Wednesday, January 21, 2009

Wellness Wednesday: Medical Practitioners

Today is Wellness Wednesday, I'm going to gripe. About my colonoscopy.

I am already at odds with my primary care provider about my decision to use bio-identical hormones. She doesn't believe in them. She may or may not give me a referral related to them (I think I need to have my hormone levels checked) and if she doesn't (meaning I'll have to go on my own and pay cash instead of having the insurance pay), I'll be in the market for a new pcp.

Why oh why can medical professionals not simply respect people with views different from theirs? The field of medicine is so vast and can never be mastered by any one individual; so much is controversial, and physicians should be supportive of patients who they cannot help who then choose to seek treatment elsewhere, imho.

Then there was my colonoscopy, so poorly scheduled on Inauguration Day. I did the colon prep on LoveHubbie's birthday and Martin Luther King Day. Great timing.

I had previously worked out a way with my gastroenterologist's partner to avoid the week long diet requirement of a low fiber all-white diet---white sugar, white flour, nothing fresh or frozen, only highly processed and refined white foods with all fiber removed. For one week. A whole week! I'd be climbing the walls after just a day. Lose my mind by day three. LoveHubbie would have left me on day five. If they could corral me and bring me in on day seven, I'd then have my colonoscopy. I am extremely food-sensitive.

So my gastroenterologist's partner said, no problem, all the recent studies show that the week long all-white diet does not produce significantly different results from just a standard diet. However, I'm thinking that she didn't understand that I don't eat a standard diet. I eat clean, whole, local, organic, mostly unprocessed fresh foods and cooked foods. This ended up being troublesome.

But at the time I went in for the procedure, I didn't know it. For the previous 36 hours I'd been drinking mostly fruit juices and chicken broth and was getting a migraine. I couldn't drink any water or take any medicines. I was weak and hypoglycemic and very anxious.

I was immediately put into a queue of at least a dozen patients in beds. Lots of nurses rushing around. Little tiny "rooms" cordoned off by cotton curtains with only enough room for the bed itself. Only visual privacy. I felt like an animal on a factory farm. I had a nurse, a harried RN named Lisa. She was in a great hurry and a bad mood. She wouldn't let me ask any questions, cutting me off and insisting that I would have to wait and ask the doctor anything medical. She seemed to be having a really bad day. I was having a bad day too, so I felt sorry for her, but still wanted to find out about my migraine. Once the migraine "blossoms"---without any medication at all---it takes Demoral and an ER visit to contain it. It has been about 8 years since that's happened last because I practice good self-care and have good migraine drugs.

It was a terrifying feeling to have no control, to be getting a migraine, and to be alone and silenced. In that queue of patients and involuntary sounds. In a bed, ready to get drugs that would "take the edge off" but make me even more disoriented. I had tried to ask various questions, to no avail. I knew that I would be going in to the OR soon. Lisa told me they would give me something to "take the edge" off and "if I remembered my questions I could ask the doctor then". That scared me too. She wouldn't take any questions and acted as though I was impertinent to even have questions.

Finally...yes, finally...I insisted that my husband be paged and told Lisa. My voice was different and I wasn't nice. Now, thinking back, I wish I would have gotten up and left. Stuck them with the lost surgical billing. It's a free country and I was not a prisoner. However, I really wanted my colonoscopy. I'd worked so hard, done that awful prep, and I wanted to know that my colon was okay! Still, knowing what I know now, I would have left. I would have felt better about myself. Proud of myself.

Lisa heard the change in my voice and decided to ask the doctor my question. Seemingly perturbed, he came out and talked to me. He told me that he didn't want me to take the medication and that the anesthetic would take care of it. I thanked him. Just a simple question, and a simple answer.

So I went in, suffering from the migraine until I lost consciousness, and had the colonoscopy.

However, the results were inconclusive. They couldn't see the inside of the colon, despite the days of clear liquid and the Colyte prep and me spending several hours on the toilet. I had not followed the diet, and there were seeds and evidence that I had had fresh fruit and other things that were not white in the previous week. There was even proof I'd had vegetables! The gastroenterologist---we'll call him Dr. GE---was very unhappy that I had listened to his partner. He said there were plenty of healthy things that I could have eaten---especially white rice. For a week. I told him that I eat brown rice. He seemed really, really annoyed then, and said that he would not negotiate, that I could either eat the white diet and do it right or it would be a waste of time. I told Dr. GE that there must be a healthy way of doing the diet, and he looked at me like I was from Mars. I left with LoveHubbie.

