Should I change doctors?
June 21, 2016 11:24 AM   Subscribe

I might not be thinking straight, based on a variety of factors, so I'm hoping the hive mind can help me sort through my snowflakes and decide whether to change gastroenterologists.

I was diagnosed with ulcerative colitis in 2009. I've been seeing the same gastroenterologist, Dr. S, since then.

A few years before that, I was having GI problems and my primary care physician referred me to Dr. V. Dr. V was on vacation at the time, and his practice group member Dr. S saw me instead, with my consent. (The point here is that my PCP did not specifically recommend Dr. S)

Later, when I started having UC symptoms, my PCP again recommended Dr. V, but because I had previously seen Dr. S, the practice group assigned me to Dr. S again as a matter of policy.

Generally, I don't have a problem with Dr. S. He is calm, timely, easy to make an appointment with, willing to confer on the telephone rather than insisting on a face to face appointment every time I have a question or update, and willing to prescribe medications for me that I request, such as corticosteroid enemas even when he thinks that enemas won't reach high enough to treat the whole inflammation, or VSL#3 even though that's had better results for Crohn's patients. I have occasionally thought that he and I have communication problems, and he also performs The Most Painful rectal exams I have ever experienced.

However, I also have a rectal surgeon who has treated me for topical issues over the course of years. The last two times I've seen him, he has asked when my last colonoscopy was and both times has said that it is past time for another. I saw him on Friday 6/17, and learned that I have an anal fissure. He asked some pointed questions and then told me that my current state of health should not be acceptable to me. He said that ulcerative colitis can be, and should be, better controlled and that it seems to him that stronger meds are called for and certainly I should have a colonoscopy to see what the state of the inflammation is. I adore this doctor. He is one of two doctors whose advice I will follow without question (the other is my PCP).

So I called my PCP for recommendations for gastroenterologists for a "second opinion." Through her assistant, she gave me two names. I have called one and left a message requesting an appointment, and giving a small amount of background. However, both of these doctors have a few really negative reviews on yelp, with believable details, having to do with not being able to contact the doctor when needed or not getting exam results back in any kind of timely manner or having to wait up to six months for an appointment. One of the doctors received two separate reviews that questioned her treatment plan, including a woman who was berated by the doctor for being a "drama queen" while she was having a mild heart attack at the outset of a GI procedure! According to the review, the medical boards found in her favor on this issue, so I'm inclined to believe it.

Contra, I know I could get an appointment with Dr. S within a week. He mentioned in passing about a month ago that we might need to go to stronger meds and maybe it's time for another colonoscopy, which jives with what my rectal surgeon said.

Contra, over the years, neither my PCP nor my rectal surgeon have come right out and said that they think there are better gastroenterologists than Dr. S, but Dr. S wasn't my PCP's original recommendation, and from time to time when I've made mildly disparaging remarks about Dr. S, my PCP has not disagreed (nor has she explicitly agreed, but she wouldn't). My rectal surgeon has also from time to time made very oblique hints that maybe I need to switch from Dr. S.

So here I am. Depressed (this is being treated with talk therapy and anti-depressants), in pain (from the fissure, the ulcerative colitis, AND unexplained back pain, AND tendinitis in my wrist, AND headaches from the topical ointment used for the fissure), and just not trusting my judgment right now.

Is it totally stupid to worry that Dr. S will be offended by my seeking a second opinion so that I might end up without a gastroenterologist at all?

In my shoes, would you risk a new doctor with bad reviews?
posted by janey47 to Health & Fitness (13 answers total) 1 user marked this as a favorite
You should certainly seek a second opinion if your UC is not well-managed. Could you ask the office to send you to Dr. V instead of Dr. S? Does your insurance require you to go through your PCP for a referral to a GI doc? In your shoes, I would research doctors that take your insurance, find one with excellent reviews, and ask your PCP to refer you to one of those (or just go to them directly if your insurance doesn't require a referral).

That said, if you want to be seen soon and get the colonoscopy scheduled, the fastest course of action seems to be Dr. S. That does not preclude you from researching doctors and seeking out a second or even third opinion concurrently.
posted by bedhead at 11:33 AM on June 21, 2016 [2 favorites]

is there any way to see Dr V the one you were originally referred to? I know it might be awkward due to Dr S in the same practice but that might be a good place to start. I'm not sure I'd be comfortable with the two recent referrals due to those bad reviews either.

What about putting a call out to your rectal surgeon for a suggestion? You should be getting better care imho. Sorry this is happening to you- navigating medical care can be maddening.
posted by RichardHenryYarbo at 11:36 AM on June 21, 2016 [1 favorite]

Your paragraph 4 lists some reasons I chose my doctor (mainly, ease of making appointments/convenience), and reading your question, they actually sound like indicators of a doctor not being that great. He'll do what you request, even if it's not supported by evidence? Why is his schedule so free (are they overbooking?)? The fact that his colleagues are subtly undermining him should say a lot... they don't tend to do that kind of thing lightly...

