Communication is Key

As a loved one to someone who has a terrible disease, you may often try to downplay some of the stuff you are going through in your own life, to the point where you don't even communicate those feelings to your sick spouse.   After all, nothing you are going through compares to what they are going through.  They are lucky sometimes to get out of bed on their worst days, so how can you even think about complaining about your job, or the fact that it is raining, or that you can't get past a Candy Crush level?    Of course, I wouldn't probably recommend complaining too much about a game, but you get the point - everything in your mind seems trivial compared to the person who is sick.   You will get into your own mind that you can work everything out yourself, and move on without even your spouse noticing you were having a problem.

Here's the thing:  You have likely lived with your spouse for a long time - perhaps even years.  A small change in your behavior - even if you don't personally see it - is going to be noticed.    It is almost impossible to "fake" being OK, because your body is going to naturally do things that show that you really are not OK.

I say all of the above, while recognizing that in this instance, I don't practice what I preach.   That has always been the case; even before Colleen got sick.  I don't communicate my feelings very often, especially when the feelings are the not-so-good variety.    It is easy for me to express my love, my gratitude, and all of the finer points.   But put my back up against a wall, and I internalize it - at times, it would be easier to go into a jungle and lift up an elephant than it is to get anything out of me.   It is a part of who I am, and how I am built - is it healthy?  Not in the least bit.

Bottom line is that communicating with your loved one is a key for them to get through their disease as well - sometimes switching the focus from what they are dealing with to something you may be dealing with can actually make them feel a little better.   They can release all of their dreaded thoughts and concentrate more on what you are going through.   In the end, you have to try to get it out of your own mind (I never would say this is easy - because I can't do it myself) that your problems are trivial compared to your loved one's problems.    This is actually quite true, but you shouldn't simply minimize what you are going through in your own life in order to protect your loved one.

They will catch on.

An Antibiotic A Day......

As you may have figured out by now, I often need an inspiration for a post entry - sometimes that inspiration comes from a place completely out of left field and unrelated to Gastroparesis itself.  In this case, my inspiration came from my niece's recent diagnosis of a strep throat.

There is only one way to really cure a strep throat - through the use of antibiotics, and that is what my niece is taking.   Antibiotics are not necessarily "bad" drugs.  They can treat many horrifying conditions, and have been a life saver for many people.   When you have a bacterial infection, something designed to kill that infection is logically the way to go.

However, when you are dealing with a stomach condition, antibiotics can cause all kinds of havoc. To be exact, there is a theory that Colleen has that taking an antibiotic to cure a case of the shingles years ago may have contributed to where she is now.

Antibiotics do not discriminate when they go into action.  In addition to killing off the bad bacteria that is causing your illness, they also kill off beneficial bacteria within your system.   In some cases, an antibiotic is not necessarily designed to kill bacteria - some are designed to stop bacteria from growing.  This is the case for a drug Gastroparesis sufferers all know a lot about:  Erythomycin.     This antibiotic is often prescribed to Gastroparesis sufferers, but not for its bacterial benefits.   Rather, it is given because it is proven to have prokinetic properties.    This drug doesn't necessarily have a tremendous track record in the treatment of Gastroparesis, and it does sometimes have me wondering if it is actually doing more harm than good in the overall landscape.      Remember, nobody designed this antibiotic to cure or even treat Gastroparesis, and that in itself can lead one to hesitate before going on a consistent regimen.  

Think about that for a second:  You have a terrible stomach condition, so the doctor prescribes you a drug that attacks bacteria (both good in bad) in the region of your body that you are having trouble with.   Unfortunately, drugs cannot be programmed.  The doctor can't flip a switch in an Erythomycin pill that tells it to only help contract the stomach while leaving bacteria alone.

This is not to say that Erythomycin cannot work for you or anyone who has Gastroparesis.   Sufferers of this condition are desperate to find anything that can give them relief, and if this drug can provide that for you, I would not tell you to stay away.

By the same token, you need to be somewhat careful when using anything that takes good stuff out of your body.   Because of that, some doctors may recommend you take a probiotic - in theory, this is a great idea:  All the bad bacteria is forced out of the body, now let us reload it with the good stuff.   You can get over-the-counter probiotics, but another great source of probiotics comes in the form of Kefir, which is essentially liquid yogurt.   Colleen takes this every day, and doesn't even need to take a large amount of it.  (For the record, she is not on any antibiotics - she takes it because it is a part of a program she is on to try to get rid of the evil disease inside of her).

There has been debate on whether or not you should take a probiotic during antibiotic treatment or after.  I was under the impression that you should take it afterwards - after all, the antibiotic will just kill the good bacteria you are putting back in your body, right?  The answer in reality is that it actually doesn't seem to matter and it may be beneficial to take the probiotic during treatment.

Regardless, just remember that there is no cure for Gastroparesis - and that no antibiotic that has been formulated was designed to cure Gastroparesis.    If your doctor wishes to put you on Erythomycin (if you have Gastroparesis, this is a given), follow instructions carefully.  Typically, you will not want to take this like you would if you actually had a bacterial infection as your body will become immune to it.

In the end, it is my personal belief that antibiotics should only be used for what they are designed for:  To cure bacterial infections.  They shouldn't be used for viruses, and they probably should not be used for something like Gastroparesis.      I am not an expert and nothing close to being a doctor, but I do like to say that fitting a square peg into a round hole typically doesn't work in the long run.  

A Bit of Mind Over Matter

Today was our annual "Christmas Decorating" day - or, shall I say, it was Colleen's annual Christmas Decorating Day.  She doesn't really want or need me to do very much.  If I strung the lights outside, she would inevitably find something she doesn't like and redo them to her taste.  She is a perfectionist with Christmas decorating.  Luckily for our marriage, I am not - so it is very easy to have her take over the reigns without any pushing back.    Anyway, my mission today was to go out to Target and Lowe's to try to find additional lights that have caught Colleen's attention this holiday season.  Of course, today was December 7th, and the only stuff left in the stores was the stuff that nobody wanted.   Perhaps there is an Island for Misfit Lights that is next to the misfit toys from Rudolph.

Coming home with nothing is always a bit of a downer for me - I am the type of person that is more than willing to drive all over town, going into various stores, just to find the one thing that Colleen or myself wants.  I like the hunt, I guess you can say - if the product is on the shelf, I am going to find it somewhere.  

After I came home with nothing, I believe a bit of an urge came over Colleen - the urge to find those lights she wants to add to her already impressive collection.   That urge lead to the point where she decided to go out and try to complete the mission herself - with our dogs and myself waiting back in the car at every stop.  And, of course, complete the mission she did - as we went to another Lowe's that had more stuff in stock than the one I went to.

When you are sick, there is always that feeling that you simply cannot go anywhere.  When that sickness involves a horrible sensation in your stomach, it makes it even worse.  Your mind goes to places such as "What if we are 20 minutes away from home, and I suddenly get so sick that I have no choice but to throw up in an aisle somewhere?"   There could be more to it than just that - if you haven't been out in a while, the whole situation of needing to get ready in and of itself can be daunting.  When you are ill, you simply don't want to deal with stuff like that.  As I have said a few times in this blog, the one thing I can relate to with Colleen is being sick for a long period of time.  I remember the days when leaving the house simply wasn't appealing to me - my thought process being that it would do me more bad than good.    

This is where mind over matter can come into play - my inspiration for this post came from something Colleen herself said:  "I was browsing through the stores, and I wasn't feeling sick - because I had something else to occupy my time...to concentrate on".   This is so very true - when you are sick in bed for hours or days, the only sensation you feel is "sick".   When you get out of bed to do other things, the sensation of sickness may alleviate - it is still there.   It isn't that you aren't sick.  It is just giving your brain a break from the constant thoughts of illness.

If you ever feel this way, one thing I don't want you to think about is whether or not someone will look at that and say, "See, you aren't sick - you were able to accomplish so much today!"  This is not the place you need your mind to go; to be exact, you need to 100% not think about that in the least.  Doing something that you enjoy doing or something you want to do shouldn't come with feelings of what others would think when you actually do them.   That is a vicious cycle that is impossible to break.  "If I go out looking at Christmas lights, everyone is going to think I am healthy again - instead of dealing with that, I will just not do what I want to do".  That kind of thought process will never work for you - because going down that path will just make you feel worse, and won't let you break out of the vicious cycle you are in.

As a loved one, my advice is simple:   When your patient is feeling the need to do something they really miss doing, lightly encourage them to do so.  Never try to force the issue, but also don't discourage.   One step to breaking the curse that illness puts on people is to not always let it win.   That isn't easy, and it can't always be accomplished.    But on days when it can be accomplished, do what you want to do - and don't worry about what others think.   In the end, what they think means nothing - how YOU personally feel is what is most important.

Holidays and Sickness: A Lethal Combination

Years ago, my friends and I had a summer tradition where we would all go to Great Adventure, one of the many theme parks that exist in my area.   For me, the day was more about being with my friends than the actual destination, because anyone who knows me would tell you that I have no interest in going on most rides.  It didn't bother me to sit on the sidelines, or watch people's things as they went on the rides - it was my choice to not participate in the actual activities during those days.   I could have gone on rides if I wanted to - I wasn't injured, wasn't sick, knew all about the safety record of theme parks, etc.

