Damned if you Do, Damned if you Don't: The Gastroparesis Dilemma

One of my favorite comic strips of all time was the Far Side.   Gary Larson was a genius - telling a full (typically twisted) story with one drawing and a sentence or two.  

The comic strip above may as well explain Gastroparesis.    You may feel hungry with the need to eat, but you know that if you eat, you may end up crouched over in pain, or get a sudden feeling of fullness and/or nausea that could cause you to throw up what you just ate.      The human body cannot live without nutrients.  Keeping yourself hydrated can often be a problem with Gastroparesis - because there are times when you simply do not feel like eating or drinking.  There are times when you feel like eating or drinking and end up paying a price for doing so.   It is frustrating to the sufferer (and I am putting that mildly), which should make it frustrating for the loved one.   One thing you cannot do is attempt to shove something down their throats - on the other hand, you can't just avoid offering them something.    

My wife has been through the gauntlet.  One of the most frustrating aspects of her Gastroparesis is how the disease becomes so random within her own body.     There have been moments in the past where she felt good enough to ask me to go out and get a pizza.   Then there are times when something as simple as a cracker, baked potato, or white rice is impossible for her to hold down.   This can start a spiral of physical and emotional pain, one that is hard to recover from.   Whenever the disease goes into a lull, that feeling of dread is still there.  You hope the lull stays away forever, but with this disease, you never know.   Think about when you have a cold - when the headache, sneezing, coughing, or whatever symptoms you are feeling go away, you are confident that the cold is not going to come back.  And you would be right about that - a cold doesn't typically attack you, then give you the false sense of security before attacking you again.   Gastroparesis sufferers can only hope that is the case.   On top of that, even if the Gastroparesis resolves, you have no idea why it did.    The doctor can't put you in a MRI machine and say "You are officially cured".  It doesn't work like that.

Bottom line here is that, as a loved one, compassion is one of the best things you can do for a sufferer of this condition.   If you live in the same house, you are going to have no choice - you are likely going to eat a meal or two in front of a sick loved one who can only wish they could have a bite.    Be courteous about it - nobody is telling you to hide in the basement to enjoy your meal.   Just be in tune with the fact that your loved one is sick with a condition where food suddenly becomes an enemy.    And sometimes it is hard to be in the same room as the enemy.  

Gastroparesis Statistics: What do they tell us?

Before you look below, knowing what you know about the disease, can you guess the number of people in the United States who are impacted by Gastroparesis?     Most people would probably guess too low.  The people who see this as a trick question would probably guess higher - and still be too low.    When you have never heard of a condition, your instant reaction probably is that hardly anyone suffers from it.    If I were to tell you that 5-20% of the United States population gets the flu every year, you probably would think of that number as being accurate (it is).

But if I were to tell you that it is estimated that 5 million people in the United States have Gastroparesis, you may be taken aback a bit.    However, that is also the truth.

Now, when you break down that number, it comes out to approximately 1.6% of Americans.  That number may seem low when you look at it in percentage form, but it actually represents a fairly high number for any condition.    

Let us look at other conditions:

Parkinson's:  1 million

MS:  250,000-350,000

ALS:  20,000-30,000

I can go on and on with the list if I wanted to .  As I stated in other entries, my intention here is to not downplay other obviously severe conditions.   My intention is to show that Gastroparesis should be treated with the same type of urgency as other conditions.

Of course, the statistics don't tell us everything.  Sure, ALS only has 30,000 people who suffer from it.  Obviously, the reason for that is simple:  Most people die from it within five years, which means you aren't going to have a high number of living cases.    Diseases that don't have high death rates are going to have higher active numbers.

This is what can make the disease unbearable for the millions who suffer with it:  You aren't likely to die from it, but most of the time, you will find living to be a chore.     Who would want to go through life like that?  You know the statistics are in your favor to live - but the statistics also show you may not get better. 

This is why more needs to be done - the Johns Hopkins breakthrough is only the beginning.  If that can help save people's lives (not just talking about saving from death - talking about getting back to their lives before Gastroparesis), it could potentially lead more experts and doctors to dig into even better ways to save people.    Once the ball gets rolling, the potential for success is limitless.  Unfortunately, not many researchers have even picked up the ball, never mind try to actually roll it.

Finding Answers to Impossible Questions

You have probably had many instances in your life where you had to wonder how you got in the position you are in.        You end up questioning what happened, why it happened, and where you go from here.  Of course, many times, the answers to those questions are impossible to find.  The reason why you got sick, or why you have chronic pain, or why a loved one died too soon are things you often will never be able to figure out.  

That is when we often have to reach deep down into our souls to figure out the riddle - and if we can't figure it out, finding someone who can.

