On Monday, Colleen had her latest appointment in Baltimore. As I have said a few times, the drive to Baltimore from New Jersey really goes by fast - there is one section of road (Route 70) which Colleen knows I am not terribly fond of - but the rest of the trip is fast and straightforward, two things that I like. We hit a few traffic jams along the way, but we made it to the office only a few minutes after the scheduled appointment.
We saw Dr. O'Brien-Clarke rather quickly, as he didn't have his assistant by his side today. We figured either she only observes during initial consults or is perhaps a student who observes when she isn't in class. Once again, we left the office rather impressed. I am officially at the point where I would say if you live on the East Coast and can get to Baltimore, this is the guy I would see if you have a bad motility/gastrointestinal issue. No, he isn't a miracle worker who is going to fix you in five minutes - Colleen has seen him twice and isn't "fixed". He simply has the perfect combination of bedside manner and knowledge. Some doctors are nice, but don't really know what they are talking about. Some doctors have knowledge, but lack general people skills. That isn't the case with this particular doctor - he is both pleasant to speak with and knowledgeable. Colleen threw a bunch of questions his way today, and he was happy to see that she was researching her condition. He was also happy to answer every question she had, and was able to give insightful answers to everything she had to say.
As you all know, we have run the gauntlet here - does Colleen have Gastroparesis? Does she have something else? The most important question I have, however, is: Does it even matter? Gastroparesis is just a label that is placed on a disease that has a myriad of different symptoms for different people. Colleen may technically have it based on the fact that the definition is broad. You can probably have one of 100 different symptoms, one test that is slightly (or worse) off-center, and boom! You get the label.
Imagine this scenario:
Doctor: "Patient, you have cancer"
Patient: "Where? And how bad is it?"
Doctor: "I don't know - this one test we have shows you have cancer, so we will go with that"
The day has to come when we don't just say "You have Gastroparesis", but we are able to go further than that: "You have Gastroparesis - we know exactly where it is, what is causing it, and which treatment plan will work best for you". There is one form of Gastroparesis that has some of those answers: The diabetic variety. If you have diabetes and Gastroparesis, you likely have your cause, for what that is worth. But for other forms of the disease, there is nothing concrete on what the cause may be. In Colleen's case, it may have been a virus that hit her a few weeks before the condition started. But is there anyway to PROVE that? Not really.
Here are a few others things discussed today:
NIH Trials - Colleen qualifies for trials being done by the National Institutes of Health in the research of Gastroparesis. While these trials are not necessarily diagnostic in nature, the hope is that they can further understand the disease through some new tests and procedures. Colleen is interested in it, and will be receiving more information about it in the coming days. The tests are typically done over a two-day period with questionnaires that need to be filled out as she goes.
Bethanechol - This is a bit of an "old-school" type of treatment. Used mainly to treat issues with the bladder, it also has worked to varying degrees for some Gastroparesis patients. This is not a true "prokinetic" drug that increases stomach emptying, but stomach emptying is not the big symptom that Colleen experiences. Its main purpose is to increase muscle contractions in the stomach, which could have some benefits for Colleen. The worst part about this drug are the side effects (pain, for example) - the best part? It works quickly. Patients will know within a few weeks whether or not it is actually helping them. The fact that the time commitment is relatively short makes it something Colleen wants to try out.
Her next appointment isn't until April. In the meantime, she will try this new (which is actually quite old) treatment along with her Lyrica (which has done a great job managing her pain) to see if it makes any difference at all.