How does this relate to holidays and Gastroparesis?    It seems to me, just by reading Facebook posts and blogs, that many family members of those who are sick think it should be like the theme park example above:  If you are sick, just don't eat!  Come anyway.  You are hiding behind your illness in order to avoid the holiday season.

If only that were true - as described above, everything I did was by choice.   In the case of holidays and serious illness, there is no choice.    You don't have a choice to put a big blob of mashed potatoes on your dinner plate, or grab a slice of cranberry sauce.   Your body physically doesn't allow you to do so.    Using my example above, when I was at my sickest point in 2007-2008, if we were still doing the trips at that time, I wouldn't have been able to go.  That wouldn't have really been my choice - my choice would have been to go - it was forced upon me:  My body wouldn't have physically been able to do so.

It isn't really as easy as "Just go and see your family".   It is "Just go, see your family, and watch them partake in the activity that makes you so sick."   There is also a mental aspect to the whole situation , as well.    As a patient, you don't want people to walk on eggshells.  You don't want them to think twice about eating a piece of pecan pie in front of you.   And of course, there is that feeling that "What if I do eat something, then need to throw up five minutes later?"   You want them to enjoy their holiday without the added effect of feeling guilty eating in front of someone who can't.  

Just talking to Colleen about this situation is enlightening in its own right.   Talk to your loved one if they are having a difficult time during this time of the year.   Do not attempt to force their hand - be impartial to the situation - leave the ball in their court whether or not they want to attempt to visit family and/or friends during this time.    Colleen feels all the emotions I am sure many of you feel - where a simple Facebook picture can make her sad, or the thoughts of another year missed with the people she loves makes her angry about the disease.    Then, of course, reading the "after holiday" posts about all that went right on that day, when she is feeling that everything in her life is just wrong  (Obviously, I am not saying to not post these things on Facebook if you know someone who is sick.  I am just simply pointing out the type of emotions they can bring out in someone who is sick and reading them.   These emotions are real.  I remember when my dad was going through his cancer treatments that he would sometimes talk of watching his grandson earn a varsity letter in baseball - he didn't get to see that day, but it was something he saw in the future that he may not be able to get to see - as I have said many times, I don't equate any disease to any other, but the emotions they bring out can be similar.  When Colleen sees Thanksgiving and Christmas on the horizon, that feeling of the fact that she may not get to experience them with her family yet again brings out the emotions.   Of course, Christmas 2013 has yet to come, so the hope that this evil thing inside of her will get better within the next month is still very much alive. )     As a loved one, if you have trouble understanding this, it is as simple as this:  Think back to when your patient was healthy.   Did they ever miss Thanksgiving, Christmas, or whatever holidays you happen to celebrate?  Do you think that one day they woke up and just decided they no longer want to partake in those festivities?    Colleen is more of a warm weather person than a cold weather person, but this time of year still rated very high on her list of favorites.

I do want to say that, from a personal standpoint, I don't get the sense from my family or her family that they feel in any way that Colleen is avoiding the holidays for reasons beyond being ill.  I see a sincerity when they ask me about Colleen and how she is doing, how the latest trips to the doctor have fared, and what is going on in the future  - but I do read the Facebook posts from people who say their families do have the resentment.    And families who tell their loved one to not even show up because the throwing up after eating "sets a bad example for their children".  It just makes me angry - and I am beyond the years where I easily get angry - to read those types of things.  They have absolutely no idea how the sick person is feeling - how much torture this time of year can be.    Their sick loved ones only wish they could once again have a choice, because if they did, the choice would be an easy one:  Partake in the festivities.   If only it were that simple.

Approaching This From a New Angle

A few years ago, Colleen got in touch with a person who marketed himself as someone who will (not may - WILL!) cure just about anyone of any stomach ailment known to mankind.   His approach was mostly military style - following his plan from beginning to end with no deviation was the only way his system would work - and, of course, if you didn't get better as the program went along, it must have been something you did, not something wrong with the system itself.  This is one of the oldest tricks in the book for a snake oil salesman - "It works 100% of the time!"  Of course it does - because the only results you publish are the success stories.  Everyone who wasn't a success story failed because they were too weak - or drank 9 ounces of a beverage when they should have only sipped 8.5.   That last example may be a bit dramatic - but it lets you know exactly how this individual operated.    Think about being someone who is sick - you reach out to someone who asks for a lot of money upfront (uh oh), and in return, you get a Gastrointestinal Bully - someone who refuses to accept the fact that perhaps his program isn't for everyone, and isn't willing to adjust things based on the "patient" he is attempting to treat.  

On top of that, Colleen reached out to this man a few months after she stopped the program because she was going through a rough time.    The answer she got from him was along the lines of "If you aren't feeling well, go to the ER".   That is when everything came together a bit - he has our money already, so he doesn't care if Colleen is feeling well (SUCCESS story!) or weak (Colleen's fault!).  All he cared about was the bottom line.

So, how does the above story relate to a new approach?   It doesn't directly - it is meant to show what types of people you are going to run into in your journey, and the types of people who will try to con you when you are at your most desperate point.  Do not feel bad if you have fallen for the various cons out there that are supposed to treat this disease - for one, you are not alone.  For another, having this disease is so horrible that it is a perfectly natural human reaction to try just about anything that is promoted as a "cure".   The bottom line when it comes to this disease is that there really is not a known cure - and no bottle of apple sauce with a "mystery ingredient!" will change that.

The new approach Colleen is taking, however, is a lot more promising than what is described above.   The reasoning is simple:  It makes a lot of sense.

Recently, Colleen found a Facebook site dedicated to "Healing Gastroparesis Naturally".   Let me start by looking at the title of the page itself:  Healing.   Healing is such a strong word in its own sense; it packs a different kind of punch than "Curing" does.    Healing is more of an approach to healing your body - healing the inflammation within your body - rather than try a drug with questionable side effects or go through a risky surgery that may or may not help you.  (Please do not take this as meaning "If you are feeling great taking Domperidone, STOP and try this other approach!"  Of course not - if anything you are doing is actually working, you shouldn't stop.  If you had a surgery and your life is back to normal, I am definitely not saying the surgery was a waste of time.   This is more geared towards those who have tried so many things with absolutely no relief).

So, what does this entail?  It entails a complete diet change - at least initially, though many of the ideas are the types of ideas you should probably follow for life.    Sure, even the healthiest person will occasionally buy a bag of cookies made with 150 ingredients.   But when you are in a situation like Colleen is in, you really cannot be even eating one crumb out of that bag.   Giving up processed foods is probably the #1 thing in her new diet, along with completely getting rid of dairy products, white flour, white rice, etc.    This won't be the easiest thing for Colleen to do; she is an ice cream nut, uses yogurt-based butter as a spread on things she eats, and has used white rice many times when all else has failed.     On top of that, as I am sure many other people with motility disorders have experienced in the past, you will sometimes have those good days where your first thought is: "Screw it - I feel good so I am going to eat half of that cherry pie!"   I think everyone knows that this probably is not the wisest idea; but, by the same token, it is an understandable position - you go months or years not being able to eat the things you want to eat - the moment you are able to, you probably aren't going to reach for the organic green beans in your refrigerator.  You want the sinful stuff!  I get it - Colleen can relate to that - and it will probably be one of her biggest challenges when she does have a good day.  But for now, the key for her is making those good days come more consistently  - until she gets to the point where there isn't anything but good days.

It also entails something called Essential Oils.    I have told myself many times in this blog to not even pretend to write about stuff you don't completely understand; it doesn't do the reader any good, and it takes away from my overall credibility.  So, given that, I am not going to try to pretend I understand everything that Essential Oils are supposed to do.   You can look them up online, or try the site that Colleen is using (http://www.essential7.com) to gain a better understanding of what they are designed to do.

There have already been success stories in using this approach to try to fight off Gastroparesis, or whatever the motility order may be.   However, the one thing you gather from this program is that the person running it isn't guaranteeing your health - or saying that if you follow her program, you are going to feel completely healthy within months.     She isn't being pushy, isn't sending e-mails asking us to buy this or buy that, isn't steering us towards high-cost stuff that isn't anything more than water with a few vitamins mixed in, etc.  Instead, she is letting her products do the talking, and letting her clientele pretty much do what they want to do with the information she provides (while also willingly answering questions from people on Facebook).  Also note that her life isn't dedicated to Gastroparesis, per se - her essential oils do cover a broad spectrum of problems.   But, for the purposes of this blog, the digestive system is the most important thing.

Obviously, I will report any findings we have from this approach - with the disclaimer that any findings we have with any approach are not "one size fits all".  If Colleen does this and starts feeling awesome, I am not going to guarantee that you will feel awesome as well.  If Colleen does this and has little or no change to her symptoms, I am not going to say the program doesn't work.  I would just say the program didn't work for COLLEEN.  That is as far as I can personally go with any of my reviews, which also includes the review I gave for the program in the beginning of this blog post.

As a loved one, you just have to continue to support the patient - anything they try to make themselves better are things you should not only support, but things you should get a better understanding of yourself.  I now understand what a snake oil salesman is like, and it isn't pretty.   Become your own expert on whatever is ailing your loved one - because it is the only way you will even begin to understand what they go through every day.

