Do I need a new GI dr?
January 7, 2017 9:25 AM   Subscribe

I have IBS-D, and I'm having some doubts about the quality of care I've been getting. YANMD but you can tell me if you think mine is doing a good job.

I''m 34 and have IBS-D. My first episode was when I was around 19, and then it was mostly quiet again until a year and a half or so ago. It has been about a year since I first saw my current GI (a PA at the GI clinic, if that makes a difference), though I've actually only seen her twice.

When I started treatment with her, she began with bloodwork, a stool test, a colonoscopy, and an upper GI endoscopy. The colonoscopy revealed a polyp. Nothing else was found in any of these tests. She prescribed dicyclomine for abdominal pain and colestipol for diarrhea.

This combination wasn't super effective (the colestipol helps some, I guess) so I asked if there was a med, maybe a prescription made for IBS-D, that I could try. She called in one that wasn't covered by insurance (don't know name but was really expensive. I called her back to ask for something I could afford. She called in something else that wasn't covered by insurance (ditto). Her nurse told me to research medicines and call my insurance company to see if what I waned was covered. That sounded really odd to me, like was I supposed to pick out my own med?Eventually, she suggested taking Align probiotics.

I've been taking the Align and that helps a lot. However, for at least a few weeks I've been having various GI symptoms again (not just diarrhea but also pain, gas, constipation). I've been supplementing with Heather's Tummy Fiber (acacia fiber for folks with IBS), peppermint tea, yoga, but I don't feel like I have a great care team working with me. I called the GI clinic back to say I was having a flare up and was told the first step was a stool test. I'm nervous that we're just going to loop through the same diagnostic tests that show nothing again and again, and I won't actually ever feel better because of anything medical thats been done.

How does my current medical care sound to you? As you can tell, I'm frustrated and feel it's inadequate, but I have no idea how far this is from normal treatment in any aspect. I am willing to try to make an appointment to see my PA and voice these concerns to her, or I could try to get in with someone else at the clinic, or go to a new clinic. Finally, I could use some help with a script to use with my PA or my next physician about my frustrations surrounding my care.
posted by mermaidcafe to Health & Fitness (6 answers total)
I have had the same issue with GI meds (for constipation, not IBS-D) not being covered by insurance. In my case, my doctor is young and I think she doesn't know how to play the insurance game. Doctors also aren't paid for the time they waste writing appeal letters and such, so they're less likely to do it unless you stay on top of them.

We eventually got it covered after two denials. I was pretty forceful and kept calling the doctor and pushing her to write appeals. Your doc basically has to tell the insurance company what they want to hear. If they say you need to have tried x medication and had symptoms for y months, your doctor needs to write that on the appeal.
posted by radioamy at 9:43 AM on January 7, 2017 [2 favorites]

Also, I don't really know the difference in qualifications/care for a PA vs a Gastroenterologist, but it might make sense just overall to see a Gastro.
posted by radioamy at 9:44 AM on January 7, 2017

Yeah I had a different specialist do prior auths for unrelated meds, and now I'm wondering why they didn't do that. The PA is young and, like you said, may not have a ton of experience navigating insurance.
posted by mermaidcafe at 9:58 AM on January 7, 2017

I recently left practicing medicine for a job in academia. One of the main reasons I was ready to go was because I was done, done, done with dealing with my patients' insurance issues. During lunch, or after work, or before my patients were scheduled I was on the phone with prior authorizations, writing letters of appeals, trying to find the cheapest covered comparable medications for patients. I once spent a total of five hours over the span of a week trying to get the cheapest alternative for a medication for a patient (that was just one that week amongst dozens of other things I was doing for patients outside our visit). I never got paid for this time as we only get paid for patient visits. I also never got a thank you.

Some times I would ask patients to call their insurance to find out what medications are covered (first tiered, second tiered, blah blah) for "x" diagnosis. There were times when my patients would give me a hard time, like, why wasn't I on the phone with their insurance for them? Because I don't have time and I don't get paid for it! It's cool if I need to do it for my 85 year old patient who isn't savvy enough to navigate the whole system. I'll happily do it when people aren't capable of doing it themselves but for the rest of the able-minded I, rightfully, expect some ownership of their medical care.

If I sound passionate about this it's because issues like this led to me leave practice. It's this burden on providers and the fact that it has been placed upon us by our shitty healthcare system that burns us out, makes us quit, and contributes to depression. I felt under appreciated and my time taken advantage of in my practice even though I had a fair amount of patients whom I loved dearly. Our system sets medical providers up for failure and because patients aren't typically educated about that system we are set up to be another bad guy/incompetent or lazy provider. Just because your doctor's office isn't doing the leg work to find a medication your insurance (one of at least a hundred of different flavor of insurances plans we deal with) covers doesn't mean you're getting bad care. It means medical professionals are overworked and insurances are killing us. This isn't the patients' fault but I don't think it's fair to place the burden of dealing with these issues solely on the shoulders of the medical providers. Blame our medical system but don't blame the people who are forced to work within that stupid, screwed up system.

