing up, he would ask me "what are you thinking about?  What are you worried about?"  I always thought he was crazy.  "He doesn't know me at all".  Haha.  Looking back, he knew me better than I realized and better than I knew myself.  So now, at almost 38 years old, I'm learning how to protect that fight or flight response.  I now know how stress can so negatively impact our bodies.  And I'm not about that.  Especially chronic stress.  Even at low levels.  Anyway.

I am so unbelievably grateful to have had the opportunity to make the decision to remove my stomach.  Now I can say, I will never get the deadly cancer that killed my dad far too young.  I just wish he had had the same opportunity.  I miss him greatly.  

Do you have a chronic health condition your'e struggling with?  I'd love to chat/connect with you.  Sometimes it helps just to talk with someone who can relate a little.  You can leave a comment here, or find me on instagram @the_eo_seahorse.

Be well and take care.