Gastroparesis Myth #2: "You've Had It For (Insert Time); It Likely Isn't Going Away"

In our travels going from doctor to doctor for this horrible condition, my wife has run into all types of doctors - ranging from being completely clueless to being on top of their games.   If you are recently diagnosed with this disease, it may not be easy to figure out who the clueless ones are.   But after a while, it becomes quite noticeable who knows what they are talking about, and who is just making stuff up so that they can outrageously bill your insurance company.

Of course, you will also run into the doctors who are somewhere in between - they know about the condition, they are quite knowledgeable about it, but they just miss the mark ever so slightly on key aspects.  Colleen went to one of these doctors; I am not going to say visiting him was a complete waste of time, because he knew what he was talking about (for the most part), but it also wasn't 100% worthwhile because I felt he missed the mark in a few spots.

One of the spots where I felt he missed the mark was when he told my wife, "You've had it for more than 6 months - it is not likely going away".   This after reading her history and noticing something very obvious, yet ignored:  Colleen's condition did resolve for a period of a few months before coming back again like a freight train.   Of course, using a word such as "likely" covers the doctor - "Doc, I feel better now.  You told me it wouldn't happen!"  "I didn't exactly say that - I said it was unlikely!"    There is no way for a doctor to ever be wrong in this scenario - if you don't get better, he was right.  If you do get better, well he had the built-in excuse.

Here is the bottom line:  If you read stories online, you will find that many people got better after years of battling this disease.   A good number of those people got better seemingly out of the blue - a true, "One day I had it, the next day I didn't" type of scenario.   Others sometimes get relief from procedures such as gall bladder removal, but that doesn't mean you should rush to a surgeon right away to get it removed.  Gall bladder surgery can work when there actually is something wrong with the gall bladder.  Makes sense, no?

Doctors do not know everything - especially with a condition like this.  Remember this post from a while back when I said that a doctor that says "I do not know" is often the doctor you want to stick with - because it takes a major swallowing of a doctor's pride to freely admit they have no idea what your problem is.

This particular doctor tried to push my wife towards the gastric pacemaker device, something she wants to avoid and really shouldn't be pushed towards. (Interestingly enough, the doctor who told my wife "I don't know" told her he only gives the pacemaker to patients who basically pound on his door and beg for it. That is how it should be - don't push the patient; give them the information they need and let them make the final decision)

In the end, as you read this, I of course cannot guarantee you will ever get better or that you won't get worse - what I can say with certainty is that people do recover from this and it likely happens more than you think.  Remember, the people you interact with online who have this condition represents a small percentage of the total population who has the condition.

I try to keep the positive faith, even when Colleen is at her worst points - as a loved one, you again have no real choice.    I just hope that some day, we won't have to worry about statistics and wonder how some people get better and some don't.  I hope the day comes where everyone can be healed instantly after diagnosis.  We may not be too far away from just that.

Gastroparesis Myth #1: "You Look Good, So You Must Feel Good"

If you are a Gastroparesis sufferer, you have probably heard it many times:  "You look fine".  "You look really good!"   "I thought you would look thinner!"     That is a part of the craziness of this illness:  Looking normal is, in its own way, a symptom of the disease.  If someone breaks their arm, they are probably walking around with a cast.   Hence, everyone knows that they broke their arm.     If someone is sneezing and coughing, you can make a safe assumption that they probably have a cold.       People with serious diseases like Parkinson's have obvious outward symptoms of the disease.

This doesn't work for Gastroparesis.  If you walk by a sufferer on the street, you wouldn't think there was a thing wrong with them.   If you visit them at their residence, they can usually muster the strength to get out of bed to greet you and talk to you.   People with Gastroparesis may be out taking a walk, as exercise actually helps with some of the symptoms for some people.

