What role should the patient's opinion play in treatment?

I guess it would depend on the flexibility of the doctor and her judgment of the patient’s suggestion. I don’t have a hard and fast answer except to believe that a patient has the right to refuse treatment.

In mental health, the patient’s views must be paramount. I decide what I will do about my recovery. No one else makes that decision for me. That is sacrosanct.

^ Does that opinion extend to physical health too?

Physical health would seem to be a different matter, but the same thought applies. I decide what treatment is best for me. I will consult with physicians, but I will make the best informed decision I can, and I demand my decision be respected.

@Hawaii_Jake Yes, but I think you can refuse treatments suggested but if a doctor doesn’t agree with your treatment plan, you probably have to go to one who does. In mental health, I think you could refuse meds but you couldn’t force a doc to prescribe ones counter to their convictions could you? I’m not saying whether this is right or wrong, just seems to me it is.

Here is a real world example that happened to me. My cholesterol is slightly elevated and the doc put me on niacin. A known/uncommon side effect/complication is blood sugar elevation. Next physical Doc says I’m pre-diabetic and to change diet. I ask if the niacin is causing this and the doc says “na” I do nothing but stop niacin. three months later for follow up blood sugar is 85 and a1c is perfect. Doc asks “dramatic improvement what exactly did you do?” I state nothing…accept stop niacin.
I tell my dad what happened, he stops niacin and his sugar goes back to normal. Some genetics likely playing out here and if I had just followed his instructions to the letter I’d probably be near diabetic.
A good doc listens to their patients and is willing to customize treatment based in what makes sense, not just what the assembly line states it should be.

I think it depends on the patient. Some are educated in A and P, so they have some idea of possible problems, and ways to treat them. Some are more in tune with their bodies.

I’ve been right instead of a doctor a couple times. But there’s a reason they’re doctors, so heeding their advice is recommended.

@ARE_you_kidding_me Did you consult with any doc before stopping the niacin? That part’s the rub; by not listening to patients, doctors are accidentally encouraging us to try things on our own without consulting them, or even to lie to them. I’m considering quitting a medication without telling my doctor right now too.

In general I follow the doctor’s advice; I have been seeing him for 8–9 years and he knows me,

However, he was off a couple weeks in the summer and I saw another person in the practice. Even though the records are all electronic (i.e. she could see my history with the regular guy) and we were in the safe office, she wouldn’t / didn’t listen to me, and wanted to recommend a $900 diagnostic test which I knew would come back negative. She said she wanted to “see for herself” even though my medical history was right in front of her.

Bottom line: I did not have the test, she was protecting her own ass (and not listening or serving the patient: me).

So I told her, no thanks, I’m not going to spend $900 for a diagnostic that I know the answer to already. She was not happy. But I knew I was right.

@Mariah I did not tell him but this was not exactly life saving medication. It was being used to lower a mild cholesterol elevation that did not justify the use of a statin. I did my homework, started checking my sugar with a known good meter and quickly concluded that it was the niacin. This was close to a decade ago and my sugar has stayed in the ideal range since. I suppose it greatly depends on what the medicine is and what it is for. If I had let that continue who knows how many drugs I would be taking now. Currently I take zero.

GQ. What I have learned is all too often patients know more about their own bodies than doctors. Regarding treatments it’s very tricky. Some illnesses and treatments are very straightforward. It’s when you have an illness that is difficult to diagnose and your not getting better with the first or second treatment that the patient winds up having to be a doctor for themselves. It sucks.

You have to have a doctor who sees themselves as a partner in treatment, rather than they are the know it all. That’s my conclusion after years of dealing with doctors.

Regarding side effects from medications, just like the example above regarding niacin, I have tons of examples like this. Proven side effects that doctors dismiss. it doesn’t matter if it’s on the known side effects list though, it matters that it is happening to you. Doctors prescribe drugs when the warning label says right on it you shouldn’t take it. It’s exhausting to have to be so vigilant! To second guess everything, because people who should know what they are doing don’t.

I started going to therapy two weeks ago. Someone to talk was really needed. On the second visit I talked briefly about how I have realized I have pretty extreme trust issues. Not with family and friends, thank goodness, but with professionals. I expect them to be incompetent and not care. I’m very surprised when they exceed my expectations. Doctors, lawyers, accountants, and also service people, mechanics, everyone. I told her it really got bad when I had to deal with a chronic illness. The doctors really caused me incredible sadness and anxiety. She revealed to me she has a chronic, fairly serious, illness. She told me she also has had problems with doctors. Then she said to me, “it changes you.” I started to cry. That’s maybe the first time someone said to me that it changes you. Most people tell me I need to deal with it differently, or some even say things like they never have problems like that with doctors. I’m told that I need to not put the doctors on the defensive, and to not tell them what to do. That I need to calm down. Good luck with that.