I can tell from your post you are mostly trying to give your provider the benefit of the doubt here and aren't totally sure of whether or not your expectations are correct. Not everyone has your same insight. But I don't think you can tell if you're getting bad care at this point. Maybe you are but what you are describing are systemic problems not necessarily provider problems.

My advice to you is to work with your provider. Call your insurance and speak to someone who can help you with medication questions- typically it's a pharmacist who they funnel you to. Say, I have IBD-D and my PA has prescribed X and Y but they aren't covered. What is? Or, go online to your insurance's patient portal and look up covered medications for IBD and give them to your PAs office so he/she can look at that list (without spending time he/she doesn't have looking it up themselves) in order to come up with an alternative. Talk to him/her about your concerns about the stool sample and going in circles. Let this person explain their medical reasoning to you. If they won't or can't then that is reflective of a problem with them.

If there is no alternative to these medications but you need them then it is on your PA/MD/NP to write that appeal letter. I hated writing those too but I never felt upset toward my patients for having to write them just at the shitty system that required me to do so. If he/she refuses to do that then I would question the level of care they are providing because to me that's demonstrating a lack of integrity and patient advocacy.
posted by teamnap at 12:25 PM on January 7, 2017 [11 favorites]

I've had IBS-D for 20+ years now. Science seems to be getting closer, in some cases, to figuring out potential causes, and in others, not so much.

Let's say, even based on teamnap's observations, that you had the most amazing insurance ever devised by man, boom - but we still had the same knowledge of causes and treatments of IBS that we have *right now*. So you'd have every tool and med at your disposal with no charge. That would still not necessarily mean

a) that they know how to go about treating your particular case correctly, because IBS
b) that your doctor is the greatest.

So, yeah. There's a bunch of constantly changing info about IBS out there. A lot of docs are not up on it, whether it is their fault or not, insurance or not. People constantly claim or bs all kinds of anecdata on the internet. And then there's your particular case.

You've definitely tried some stuff per your doc, that makes sense. There is other stuff you could try, and perhaps if this is all your doctor is offering, you might want to find another. I'm not going to tell you there's necessarily a magic bullet that your doc is missing, just that there may be more options. (I listed a few below).

In defense of your/docs: often, with IBS, after a couple of years, it's not weird for them to want to re/do more tests, to make sure your condition hasn't migrated into something worse, or to make sure you do not have new or worsening symptoms.

IANY or anyone's doctor, but, other things that have worked for me:
- alternate bile-acid sequestrant (i.e., one that is not Colestipol instead)
- dietary mods (you can cut out one or more things at a time, but it's easier to start with one. If you do it, do it for at least 6 weeks. suggestions - low-FODMAP, gluten-free, dairy free, yeast free, sugar free, fruit-free).
- l-glutamine powder, about 10-40 grams a day, depending on how you do with it, spread throughout day separate from meals. Mix with water, it's fairly tasteless. Hard to od on the stuff. You'll know it's working because your stool will slow down. I don't know if you'd want to do this AND the bile-acid sequestrant together if constipation starts to become an issue.
- rifaximin (this is an antibiotic that tends to help IBS-D people who are SIBO positive), but depending on insurance, can be very expensive

good luck to you, fellow digestively challenged one. : )
posted by bitterkitten at 3:34 PM on January 7, 2017 [2 favorites]

This is pretty much what team nap said, but to put it plainly - your provider is asking that instead of them trying to guess what might be covered by your insurance for this diagnosis, you call your insurance and find out what they're willing to cover for this diagnosis. If you come back to them with a list of what the covered medications are, they can help to choose the best bet for you. If there are no covered medications aside from what you've tried already that hasn't worked, then they help you write an appeal letter so you can get the expensive stuff covered. Teamwork.

If it's a new expensive med, there are often either free samples available (and if the samples work for you that strengthens the argument your provider can make to get the med covered in an appeal letter) or there may often be patient programs run by the pharmaceutical companies that patients can apply to in order to get the meds for cheap if they prove their need. I too hate that our system works this way. I have heard good things in the past about this site NeedyMeds which might be something to look into (I don't have personal experience with the site, just through the grapevine).

If you feel like the PA isn't interested in your case, you can definitely ask to be scheduled with the gastroenterologist for your next appointment and see if you like their approach better. I don't mean to make this sound derisive in any way, but I think a lot of times in specialty clinics like GI, they shunt patients with vague, notoriously hard to treat but not life threatening problems like IBS-D to the midlevel providers. I understand why they do that and I think it probably works out fine in most cases, but if your case is stumping the PA, you're fully within your rights to bump things up to the doctor.
posted by treehorn+bunny at 1:08 AM on January 8, 2017

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