On top of that, one of the symptoms of the disease can actually be weight gain.  Whoa!  Wait a minute!  A person is sick, they can barely eat, they may have malnutrition - and yet they can gain weight?  The answer to that is YES.     The human body works in mysterious ways sometimes - but it also knows what it is doing.  If your body feels as if it is not getting enough calories or nutrition, it will tend to store what it does have.  There are other theories as well - some people with Gastroparesis try to get whatever calories they can get through any means necessary - and that could mean a higher carb/higher sugar kind of diet which tends to lead to weight gain as well.    Also, many Gastroparesis sufferers have a hard time staying active - the disease rips away their energy, and they tend to sleep and rest more.   So even though you are taking in less calories, you are not burning them off as easily.

I have read posts online from people who claim that their doctors refused to diagnose them with Gastroparesis for this very reason:  They gained weight, or they show no obvious signs of being underweight.  Hopefully, those doctors have become more educated through the years - Gastroparesis is not a weight-loss disease.  Never has been, never will be.

As a loved one, you should never fall into this trap; thinking that the patient looks healthy, so they must be healthy.  Looks can be, and often are, very deceiving.  Don't judge by how the person looks - judge by how the feel.  Remember one of the basic mantras:  No healthy person wants to stay in bed and be unproductive most of the time.  They want to live the one life they have been given.  

Searching for a Positive Light

It seems that when one blogs about Gastroparesis, or reads about it online, a lot of what is read is gloom and doom.  Although I have tried to make my blog a little bit lighter, sometimes even that can be tough. (On top of that, if one is going to blog about the condition, there has to be some seriousness attached to it - it isn't exactly a disease you want to joke about).

Sometimes, however, you have to look at the positives in life - both small and big.  If you are a Gastroparesis sufferer and you have someone in your life who truly understands you, consider that a positive.  You may be surprised (or perhaps not) at the percentage of sufferers who have a support system of....nobody.    Although you may not want to "burden" your support system, you really don't have much of a choice.  If they are supporting you, they are doing it because they love you, so take advantage of that.   Advantage is such a tough word, isn't it?  "I don't want to take advantage of anybody!"  Of course you don't - nobody does.   A person who truly gets you, however, will not see it as you taking advantage of them.  Trust me.

If you enjoy listening to the birds sing, pull up a chair in front of the window and listen to them sing.  Feed them, if you can.    It will help you take your mind off of your horrible condition and focus on something truly remarkable:  Nature.

Pets offer you unconditional love, and they will never think you are taking advantage of them.    Animals are loyal - heck, even if I approach my wife, I get barked at by two of our dogs.    It doesn't really bother me, because I know they are protecting her - keeping her safe in a time of a need.  If she doesn't have the overall strength to protect herself 24 hours a day, they are more than willing to take on the role.    One of our dogs is extremely (to put it mildly) active, but yet has the sense to be relatively calm when my wife is sleeping.  Our oldest dog is the great protector - he actually sleeps right next to the door to the bedroom sometimes.  If I make even a slight movement in my chair from my office, he will sometimes start barking.   He is the sweetest dog, but one sound of that bark is enough to make anyone hesitate.

Many people say listening to music, or doing crafts, etc. are other ways to keep your mind occupied on things other than Gastroparesis.    Colleen uses Candy Crush Saga as a diversion, but she has actually completed every level they have ported onto the iPad.  She is waiting patiently (?) for new levels to be created.

Managing your condition as best you can is a key to getting better - it won't cure you, but it will help you continue on your path of wellness.    When a sufferer is going through a bad flareup, often sleep is the only time they have when they don't focus on it (and sometimes falling asleep can be a major issue).  This is when you need to dig down deeper to do whatever you can to keep your mind off of it as much as possible.

As a loved one, part of your job is to come up with whatever you can to at least temporarily take their minds off of things; doing something silly can offer at least a few minutes of laughter.   Play it by ear - continue to support - and remember that a positive mind can lead to better overall health.

