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.