All last night and today I felt weak and bad about myself. That colonoscopy was all I could think about. I eventually realized that I felt so badly because Dr. GE did not seem to respect my dietary needs, or to even feel they were worth considering. To me this would be like saying to a vegetarian or a vegan, "Well, just eat meat for a week, it won't hurt you." I would never, ever do that! I am extremely food-sensitive, and I respect others' ways of eating. I'd just wanted Dr. GE to respect my way of eating and to be willing to work with me to come up with genuinely healthy things that would satisfy his requirements.

Once I realized why I felt so terrible, I got angry, and that made me feel better. I found out the name of a gastroenterologist on the other side of town who competes with Dr. GE (who has my side of town sewn up) and who is well-respected as well. I don't think I will ever take being treated like I've been treated this week by my pcp, by Lisa the RN, or by Dr. GE again. I'll be alert ahead of time and observing how I'm treated instead of focusing on being compliant.

Now, on the other side of these few experiences, I don't blame Lisa and Dr. GE. I did this to myself. It was all me. Plenty of patients want to be told what to do. And to just follow. It's simple and easy. Plenty of physicians don't want their patients to think---just to be compliant. They are a good match and have much to benefit from each other. I am a poor match for this way of practicing medicine. I want to be a responsible patient and to seek out the progressive and informed and well-educated physicians who are looking for patients who think and who are committed to their own health. Patients who will consequently be ultimately more compliant than the others, because they truly care about their own health and know that it is their responsibility, not the physician's.

So I learned a lot from this. I know I'm venting here. I'm worn out from the medical establishment.

On the plus side, tonight I attended a function where I met an integrative physician and a naturopath. The integrative physician (an MD who practices complementary medicine) has a one year waiting list. But still, they are out there. And whether or not I get the referral from my pcp, in February I have an appointment with an MD who will check my hormone levels and adjust my bio-identical hormones. Even if I have to pay cash.

We are fortunate to have alternatives. We just have to stand up and demand them. I wish I had learned these lessons earlier (like when I was in my twenties. or thirties. or forties.) But in truth I do consider myself blessed to learn them at all.

8 comments:

Kim Mailhot said...

Oh, Olivia, I am so with you on all of this !!! If I was to start to vent, it would never end !

Things will have to change, that is the bottom line ! No more doctors as the authority and the "process" as the ruler of all things. The change will come because more and more of us are realizing that we are all indeed the only one's responsible for our own health and well being and the medical system will have to catch up, shape up and comply to the needs of the patients and not the other way around !!!

You have every, every right to feel furious ! You should also, however, feel proud of yourself ! You are a pioneer, forging the difficult path towards change. It is horrible that you had to suffer so but believe it or not, you taught those people something - even if it was just for one moment - you taught them that you were not just a piece of livestock waiting to go through their multi-step procedure. You showed them that they need to treat you like the human being you are in each and every step along the way !!!

I have had this role also and it is a very hard one a lot of the time. Difficult, crazy, non-compliant, needy,...label me as you will. But I will not give up my control over my body and my being to just anyone - answer my questions, offer me reassurance, gain my trust, treat me like you would your mother, sister, daughter, wife and treat me as you would like to be treated. Do no harm ? That is not enough ! You are not treating a body or a disease, you are treating me, who is the same as you, with feelings and needs that should not be denied by the very people claiming to want to "help" you heal and be well.

We have a lot of work to do. The good thing is that there are angels along the way to help us through. And sometimes we even provide the angelic presense that someone else needs. We are all in this together though, and when we all finally realize that, then the real change will come.

Carry on, Brave One !I got your back !;-)

Sacred Suzie said...

Oh no! That is all so horrible! I can't believe you had to prep for a week. I just did the drink thing the night before (which was bad enough) when I went in for mine. I wonder why yours had to be so food intensive? And it's true, people don't understand food sensitivities. I'm so sorry to hear about this! I hope that you manage to find out results some how, some way, so you can get the answers you need.

