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.

Making a List, Checking it Twice....

Tomorrow (August 1st) is a big day for Colleen as we are going back to Philadelphia to speak with her specialist.    First, we are going in for a breath test to see if she has SIBO.  If it is confirmed that she does, it could be the start of relieving at least some of her symptoms.   After that long test, we have a bit of a delay before she goes in to see the specialist himself.  It will be a long day, but hopefully a productive one.

As for making a list, this is very important:  When you go to see a specialist, write down everything you have been experiencing.  Even if you think to yourself "I have this symptom, but it probably isn't related to my Gastroparesis...", write it down anyway.   Perhaps that one symptom that you blow off because you think it is unrelated will lead your doctor into a new direction.   Not that you don't have Gastroparesis, but perhaps your condition is being made worse by something else going on in your body.

When you write up your list, show it to your loved ones, or whoever is going with you to the appointment.  Loved ones sometimes see things differently than the person actually experiencing the condition.   They may have something to add; but even if they don't, at least they will know what it is you are going to discuss with your doctor.    As a loved one, you really don't want to go into these appointments blind - you need to know everything that is going on.

It is my general rule that I will typically not say much during the appointment myself - allowing Colleen and her doctor to discuss the condition without me butting in every 10 seconds.  By the same token, you have to be ready to speak up and be an advocate for your loved one.   Be ready to back up what he/she is saying to the doctor.  If your loved one is complaining of intense stomach pains, make sure the doctor knows that you have seen the effect of it first hand.  If your loved one's condition has worsened, make sure the doctor knows that you are seeing the decline.

For many doctors, they see hundreds of patients.  They have your history in a folder, and probably remember who you are but the vision is cloudy.  It makes sense, as you often don't see a specialist more than a few times a year, if that.    Nobody sees the pain, suffering, etc. nearly as much as you do as a loved one.  You are more of an expert on your loved one's condition than you may think you are.  No, you can't cure it.  You can't prescribe a drug, or make medical recommendations of any kind.  You are a different kind of expert - the one who sees the patient every single day and can analyze their moods, their energy level, their emotional state, etc.

In the end, if you are making a long drive (or even a short one) to see a trusted expert in the field, make the time worth it.  Make that list.  Check it every day.    Don't ever leave that doctor's office saying to yourself "I forgot about this symptom!"  

Gastroparesis: Treatment Options

If you have Gastroparesis, or you know someone who has it, you should already know that treatments options for the disease do exist - but hardly any of them are dedicated to Gastroparesis itself, and they don't work for everyone who has the disease.

This can raise a few important questions - how can a drug like Domperidone work for so many people, yet have such little impact on others?     The same goes for all of the treatments that are out there for this condition (not that there are many).   You are pretty much playing a game of "flip the coin" with your health in trying to figure out if anything can work for you, personally.     Gastroparesis isn't completely unique in this regard, but that doesn't make it any less frustrating to the sufferer or to the loved ones.

My wife has tried many of the possible solutions.  The Domperidone didn't have much, if any, effect on her.   Erythomycin seemed to have some impact early on in her condition, but the relief didn't last.   She tried the Botox therapy, and that had no impact whatsoever on her condition. 

She hasn't tried some of the more radical approaches used to help the condition.  You may have read about the gastric pacemaker, which does what it implies:  Using a device implanted in your body that controls your stomach muscles.  The success rate on this technique varies, and it seemingly requires a lot of adjustments even when it does work.   I won't discourage anyone from trying it - it is just my personal belief that this would be more of a last resort than the first thing you run and try.  I liken it to a beta version of a video game - it works.  It is playable.   But, just as you are ready to capture the flag, a bug enters the picture and crashes your game.     By the same token, some people have instant success with the device and cannot live without it.

She has also not attempted to use Reglan, a controversial drug that I believe at one time was one of the gold standards for treatment of Gastroparesis.  The biggest problem with Reglan is that it comes with the dreaded Black Box Warning, as it can cause Tardive Dyskinesia, a serious movement disorder that is usually irreversible, especially if it isn't treated right away.    Some people do have success with this drug, however - though it is typically advised that one does not stay on it long term.  My wife has discussed the possibility of asking her doctor if she can give it a try, but naturally there is some hesitation there.   You can find many stories (good and bad) about the use of this drug online.  Some people consider it a savior; others say it was either ineffective or made their lives worse.