I'd go for a second opinion somewhere else. Maybe call your surgeon's office for a rec.
posted by cotton dress sock at 11:41 AM on June 21, 2016 [2 favorites]

For clarity, the practice group that Dr. S and Dr. V belong to has a strict policy of keeping patients with the same doctor that they saw originally or have been seeing.
posted by janey47 at 11:46 AM on June 21, 2016

Unfortunately it really is a BIG DEAL to change from one doctor to another within the same practice and many (perhaps most?) practices will not allow it. So cross off that course of action entirely and refocus on your real options.*

If Dr. S is worth keeping as a doctor, he will be professional about you getting a second opinion. If it were me, I would set an appointment with Dr. S to talk about more aggressive treatment options. Also set an appointment with a recommended second doctor to have the same conversation. Compare treatment plans and evaluate your personal experience and comfort level with each doctor. Go from there.

Patient reviews are often more insightful than doctor reviews - you will be experiencing the doctor as a patient, not as a colleague. Take a chance on a new person though - either one of the current recommendations or search for a totally new option via your insurance company.

You're actually at a perfect jumping off point for a second recommendation - before you embark on more aggressive treatment for any chronic concern. No awkwardness required - you're just taking charge of your own health.

*I'm not saying it never, ever happens. I'm saying it is a long shot and I wouldn't waste mental energy, and time in pain, on fighting that particular battle.
posted by cessair at 11:48 AM on June 21, 2016 [3 favorites]

After your update: I agree with cotton dress sock that it would be worth a call to your surgeon's office for a recommendation - he seems to feel strongly that your current treatment is not effective, and he may have some other GI docs he can recommend.

Patients get second opinions all the time. Go for it! You can see Dr. S. to pursue further treatment while you go out and get more opinions. You don't even have to tell Dr. S. unless and until you decide to switch doctors.
posted by bedhead at 11:52 AM on June 21, 2016 [4 favorites]

Crohn's here. Yes on a second opinion, no your doctor(s) have no place to be upset by you seeking one. If your doctor brings it up, feel free to bounce that question back--do you have an issue with your patients seeking second opinions? If so, that's a bit of a red flag and I would tell my doctor that it makes me uncomfortable.

I spent the better part of a decade doing whatever doctors told me about my Crohn's (I mean, I was a minor, so I still thought physicians were infallible). Then I became an adult, and got training in toxicology and epidemiology. That put some real tarnish on my ability to humor / interest in humoring physicians. No matter how much you like your doctor(s), they're not your family--remember that. They're a service provider, just like Comcast, only it's much easier to find an alternative to your current healthcare provider. This is a good thing.

Patient advocates will tell you to be a relentless self-advocate. It's on thing to listen to and respect physicians' opinions, but they aren't you and you can press back. I very specifically wanted to reduce my reliance on medications, since most meds in this arena aren't what I'd call without caution. I hope to never take prednisone again, and it was difficult to get my doctor at the time to take my urgency about this seriously. So I ditched him and found a gastro whose modus operandi was to focus on management and preventive measures a touch more than therapeutic measures. And it was a huge help. I went through some serious dietary changes--changes I've sustained for many years now--that helped me move away from needing medication very often.

So find you a recommendation for additional opinions, talk to doctors other than your own if you can. You may find someone whose approach puts you much more at ease, and you have nothing to lose (except a really painful exam).
posted by late afternoon dreaming hotel at 12:10 PM on June 21, 2016 [1 favorite]

I have Crohn's colitis* that is currently in remission because my gastroenterologist is focused and aggressive in treating it. I was diagnosed in 2003 and have been on the colonoscopy-a-year plan until this very year because he doesn't GUESS about what/where the inflammation is, he does the appropriate procedures and blood work so that he KNOWS. (My last colonoscopy a year ago showed, for the first time since my diagnosis, no inflammation anywhere--and he reduced one of the two oral medicines that I take based on those findings.)

Furthermore, he's the one who identifies possible medications and does a thorough job of helping me to understand the risks and benefits of each. He doesn't force me to take anything, but he does provide a lot of information and we decide together. There are a lot of treatment options out there, and frankly, your current GI sounds a bit lazy to me. This is not a treat-it-yourself condition.

I do take VSL#3 on my own, in addition to my two prescriptions, and I've found anecdotally that a vegetarian diet with lots of fiber from beans, leafy vegetables, and cruciferous vegetables seems to help, but that is not medical advice.

I'd ask your rectal surgeon for the name of a gastroenterologist that he recommends. I like his attitude, and yes, he is right that your UC should be better controlled. Inflammation in the colon is not just an irritating condition to be lived with--uncontrolled inflammation can lead to cancer. Which, btw, is another reason for the colonoscopy: to remove and biopsy polyps--some are unremarkable, but others are adenomatous, which have the potential to become cancerous. The current goal for treatment of UC/Crohn's is not "sorta" controlled, but truly controlled.

