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 Remember, as I have typed many times, we based the diagnosis on a test that is no longer valid in the diagnosis of the condition.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.
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