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Establishing a Team of Doctors

One of the more important subjects for those with IBD or any sort of autoimmune disease is establishing the right team of doctors. Finding good ones, keeping them, and developing a relationship that allows for a sense of trust, which I feel is hard to come by these days.  Let’s face it, if you’re reading this, it’s not likely that you are going to be the “once a year for my annual physical” type of a patient.  You’re much more likely to be the “I need your cell phone number, vacation schedule and access to your Outlook calendar” kind.  And it’s not just one doctor you’re looking for, but likely a combination of two or even four that must talk not only to you, but to each other, to make sure everyone, including the patient, is on the same page.  This is a tremendous feat and involves a pretty kick ass Primary Care Physician.  Make no mistake about it: you will need an excellent GI doc, possibly a skilled surgeon and maybe even a hematologist, but without the coordination of a great PCP, trying to get everyone to communicate with one another is like trying to organize a monkey shit fight at the zoo.

Many people take references from friends, family or coworkers when it comes to finding a PCP, and you may luck out and strike gold that way. I have found that it often leads to frustration, because what a healthy individual may consider to be a “great doctor” may only spend five minutes with you, jotting down highlights of your medical history, only to speak to you over the phone weeks later, demanding to know why you are asking for a refill of an antidiarrheal medication when your symptoms have persisted for well over the recommended length of time for use.  This actually happened.  And when I casually asked the doctor to review my chart and see if, you know, he happened to note somewhere that I NO LONGER HAD A FUCKING COLON, there was complete silence on the opposite end of the phone and then “Oh”.  So, let’s see what’s behind door number two, shall we?

While it takes a while longer, I have found that the following process has yielded much better results in the long run. I begin by searching for PCP’s in my general area that have a specialty in Internal Medicine using the search engine provided by my insurance carrier.  Generally speaking, these physicians have a background in dealing with patients having multi system disease processes, and will be a bit more well- versed in dealing with someone having complex care needs.  Depending on your geographic area, this may weed out quite a few potential PCP’s from your pile.  After I’ve written down their names, I do a search on each one to see where he or she went to school, how long they have been practicing, and if they have any specialties that they have additional training or interest in.  Anyone that lists a specialty with IBD (in my case, particularly Crohn’s) gets moved to the top of the list.  At that point, I like to take a look at where they went to medical school and, more importantly, where they did their residencies.  If I am not familiar with a school or hospital, I will look it up to see what areas of treatment it is most known for.  Anyone attending a school that specialized in IBD or autoimmune disorders gets moved up to the top as well.  Finally, after I have weeded the names down to two or three, I resort to looking for online reviews of each one from patients, to see what the overall consensus is; however, please keep in mind that reviews are very subjective and more often than not, unhappy patients tend to be more motivated to share their experiences than those who have been happy with their care.  As a fourteen year veteran of the hospitality industry myself, I want to stress that reviews are only a small piece of the puzzle, and should not be relied upon in and of themselves for an accurate picture of a physician’s work.  A perfect example is the wait time before being seen, something which, when longer than 15 minutes, tends to set many people off and gives them a negative view of the doctor for whom they are waiting.  Now, everyone’s opinions are different on this, but I’m going to give you my two cents for what it’s worth.  It is hard to find a great doctor that will spend the right amount of time with each patient based on their needs and the complexity of each individual case.  Yes, our time as patients is important, but I would much rather spend an hour (or even two, which I have done on occasion) waiting to see a doctor that gave me plenty of time to explain my concerns and ask questions than be seen on time by someone who gives me ten minutes into which I am supposed to cram thirteen years of medical history and current concerns.  This is your health, for god’s sake, not a damn table at Nobu.  Take a pill and wait to be seen, and only then form your opinion.  Trust me, this advice is coming from one of the most impatient people you will ever meet, so if I can deal, so can you.  Bring a book.  Do a crossword puzzle.  Chill the hell out.

So now you have your search narrowed down to one or two potential PCP’s. Make an appointment and give him or her a try.  Bring a list of your medical history and your current concerns (in a bit I will go into using phone apps to do this, which is tremendously helpful and a timesaver for both patient and physician) and see how the doctor responds.  Do you feel as if you have the doctor’s full attention?  How is the interaction between the two of you?  This is important, as it is helpful to be aware of your own needs as a patient.  Do you need someone who gives you the warm fuzzies, or someone that will give you the information straight, without beating around the bush? Bedside manner is an important thing, but not just on the side of the physician.  These people are highly trained in medicine, not necessarily hospitality, so it’s really just going to be a matter of each of your personalities and if they click.

So now you have the center of your medical team, the PCP, which is a great advantage in finding a Gastroenterologist, Hematologist and possibly others whom you may need to complete your care spectrum. Ask the PCP who he or she recommends for GI care, and then proceed as above with researching the specialists individually. Cleveland Clinic, Mayo Clinic, John’s Hopkins and Massachusetts General Hospital are highly revered for their IBD research, so anytime you find those listed under education and/or residencies, it’s a pretty safe bet that you’ll receive excellent care.  By no means are those the only names to look for, but if your case happens to be a fairly tricky or complex one, they are great places to start.  Keep in mind, as we reviewed above, that the more renowned hospitals and physicians will likely be in high demand, so be prepared for a long wait, both to secure an appointment and be called from the waiting room.  It is what it is.

If you do get to the point of needing a Colorectal Surgeon, ask your Gastroenterologist for a few names of people whom he or she would recommend, and be prepared to travel a bit to see them if necessary. While I don’t want to place more importance on one doc or the next, let’s be honest – this is someone who will potentially be cutting you open, so don’t half-ass this.  For more complex cases, you may live in an area that just isn’t known for its cutting edge surgical care (as I now do).  That doesn’t mean it doesn’t exist, but you will have to work a bit harder to find it.  When I relocated from the Northeast to the Southwest, I phoned Dr. S to ask him if he had any recommendations for me in my vicinity, as I was coming up empty with my online searches and referrals from my GI.  He named someone in Houston that he respected, so my husband and I took a three hour road trip (each way) for a consult.  Even with an appointment, we ended up waiting close to two hours in the waiting room (remember what I said about patience?), but the end result was worth it, as he was highly skilled, we had a good rapport, and the facilities were state of the art.

So there you have it. Hopefully, if you don’t already have an excellent team assembled for your care, this will help you create one that you are happy with.  Do your part to enhance communication between the team members, ensuring that each has the names and contact info of the others so that any labs, tests, medication changes or procedures are shared within the group, keeping everyone on the same page and you in good hands.

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I'm a 34 year old woman who was diagnosed with IBD at age 21 and have added nine surgery notches to my belt since then. It's easy for the disease to take away your humanity, your femininity, but I refuse to let that happen. I hope you'll relate to, laugh at and find some use in my experiences shared here.

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