CrystalChick said...

WOW. You absolutely needed to vent about all of that. What a mess of things you've been dealing with.
I have had a gastro doc for many years. I've had 3 colonoscopies. The first time I don't remember the exact prep but it was about 2 days. Because some polyps were found and removed I had to go back in a year or two for recheck and I did, however, I asked for a different prep. That one was ALOT of liquid but a shorter prep period, maybe 1 1/2 days. The second test went okay and was clear. When I went for my 3rd and final check I asked what new preps were available and Doc told me about pills. Okay, I can do pills, that liquid one was INSANE (I think I'd started vomiting from it) so anything else would have been fine. He gave me a script, I got the pills, I took them all as directed, but they didn't clean me out enough so the final test was incomplete. He had never used the pills and didn't know I'd have needed many more of them. And they were HORSE pills too but still I figured better than drinking all that colyte stuff.
I have seen him since quite a bit for tummy stuff but he hasn't asked me about rescheduling the test that didn't work. I know at some point I should but... you know... it's hard to get all that done. The test itself is nothing as you're under sedation, but that PREP. OHMY
And yours... I am really surprised at what they wanted you to do. Having had the 3 of them, I never once had to go on a special diet the week prior. It was only the full day before clear liquid/meds fast and that was bad enough. I wonder how things have changed in colonoscopies in the last few years.
Sounds like you eat good food normally and prepare it in a very healthy way. And for the test, you were drinking only broths and juices for a few days. How could that not give you a clear colon??
I am glad to hear that you are finding another doctor. :)

Have a nice weekend, now that this ordeal is over for the time being. Peace, M

Olivia said...

Thank you, Kim! Thank you :) You totally got where I was coming from with this. I appreciate your affirmation and acknowledgment, which was very, very edifying to me.

Thank you for having my back, too. You are sweet and have been a major support on my journey,

Love, O

Olivia said...

Thank you, Sacred Suzie. You know, the week-long prep is very controversial; the current studies say it is unnecessary, but my doctor went to school in the late 70's. And I suppose he knows what he prefers. He's a fellow, very highly qualified. But STILL!

I think that when Kim wrote about angelic presences, this is what I feel like is happening now as I am looking to be steered in a direction as far as what to do. Several things have happened even just since I posted this, so we'll see.

Thank you for your comment and support; it's good to see you here!

Aloha,

O

Olivia said...

Mary,

Boy, I totally agree with you about the prep! See, there are so many ways of doing it, every doctor has what they want, and even then it might not work exactly right!

I think some seeds and particles of nuts or something were left in places they shouldn't have been. He also could tell I'd eaten fresh fruit and vegetables in the previous weeks. I guess such fiber can hide out in the nooks and crannies?

Well, you are right, it's over for now and I AM SO GLAD!

Thanks Mary, and I am wishing you a healthy colon as well :)

Namaste,

O

kikipotamus said...

Olivia, yes yes yes. I am really proud of you for what you learned here. I am really blessed to have the PCP I have right now, he is always willing to listen. Plus I can also see a naturopath if I want to. Recently I was referred to an OBGYN for the first time and it did not go well. When I told him what I was doing for the fibroids (alternative things prescribed by my last naturopath in another town), he laughed out loud. For this reason and a few other things that happened during the consult, I simply won't be going back to him. Period.

It's so important to find a PCP who is on your wave length.

I'm really sorry the colonoscopy and prep were wasted due to the miscommunication.

Olivia said...

Kelly,

The colonoscopy was an expensive (considering my time investment and discomfort) lesson for me. The stories you and others tell me here help me to feel more courageous in speaking up AT THE TIME to my medical practitioners. I think that if I project an image of confidence rather than compliance, I will be less likely to have some of the things happen to me that have happened.

One problem is that you just never know what you're going to face. Like a doctor laughing at you! Even if you were consulting tea leaves or a witch doctor, it's rude to laugh at someone who is doing their best to be well. This is not compassion or any decent or respectful kind of bedside manner. I would like to be able to say this to my doctors at the time instead of being unprepared and stewing about it later.

I am very glad you have a good PCP.

Thank you for your support and your sharing, as always,

xxoo, O