I’m a little off subject, but it all goes together. If you try to take part in your treatment, or if you start questioning your doctor’s suggestions, get ready to have to change doctors ten times, and have to research diagnoses and treatments yourself. You will likely become one of those patients/people who “always” complains and is high strung, frustrated, and disappointed. I hope it doesn’t happen to you.

I knew you would chime in and was looking forward to your contribution! I’m so glad you have a counselor who understands you in a very real way.

I don’t know my current GI well enough yet to know how he would react to me wanting to quit this medication, and he has the power to ruin my life in a big way, so I’m hesitant to even test the waters.

It frustrates me that patients only have power in half of the equation – refusing treatment – doctors still have us by the balls if we want to get a treatment they don’t want to prescribe.

@Mariah Oh yes. We can get accused of shopping doctors for meds. I’m not even talking about good drugs with high street values. LOL.

I want to say I have had a few doctors who really get it and do work with me. They are just few and far between.

If I can encourage you, I say talk to your doctor about stopping or changing meds. Depending on their reaction you will decide what to do next. You have the power to stop whenever you want obviously, it’s a pill right? You want to do it with your doctor’s help though. You might not get his approval, but you need to know he will be there without scolding you if it doesn’t work out well.

Doctors have to worry about not getting sued. It makes it all more complicated. My doctors who didn’t worry too much about the standard of care have helped me the most! But, they take on a lot of risk.

It’s essential to get the patient engaged with the treatment to achieve maximum success. Even if you’re talking about a treatment where the patient is fairly passive (say surgery), their successful recovery demands they are invested in the process. Of course doctors can treat patients without their support, but treatment where the patient feels they have some input and agency is most likely to be more successful.

@JLeslie It’s just a probiotic. My doc wants me to take it because I take antibiotics and he’s concerned about c. difficile. The probiotic is harming me, but I fear that if I tell my doc I’m stopping it that he’ll stop letting me have my antibiotics, and I need them very much. And docs never seem to believe me when I say that probiotics harm me – I know it sounds ridiculous, but they do. I’m beginning to believe that Crohn’s is all an immune response to the gut bacteria. Or, at least, my case is.

I used to have a wonderful, amazing, renegade GI. I miss him so much. He’s at my parents’ town, but I don’t live in that state anymore.

My son-in-law-to-be has had an interesting experience in this regard. He’s a high-level triathlete who has competed in a number of invitation-only (qualification required) Ironman contests. He’s quite a specimen. But several years ago he collapsed after a race, and subsequent testing and treatment at the emergency room disclosed that he was a full-blown Type 1 diabetic. He had not had a clue until that time. Apparently his training and general good care of his body had masked the development of the disease until it finally caught up to him and made its presence known.

He started “regular” treatment and the normal prescribed diet for diabetics at that point, and started studying the disease very intensively. He also studied the radical-at-the-time extremely low-carb diet recommendations of some researchers who have been finding that carbs themselves are leading a lot of people straight down the path of overactive insulin production and then to insulin resistance and then to diabetes.

He had been working as a physician’s assistant / nutritionist all this time (which helped him in his studies and research), and has now become a nearly complete “meatitarian” – he is a bug on carbs, and eats as close to a protein-only diet as he can – and he’s been getting better again.

I haven’t talked to him specifically about the debates and back-and-forth with his physician, his (former) employer and others about his new crusade for low-carb and no-carb dieting, but it’s on the agenda. (Whatever debating he did with his former employer weren’t the cause of his leaving that job; he just got a better offer.)

@Mariah It doesn’t sound ridiculous at all to me! I don’t know what you mean by harm, but I can tell you that a certain brand of probiotics I used to take used to upset my stomach. I was told everything from it couldn’t be to it didn’t make sense. I’ve tried that probiotic three separate times months apart, it definitely was that pill.

Maybe you just need a different probiotic?

I can tell you that a doctor of mine who prescribed me heavy doses of IV antibiotics didn’t believe much regarding the probiotic stuff. He felt our systems usually have enough good bacterias, especially regarding some antibiotics that don’t seriously attack the good bacterias. I didn’t take long term antibiotic though, just big doses for a few weeks. I have taken probiotics at times when I take penicillins and they did seem to help.

Taking antibiotics makes me feel so much better. I really get it. I don’t take them ongoing, because I’m afraid of resistance and the type I take do affect the tummy and yeast growth, but I’m thinking of finally trying it if I can still find a doctor to prescribe. I want to feel good again.

It’s aggravating my fistula, which had been mostly dormant for the last few years.

This is the third type of probiotic I’ve tried. When he recommended it I told him probiotics usually give me problems, and he said “try this one it’s different.” It’s been the same.

I dunno how much your doctor’s word would apply to me since I have no colon for bacteria to live in anymore! Though they’re clearly populating my j-pouch. My doc is pretty worried about c diff with my long term antibiotic use (about four years now) but I’d rather take the risk than have a Crohn’s flare.