Gastroparesis: It's Not Just the Stomach

If you live with someone who has Gastroparesis, you live with the every day ups and down - the pain and sickness they go through, how hard it can be to get out of bed, etc.  If you are somebody with Gastroparesis, you may fall into a bit of a rut sometimes; thinking that people do not fully understand your condition and can't actually believe you are as sick as you know you are.   Although that can lead to frustration, anger, and the feeling of being trapped and alone, you must remember something:  If someone isn't around you 24/7, it is going to be very hard for them to fully understand your pain and suffering.    That is why sometimes, simply having a support system that understands -  even if they don't fully get it - is very important.

The other day, I was talking to somebody I know who thought Colleen's condition was only bad whenever she attempted to eat something.     This is not my attempt to call that person out - he/she probably reads this blog, and it isn't something that was offensive.   Gastroparesis is a stomach condition.  The natural thing people will think is that the condition will only cause problems when you attempt to actually use your stomach; almost like if you have a pulled muscle.  If the muscle isn't in use at a particular moment, you may not feel any pain.  But once you move in a way that makes that muscle do some work, OUCH!  The pain can be unbearable.

Unfortunately, that is not really how the condition works.   Eating definitely makes the symptoms worse at times, there is no doubt about it.  When the nerve needs to try to digest food, and it can't do a good job of it, the patient is going to suffer the consequences.  This does make sense.  But think back to one of my earlier posts about the 24/7 stomach flu.  When you have a stomach flu, it isn't only your stomach that is sick - your whole body feels sick.  The mere thought of food can be enough to make you run to the bathroom.   That is how it is with Gastroparesis - only the "stomach flu" in this case is not your garden variety 24-hour condition.  It can take years for it to go away, if it ever does.

Gastroparesis completely zaps a person of their energy, their zest for life.  Some sufferers cannot sleep (Colleen has had an issue with this recently) because of the condition, and will end up laying in bed just hoping to get some hours of relief.   

So, yes - the condition itself lies inside of the stomach.  But that doesn't mean that the stomach is the only thing it impacts.    It is a domino effect; you see it with other conditions.  One thing goes out of whack, leading other things to go out of whack, and before you know it, your body is in complete chaos.    In the case of Gastroparesis, it is a rather simple thing:  If you can't eat or drink, you can't get the nourishment your body needs.  And without that, you are not going to be able to function at the high level you need to live a normal life.

Gastroparesis: Can it be Life Threatening?

When I search around the internet looking for information on Gastroparesis, one of the questions I see quite often from people who have the disease is whether or not it is life threatening.

The simple answer to the question is "Yes".   If you search enough online, you will find cases where people have died from Gastroparesis.  A lot of those posts will read something such as "died of complications from Gastroparesis".  It is the same thing, IMHO.    You wouldn't have the complications if you didn't have the disease in the first place!  

This is not a post intended to scare people who are reading this blog.    If you read enough about the disease online, you will find many scary stories to read.    The amount of information at our fingertips is so immense that it can be a good thing and a bad thing.   The good thing about it is that you will find out that you are not alone.   Before the age of the Internet, I can only assume that this condition was a very lonely one to live with.    There aren't many (if any) support groups for it that exist outside the online realm.   You don't read about "Gastroparesis Walks" for charity, and you never seen it in mainstream media.   You don't see celebrities talking about it (the odds say that more than one famous person must have the disease - but either don't talk about it, or just don't know about it).     So, having the online realm to talk with the countless others who did with the disease is definitely a good thing.    The bad thing about the Internet is something I like to always say:  Typically speaking, the people who are in the worst shape are the people who go into support groups.   That is not exactly a revolutionary statement.  If you are dealing with Gastroparesis but can somehow still maintain a semi-normal life, you probably are not going to spend that life seeking out support groups online.   To expand on that, people who once had the condition but no longer do are probably out enjoying their lives again, without feeling an urge to share their stories online.  This isn't always true - we have seen people who have been cured talk about their journey - but it makes perfect sense.  You live with this condition for X number of weeks, months, years and it suddenly goes away.  What is likely going to be your first instinct?  My guess would be to go do something you enjoy.