Feeling a Bit Fatigued....

If you have been reading these blog posts, you know how much of a roller coaster Colleen has been on.   From being diagnosed with Gastroparesis to having a second test come back (relatively) normal, to having blood tests show other possibilities.  The list goes on and on - when you reach this point, sometimes you do have to take a step back and consider what it all means.  What did all of those digestive tests really show?  What clues are hidden in plain sight within her bloodwork?    What steps can she take next to try to get to the bottom of this?  When you are very sick like Colleen has been, things can go a million miles per hour - your brain gets scrambled with so much information that it gets to the point where absolutely nothing makes sense.  

Recently, our primary doctor ran a lot of blood tests for Colleen.  Not all of the bloodwork was ordered by him - some was from other scripts given to us over the past several months.  In the end, it lead to a lab report almost as long as "War and Peace", and provided a few interesting clues but without any type of diagnosis.  Of course, no bloodwork in and of itself can lead to a diagnosis.     I have written at least once on here about blood results being nothing more than a "number on a page".   And that is exactly what they are - you can't look at a number and determine whether or not someone is healthy or sick.  The numbers are just supposed to help guide you in a direction.

Her bloodwork this time reveal a very low Cortisol AM number.   Low Cortisol is typically associated with a disease called Addison's Disease, but that disease is so rare (1 in 100,000) that you have to also look in other directions.   One of the directions it will lead you in is a condition called Adrenal Fatigue.   If you look up Adrenal Fatigue online, you will see a million different symptoms associated with it - you read enough about it, you may even be convinced that you have it.   It isn't about reading a list of symptoms and trying to fit your square peg into a round hole - it is about looking for the most obvious clues and putting the pieces of the puzzle together.     Not many doctors are going to come out and say "You have Adrenal Fatigue Syndrome".  It is probably treated similarly as Chronic Fatigue Syndrome is - some doctors recognize it, some are skeptical of it, and hardly any of them truly understand it.

This is not to say Colleen has it, or doesn't have it - all we know for now is that the results of a blood test reveal low Cortisol levels.  They also revealed high B-12 levels (which is not clinical - again, another possible clue that needs to be looked at).  If you look up "high B-12" online, you will be scared by some of the stuff you read.    Elevated B-12 levels in the bloodstream can certainly be a response to a serious condition - but that doesn't mean much of anything.   If you have a serious condition, it will likely first show up elsewhere, and the high B-12 will just be one of those "Well, you have this disease - and that is why your B-12 is starting to rise".    Any doctor that looks at elevated B-12 and concludes you have a serious problem just based on that info alone is likely a doctor you want to run away from.

So, what to make of this - low Cortisol; elevated B-12; a thyroid that in one test showed she was hyperactive, and in another test, showed she was low-normal.  Of course, all of this added on to the fact that she has a serious stomach ailment and is consistently fatigued.    There has to be a doctor out there somewhere who looks at the results of every test she has had, takes a deep look, and comes up with something that is the answer to this 3-year old riddle.  A riddle that is severely impacting a person's entire life.

Sometimes, we need to take that step back - not jam ourselves with so much information.   "One step at a time" has been one of my mantras to Colleen since Day 1.  But it seems that every step we take is a baby step.  We need a giant leap forward.

Spewing Negativity in Positive Situations: Never a Good Idea

Imagine a scenario where you are sick for 2-3 years.  Every day is a constant struggle - doing the simple things in life (such as eating!) becomes a chore because you don't know how you are going to feel an hour after you eat your meal.    You know, by experience, that you can have the same type of meal on two consecutive nights, and have your body react to in completely different ways.   You get to the point where you have no hope - thinking nothing is ever going to come along that is going to make you healthy again.

You wake up one morning, and pretty much from out of the blue, you suddenly feel better.   Your first thought may be "I've already been through this before - I am not getting a false sense of security!"  But one day becomes two.  Two days becomes a week.  A week becomes a month.  A month becomes a year..you get the picture.

This is how most Gastroparesis sufferers become "cured" of the disease.  (If only doctors and researchers can figure out why this happens - why suddenly a body that refuses to let you live lets you live again - we would be well on our way of figuring out answers that can lead to a real cure)

This entry goes a bit further than that - imagine the joy you have when this happens.  You feel great - you feel as if you want to tell the world, because you want to give everyone a sense of hope - that you became "cured", and that it can happen to just about anyone.     She contacts Crystal Saltrelli, the biggest Gastroparesis advocate you will ever find, and she shares her story with her.  Crystal in turn shares the story on Facebook.

You then read the replies to the post and end up slapping yourself in the head.   The negativity is actually painful to read - some people going as far as pretty much saying that it is impossible or that the person who had the disease resolve probably had a different diagnosis.   You read people talking about the fact that they are "RNs" and they know this can't really happen.  (I have all the respect in the world for doctors, nurses, specialists, etc.  At the same time, if the best motility doctors in the country don't understand everything there is to know about the disease and how it operates, then how can I expect anyone else in the medical community to really know?)

Bottom line?  Leave your negativity at the front door and don't come outside to play.    As you may know, if you are a sufferer or even a loved one of a sufferer, negative thoughts are a major problem with this condition.  And for good reason - your life has been stripped away from you.   I can definitely understand the feeling of "Why is this person "cured" and not me?", but that should not bring you to post your negative energy in a thread geared towards the positive.  There is enough negativity out there about Gastroparesis and motility disorders in general - there are forums and support groups where it is perfectly fine and encouraged to vent, to talk to other people who are sick, and get things off of your chest.  For many sufferers, it is their only outlet - as they don't have loved ones willing to talk or understand.  And even if they do have loved ones who are willing, the bottom line remains that the only people who understand a sufferers dilemma are other people who are suffering with the disease.    My post is not intended to discourage that practice in general - it is a GOOD thing to get things off of your chest.  There is just a time and a place for it - when you go to a sporting event and your favorite team wins, your first thought typically is not how poorly someone played.  You think about the positive - the team WON - and worry about the negative the next time they actually LOSE.  Same thing here - a person WON their battle...so why are we complaining about it? 

So, when those rare positive posts are put up, think twice before you decide to lash out.   People who suffer with these conditions need to have all of the hope they can get - and reading a success story brings positive energy.   And whether or not it cures you or not, there is never anything wrong with some positive energy in your life.    The bottom line is that the person who was sick with Gastroparesis - or whatever the motility disorder may have been - now feels CURED of the disease.  Nothing you can say is going to change that - saying it is impossible?  Well, call her on the phone or tell her to her face that what has happened to her is impossible.   Or look in the mirror, and begin to think about the fact that sometimes the impossible is very much possible.

Feeling a Bit "Hyperactive"

Anybody who has read most of my blog posts has probably come to one conclusion when it comes to Colleen:   She has been through a major roller coaster, though it is a roller coaster which mostly goes down instead of up.     All of the tests that have revealed very little, if anything.  All of the experimentation with drugs to see if any of them can trigger something in her body to make her feel better.

The company I work for instituted a new policy this year for our health insurance:  If we do a complete screening (including bloodwork and health q'naires), we will get a discount on our 2014 insurance.  Everyone in the family on the plan must get it done in order to qualify for the discount.

And, of course, the blood work added yet another new wrinkle to this very complicated saga:  Colleen may have hyperthyroidism.   I say "may" because for now, all we have is one number on one test.   But her TSH level was so low (low = hyper) that it strongly indicates that something is going on.  More testing will likely be needed to verify that, as a TSH level is only one piece to the puzzle.

The interesting thing is that we had considered that she may actually have the much more common hypothyroidism.   I was actually looking forward to get her blood results back, because I was convinced (in my own mind) that it would show an elevated (elevated = underactive) TSH.  Instead, we of course got the exact opposite of what we were expecting.

Unlike its much more common counterpart, hyperthyroidism is relatively rare.  It is estimated that 1% of the population in the United States has the condition.  It is very hard to find much research that has been done that would attempt to correlate hyperthyroidism with motility issues.   When you think about it, it makes sense - finding enough people that deal with both hyperthyroidism and a motility issue in order to do a comprehensive study is probably not easily done.

In the grand scheme of things, it does appear (on the surface) that a problem with her thyroid would not be causing all of her symptoms.   However, it needs to always be considered that the thyroid is a very important gland in the human body that essentially controls all of our hormones.   If your hormones are out of balance, the list of things that could cause is quite extensive.   After years of getting back mostly negative results, having something that is treatable come up on a blood test is at least a bit of a relief - if it turns out that she has a thyroid issue going on, it could lead to relieving at least some of her symptoms, if not all of them.

The next step is going to see our primary doctor, who will most likely refer Colleen to an endocrinologist.    However, a primary doctor is at least capable of getting some extra testing done.  He can order additional thyroid blood tests along with thyroid scans if he finds them to be appropriate.

It is just another layer to add on top of so many complex layers.  Is this the beginning of the tide turning, or just another frustrating dead end?   I will obviously let you know how it all goes.

An Emotional Toll on All

Ask anyone with any chronic illness, and I bet every one of them will talk about the emotional toll it takes - in some cases, the emotional toll can be worse than the physical symptoms themselves - if anything, your emotions can help fuel the physical symptoms like adding extra fuel to an already raging fire.