You may have heard of Cisapride in your research about the disease.    Cisapride has been banned due to the serious side of effect of cardiac arrhythmias.  Cisapride was once a wonder drug for many with this condition, but is no longer prescribed.  As an interesting side note, Cisapride is actually an approved medication for veterinary use.    

Beyond the typical treatments for the disease, you can try other remedies that control certain symptoms.  For example, ginger gum helped Colleen when she had a bad case of nausea.     

As a loved one, you have the responsibility to listen to the patient.  You can encourage and discourage, but remember that you are not the one feeling the pain every day (or most days).  If your loved one wants to try a more controversial/radical treatment for the disease, you have to do two things:  Gather all of the information you can about the treatment and support your loved one who is seeking it out.  By gathering the information, you are prepared to look for the signs of serious side effects.  You are prepared for the discussion your loved one will have with the doctor.   You are prepared to talk things through with your loved one as well to make sure this is the path they truly want to go in.    Just always remember that the person who is sick is desperate to get better, and sometimes radical approaches can help reach that goal.  It is your responsibility to be the "watchdog".   It may not always be easy - but nothing about this disease is easy for anyone.  But remember, nobody has it worse than the sufferer.

An Apple Fritter a Day.....

Don't let the title of this post fool you; an apple fritter a day, unfortunately, will not cure Gastroparesis.

Often, I have to pay attention to signals that Colleen may be having a (relatively) good day.   As a loved one, these days should be easily to spot:  More energy.  A bigger appetite.   Or, just looking at her face or in her eyes and seeing more life.  It is not easy to describe.  You just know that your loved one is having a good day just based on your own experiences.

There is nothing really funny about Gastroparesis, but it is interesting that my wife & I watch just about every food/cooking reality competition you can think of.    Shows such as Top Chef, Masterchef, Hell's Kitchen, Next Great Baker, The American Baking Competition, Donut Showdown, The Great Food Truck Race.  Believe it or not, I may even be forgetting one or two.    

This isn't really about reality television, however.  One night, when we were watching one of these shows, the topic of apple fritters came up.   Colleen explained to me that when she was younger, her family would take trips to North Carolina, and one of her favorite delicacies during those times were what they called "apple uglies".   Since I had noticed that Colleen was eating more and feeling a little bit better over the last few days, I surprised her the next day by going out and getting her an apple fritter to enjoy.

Apple fritters, obviously, will not show up on the recommended diet for Gastroparesis (of course, they won't show up on a recommended diet for just about anything you can think of), but the moral of this story is simple:  Read the clues that your loved one gives you.   If I had noticed that Colleen was having one of her terrible flareups, the last thing I would do is bring home a deep fried pastry with icing and a few pieces of an apple mixed in.     But since I noticed she was eating a little bit more, and I could tell that she was having a bit of a craving to taste a little bit of childhood, I made the decision to go get that for her.    The best part is the fact that she actually did eat some of it.    It made me feel good inside - seeing her enjoy something that she cannot often even attempt to enjoy.    I remain optimistic that some day, Colleen will be able to enjoy an apple fritter whenever she wants to have one, without a care about what it will do to her stomach later.

Finding the Zebra in a Field of Horses

"When you hear hoofbeats, think of horses not zebras".

In the world of medicine, this is an adage that many professionals live by:  If someone comes to you complaining of a stomach ache, think about gastritis, or indigestion, or possibly GERD.   Don't think about those "other" conditions that most doctors will never see in their entire career as a physician.   This is not necessarily a bad approach - if the odds are that 99% of the people who come to you with Symptom X have Disease Y, it is acceptable to look for Disease Y.   The problem is when a doctor does that, finds nothing, and decides not to even bother looking for Disease Z.     If you have ever had an illness - including Gastroparesis - you have probably encountered the frustration that comes with a doctor who seemingly cannot be bothered.

When it comes to Gastroparesis, there are elements that are both a horse and a zebra.  Most doctors don't seem to know much about what it is and won't order any tests to look for it (Zebra!), but yet 5 million people suffer from the condition in the United States (Horse!)  