It isn't always easy to "keep the faith" or "stay strong" when you are sick for so long.  You see the stories from those who get better from the illness and think that it won't be you.   That is human nature.  "It doesn't matter if John Doe won the lottery - that doesn't mean I will win it next!"

As I tell Colleen as often as I can, you need to take everything one step at a time in your journey.  Don't let a million things rush through your mind at once.  It will just drive you insane, and will just lead you down a spiral you won't be able to get out of.    As hard as it is, you have to try to keep thoughts of death out of your mind - remember that the statistics are in your favor in that regard (hardly comforting, I know, when you are dealing with such a life-altering disease.  "Yay!  I likely won't die - but that doesn't mean I will get to live again!").    If you have a doctor's appointment tomorrow, concentrate on that.  If he/she orders a test for next week, concentrate on that.   Keep focusing on the things you can control and try very hard to avoid focusing on the things you can't.  I, for one, will not claim that it is easy.  I will even go as far as admitting that it is nearly impossible.  But for the sake of your mental and physical well-being, you need to at least try your best.     It is a long journey, but there can be a happy ending waiting for you.

Test 1: CT Enterography

As stated in a previous blog post, the first test on Colleen's list is a CT Enterography.  Today was the day of that test.

Scheduled for 10:00AM, a little bit of traffic and a bit of a wrong turn had us arriving a tad later than that.  Not that it ultimately matters; when it comes to going to the hospital for tests, it appears times are merely suggestions rather than absolutes.  The receptionist didn't even blink twice over our lateness; heck, I bet compared to some people, we were probably early.   

The test is relatively simple, but for a Gastroparesis sufferer, there are complications.   If you are having a bad flare of your symptoms, the last thing you want to do is drink a bunch of liquid leading into a test.     However, Colleen has been quite sick lately and was able to pull it off.     In my first post about this test, I shrugged off the fact that you don't have to drink the disgusting shake that goes with some of the other tests.  That is definitely the truth - however, you are forced to drink 3 bottles of something that looks like lemonade, but likely tastes nothing like it.   You have to drink 1/3 of each bottle within 5 minute timeframes.   In the end, that adds up to 45 minutes of slowly drinking this stuff, hoping you can actually hold it down (again, Colleen was able to do so!)

Just as an aside - think about that for a second.  If you are around Gastroparesis, you know how tough it is for a sufferer to often eat or even drink anything.    It just seems like a bit of a cruel joke to have to actually drink something that is extremely undesirable to get this test when you often cannot even think of drinking or eating something much more desirable.

Anyway, the 45 minutes of drinking this liquid cocktail leads to a test that barely takes 15 minutes.   Obviously, we do not yet know the results.

Don't worry if you or your loved one has never had this test ordered by your doctor - it isn't a typical Gastroparesis test, but your doctor may order it if they have any suspicion that something more is going on.  I don't think a CT Enterography can rule in or out Gastroparesis - but it can rule in or out other conditions.

The journey has only just begun - having this test out of the way is quite a relief.  Round two of testing doesn't occur for about a month or so.  Until then, I will continue to update her condition.

The Good, The Bad & The Ugly

When my friends and I get together to play poker, one of the games we play is called "The Good, the Bad, and the Ugly". Pretty much, you have one row of good cards that you can use in your hand; one row of bad cards you must discard from your hand; and one ugly card that can kill your hand completely. Suffice to say, "good" is a relative term in this game - as typically speaking, the winner has a hand that is simply less shredded than everyone else's. (Imagine the horror when somebody with a good hand loses it all on the ugly card. That could be a good $2.75 down the drain!)