You’re the first person who’s told me they have the same relationship with anti and pro biotics as me. Most people get gut distress when they take antibiotics and feel better with probiotics. Doctors look at me like I’m a freak when I tell them I’m backwards.

@Mariah the antibiotics don’t make my “tummy” feel better. I don’t have tummy problems, but I do have vaginal and rectum/anus troubles, and very specific antibiotics are my magic pill. It’s not just how I feel, it’s observable. I’m less red, and other mal symptoms that are visible upon examination resolve.

For years doctors kept saying I have yeast problems even though under the microscope and cultures were all negative for yeast. PLUS, I feel better on the antibiotics, which should confirm further my problem isn’t yeast. They still can’t think logically about it for some reason.

Oh, gotcha. Sigh. Sorry for your troubles, friend. At least we can bitch on the internet. :)

@Mariah I thought antibiotics are a standard of care for Crohns? Maybe you don’t need to be so worried they won’t prescribe for you.

Last time I was there he gave me the talk about how I shouldn’t expect antibiotics to work for me indefinitely and that maybe I should consider going back on immuno-suppressing biologic injection type meds. Fuck everything about that. I’ll do that once I really, really have to.

A horrible choice. It seems to me immunity-surpressives aren’t treating the underlying problem whatever it is. I think the antibiotics do. A lot of doctors buy into the idea that antibiotics work because some of them are supposedly anti-inflammatory. I don’t believe it. I believe there is a bacteria, parasite, microplasma, something, causing the problem and the antibiotic kills it. That’s my layman’s opinion after years of being sick and trying treatments.

Can I ask you what antibiotic makes you feel better?

Yeah I’m on that train now too. Probably the only reason getting my colon out helped me was because it was the home to most of the bacteria. Wishing someone had tried antibiotics on me before I took that drastic step. Nothing I can do about that now, obviously.

Every one I’ve tried has worked on my pouchitis symptoms. I was on cipro for a long time but my GI noticed that it interacts with my SSRI to cause dangerous heart palpitations. He was the first doc in 3 years of me being on both meds to notice that. So I switched to augmentin which is doing the job just as well.

Augmentin is my magic pill.

Augmentin is usually hard on the stomach for a lot of people. It does kill good bacteria, while other antibiotics aren’t as lethal to the good guys. It’s my magic pill. I’ve tried many antibiotics that did nothing.

I have a really rare blood cancer. My hematologist might see 2–3 patients with this cancer in her career. I’ve read tons of articles, gotten second opinions from experts doing research with my particular cancer and gone to seminars discussing my particular cancer.
She has more knowledge about medicine and hematology in general than I do but I know all about the latest research in my particular cancer.
She talked me into taking a chemo drug that my research told me I didn’t need. My cancer is chronic but not fatal and the latest information says that I shouldn’t need such drastic intervention at this point.
I had some really icky side effects from the chemo and told her I refused to take the meds.
She might be the doctor but I think I have more up to date info than her. Both of our decisions are based on research and science but we both have different ideas about what I should be doing. In cases like this the patient needs to take charge of their own health.

I learned in my early twenties that as a young, pretty woman dealing with the old-white-man doctor culture that they simply wouldn’t listen. I have had two conditions reach advanced stages because of this. Things are better now (I’m 62) because I find younger, more open minded doctors, I have educated myself extensively on this to be my own advocate, and I have learned all the jargon to make me sound more credible.

An educated patient can be a terrific asset, I think that this generation of medical professionals is more willing to see the relationship as more of a partnership.

I think it’s necessary for patients to advocate for their care and to be knowledgeable about their treatment plan. However, can I go to a doctor and demand a certain treatment? I can try but if the treatment is dangerous or the doctor feels it may not work, they’re probably not going to be willing to do it and risk lawsuit. Especially if it’s an expensive treatment and the insurance company is going to require a good reason why it was prescribed, the doctor may be caught between a rock and a hard place.

By all means discuss these with your Doctor. I am one of those patients that goes to my appointments armed to the teeth with many treatment options that I assume are outside the mainstream modern medical treatments available. He never ceases to amaze me with his knowledge of these treatments and more often than not we will discuss how some of these options may be beneficial to incorporate at some point in the course of the treatment he is recommending.

I decided to inform my doc that I’m quitting the probiotic. Hopefully this doesn’t bite me in the ass. I only made the decision after confirming that there’s another GI in my area who has an opening in 3 months, and I have 2 months of refills of antibiotics left so I could probably stretch them to make it work if my doc decides to be a dick about this.

BTW, if any of you know anyone who takes a probiotic called Florastor let me know and I’d be happy to mail what I have left to them. It’s only 5 days worth but that’s $10 of free meds so.