Recently, one of our dogs had an accident - an accident that was bad enough that he needed stitches (11 to be exact) in order to heal the wound.  With that, he had to wear a cone on his head for 10 days.  He wasn't allowed to use the stairs, so we had to take away some of the freedoms we give our dogs.  He wasn't allowed to go for walks; he wasn't allowed to go outside to go to the bathroom by himself.  Simply put, for 10 days, he wasn't allowed to do most of what dogs enjoy to do (of course, his favorite activity (eating) wasn't hampered very much).     I wasn't really thinking about what could happen when you have a dog under a cone for that length of time, but when he went back to the vet to get it taken off, he ended up having an ear infection due mostly to the fact that he was so restricted with the cone for so many days.  

There is a point to the above paragraph - and it is something I asked Colleen recently:  Wouldn't we be better off if we were all dogs?   Josh went through all of the above stuff, and barely blinked an eye about it - sure, he cried when he was left downstairs by himself.  But that was the extent of his "emotional" pain.  He just accepted it - another day in the life, I guess you can say - without any real knowledge of what happened, why it happened, or thinking if he will ever heal.    He didn't have to think about whether he would ever go for another walk, or if he would ever be able to climb the stairs.  Dogs live in the moment - one second at a time, and every morning they wake up is Christmas to them.

Of course, as humans, we cannot act like dogs - we have the capacity to think logically. We have the capacity to go down the road of "I will never get better".  We have the ability to laugh, cry, be mad at the world.   There isn't much we can do about that - we can't shut off these sections of our brains.

I wrote up a recent blog entry about a course of action Colleen has.  The first course of action (trying Erythomycin again) has been a colossal failure.  It hit her so hard that she is sicker now than she has been in a while, and simply needs to stop before the course of treatment ends.      The emotional part of this is simple:  Another dead end, another stone turned over that lead to no improvement.  Is it the end of the game?  No.   She has another antibiotic to try - one that is designed for bacteria in the stomach; but one that is also known to be initially very tough for the body to handle.    One of the positives of her next course of treatment is actually the unknown; unlike Erythomycin, she has never tried this particular drug before - so she doesn't have a baseline to compare it to.    

As a loved one, I think this one is simple:  If your spouse/son/daughter/etc. is experiencing the emotional pain that comes with being very sick, you will also feel it.   There is no "correct" approach when your loved one is going through a rough time - sometimes, just being an ear is enough.  Sometimes, a hug is enough.  Sometimes, trying to make them laugh or get their minds off of it can be helpful.   But it all needs to be tied into one simple thing:  Compassion for the patient.

Fearing the Unknown

A diagnosis of Gastroparesis is scary.   Perhaps not initially, because most people diagnosed with it have no idea what it means when they get the news.      Often, the real fear doesn't start to hit you until you go home, look on the Internet to see what it is all about.    You search around the Internet, finding stories from other sufferers - most of which are not pleasant to read, leading you to even more fear and confusion.  "Wait a minute!  My doctor didn't tell me I may have times when I go weeks without even wanting to get out of bed, or even eat a small meal!  What is going on?"

Colleen has lived that nightmare for a long time - and continues to do so, even after all of her tests did not show she had full-blown Gastroparesis, if she has it at all.    As I stated in another post, a negative test doesn't mean you are personally going to get positive results, health wise.    In the end, you are still sick - and now you need to search for new answers to all of the questions you have been asking for years.

That is where fearing the unknown comes in - I would never say to a Gastroparesis patient "Be thankful you have a diagnosis!", because I know what that diagnosis means - years of trial and error, using experimental devices and drugs that aren't even designed for your condition, hoping that some combination will at least help you try to live a normal life.  However, by the same token, Colleen is now at the point where she is back at Square 1 - it isn't Gastroparesis (yay!), but we don't really know what it is (boo!).   We are going down the path of antibiotics at the moment to see if they help her, but the fear there is that they have no effect whatsoever on her condition.   We are a long way from that point, but let us face the facts:  As humans, we have this ability to think far into the future, even when we perhaps shouldn't.   When a doctor gives you a long-term treatment plan, you are going to think about what may happen if the long-term plan doesn't work.  There is nothing you can really do to shut that part of your brain off.

Colleen has been feeling sicker the last few days - again, just driving home the point that "good news" on a test doesn't mean you will feel better.   It just leads to another Dead End in a long, windy network of roads.  Sometimes, Dead Ends are good - especially in the long run.  The more roads you take off the map, the more possibilities that go away in terms of what you may be dealing with.  However, in the short run, it can be trying - and discouraging.

As a loved one, you are going to deal with these ups and downs as well - you are going to be encouraged some days and discouraged on others.  You are going to see your loved one perhaps turning a corner, only to get hit by a giant truck once they do.    And, other than give your support and help them in any way possible, you will have that helpless feeling that there is nothing you can really do about it other than hope that the next time your loved one turns that corner, there is no truck flying down the street.

Results Day: A Shocking Development and More

An advanced warning:  This is my longest post to date.

When I started this blog a few months ago, I had a few decisions to make.  My first idea was that the blog was going to be about how a loved one deals with a spouse who has a chronic illness.  I thought about it, and came to the conclusion that it was too general.   Although a lot of what I write about is in general terms that can be correlated with any disease, I came to the conclusion that when I type about Colleen's stomach ailments, that doesn't really help those dealing with a spouse who has Multiple Sclerosis.    So, I decided to narrow it down to a specific illness that is so misunderstood that even doctors can't put their fingers on it:  Gastroparesis.

Admittedly, it did enter my mind that perhaps one day we would get tests done, and they would show us that Gastroparesis was not her primary problem.  Remember, as I have typed many times, we based the diagnosis on a test that is no longer valid in the diagnosis of the condition.   To be exact, if you are reading this and are about to get a gastric emptying study, make sure the test is not a 90-minute test.  It simply does not tell the doctor very much; if anything, it can lead the doctor down the wrong path.

Colleen had a special 6-hour test done back in September that checked to see how fast food (egg sandwich) and liquid passed through her system.  Here is the shock of the day:   The tests came back very close to being normal.    The liquid passed through her normally without delay.   At the 4-hour mark of the test, 88% of the egg sandwich had digested; they consider 90% and above to be normal.   So yes, a very very slight delay compared to what a doctor would normally see; but not to the point where you would really think full-blown Gastroparesis is the issue.   Her other tests (Capsule Endoscopy, Small Bowel Motility) came back mostly normal; a few things here and there, but nothing alarming in any way, shape, or form.

Gastroparesis is a weird condition in many ways - some people can't eat at all, and yet gain weight.  Some people can have 10% gastric emptying (very bad) and not really feel some of the consequences - some can have a 70% score and feel absolutely awful.    Colleen and I often have complained about why more hasn't been done to help fix this condition and find a cure.    There are many reasons for that, but one of the reasons is the simple fact that the disease itself refuses to present itself consistently.   It is very hard to treat a moving target.  If you cure one person with the condition by using Medicine X, then give Medicine X to another patient, they may not get any relief at all.    Think about that:  A medicine or procedure that can help one person get back to a normal life can have zero impact on another person - even though they have the same exact diagnosis.

So, where does all of this lead us?  The answer is:  It is complicated.  You may think that there is a bit of happiness in the fact that gastric emptying is likely not Colleen's biggest issue.   And, there is - as we know where that path can go.   But it isn't like the results of a test change how a person actually feels.  I wish it worked that way:  "Go get this test - if it comes back negative, I guarantee you'll feel better!"  Yes, there probably is a placebo effect in getting back good news from a test; but that effect won't last long - bottom line is that you are sick, and have just eliminated (for the most part) one potential cause.  I say for the most part because Colleen does have a slight delay; but working in the field I work in, I know about "margin for error" - and being 2% underneath what is considered normal during one test is a decent indicator that you probably have something else going on.

Dr. Fisher does have a plan in mind, however.  And the first step in that plan is bacteria.   Does Colleen have some sort of bad bacteria that has built up in her system that has caused her issues?  We don't really know.  She is going to start again on Erythromycin, an antibiotic she took for a very short period (2 weeks) when she was first diagnosed with Gastroparesis.  Your body does start to adjust to this drug, so prolonged use of it will lead to a decrease in effectiveness.  However, Dr. Fisher is going down the path of having Colleen take it every day for 5 days, then take 2 days off.    She will do this for a month to see if it helps relieve any of her symptoms.  If it does, it could become more of a long-term thing.

If not, it is on to antibiotic #2:  Rifaximin (Xifaxan).    Rifaximin is a bit different than most other antibiotics, as very little (if any) of the drug gets absorbed into the bloodstream.  Rather, it passes through your stomach and intestines.  The drug is most often prescribed for treating "traveler's diarrhea".

Of course, antibiotics are not selective:  While they can rid you of your bad bacteria, they also have no problem targeting your good bacteria as well.  Hence, once Colleen is done with this "trial", she then has to take a strong probiotic (Align was recommended by the doctor) to get the good bacteria back.  As a computer programmer, I liken it to wiping out a hard drive - you wipe out all the bad sectors, but in the process, you are also wiping out all of your good data.  You then have to go back and reload all that good data back onto the hard drive when you are through.   It makes perfect sense.

