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

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.

The comment that got me thinking

On July 4, I woke up, checked my phone and read a comment on my When The Dress Fits… post that felt like a punch in the stomach.  I almost responded via email right then, but I know myself and I know I need time to process my thoughts and brood. I would have haphazardly gotten some of my thoughts out but not all, then wished I took a different approach. So, I waited. I alternated between thinking about what I’d say in response and trying not think about it at all. I’m glad I waited because as the week went on, I kept thinking of more I wanted to say in response — especially because if one person comments it, others might be thinking it.

I found a lot of things troubling about this comment, and as the days went on I kept thinking of more. The best way to get out all my thoughts is separating my points about the commenter’s assumptions into sections:

You don’t have to be “fat” to feel uncomfortable in your skin
I have a small frame. I never say things like, “OMG I am so fat.” No. I know what I look like. I know that what I see when I look in the mirror is not the same as what you likely see, but I know that when it comes down to it I am thin.

I’ve gone through a few stages where I wasn’t “tiny thin” as the commenter describes. In college I was a good 20 pounds heavier. Once I graduated and ate like a normal person again (by normal person I mean person who doesn’t eat four dinners in one night) I lost the weight.

But that’s not even what I tend to think about when I think about being uncomfortable with myself. I think about the time in 2008 when a salesgirl called me thick.

I can’t even begin to describe the pain her words caused for me. At the time I was in the midst of my GI illness with absolutely no idea how to manage it. I was a very healthy eater for a few years by then,  so I didn’t know what to do when I gained weight, was constantly bloated and inflamed, none of my clothes fit anymore and I felt uncomfortable. That is the best word to describe it. I was uncomfortable ALL THE TIME.  Every weekend I stayed in pajamas in bed because I couldn’t deal with getting dressed and seeing myself. I didn’t want to put on more sweatpants or think about all the jeans that didn’t fit.

It’s hard enough to feel that way and feel so powerless to change it, and an outside source adding fuel to the fire by calling me thick destroyed me.

A couple of years later I got myself into a much healthier place, cleaned up my eating and grew to love effective exercise and really turned my life around from that immensely difficult and depressing time.

And even now, when I had a better handle on everything and was loving working out and all the positive changes I felt and saw, I still have times where I feel uncomfortable. I don’t tend to voice these feelings because of comments just like this. For some reason there is this idea that smaller people don’t have the right to admit they aren’t happy with their bodies.

I hear all the time “Oh you’re so skinny, you can eat as many of those [brownies/cookies/pretzel croissants] as you want!” No. I am in good shape because I work hard at it, because I want to be in great shape. While I eat all the foods I just mentioned, I definitely can’t “eat as many as I want” any more than the next person can! I gain weight or inches just like everyone else. I happen to be on the small side, but when I gain, I feel uncomfortable just like anyone else.

So, while I do have a small frame, I have the same struggles as anyone else at any size. Being small doesn’t mean being fit comes easily for me. I’m not in good shape because I am “tiny thin,” I’m in good shape because I work really hard at it.  Erica Sara wrote a very eloquent post about this same thing last year, saying, “People seem to think that because I’m thin, I don’t have feelings.”

Exactly. That comment was mean-spirited; she very easily could have phrased the same point in a different light, but that’s not what she was going for here.

Why does being thin make my gain any less significant than someone else’s?
I don’t actually know how much I gained last year. I don’t own a scale and I don’t measure myself. It is easy to assume that because I am relatively thin that I only gained “an inch,” but my guess is that it was a bit more than that because of the whole not fitting into my clothes thing. That said, even if it is just an inch, why does it matter? What does it matter to anyone else if I want to fit back into my clothes?

It’s not easier (financially) for me to buy a new dress than to exercise
While I focused on the actual dress in my post because it had a lot of meaning for me — I treated myself to an expensive thing I don’t normally buy, I wore it on my first day at my job — the dress itself wasn’t the only clothing issue I had. The problem was almost ALL of my clothes. My jeans didn’t fit, my workout pants felt uncomfortable, my workout tops pulled too much, my skirts didn’t fit and neither did some of my other dresses.

So while I certainly can’t afford to buy a new $300 dress that was a treat to myself every time I gain or lose weight, I REALLY can’t afford to replace my entire wardrobe every time either. I don’t know anyone who can, and I have a hard time believing the commenter can either. And I don’t know why anyone would. It makes no sense, especially when I know it’s not that hard for me to get back into shape.

And if I’m going that route and just buying new clothes but not getting back into shape, what happens when I gain even more than the “inch”? Buy another new wardrobe? And then when my health sucks because I’m in bad shape and I can’t afford my medical bills, what then?

It’s not easier (mentally) for me to buy a new dress than to exercise
Hate to burst the commenter’s bubble, but I hate shopping and I love Refine. It actually IS easier for me to take Refine for an hour than to shop for an hour.

The dress was the vehicle; it was not the point
I only wrote about the dress at all because I was pleasantly surprised when it fit. I usually blog on Tuesdays, and I usually know what I will write about ahead of time. I wrote that post on a Friday afternoon on a whim because I realized the significance of my hard work. I wasn’t tracking or counting or doing anything I wouldn’t normally do. My sister-in-law explained it well when she said the dress was a writing tool for me to express the way I feel about exercise (specifically Refine) and how it relates specifically to me in this one time period. The dress was not the point of my taking Refine classes.

If I make Refine sound like “beating myself up” on this blog, it reflects a weakness in my writing
The point of my post was to demonstrate that beginning ANY fitness routine is extremely difficult, and that like anyone else first starting out, I too wanted to quit.

Even though I just ran a marathon and took Refine for a year before that, it was just as hard for me starting over as for people who never exercised before. But when you stick with it, it gets easier! You improve quickly, you get stronger. I was struggling at Refine for about a month, as I mentioned in the post, before I began to feel strong again.

Once I got past that initial month where the class was more difficult, I fell right back into my groove and was in love with the class once again. I went from being nervous about the classes to craving them, looking forward to them.

My intentions with that blog post was to show that beginning an exercise regime is hard, but it gets better and you can achieve your goals. I never meant for it to seem like I was miserable or like I was beating myself up for months just to lose an inch. If that’s how it came across, then that means I’m not as effective a writer as I’d like to be.

I’ve taken classes that DID feel like beating myself up and while a class like that can also be an excellent workout, I don’t return if I feel that way. I don’t see a need for me, or anyone, to beat themselves up to lose an inch. I don’t do workouts that make me miserable; I work out to feel happy.

I would have taken Refine classes this entire time even if my dress did fit
If I still fit into all my clothes, I still would have started back up with Refine in exactly the same way. I didn’t go back to the class to lose an inch, I went back to the class because I missed it and loved it and I wanted to feel that adrenaline that I feel after every single class. I went back to the class and HAPPENED to lose whatever I gained, but that is absolutely NOT why I went back.

I adore Refine Method.  Every day I think about how thankful I am to have a workout in my life that I love so much. I try to get everyone I know to go there because I truly believe they will love it too. The other day after class, I even thought (and considered Tweeting), “I wish I could marry Refine.” That is sad on a number of levels, but yes, I love this workout.

As the Ander wrote in his post 10 Random Things You Don’t Know About Dori: “She Likes The Refine Method – As she’s written here a million times, she is a big fan of this workout. No matter how crappy she feels before, she always comes back with a big smile on her face.”

Would you choose a new dress over that?

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