That is how life can be with Gastroparesis.    If your son is out playing with his best friend, and his best friend ends up missing school for a week with Chicken Pox, there is a decent chance your kid is probably next.   That is a concrete answer to why your son came down with the disease:  It is highly contagious, and his friend had it.  Cut and dry.

With Gastroparesis, there often is no obvious trigger.  You don't eat tainted hamburger meat and come down with this like you would food poisoning.   You don't hang out with a friend who has a stomach flu and end up coming down with one of your own.   You don't eat spicy food and suddenly have nausea and indigestion.   It may come as a consequence of another illness (IE, an unrelated illness that decides to attack this area of your body), but trying to figure out why that would happen is another mystery.

So, how can you have answers about this condition when you really don't know what the questions are to begin with?  That is the million dollar dilemma - if you can't ask the question "Why do I have this?", then you won't ever know why you do.    It seems that nobody really knows the why's and how's - and nobody can even really tell you what is going on inside of the body, per se.  They can explain the consequences of the illness - but can they fully explain what leads to those consequences?    In my opinion, the answer is not really.  This is not meant as a slight to the (few) experts that do exist in the treating of this condition.  It is just the nature of the beast.  How can one wake up one morning with a horrific stomach condition, and just have no idea how it came about, why it came about, and how to fix it?   Hopefully, somebody can figure out the answers some day.

In the meantime, if you are a loved one of someone with this condition, you shouldn't be expected to fully understand it.  The person suffering doesn't fully understand it, so how can you?     All you can do is support them during their lowest points and try your best to encourage them.   You can't possibly feel their physical pain, but you can help them with the emotional aspects of it.

New Treatment Option for Gastroparesis?

Just about every day for the past year or so, I always do web searches for Gastroparesis and look at the current news regarding the disease.  More times that not, a news search for this condition comes up empty in terms of finding anything new and exciting.

So imagine my surprise when I did a search today and up came a story about a procedure being tested at Johns Hopkins.   It is too soon to tell (they have only tried it on three patients - but all three have come out the procedure feeling better).     You can read more about the procedure here.

Nobody wants false hope, but this at the very least seems promising.  It is a procedure that tries to strike at the core of the condition, rather than just treat the symptoms of the condition.    Time will tell if it actually becomes a gold standard procedure for Gastroparesis patients, and whether or not it will have a high success rate.     As you know, most every magical cure for diseases that no longer pose a major threat to us had to start somewhere - perhaps this is the start of something big for Gastroparesis.

We can only continue to hope and pray that is the case.

Food! Food! Everywhere There's Food!

As part of an exercise, I would like anyone who is reading this post to think back to the last five times you did something outside of your normal, every day routine.   Whether that be a birthday party, running a marathon, or going to a baseball game.  

Now, thinking of those past five experiences:   How many of them involved food in some way, shape, or form?  I would assume most who run marathons (something I certainly cannot attempt to do) would probably treat themselves to a nice lunch or dinner afterwards.    If you go to a birthday party, the amount of food available may be endless.   If you go to a ball game and have $20 to spare, that should get you at least a hot dog (depending on which stadium, of course)

Now, I am sure if you are a Gastroparesis sufferer, the last thing you want to read about in a blog is how much food is a part of everyday life - even when we do things that are not in our every day routines.

That is the point of this blog, however.

Obviously, nobody should feel guilty about offering food at a party, or buying food at a sporting event, or celebrating with food after an accomplishment.     But for someone with Gastroparesis, this is what can cause  anxiety to rise - and one of the last things a Gastroparesis sufferer needs is increased anxiety.

How does this tie into being a loved one?      You have to understand that sometimes people who suffer from this condition do not want to be around food.  Especially the types of foods that celebrations often have.    It is not easy to sit and watch as everyone else is enjoying a birthday cake.   If you go to a dinner party, more than likely there will be a lot of compliments to the host on how good the food is.   For a sufferer of this disease, that as well can trigger anxiety - all of this great food that everyone loves, and I can't have any of it!

The bottom line is that if your loved one suffers from this, you may have to come to terms with the fact that often you will need to attend events solo (or with your children only if you have them).    It is OK to feel awkward about that very notion, but remember:   Your life is easy compared to the person who is staying home.      In my case, the most awkward moment was the first time I went to an in-law's house for a major holiday.    It may not feel normal at first, but I try my best to avoid missing these events.   I often come back home with many stories to tell, and my wife is interested in hearing them.   I try to avoid the food subjects, but she typically just asks me anyway.  

Sometimes, you just have to use your best judgment.    Guilt is a strong emotion - and it works both ways.  You may feel guilty leaving your loved one, but your loved one will feel guilty that you only stayed home because of their illness.    That is normal behavior.   Don't avoid it - embrace it and come up with the best possible solution.  Because the last thing you want is for either of you to go from "guilt" to "resentment".

I Guarantee It!