If all of this does not work, it isn't necessarily back to the drawing board.  There is actually a relatively new procedure out there that may sound a bit gross at first, but it has shown significant progress in the treatment of some diseases:  Fecal Transplantation Therapy.  It is exactly as it sounds - you take the fecal matter of a person with a healthy system and "implant" it into a person who has an unhealthy one with the goal being that the good feces will cure the patient of whatever bacteria is ailing them.   At this point in time, Colleen isn't really a major candidate for that - but if she continues to be as sick as she is, and most everything else has been explored, it could become more of a possibility.  (Luckily, those who devised this therapy are not stopping their research.   The overall goal, in the end, is to find exactly which bacteria is actually helping patients feel better - if they can discover exactly what it is, they could then develop an actual medication with that "good bacteria" in it, eliminating the need for this procedure!)

Those are bridges that don't yet need to be crossed  - we are now going down this bacteria path.  If it doesn't pan out, what's next?  We don't know.  As I said previously, one of the things I like about Dr. Fisher is that he doesn't pull any punches.  If he doesn't know the exact cause, he will tell you that - he may go through a theory or two with you, but he is not going to feed you answers that he doesn't have just so you feel good.   You may walk out of his office not feeling any better than when you walked in, but I think he rests easy at night knowing that he doesn't mislead any one of his patients or give false information or hope.

As for the future of this blog, for now, it is status quo.  I think this blog goes beyond just Gastroparesis in what it attempts to do.  It also describes Colleen's journey, and can perhaps ring a bell for others who have been diagnosed with Gastroparesis but may think there is something more than that going on within them.  Bottom line is this:  If you took a 90-minute study and were told you have Gastroparesis, throw it out the window.  It is essentially meaningless.   Demand a longer test (a GOOD doctor won't even need to be asked; they will throw the results out the window and demand that you get a longer test!).   If you feel things going on inside you that don't quite match up to gastric emptying, ask if anything more can be done.  Even if you *DO* have Gastroparesis, it is possible you have more going on than just that - getting treatment for other conditions can help you feel better even if you have underlying Gastroparesis.

Colleen's journey has been a long one, and it continues - I wish I can say we have an end in sight, but we don't - however, we have so much more insight now than what we had prior to today that it gives me some hope that we are finding the right path for her.    And for now, that has to be enough:  Hope.   I can't wait until hope becomes reality.

Getting Closer.....

Thursday is a big day for Colleen in her journey in trying to get to the bottom of everything she has been through.    We will finally get the results of all of her tests over the past month.   We have no idea what the tests will show; we haven't even received a hint from anyone as to what it may be.  This would lead credence to the theory that there is nothing that is immediately life-threatening.  Temple does have a reputation for waiting until appointment days to go over results, rather than call with them.  But I will just assume they wouldn't do that if something severe was scene on the images.

This is not to say that what Colleen has is minor in nature; obviously, that is nowhere near the truth.    Something is going on, and we hopefully will have some answers as to exactly what it is and if there is anything more she can do about it.

I have stated a few times on this blog (and, well - the title of the blog is about Gastroparesis!) that I feel Colleen has Gastroparesis....with something else going on as well.   But I am no doctor, and have absolutely no way of knowing that for sure.  The only test Colleen had prior to these tests was a 90-minute gastric emptying study, which is no longer the standard - and in most circles is considered unreliable in the diagnosis.   So, I am basing my own conclusions based on a test that should have likely not been ordered in the first place, as it is possible it lead to a conclusion it isn't capable of reaching.

I have done enough speculating - it will be nice to potentially get some hard facts.    As I may have mentioned before, Colleen was diagnosed back in the day with a Hiatal hernia which was, at the time, considered to be very minor in nature.    Here is the thing about medical conditions, however:  Sometimes, people with a "mild" form of a condition can still feel terrible.    As I have stated in other posts, one of Colleen's most noticeable "outward" symptoms is a loud splash that can be heard coming from her stomach area.  It just so happens that "splashing" is a symptom of Hiatal hernias.   Does that mean her hernia is causing the splash?  Again, not necessarily.   The puzzle is just very complex.  We will see if these tests reveal anything more about that.  

Obviously, I will be blogging more on Thursday - I won't really be doing a live blog, because there isn't any testing going on - just talking with the doctor.  I will take mental and perhaps some written notes, type them up, and let you know what is found out.  

Meanwhile, I hope the rain forecasted for Thursday stays away....

Gastroparesis and Information Overload

In other blog posts, I have talked about how the Internet can be a blessing and a curse.  It is a blessing because there are a few Gastroparesis Support Facebook groups where you can interact with others who have the same dreaded disease as you do.   While doctors and even some friends and family members may not understand fully what it is you go through every day, people in these support groups do understand.

However, I have also noticed that there can be, at times, a lot of what I like to call "Information Overload".  It is that point in time when so many people have responded to a thread with so many differing opinions that you end up more confused than you do informed.    This is not to say you should never give your opinion or input on a specific question you have knowledge about.  It is more to say that sometimes, as a reader, you need to step back and process the information most vital to you.

One of the most common areas where you will get differing opinions is when it comes to questions about particular doctors, hospitals, clinics, etc.     It can get very confusing when one person says "That doctor is great - I highly recommend him/her!" while another says "That doctor?  He did nothing for me - don't waste your time or money!"

Why does this happen?  The answer is quite simple, in my opinion:  If you go to a mechanic to get your car fixed, and he ends up making your car run like it just came off the lot, you are likely to have high praise for that mechanic.  If someone else goes to the same mechanic, but the car ends up not running quite so well, that person will have a completely different view of that mechanic. The mechanic probably ran the same tests, did the same types of diagnostics, made the same types of repairs, but just had two completely different outcomes.  The outcome of what happened with the mechanic sways your opinion - it doesn't necessary speak to the quality of his shop; it speaks to what happened with your car when you went there.

The same is true with doctors - sometimes, a doctor can run the same tests for two different people with similar conditions and have two completely different outcomes.  One person may respond quickly to the treatments offered; while the other person may get sicker or feel no difference at all after going through the same tests and being offered the same treatment.   Person A is likely to call the doctor a savior while Person B is likely to instead find the faults in that doctor. "He didn't cure me...oh, and I didn't like the way he spoke to me either."    It is easy to gloss over whatever personality traits you don't like when the doctor helps you.  If you had a doctor with less-than-perfect bedside manner, but he fixes you, you are more likely to say something like "He at times may not be the most pleasant doctor, but he gets results.  And that is what is important!"

So, what should a sufferer do with all of the information given?  The bottom line is that you should do what your gut tells you to do.   Take in all of the information - use it to guide you.  But don't let it completely sway you - a motility expert has years in his field - there is zero doubt that any one expert has probably given life back to hundreds of patients during his tenure.    I hate to say it is like the lottery, but in many ways, it is.  Sometimes, you hit the jackpot and find the right combination of great doctor who offers the perfect solution.   

As someone who works in a research industry and is known for doing compulsive researching on everything you can think of from toaster ovens to televisions to paper plates, it is fairly easy for me to hunt down information for Colleen - though she obviously does a great job on her own of finding things out.  That is what it ultimately comes down to - being your own advocate, choosing the path that you think is best for you, and hoping for the best.  No advice online can be a substitute for your own gut feeling.   Trust your instincts, and use the information you find as a guide.  In the end, it should lead you to where you need to go.

Gastroparesis: You are NOT Crazy

I draw some inspiration in my blog entries by reading online messages from people who have Gastroparesis - one of the most common postings you may see from someone is that "They go to the ER; and people look at me like I am crazy!"

There are a few things to remember about this.  For one, it is human nature for someone at the front desk of an ER to respond immediately to something they can see versus something they cannot see.  In other words, if someone is running into the ER with blood dripping from their arm, the natural human reaction is "This person is seriously injured!" (even if it turns out they are not).  If someone walks into the ER with a hidden stomach condition, you may not be seen as someone who is in seriously bad shape.  (Note that I am not excusing this behavior at all - hidden illnesses, in many ways, can be worse than those that are visible.  If you walk into an ER with a bleeding arm, it is instantly apparent what is wrong with you and what the remedy may be.   If you walk in with stomach pain, you could have a million different things going on).

The best thing you need to remember when this happens is that you are the only one who knows how you are feeling.  You are the only one who knows your symptoms.    If you are feeling very sick and are seeing things such as vomiting of blood or black stools, you can't be worried about what the ER doctors or receptionists will think; you need to get to the hospital and scream at the top of your lungs if you need to. 

I always ask Colleen what she wants to do - even when she wants my opinion.   Rarely does she go to the ER - we actually haven't been there since her diagnosis.  In the end, it is up to the patient and how they feel - if you are feeling sensations that you never experienced before with your condition, you should at least seriously consider going there.

I completely understand the frustration - we have seen it first hand.   But even the very best ER doctors can't tell you how you are feeling.  Make sure you get the care you think you need.  Don't hesitate when it comes to your life - even something relatively minor can become much more serious if not treated promptly.

This is not meant as a "scare post".  My main point is simple:  You should know when an ER visit is warranted.  And when you know that, GO.   If you have to wake up your support system in the middle of the night to do it, then do it.  I know that personally, I would rather be tired with a healthy wife than fully rested with an unhealthy wife.   