So, what does Gastroparesis have to do with poker, anyway? In general, nothing - but this particular card game can describe how a Gastroparesis sufferer feels. Yes, they can have those "good" days, but it is like a winning hand in the game described above: It's not really all that good; just better than the rest. For a healthy person, if you have a day that feels like a good day to a Gastroparesis sufferer, you likely wouldn't really consider it all that good. There are different layers of bad as well - days when a patient will have bad nausea, or bad pain, or any number of symptoms that Gastroparesis can cause. They may be able to function a bit on these days, but with the constant fear that the nausea may cause vomiting, or that they won't be able to hold down something as simple as a saltine cracker. On the truly ugly days, it can be terrifying - many Gastroparesis sufferers cannot eat or drink, and really have no desire to do so. Because they don't have that desire, their body isn't getting calories (energy), which leads to a general feeling of tiredness and sluggishness. And what does your body want to do at that point? Sleep, of course. If your body isn't getting energy or any nutrition, it is not going to be able to function at a high level - or even a manageable level. Lately, Colleen has had more ugly days than anything else, and it has been a terrifying experience for her. Sometimes, an ugly flare-up for a sufferer can last a day, a week, or even longer than that. It is a slippery slope - even if your body wants to feel better, it can't because the sufferer can't get anything into their body to fuel it. This is why some Gastroparesis sufferers have to go down the path of feeding tubes, just so their body gets the stuff it needs for survival. Some sufferers may turn to the "stomach pacemaker" device to see if that can get them back up and running. Some may even consider using the more potent (and dangerous) drugs such as Reglan. It becomes more of a desperate situation to survive, rather than to even think about thriving.

There is no more important time for a loved one to step in and be strong than during the ugliest periods. They will be filled with dread for your loved one, and you have to pick up the pieces. The ugly days actually put me more in "listener" mode than any other time period - sometimes, your loved one simply needs to talk and get it all out. Listening to them can be much more important at this point than trying to talk over the sufferer. They need to get their feelings expressed; a simple hug is a very powerful way to let them do that.

As I have said a few times, Gastroparesis never strikes any two people the same way, it appears. But I can almost guarantee that every sufferer has their own version of what is a good day, a bad day, and an ugly one. Cherish the good days, and hope that someday, they become more plentiful - or even permanent. It does happen, and it could happen to your loved one. If only we knew when, why, and how.

Testing, Testing...1,2,3....

When a doctor has no idea what is wrong with you (which happens quite often), they typically will run batteries of tests to see if they can help narrow it down.    When I was sick, the doctor was pretty much at the end of his rope.   One day, he pretty much checked off every test I hadn't yet received and it came back with a positive that nobody really expected.   That is how it works sometimes - you get tested for some random condition that seems impossible for you to have, and it ends up being at least a part of the problem.

Colleen will going through a similar situation, though it is not really a doctor checking off every box not yet tried - instead, the boxes he checked are aimed to get at the root of her digestive problem, whether it be Gastroparesis, something else, or a nasty hybrid.  

The first test Colleen will have performed is a CT Enterography.   Unlike some other tests you may have seen or heard of, this test doesn't require you to drink a (disgusting) shake 2 hours before the procedure; rather, you drink a few glasses of liquid over the course of an hour.  This test is used to take a close look at your small intestine to see if any anomalies are present.  It appears to be a quick and painless test (though I will assume the liquid is probably not very tasty).    

The standard test for Gastroparesis is a gastric emptying study, which is used to see how fast food travels through your system.  The standard test lasts four hours, though the test ordered for Colleen will be a 6-hour antroduodenal manometry test instead.  Although information is a bit vague, it seems that this test is a much more detailed version of a standard gastric emptying test, and requires two consecutive day visits to the hospital.     Different people have different experiences with how the test works, but the basic premise remains the same.     She will be having this test done in September, which was the earliest date they could get her in for the test.   She previously had a 90-minute test which lead to her diagnosis of Gastroparesis, but the 90-minute test is no longer considered to be reliable enough.    This is probably the test that I am personally most interested in (though they are all important), because it can give us a definitive yes or no on her Gastroparesis and its severity.  As a side note, when it comes to Gastroparesis, severity is hard to define.  There are people who have gastric emptying just out of range who feel awful anyway.  Severity is measured in how your loved one feels - not by a percentage placed on a piece of paper.

Colleen will also have what is called a Capsule Endoscopy.  As someone who is into gadgets and technology, this test intrigues me.  The patient swallows a vitamin-like capsule that has a wireless camera inside.  The camera takes pictures of the person's digestive track (thousands of them) for analysis.