One of the many themes I have talked about in this blog is the overall unawareness of the disease - I bet most sufferers who are reading this have gone through a frustration or two in their time.   You seek the opinion of gastrointestinal doctors, and some of them look at you as if you are an alien when you even bring this disease to their attention.

This disease manifests itself in so many ways that Colleen and I both believe there are other things going on inside of her body.    Now that she is in a group of 5 million or so horses, she wants to figure out if another zebra is making her condition even worse.   We are going to investigate conditions such as bacterial overgrowth, which can be a side effect of Gastroparesis - but can also be a condition completely independent of the disease.  Our suspicions are heightened by Colleen's constant succussion splash.   The splashing in her stomach is quite loud, and very noticeable.   It sounds like water entered her stomach and decided to pool there, like a puddle after a rainstorm.     Succussion splash is not a common side effect of Gastroparesis, so we are going to make an effort to see if it is something else.

Remember, your doctor is not a mind reader. And even if he or she is an expert in Gastroparesis, it is highly likely they have never actually suffered from it.   You have to go to them with everything - and ask for anything you want to ask for.   Don't just assume that just because your doctor is an expert that you shouldn't question them on what they are diagnosing or prescribing.     Colleen has an appointment with a specialist on August 1st and has a long list of notes on everything she has been experiencing.    She has many questions she wants to ask.    You have to remember that specialists typically aren't just a phone call away - even if you are an existing patient, it can take weeks to see them.     So, take full advantage of that time and get everything laid out on the table.  If it looks like they aren't listening, make them listen.  It is your body, not theirs, that is suffering.    Maybe, just maybe, they will discover that zebra.    And if they do, you never know:  You may only be a prescription or procedure away from going out to play with all of the healthy horses.

So, When Was I Last Healthy?

I once had a personal experience with a long-term illness.   It started on December 1, 2007 and last until sometime in 2010 or so.    This isn't a blog about my health, however, and I will spare the details.  However, my personal experience with such an illness is what gave me the inspiration for this blog post.

Eventually, when you are in the middle of a health crisis, you will start to forget what it was like to live when you were healthy - as if it was a completely different person who lived that life.  Your entire life is all about how sick you are, and how you are going to get through a day, a week, a month, etc.    You may get to the point where you just deal with it - you aren't exactly living your life, but you come to an acceptance that this will be your life forever.   

I had those same feelings when I was sick.   But here is the interesting thing about all of that:  When you finally do get healthy again, you start to forget about how sick you were during that long-term illness.  I sit here now, amazed that I wasn't able to even walk out to my mailbox or walk through Target without feeling dizzy and as if I was going to pass out.  As I said above, you feel as if a different person must have lived that life, because it just doesn't feel real anymore.   You get to the point where you don't even fear the condition coming back, even if it just might come back.

If you haven't figured it out by now, Gastroparesis is a strange illness.  It completely takes away your zest for life, but can suddenly go away.  In many cases, people don't start to slowly feel better until it resolves.  It appears that it just decides to resolve itself.      Think about having a leaky roof during a rainstorm.   You start to panic, you start to run around the house looking for buckets and towels.    You run to the spot where the roof is leaking, and it isn't leaking anymore.  However, it is still raining and you didn't patch anything. How did the roof resolve the leaking on its own?  That is what people who get "cured" from Gastroparesis often must think:  I didn't do anything special to get rid of this illness.  Why is it gone?  Can it come back? And for those who have unresolved Gastroparesis for months, years, etc they are left wondering:  Why can't mine just magically go away?

Nobody really knows the answer to that.  A doctor can't say it will go away tomorrow or next week.   By the same token, a doctor cannot say that it will never go away.  They have no idea what it is going to do or how it is going to manifest.  In the case of Colleen, the disease did seem to resolve - for months.  But she woke up one morning feeling ill again.  It hasn't gone away since, and the frustration because of that is overwhelming.

As a loved one, you have the responsibility of making sure to drive home the point that the disease has resolved for some people.  That many of those people went through the same living nightmare as you are. They may not believe that - but you have no choice but to believe that.    Simply put, even if you are a pessimistic person by nature, you need to dig deep and find your inner optimist.    Otherwise, you are both heading in a direction of despair.  And once you are in that hole, it will never be easy to climb out of it.