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.
Wednesday, October 23, 2013
Saturday, October 19, 2013
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.
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.
Tuesday, October 15, 2013
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.
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.
Thursday, October 10, 2013
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.
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.
Tuesday, October 8, 2013
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....
Thursday, October 3, 2013
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.
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