Gastroparesis Diets: What Works, and What Doesn't?

The title of this post is a bit misleading in that you may think I have a magic formula for what works and what doesn't work.  I wish I did.   The answer to the question in the title is simple:   I don't know.  Nobody really knows.

If you look up Gastroparesis Diet online, you will see many suggestions as to ways to "control" your symptoms through diet.  Smaller meals.  Lower fiber.  Lower fat.     When you think about the condition, these suggestions make sense:  Smaller meals will digest quicker.  Fiber, while good for you in general, is bulky and harder to digest.   Same goes with fattier foods.    You will see recommendations online for certain types of drinks (Orgain gets a lot of rave reviews for Gastroparesis sufferers; as do some gluten-free products if you have a sensitivity to gluten).   Does that mean it will work for you? Not necessarily.

The above paragraph seems so cut-and-dry, but just like everything else with this condition, nothing is that easy.   When it comes to a Gastroparesis Diet, you are probably going to find yourself doing a lot of trial-and-error.  You may resort to baby food, rice, crackers, nutrition shakes, etc.   As I have noted previously, when it comes to symptoms, you can have 100 different sufferers who all have their own unique symptoms.   Same goes with a diet - you put 100 sufferers into a room and ask them what foods work best for them, and you will end up with 100 different menus.     The worst part of the trial-and-error is that when you get to a food your body cannot tolerate, you are going to feel the after effects.     On top of that, you may find foods that you can tolerate one day, but then cannot tolerate the next.   Colleen has run into all of this; there have been times when she can eat a little bit of cereal and feel pretty good.   A few days later, eating that same cereal may not feel so good.  

Interestingly, last week I was talking about Chinese food - Colleen and I used to get it very often when we were dating, and even after we moved in together.   In the past few years, with Colleen's illness, it left our radar completely.  Last week, however, Colleen asked if we could get it again.  The interesting thing about Chinese food is that their diet dishes actually are right in line with a Gastroparesis type of diet.  Steamed chicken with vegetables has protein (chicken), carbs (rice), and nutrients (vegetables) that are sometimes lacking within somebody who has Gastroparesis.  The best part is that she has been able to tolerate it better than some of the other food she eats.   

Again, it is all about experimentation - some of the experimentation will not have good results, but you are never going to know what you can tolerate unless you try.    I would personally start small - if you want to try some cereal, eat a small amount.  Try to lessen the impact as much as possible initially.  If you find yourself able to tolerate a certain food, perhaps then you can try to increase the portion to a reasonable enough size (reasonable within the context of Gastroparesis, of course)

The loved one's role here is much smaller; you can't tell a Gastroparesis sufferer what they can and cannot tolerate, nor should you attempt to force them to try stuff they just don't want to try.  The condition is scary - if they think a food is going to cause a massive flareup, they should avoid it.   Don't try to convince them otherwise.

Gastroparesis: A Myriad of Symptoms.....

If you took a poll of 100 people who have Gastroparesis and asked them what their symptoms are, I would guarantee you that no one symptom would appear on the list 100 times.   It isn't quite to the level of a fingerprint - where everyone has a unique identifier - but it is close.   Perhaps as close to a fingerprint as any disease you can think of.

Colleen's symptoms include stuff that is common in Gastroparesis, and some stuff that isn't as common or talked about.

"Splashing" in stomach - This is Colleen's most prevalent symptom.   It is pretty much there 24/7, though she can on occasion get a break from it.   It is her most obvious symptom that shows something is very wrong inside of her digestive system.   You may have heard of succussion splash.    In Colleen's case, it is succussion splash times 50.   There have been times I am in a different room and can hear her stomach splashing.    Typically speaking, succussion splash isn't usually that obvious.   When her specialist asked her a month ago "What can I help you with today?", Colleen demonstrated the splash.    I believe there was a point to the doctor's question and the tests he ordered right after the demonstration.

Dry Heaving -  This hits Colleen hard from time to time.   She will get so sick in her stomach, that her only relief is through a dry heave.    Not that the relief is permanent, of course.   If only a dry heave was the only thing she needed to do to get healthy....

Sharp Pain -  This isn't constant (thankfully) but is one of her scariest symptoms.   It is the one symptom that, when it rears its ugly head, can really drive home how sick she is.    When you see a loved one doubled over in severe stomach pain, your sense of panic can jump into high gear.    There have been a few times when there was at least a thought of an ER visit.     Thankfully, it doesn't happen very often.....she has enough to deal with.

Nausea - Talk to some people with Gastroparesis, and they will tell you that their #1 symptom is terrible nausea that rarely goes away.    One minor saving grace for Colleen is that this isn't the case for her, but when it hits, just like the sharp pain above, it can be quite scary because it leads to the dry heaving above.    On one of our trips to Philadelphia, she had nausea/dry heaving the entire trip while having a tube in her body.   In all of her horrible days since getting this disease, that day ranks in her top 5 worst.

Tiredness/Lack of Energy -  This is more of a byproduct of everything than an actual symptom.   As I have stated many times, it is a domino effect - you don't eat enough calories, which means your body isn't getting the energy it needs, which leads to extreme tiredness and lack of energy because your body is low on fuel.   And, if you are very sick, it is hard to refuel your tank because you can't really eat or drink.     It is an endless loop that is almost impossible to break out of.

A few common symptoms that Colleen doesn't experience quite as much, if at all:

Early fullness -   Ask someone with Gastroparesis about their eating habits, and some will tell you that even when they are hungry, it only takes a few bites of food before they feel fullness.   This makes sense - if your body cannot digest food quickly, it is going to feel full quicker.   For some reason, this doesn't quite happen to that extreme for Colleen - on those days/moments where she feels hungry, she can typically eat an entire...albeit small...meal without getting that quick feeling of fullness.    The biggest issue is finding those moments when she actually feels hungry enough to eat something.

Bloating - You can find pictures online of the bloat some people experience with this condition.  Women who aren't pregnant can sometimes look as if they are.    Colleen has never had to deal with the bloat, and for that I am thankful because doctors who don't understand the condition are likely to not believe you have Gastroparesis if you are actually showing signs of severe weight gain.   So, yes - not only does the person have to deal with the embarrassing feeling of bloating, they also have to deal with skeptical doctors on top of that.

Does this all add up to Gastroparesis?   Well, bottom line is that if you go through a valid gastric emptying study and it shows delayed emptying, you have Gastropareisis.  It really is that cut and dry.   However, that doesn't mean that there isn't something else going on in addition to the Gastroparesis.  If you feel that Gastroparesis is not your only problem, ask (or demand) that your doctor/specialist dig further.   Good specialists don't even need to be asked - Colleen's specialist ordered these tests just based on not knowing exactly what was wrong with Colleen.   I am no medical expert - but I have always felt that yes, Colleen has Gastroparesis (we will know for sure when the results of her 6 hour test are known) but that she has more than that going on.   What that is, I can't even begin to speculate about.   I can't even venture a guess.   Some of her symptoms, in my mind, just seem to go beyond Gastroparesis.    We will find out those answers in a few weeks.   For now, we just wait and hope that something can be done to relieve at least some of her symptoms...if not all of her symptoms.    This condition has no mercy on those who suffer from it - that has to change at some point.

Live Blogging From Philly: Capsule Endoscopy

7:42AM:   We have arrived!   Very long day ahead.   Made decent time getting here, though nothing is worse than getting behind a construction truck on a one lane road.    I slammed Colleen's hand in the glove compartment, but thankfully there is no injury to report.    There are 4 traffic circles on the way here (it is a NJ thing) and it surprises me that I have mastered them.

7:55AM:   Eerily quiet here today.   We are the only ones sitting in the waiting room.

8:10AM:  Typical.  We get here on time (actually early), but Colleen still hasn't gone back to get the test started.   The waiting game sucks, especially for her.

8:15AM:   Finally, she is going back to get the procedure started!   Suddenly a big rush of people in the waiting room.  Same nurse she had for all of her previous tests, which is a good thing.  I think she helps put Colleen at ease.

8:20AM:  As Colleen knows, I love WaWa (east coast thing!).  Today, it took the woman behind the counter 15 minutes to make my vanilla latte.  I am not much of a coffee drinker, but for early days like this, I have no choice.    Yes, this is a random post without any connection to today's proceedings.

8:45AM:   Colleen has swallowed the pill and is now walking around with her recording device.   The reason for this test is to look for inflammatory bowel diseases..the pill will go in places that are hard to see otherwise.    She can't eat or drink for a few hours.   No discomfort...much better than last week's tube.    

8:46AM:  I seriously don't need to hear your entire cell phone conversation.   Gosh, this woman is loud.     I do know she had a doughnut for breakfast, which is fascinating in some strange way.  She loves to curse as well.   This is quite amusing.

9:25AM:   Does anyone read the "no food or drink" sign that is plastered right at the front desk?   Seriously, this isn't a picnic area.   The smell of an egg sandwich fills the room.   