*My gastroenterologist have an ongoing friendly debate as to whether my DX should be Crohn's colitis or ulcerative colitis since the inflammation started from the bottom up, so to speak, but has been limited to the large intestine and nowhere else in the GI tract. My late mother was DX'd with UC and had to have an ileostomy at the age of 30.
posted by apartment dweller at 1:50 PM on June 21, 2016 [1 favorite]

The best advice in this forum is to be a relentless self-advocate. Some people worry that this might make you seem like a "difficult patient" but in my experience of taking care of patients in medical school over the past few years these are the patients who tend to get their problems addressed.

I think your best bet is getting a referral from your rectal surgeon. They're going to know who will be the best patient advocates, and who will be aggressive in treating IBD. If he thinks your UC is poorly controlled, he'll probably have an idea of who is doing a good job treating his other patients (more so than even your PCP).

Doctors are used to their patients leaving for other practices or switching doctors for a variety of reasons (insurance, moves, etc), and there will be no bad blood or second thoughts.

Also, if you're still having trouble finding someone you trust at a different practice, you can have your PCP reach out specifically to Dr. V and see if there would be a way for you transition care within their practice without having to specifically require you to do it yourself. Doctor-to-doctor communication is so so so so much easier than trying to navigate it as a patient, and it sounds like your PCP would be willing to go to bat for you, especially as it was their first choice to begin with.
posted by ghostpony at 4:32 PM on June 21, 2016 [3 favorites]

Contra, I know I could get an appointment with Dr. S within a week. He mentioned in passing about a month ago that we might need to go to stronger meds and maybe it's time for another colonoscopy, which jives with what my rectal surgeon said.

I'm confused as to why you think he's under-treating you when it seems he's open to changing your meds, and recommending the same colonoscopy your beloved surgeon suggested? Also, he seems to be communicating why he thinks your current regimen might be undertreating you (corticosteroid enemas even when he thinks that enemas won't reach high enough to treat the whole inflammation, or VSL#3 even though that's had better results for Crohn's patients).

YMMV, but as a physician I have zero ego tied up in a patient who desires a second opinion. It's often helpful for a patient to hear the same things from a different perspective, and if another doctor's personality or communication style fits your needs better then your original physician, then everyone should be happier.

Unless you live in a very small town with three physicians, we do not routinely stand around discussing whether so-and-so wanted another opinion. If you get a copy of your records from Dr. S and go anywhere but within his own practice, he will never even know you got a second opinion, much less care.
posted by eglenner at 2:15 AM on June 22, 2016 [1 favorite]

eglenner, that's kind of where my confusion comes in. I'm on the highest dose of Lialda, which is a fairly new version of a drug (mesalamine) commonly used to treat mild to moderate UC. When I've been actively seeking additional treatments, such as the steroid enemas or the VSL#3, he has been open to prescribing them, even as he explains to me why he didn't turn to them first.

On the other hand, there have been times when I thought we weren't communicating well at all. Over the years, I have been certain that he told me it was time for another colonoscopy on at least 2 occasions, and when I've tried to follow up, after some effort I've learned that he didn't think that at all, that in his view you can tell when there's inflammation and so there's no reason to look further. I've made an appointment to see him this week, face to face, so we can talk about whether he meant it this time or not. Another example is that he has asked me at least annually whether there's a history of IBD in my family. I just found out a month or so ago that there is, in a side of the family I have had almost no contact with throughout my life. I told him this and he seemed completely disinterested so I thought maybe it doesn't matter but then why did he keep asking?

I understand that reasonable minds can differ on the timing of colonoscopies, but I think I'm the only person I know who gets flares on a not infrequent basis but who hasn't had a colonoscopy in more than 7 years. Luckily for me, my rectal surgeons referrals are the same as my PCPs.
posted by janey47 at 10:39 AM on June 22, 2016

I'm not a gastroenterologist, but these are the American Gastroenterologic Association's clinical guidelines:

Managing colorectal cancer risk in IBD (i.e. should surveillance colonoscopy be done in IBD patients?)
Ulcerative colitis management

Keep in mind that these are condensed (so nuances are not explained) and aimed at trained specialists rather than the lay public, but I do think that if based on your review of the practice guidelines, your guy is not adhering to the guidelines, it's quite appropriate to ask why. He may have good reason, very few guidelines are absolute. I like the fact that he explains why he recommends certain treatment options but is flexible in considering your preference in situations where flexibility may be reasonable. His point about the rectal steroids seems very commonsense to me. If a colonoscopy is not absolutely necessary, it's an invasive procedure that does carry some risk, including flaring UC.

But then again I'm not in the room when you meet with him, and it sounds like you think he's a little checked out. It's always, always reasonable to get a second opinion in a non-emergent situation, especially in a subspecialty area. Any doctor who would toss you from their practice for seeking a second opinion would be exhibiting behavior standard deviations away from the mean.
posted by treehorn+bunny at 8:19 PM on June 22, 2016 [1 favorite]

I told him this and he seemed completely disinterested so I thought maybe it doesn't matter but then why did he keep asking?

re: this, just FYI doctors often needs to ask about things that don't make a clinical difference for charting and billing purposes (not sure if this is the case, it's just a guess). Reviewing family history is one of those necessary things to meet coding criteria for a chart.
posted by treehorn+bunny at 8:21 PM on June 22, 2016 [1 favorite]

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