The words in the subject of this post are the most powerful words this entire post will contain.   If you go to a used car lot, and the salesperson tells you "This car will not break down for 50,000 miles - I guarantee it!", what would your reaction probably be?  My first guess is that you would ask about the nature of that guarantee.  You would probably get answers such as "As long as you bring it here for every oil change, or any time you notice anything wrong with the car.  If it is obvious you took this car anywhere else for repair, the guarantee is void."    That would likely be the most reasonable condition among a bunch that are completely unreasonable.

Of course, this is not a blog about used cars - it is a blog about Gastroparesis.  But there is a tie in - that is, if anyone tells you their product, service, etc. is guaranteed to make you feel better, you really should do one thing:  Run.   All they want is your money, and they don't care one bit about you or your condition - except for the fact that the longer you have it, the more money they can make selling you fake remedies.

This isn't to say that all products are necessarily useless.  You just have to be careful in making your choices. My wife encountered a Snake Oil Salesman in her quest to get better - it didn't have the happiest of endings. As I have said previously, I am more than willing to give details to anyone who asks for them - in this case, I may even write an entire blog post about this person, as my wife's faith in getting better was almost ruined by him.  

If a product or service is too good to be true, it is.  There is no cure for Gastroparesis.  There aren't many remedies.  Many of the products used to help with other stomach/digestive disorders have absolutely no impact on a Gastroparesis sufferer.   A few things may help with a few of the systems - ie, ginger can be great for controlling nausea.   But it isn't a cure for the CONDITION - it just helps relieve one of the SYMPTOMS.

So, if you see a product online for $49.99 that is "proven to help or even cure people with Gastroparesis", don't buy it.  Or at least research it.  But be careful - some of these people are very tricky and will put fake reviews up online.     There are many reputable people who fight and study this disease - go to them.  Go to a doctor who at least understands the condition.  Seek out REAL websites that deal with the condition - trust me, if a product for Gastroparesis is found online, it has been discussed in legitimate forums and facebook groups dedicated to the disease.

If someone offers you a program that he/she says will cure your condition, don't believe it.  It won't.   Some of the tips given may be useful, but they are not cures..and they are tips you can find in a $20 book dedicated to digestive disorders.

Finding someone who can legitimately help you is hard - but is doable.  Finding people looking to steal your money by praying on the sick is not very hard.  It is actually way too easy.

Oh, You're Just Lazy!

My wife showed me a post on Facebook the other night from a fellow Gastroparesis sufferer.  The post was a fairly long one, but the gist of it was this:  A loved one, or several loved ones, are beginning to think she is just lazy and unmotivated every day.

It is easy to fall into this trap.   You may be having thoughts about why your loved one wants to sleep more than usual, or why he/she doesn't want to go out and do things they may enjoy.  Perhaps you wonder why their motivation is simply non-existent.

Let me just give you a little bit of advice as it pertains to this:

1.  Think about to the time right before your loved one was stricken with this disease, assuming you knew them before they were diagnosed.    Think about how productive, how full of energy, etc. they were during that time period.     Do you want to know why I want you to think about that?  Because that is exactly how your loved one wishes they felt right at this moment.     Most people like to be productive in some way - or do the things they enjoy whenever they feel like doing them.  Most (healthy) people do not want to sleep all day.  They want to work.  They want to go out and do things.  They don't want to be feel trapped in their own homes, or within their own bodies.
2.  Think about how you would react if your loved one was going through this with a different disease that is more well-known.   For example, what if your loved one had MS and was having a flare-up that caused them to need rest for hours, or even days?   What if your loved one had cancer, and needed to rest after a chemo treatment, or is just having a rough time in general?    How about something like this:  What if your loved one had the stomach flu that knocked them out for 24 hours?  Would you think they were lazy?  I sure hope not.  And, for some people, Gastroparesis can feel like a constant 24-hour stomach flu that just never goes away.
3.  Think about the essence of the disease itself:   If your loved one suffers from it, you probably have noticed that there are days when he/she cannot eat.   Days when he/she even has trouble drinking a glass of water.   Think of what that would do to anyone's body:  You would get dehydrated and weaker, which causes you to need to sleep and rest more.

If you are a loved one who likes to read about the condition and how it has impacted others, also remember another very important fact:  This disease strikes people in different ways.  Of the millions who have it, I would assume that just about all of them have different experiences, different symptoms, and different causes.   So, just because you read a post from someone who may say something like "I have Gastroparesis, but it doesn't really impact my day to day too much", remember that the person typing that may have a mild form of the disease, or may have symptoms that aren't quite so severe as other symptoms.   Everyone is different - don't take what one person's experiences are as gospel.   Just help the person in your life who has the disease get through it the best you can.  It may not be easy - but it is essential for them to have people around them who support them 24 hours a day, 7 days a week.