9:40AM:   This is going to be a boring day, overall.  Last week, the tube was awful for Colleen, but at least we had goals...every hour, she would go back for an image until we left.   Today, we just wait..and wait..and wait.   A different kind of torture.   Colleen definitely prefers this though.   The device she is wearing today is tight on her waist, but is otherwise painless.

2:00PM:   We went back to the car to rest then had a quick lunch in the cafeteria.  Temple WiFi doesn't reach out into their parking deck.   The horrors!    Colleen had a cup of frozen yogurt, which was quite nostalgic.   I told Colleen that I felt like a fish out of water with all of the doctors in the cafeteria and she pretty much said "Isn't that always the case?"   She has a point.

2:02PM:   A different cast of characters in the waiting room, obviously.   But the same woman we always see at the reception desk.   Does she ever leave?   Does she live here?  I must know.

2:15PM:   Less than 2 hours until we should be able to get out of here.   This day was dragging for a while, but we are hitting the homestretch.  

2:20PM:  The woman next to us is playing Candy Crush Saga as well!   Wonder what level she is on?

3:10PM:   Less than an hour to utopia!   People keep filtering in and out, but Colleen and I remain the constants.

3:52PM:   We opened the place up, and it seems we will be closing the place down.   8 minutes!  Colleen is doing fine (relatively speaking) overall.

6:38PM:  We are home!   Colleen drove the last several miles.       Number of times we heard certain songs on the radio (I counted):  Katy Perry (Roar):  52,103; Maroon 5 (Different songs):  51,955;  Mr. Seaver's Son:  11,932;  Alanis Morissette:  1.  And I only caught the tail end because Colleen insisted on listening to the 51,954th rotation of one of the said Maroon 5 songs.    The overall day was long, but painless.    Here's hoping that all of these tests over the last several weeks reveal something we can tackle head on.   We have a follow-up at Temple early in October.

The Capsule Endoscopy

Tomorrow, we embark on the final journey in the round of tests ordered for Colleen; at least we hope it is the final testing.  A Capsule Endoscopy, where Colleen will have to swallow a pill with a wireless camera embedded, is going to be performed.   Based on what we have read, the test itself is painless - the hardest part is the amount of time we'll need to be at the hospital.    They do not discharge the patient until after all of the photos are collected (Colleen will be walking around with a CD-like device attached to her - this device will be storing the pictures as the pill digests in Colleen's system).   Because of that, we will probably be at the hospital for a period of 8 hours or more, which means a drive home in rush hour traffic.   A bit of a bright side is that last week, we found a slightly different path to get home from the hospital that cut out some time.

As was the case last week, I will be attempting to do some live blogging.   It may not be quite as detailed, as the procedure is long, but basic:  Swallow a pill, let it take pictures, return the equipment, go home.

Regardless of the test and what it does, Colleen always gets nervous the days and hours leading up to it.  This is natural - as she doesn't know how she will feel, and riding in a car for 1.5 hours to get to the hospital can be tough if she is having an especially bad day.  This won't be nearly as bad as last week's tube procedure, but the anticipation is the worst part.    Hopefully, she can get good rest tonight leading into tomorrow.

After that, it is going to be a bit of a wait until we get all of the results - early October.    For Colleen, I know this all seems like an eternity - to me, however, time is just flying by.  It wasn't long ago I was thinking that these tests are a  long time away - now, they are almost over.

Gastroparesis: Be Aware of Your Surroundings

If you can put together a list of the worst emotions you can feel, anger would probably be quite high on that list.  There really isn't much of anything worse than having a feeling of extreme anger.  Being extremely upset and emotional can actually be a good thing - having built-up anger that is about to explode like a volcano?  That is not a good thing.  And it definitely is not a good thing for a Gastroparesis sufferer.

When you are a loved one of somebody who has this condition, you too may feel very angry from time to time.  As I have stated previously, this is natural - nobody is going to walk around the household whistling all day long.     Being aware of your surroundings and how your loved one is feeling is one of the most important things you can do as a loved one.  You need to be able to adjust yourself - feel the temperature of the room - and act accordingly.

Is this always easy?  Of course not.   Anyone who paints a perfect picture of life with a sick wife/husband/child/etc. is probably painting the wrong picture; or is at least in fantasy land.   All you need to do is think about it; the mere fact that somebody in your house is very sick makes the picture far from perfect.    I feel as if I am someone very experienced in dealing with a sick spouse - Colleen has been sick for nearly three years now.  And if you have read my posts before, you also know another fact:  Colleen had to deal with having a sick spouse (me) for nearly 3 years.    In many ways, that probably gave us both a deeper understanding of the whole thing; she knows how it feels to be the "healthy one"; I know how it feels to be the "sick one".   (Please note that in no way am I comparing our situations; our illnesses were different, and of course, mine has been treated whereas hers hasn't been) 

If you come to the realization that sometimes a fight might break out (it is a marriage after all - disagreements will happen regardless if you are both healthy, both sick, or both living on Mars.  It is unavoidable), it will help you get through those situations in much calmer, more understanding way.  If you come out of a disagreement with a deeper understanding of where each other is coming from, consider it a victory - that is the goal after all, right?  The last thing you want, or need, is lingering resentment.  The person who is sick doesn't need resentment added on top of everything else; as a loved one, you definitely don't want that feeling either - hard to really concentrate on helping the patient if you have lingering resentment or anger.

I know I say this often in many different ways, but I do think it is true:  It is up to you, the loved one, to keep it all together, and not explode.   It is up to you to maintain the calm.  It is up to you to gauge that temperature and be aware of the surroundings.   You cannot, and should not, just let things linger and boil up.  If you feel the patient is uncomfortable in any way, make them comfortable.   

I am not saying it is a one way street - because, as I have said before, nothing about this can be a one-way street.  It isn't healthy.  What I am saying is that you must remember that you are the healthy one - the one more able, the one more in control of what you can do.  Your loved one is going to get emotional - and will likely get emotional often (especially on the really bad days).   You have to be there with them - and on the days where they feel "better", celebrate whatever you can about those days.   Be aware of your surroundings.  

Live Blogging From Philly, Day 2

4:00AM:   Colleen woke up with severe nausea and dry heaving.    I know she is having a miserable time when she has to wake me up.

7:45AM:   We have arrived for Colleen's 8AM appointment to get her tube out and get the final pictures taken.    Should be a quicker day.   Colleen is still very sick and nauseous, but it seems to have settled down after her last heaving episode in the car.

8:15AM:  One of the nurses who is calling back patients is chewing gum as she shouts out the names.    I hate that.

8:25AM:    A lot of people here today. Colleen has yet to go back for the procedure.

8:27AM:   Colleen is finally going back for the removal.

8:40AM:  The nurse just came up to me and asked where Colleen is.   That's always encouraging.  (her nurse is awesome, by the way.  Obviously, someone didn't tell her that Colleen was ready for her).

8:50AM:  Tube is out!   Procedure took 15 seconds.   Discomfort in throat for Colleen but otherwise, feeling pretty good.   Going for her last picture now.

9:00AM:   Last picture being taken!   We should be out of here within 15 minutes.  Thank goodness.

11:02AM:    The patient is home!   No more appointments until......next Tuesday.  The technician told Colleen that her small bowel motility test (the one that required the tube) is not a common procedure. Not that anyone should use my blog as medical advice, but just be aware that this test is not typically ordered for a Gastroparesis patient.  It is used to dig deeper to see if there is more going on.

Live Blogging From Philly: Small Bowel Motility & 6 Hour Gastric Emptying

8:56AM ET:    So, we have arrived in Philadelphia.    Arrived 20 minutes late, but they took Colleen back relatively quickly.     Her testing is about to begin.   It is going to be a long day & night, but here is hoping we get some more answers.   She is having a more detailed gastric emptying study (6 hr) plus a small bowel motility study.      The test will require Colleen to have a tube inserted that will not be taken out until tomorrow morning.

9:26AM ET:    Tip:   When you have a long day ahead of sitting in a waiting room, ration your Candy Crush Saga lives.

9:28AM ET:   Doctor's offices are so "funny".   One of the doctors requested a patient come back in 4 weeks.    The girl at the front desk told the patient that the next available is in mid-December.  

10:27AM ET:   Colleen now has the tube inserted.    It is going to monitor her small intestine for about 24 hours.    She is experiencing a very uncomfortable/sore throat.   It is going to be a long night for her.  

10:28AM ET:   Colleen just went back to eat her radioactive egg sandwich in preparation for her gastric emptying study.   Another woman having the same study came out complaining about the sandwich while Colleen was sitting here.  Thanks for that.

10:34AM ET:  The husband of the woman who complained about the sandwich is now scolding her for not finishing the sandwich.     I am far from perfect, but I at least know how insensitive it would be to yell at someone dealing with a stomach condition for not finishing the meal given to them.

10:48AM ET:   Colleen ate the sandwich.  They will be taking X-Rays at intervals all day, and she will need to fill out a questionnaire after each interval about how she is feeling, etc.

11:53AM ET:   The half-hour intervals are now over.   Now, she goes back for X-rays every hour for the next several hours.    What they are measuring is how quickly the egg sandwich she ate earlier is digesting.

12:16PM ET:   The couple mentioned above is still complaining about the egg sandwich.   Perhaps next time they will offer you a menu of many different radioactive food options?    I sense a billion dollar idea.

