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This is why I didn’t go to the GI doctor for a long time

Posted Sep 18 2012 10:13am

There’s a lot I want to blog about. My engagement (thank you for all the congratulations!), my Healthy Living Summit experience (wow I am behind on that one), why running is so impossible for me lately, the race I ran last weekend and the half marathon I’m running this weekend. Work’s been, well, work, and my time is stretched thin. Also, I really like watching Criminal Minds on the couch. I might love Hotch more than Andy. I’m still deciding about that. I plan to catch up on all my blogging though, because I’m not quite ready to give this blog up despite how strong the pull of the Behavioral Analysis Unit can be.

And today I want to talk about that GI doctor’s appointment last week, the one I mentioned last month . The one I only made because Andy and my mom were on top of me to see a doctor again. “Maybe someone else (in addition to the seven I’d already seen) will know something,” they said. And really, I wanted to go too. I hoped someone would at least be on my side and help me. I had a glowing recommendation from someone, and I waited for my September 12 appointment to come.

Despite my skepticism that the doctor would actually know of anything new that could help me, I still had high hopes. Andy told me I should go in with an open mind. As though I wasn’t. I mean, I expressed my disbelief that anything would come of this but that didn’t mean my mind wasn’t open. As though I’m not, despite tons of reasons not to be, an optimist.

I’ve always been this way. Even before I knew the word I was aware of how I always expected everything to be good. I always got excited for new things and embraced change. I always think the next thing will be better or at the very least, I know I’ll come out still feeling generally positive about something else.

So yeah, I was looking forward to this appointment for a long time. Not only did I have a personal recommendation from a GI doctor in another state, the doctor I was going to also had rave reviews online.  I figured that at the very least, I’d have someone on my side, someone supportive who listens and understands and just wants to help me — even if it’s not entirely possible to at this time.

In all my time dealing with this illness in the last five years, I found just one doctor I felt that way about. But she doesn’t see patients — she only does consultations. So after my visit with her in 2008 and the thoughtful letter she wrote to my doctor about my situation, I couldn’t continue seeing her.

So last week, I arrived at the new doctor with my stack of medical records. To make the visit more efficient, I spent two hours that day writing an easy-to-read three-page timeline of everything I went through for the last five years. I also created a table with one column listing all the medications I’ve taken and another listing every test and procedure I’ve had.

I gave all my information to the receptionist, who scanned my files into their computer system. When the doctor came in, she asked me the reason for my visit. I mentioned that a doctor in another state who knows her recommended her to me, and she looked at me blankly. Then I gave her a short version of why I was there, told her about my visit to the surgeons in 2009, and explained that all the details of my history are in my records on her computer.

“You should call the surgeon right now.”

That was the first piece of advice my doctor, the doctor I am trying to see to help me avoid life-changing and possibly life-destroying surgery that might not even work, offered to me. Despite the fact that I already explained to her that I walked out of the surgeons’ offices in 2009 determined to NOT have surgery.

The surgery, by the way? It’s called a colectomy and it is exactly how it sounds. They remove your entire colon. Not to mention the number of complications that can happen (which could result in a colostomy bag – um, no thanks), both surgeons told me there is no guarantee it will actually work. And if it does work, I would spend the rest of my life dependent on the closest bathroom.

And I am managing just fine without the surgery.  I am otherwise completely healthy, I am in great shape, I run and I take Refine classes and I work all day at an office where I do things that sound fun. Yes, I spend a completely absurd amount of money each week on colonics, but right now it is worth it for me to have the normal life of a 29-year old. Plus, there was that 10-month period in 2010 where I was practically better. I can manage. I might feel better again.

I decided to ignore her surgery comment and instead explained to the doctor that I am hoping she has some new ideas that I haven’t tried in the last five years.

“Well, there is this medication you could try. It is called Amitiza.”

Amitiza is the only FDA-approved medication for what I have . Did this doctor really think that I would endure being in pain and discomfort for five years and not take the only approved medication? Did she really think that they would do MAJOR SURGERY on someone who didn’t even try the ONLY FDA APPROVED MEDICATION for her condition?

I remained calm and told the doctor I tried it and it didn’t work. I explained she can find a list of all medications I’ve taken on the list on her computer.

She didn’t bother to read it, didn’t bother to look at it. She just kept recommending basic suggestions, like those you would recommend five years ago when the patient first complains of symptoms.

Then we talked food.

“I recommend you eat foods like meatballs and Activia yogurt.”

This was clearly not the right doctor for me. Never mind the fact that I don’t eat meat and try to avoid heavily processed foods, I just can’t work with a doctor who believes these foods are the key to anything healthy. I need a doctor who understands nutrition. I need a doctor who understands that what you put in your body is crucial for your overall health.

I want a doctor who understands that colonics help me live a normal life, not one that tells me I shouldn’t do them because I might get an infection (it hasn’t happened ever, so I’m not worried about that). I want a doctor who will actually read my files instead of asking me redundant questions that are already answered there.

She gave me a pamphlet for a clinical trial she is directing. Participants get paid to receive acupuncture treatments for IBS. While I don’t have IBS, I am open to anything that could help — especially if I’m paid to do so. I’ve tried acupuncture before, but why not do it again? The doctor urged me to call the next day, saying she really thinks I would be a perfect candidate for this.

I called the next day and answered a few questions. Then they told me I do not qualify at all, because this is a trial for people with diarrhea.

Why did my doctor, who is DIRECTING this trial, insist that I was a perfect candidate?!! Did she even hear a word I said? She clearly did not read the part about my diagnosis of colonic inertia.

That’s the other thing, by the way. She kept telling me I have IBS, but I already have a definite diagnosis that I don’t. I have colonic inertia, and this diagnosis is supported by many tests — the results of which were on the doctor’s computer, had she bothered to glance through them.

She didn’t listen to me and she didn’t understand my situation. It was also the end of the day and I got the sense that she really wanted to get home. Her “examination” of me consisted of pressing down on my belly a few times.

When I sat back down in the chair, she said: “I strongly recommend you call the surgeon right now. You will have to wait months for an appointment for surgery, so you better get in as soon as possible so you can have it.”

I felt crushed. This woman exemplified every reason I haven’t visited a GI doctor in a long time. THIS is why. I wish I lived in a place like Washington where they have NDs. Then I could find someone willing to work with me, someone who understands the whole picture including nutrition and whole foods, someone who will not determine me a lost cause without even reading my records and instead just push me off onto surgeons.

And this is why I express doubt to Andy and my mom when they insist I see more doctors. Because at least in New York City, this is how the majority of the doctors are. If you know of any who aren’t like this, please let me know. But this experience perfectly illustrates why I am skeptical about taking time off work to see GI doctors. And yet I still feel hopeful before each visit. Just in case.

There were a few maybe-positives, however. She told me about a drug that is not available in the US but that I could order from Canada. It’s about $250 a month, so I will probably look into it at some point soon. But first, there is a new FDA-approved medication coming out in the US next month. Once that is out, I can easily get a prescription for it and I plan to try that first.

She also recommended a prenatal vitamin that has a special kind of iron in it that might help. I figured it couldn’t hurt and I filled the prescription, paid the $50 (for a VITAMIN?! and this is WITH insurance!) and have been taking those. So with three new things to try, at least I got something out of this appointment.

What I didn’t get? A new doctor.

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