Gastroparesis…… any idea what it is?

That’s okay, I didn’t have a clue either til a few years ago.   

Heres my story:

I decided to get braces and had to have jaw surgery during the process.  All of that was fine, but the second jaw surgery was a mistake.  It wasn’t a mistake that I had it, it was a mistake of the timing and the drugs prescribed for the pain afterward.  I knew that morning there was a very uneasy feeling even as I sat in the chair as the doctor came in, but I didn’t follow that uneasy feeling and stop and reschedule, and I have regretted it ever since.

Please don’t get me wrong, he’s a good doctor it wasn’t the surgery, it was the pills he prescribed for the pain after the surgery.  Even when we got to the pharmacy they were concerned, it just wasn’t prescribed much anymore.  Dilaudid, four times a day.  HUGE BIG MISTAKE!!!!

I basically stayed asleep for all seven days except when hubby would wake me up for protein and more medicine.  I guess the purpose of it was to keep me sedated while the worst part of the pain passed.  The medicine did its job but the cost of it was great.  I don’t mean the cash cost, the price I had to pay afterward, the damage it did to my body, the damage that can never be cured….. gastroparesis.

It took a lot of doctor visits, tests, specialists and finally a few trips to the Mayo Clinic in Florida to find out what was wrong.  I had every test there was for a gi problem, and let me tell you, some of them were anything but pleasant.  But at last, thanks to a very intelligent caring GI Specialist named Dr. Wang, I had an answer.  

There were even more tests, and the final one, radioactive nuclear testing.  It was an interesting and tiring and painful day at the Mayo Clinic that day.   At least I made a friend and she and I just spent the day together after eating radioactive eggs, and wondering the halls for hours and then keep returning for pictures every few hours, and for me the next three days.  We would just walk around with our hands on our stomachs like we were pregnant, at least it brought smiles from others instead of strange looks.

So what does it do to your life?  your body?  The answer is simple, it means your stomach is not working, paralyzed, dead nerve.  Things just don’t digest, and your entire gastro system is affected.   

Some people just have a mild case, that can still eat and enjoy life; others moderate that do okay at times, and other times painful flare-ups, and then there is the severe type.   That’s when life changes completely as you know it.  

Food the thing that is meant to keep your body healthy is basically a painful poison to your body’s gastro system.   You eat some type of food, any type of food and it just sits in there, for my body way too long;  causing nausea, indigestion, abdominal swelling, sometimes vomiting, among other things, and enough pain to make you want to scream.  

Does it go away in an hour or two, no try a few days later when your stomach is treated.  So what do I eat, you wonder?  I basically don’t.  Its down now to where it is liquids the majority of the time.  Protein drinks, not the ones kids love today; its the ones like boost and ensure; and several of them a day, herbal teas, peppermint oil tea, and lots and lots of water.   

I used to hate this routine, it was a very low dark time for quite some time.  But after a few years I finally have a routine, doctor approved.  Proteins, and liquids (Coffee, tea, water) for six days a week.  I eat what I want on Saturday, deal with the pain, GERD, indigestion, nausea and bloating and immense pain til Wednesday morning.  And then I treat it with prescription medicine and proceed.  Each week of every month; every month of every year.

Do I rebel sometimes and eat on days other than Saturdays?  Yes.  And I regret it immediately, but sometimes the hunger just gets overwhelming, and at times you get to where you’re so weak you can’t go on, without a bite of solid food and tired, oh my, I’m always tired, always.   But each time, I eat like that I regret it horribly, even though I needed it, because of the pain, GERD, bloating, indigestion and on and on, it is unbearable.

What’s really hard, people being normal and eating with you in the same room, or Holidays, you want to eat at family gatherings, but you know if you do, it’s going to bring unavoidable consequences.  And I struggle with what to do, so do I just drink some tea, and avoid the food, and physically be okay; or give in to all the smells and eat and suffer for hours and days? 

It really is a horrible disease.  And the majority of people around you can not start to understand how you feel, physically, mentally or emotionally. It’s not a visible paralysis of a limb, a person cant see a paralyzed stomach so they just don’t and can’t understand.

This blog isn’t for any of you to say bless you, or have pity or anything else.  

I wrote this very personal story so that others can understand that pain pills can be very dangerous, even when prescribed by your doctor for just a short time.  Please, people, be careful, with what you take, and what you do.  And if you have this disease don’t give up, life is still worth living, yes there are changes to be made, but you can adapt to anything if you put your mind to it.

For those of you with a loved one that suffers from this, please try to be understanding and supportive.  It’s really hard to accept and deal with.  There is no cure, only learning what works for each individual and doing your best to take care of yourself.  So folks, please do all you can to help your loved one adapt to this new way of eating or not eating whatever the case may be, they need your support, love, and understanding. 

And for those of you with such symptoms, search and find a doctor that is knowledgeable and compassionate that can and will help you.

You can and will get used to this in time, and accept it for what it is.

You can and will get through this. 

Why?

Because your a strong-willed person and life is meant to be enjoyed, no matter what your circumstances.   

So live and enjoy this journey called life.

You are so worth it!!!!