12:47PM ET:   Interesting fact:   The technician told Colleen that only Temple and Mayo Clinic do a 6 hour gastric emptying study.   The accepted standard is 4 hours, and the 90 minute test (Colleen's original test) is not really considered useful anymore.  The 6 hour test should show them exactly where her digestive issues are originating from.

12:50PM ET:    Colleen was also asked to drink water in addition to eating the sandwich.   They are also monitoring how liquids flow through her body.

1:47PM ET:   Tiredness is starting to set in.    Waiting an hour between intervals is torture for Colleen.    The discomfort of the tube isn't helping matters.   "Only" 3 more intervals to go.

2:37PM ET:   A woman and her son are also here.   He has been dealing with Gastroparesis since he was 3 years old.   She described Dr Fisher as her last resort.  It took them a year to get in to see him.   Completely heartbreaking.     They are going to undergo the same test Colleen is having now on Friday.

3:35PM ET:   Everything is dying down here. Only Colleen and one other patient remains.    Only one hour to go until we can finally get out of here.....

4:06PM ET:    We are probably going to hit rush time traffic.   Anyone who knows me would tell you I am not fond of city driving.   City driving plus rush hour?   Yikes.    Colleen has been a trooper today.   It has been a grind.

4:09PM ET:   We have to come back tomorrow to get the tube out.    Also, she will need one more image taken after the tube comes out.  Should be a much shorter day, thankfully.

7:21PM ET:   The patient is finally home.   The tube is really bothering her....feels like there is something stuck in her throat, which technically is true.   She is now resting after a very long day.

That I Would Be Good.....

Anyone who knows me extremely well would tell you that I am a huge (understatement) fan of Alanis Morissette.    Every lyric she writes and sings has a message and meaning behind it, and typically speaking, it is easy to find a situation in your own life which refers to what she is singing about.  (Never mind the fact that she sounds just as good - if not better - live than she does recorded)

One of her most emotional songs, That I Would Be Good, can relate easily to people with Gastroparesis.  In that song, Alanis refers to being good "if I got and stayed sick", which is a lyric that would most with this condition can definitely relate to.

A good person shouldn't be defined by their illness, or their circumstances, or their height, weight, skin color, sexual orientation, etc.   Being a good person has nothing to do with any of those things; being a good person is defined by your own actions, by how you treat others, and how you live your everyday life in general.

At times, a sufferer of Gastroparesis can struggle with this very notion.  If they are bedridden for an extended period of time, a sense of hopelessness, despair, and depression can set in.   Those emotions can often cause their minds to start thinking differently; that perhaps they aren't good enough, or that they aren't useful.   It is a dangerous slippery slope, but it can be a hard one to avoid.  It is like being an injured athlete having to sit on the sidelines when their team needs them the most.   As a Yankees fan, the first name that comes to mind is Derek Jeter - not that I think Derek Jeter's mind goes in the same places as those dealing with a severe illness, but the consequence can be the same - "I am not doing anything to help the team win" is right along the same lines as "I am not doing anything to help out this household" or your family, or whatever your circumstance may be.

My advice to those who have Gastroparesis is to try to avoid this path; if you have a loved one who truly does care, I can speak from personal experience:  We do not think these things of you.   We want you to get back up on your feet and be healthy and productive.  We understand that the thing that is causing that not to happen is a disease that has attacked you.      The last thing you need to worry about is the loved one closest to you feeling negatively towards you (if that does happen, deal with it pronto).

For those who are loved ones, you always have to remember that the person you married/gave birth to/etc. is still the same good person they always have been.   The challenges they face are much different, and in turn, your life is most certainly different.  There is no denying that fact - if you are the primary "caretaker" of someone with a severe illness, your life will change.      The lyrics from the song referenced above are powerful; as many people with this condition can scream them at the top of their lungs, hoping they can be heard.   You are the one who has to make sure you hear them.

Colleen has several tests upcoming as we continue in our quest to see if there is more going on than Gastroparesis.   I will update the blog as those tests are done; the first one is coming up in a few days.

Gastroparesis: Blame the Disease, not the Victim

Today was not a good day for Colleen. The combination of having a bad stomach day plus the anticipation/dread of her next set of tests left her a bit emotional.  Having emotional outbursts when having a dreaded disease like this is not uncommon, and is actually something that I would encourage.   You shouldn't feel the need to hold in your emotions on top of everything else you deal with every day.

As a loved one, if you sometimes feel frustrated or overwhelmed, do not kick yourself over it.  That is normal behavior.  You should be frustrated.  You should feel some anger.  You should feel a bit overwhelmed.       But remember that you should channel all of this anger towards the disease, and not the patient.  It isn't your loved one that is causing you to feel all of these emotions; it is the dreaded illness that is burning inside of them that is causing you to feel these emotions.   In just about every other way, the person who is sick has not changed.    They didn't cause the illness to attack them, and they sure as heck don't want the illness to continue to eat at them.    Just from talking to my wife, I know how bad she feels about the illness and how it impacts me, her mother, and anybody else that is close to her.   

I like to drive home this point in many of my blog posts:  Think about your everyday activities.  Think about how you might like to play sports, or walk the dogs, or drive to see a friend.  Or, to really drive the point home when it comes to this particular illness, how you like to go to a restaurant to eat your favorite meal.   Would you ever, in a million years, want to give up these activities?  When you see a person in a wheelchair, you feel instant empathy for that person, and rightfully so.  It is highly likely that the person in that wheelchair is unable to walk around very much on their own, if they can walk at all.    It is a very visual thing - you see the person in the wheelchair, and you instantly know they have trouble walking.   When it comes to someone with Gastroparesis, not much is visible.   Many people with the disease look healthy - some of them may even appear HEALTHIER than you previously thought they were.  OUTWARD appearance has nothing to do with INWARD torture when it comes to this condition.    People with Gastroparesis don't wake up one day and decide they no longer enjoy the things they loved the day before they came down with this disease.  Most of them would give up just about anything just to enjoy the life they once lived.

This is not to say that, as a loved one, you need to continuously walk on eggshells.  That isn't healthy for you, isn't healthy for the sufferer, and simply does not work in the long run.    But you do have to read the mood as well.  You need to figure out when to be the cheerleader, and when to be the amateur psychologist.  Often, you have to try to be both.

There are "good" days and bad days with this condition - and that can vary based on the person and how severe their condition is.   I always try to tell people that reading everything on the Internet can give you a good picture of the disease, but you can't cherry pick what fits your own personal opinion.  For example, if someone in a blog message says "I can do anything with Gastroparesis!", that doesn't validate your belief that your loved one can do anything.   Just like if someone says "I don't know how I can live another day with this", it doesn't necessarily mean that your loved one will feel the same way.    The disease manifests in many different ways and attacks people differently.     My wife had a (relatively) good day last Saturday.  Now, here we are 6 days later, and she is very ill again.  How does that happen?  We don't know.  Nobody really knows.  But it just drives home the point that this disease knows no boundaries.

As a loved one, just try to have some patience - and always believe that some day, your loved one will be cured or the disease will just go away (it does happen).  Until that day comes, continue to support your loved one. It can be a long journey - it can be a short one - but it is one you have to take together.  Nothing will work otherwise.

Celebrating Those Special Days with Gastroparesis

I have outlined in a previous post about how sometimes it can be hard for a sufferer of Gastroparesis to attend family gatherings because of the abundance of food (never mind the feeling of being sick in the first place - that is actually the most important thing.  It is one thing to not be able to eat - it is another to feel so sick that you can barely function at all)

Recently, Colleen and I celebrated our 5th wedding anniversary.  While many people would probably celebrate this day by doing out to dinner, or going to their favorite recreation place, we couldn't really do that because of Colleen's illness.   This doesn't mean the day is any less special - it is just altered.   You have to make the day special while making sure your loved one is comfortable - whatever that comfort may be.

In our case, it was a simple enough day - recently, a new bakery moved into our area that is a bit different than your traditional bakery; sure, they make the typical cakes, cookies, and brownies.  But they also make many of these desserts gluten free, which is a bit less common in the marketplace.   For some people with Gastroparesis, cutting back on gluten (or eliminating it altogether) can sometimes ease up the symptoms.   I think it is safe to say that this is especially true of those with Gastroparesis and a gluten sensitivity.

Don't get me wrong here - a gluten free chocolate chip cookie is still a ... chocolate chip cookie.    Sugar is gluten free, so it isn't entirely hard for a company to exploit a gluten free movement by just pouring a bunch of sugar into a bag of rice flour and saying the product is healthy.   Please note that this statement is not about the bakery mentioned above.  To be exact, the overall vibe of this place leads one to be confident that they are making their desserts in the healthiest way possible.   If you are a Gastroparesis sufferer with a sugar craving, getting a dessert that is even a bit "healthier" than a traditional dessert is beneficial.

Colleen was able to celebrate our day with a slice of pizza (not gluten free, of course) and a few macaroons.  Perhaps it wasn't dinner from a 5-star restaurant, but it doesn't have to be.  You can celebrate special days with someone who is ill just as easily as you can with somebody who is healthy.  It may not be traditional - it may not be what you always dreamed about.  But, in the end, the most important thing is being with the person you love to celebrate that day.