As a whole, all of the tests that Colleen is undergoing will give the doctor a lot of new information that is needed to see what is going on with Colleen.  In the end, the answer may still be Gastroparesis with nothing else attached to it.     Although that wouldn't be a perfect diagnosis for her, at least it would be definitive and can allow her to move onto whatever treatments she can possibly find to help her.  If it isn't Gastroparesis, or if there is more going on than Gastroparesis, these tests should give us those answers as well.

No test can tell a patient how they are feeling, however.  If you took a test and it told you that you have pain in your shoulder, but you don't feel any pain there, you would probably conclude the test is wrong.   There has to be a mix of test results plus how the patient is feeling physically.  

This is why we have have a few doubts about Gastroparesis - Colleen is very ill, but some things just do not completely add up.     Of course, often with Gastroparesis, rarely does anything really add up.

As a loved one, you just have to continue to give your support in as many ways as you can.  Tonight, Colleen said something powerful:  "At least I have someone in my life who understands". The reason why I think "understands" is such a powerful word is because that is exactly what a loved one needs to do:  Understand.  You can't feel their pain, you can't live their pain - but you can be understanding and supportive.  Your loved one is not expecting you to be a miracle worker; he/she just wants the peace and comfort of you being there when they need it most.    Believe it or not, having a loved one's support will often lead to a healthier ending - because without support or encouragement, they may just give up.

I Don't Know What is Wrong with You.....

As people who know me can tell you, I am typically not keen on driving - especially in cities.  We live close to NYC and Philadelphia, and I have never driven in NYC.   Only since my wife got sick have I driven to Philadelphia, where her specialist is located.  I am not going to claim I suddenly enjoy driving in that environment, but now that I have done it twice without wrapping my car around a telephone pole (which I would have considered a success compared to some of the other outcomes I was fearing), I can safely say that I don't really have a problem with it anymore.

But you aren't here to read about my driving.  You are here about Gastroparesis.

Picture, for a moment, being so sick that need you go see a specialist for help.   You set the appointment (which typically takes months) and wait anxiously.   As the appointment gets closer, the specialist calls you and asks you to come in earlier in the day to get a specialized test to rule something in or out.

You get to the appointment and take the 3-hour test while anxiously awaiting your appointment later in the day.    Finally, you get in to see the specialist, and after a half an hour or so he comes out with a response such as "I don't know what is wrong with you...oh, and that test came back negative".

If you haven't been in that situation before, I bet your imagination is running wild now:  How come they consider you a specialist?  Why are you ignoring my obvious symptoms?   I drove all this way just to hear you tell me that you don't know?  Because this blog is family friendly, I will leave out some of the more brutal responses you may have.

But here's the thing:  That attitude is not the right attitude to have at all.  

If a specialist says "I don't know", it could be more of a blessing that a curse, even if it doesn't seem that way at first.    Why?  Because a good specialist is not going to throw you out the door at that point - they are going to attempt to solve the puzzle for you and run as many tests as possible to see what is going on.  

This is what happened to Colleen today.   Her symptoms do not really add up 100% to what you read about Gastroparesis online - but because everyone who has the disease has different symptoms and causes, it is easy to just write off your off-the-beaten-trail symptom as just another annoyance with Gastroparesis that hasn't been added to the list yet.

Colleen is going to get a boatload of tests done over the next several weeks.   In a future blog post, I will discuss those tests and what they are designed to do.   We need to get to the bottom of this whole thing, and these tests should give us a bigger picture of what is going on.

Yesterday, I mentioned that she was going to be tested for SIBO today. The test happened, and it came back negative.  

In the end, I appreciate any professional (especially doctors) who are willing to check their egos at the door and accept the fact that they simply do not always know.  In the case of Colleen's doctor, I think he doesn't know because he simply doesn't have enough information to draw a conclusion.  I am hoping that within a few months, we will have more answers than questions.