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.
26 comments on This is why I didn’t go to the GI doctor for a long time
1Pingbacks & Trackbacks on This is why I didn’t go to the GI doctor for a long time
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Nikki
September 18, 2012 at 10:39 am (12 years ago)Hi Dori, sad to hear your appointment did not go as well as you had planned. But you are a smart girl and sounds like you have done your research and have background knowledge on their recommendations!
Looks like you have done the best you can keeping it all under control–wishing you luck this weekend with your half marathon, you will do great, and congrats again on the engagement!
Nikki
MelissaH
September 18, 2012 at 10:41 am (12 years ago)Yikes. I’m so sorry Dori. My only advice is to keep looking for a doctor who understands and will work with you. Don’t give up because the right person is out there. Is there any way one of the doctors in Washington could work with you? I know you have family out there maybe you could line something up the next time you visit. Good luck to you.
Michelle M
September 18, 2012 at 10:44 am (12 years ago)Dori, try Dr. Paul Stoopack in Jersey City. He is a great doctor and really takes his time during the visits. Good luck.
megan
September 18, 2012 at 3:49 pm (12 years ago)Hello!
I’ve followed your blog ever since I stumbled upon it for cleanses. I too had some major bowl problems and related to many of your symptons. Your suggestion of colonics is what first prompted me to try them.
I was in the same boat too…I went to the GI doc with similar symptons and the great piece of advice? Take a laxative….gee, thanks!
I have since discovered that I am lactose intolerant and have a gluten allergy…once I cut those things out of my diet, I started to make some progress. Natural Calm is an amazing supplement (magnesium) that has helped me as well. I follow a kind of “paleo” template. Lots of easy to digest things, meat, fish, fat…I still eat rice and potatoes bc I feel better when I do and I eat a lot of chocolate 😉 Dont know if any of these suggestions are helpful – you may have already tried them, but thought I’d throw them out there!
Missy Maintains
September 18, 2012 at 4:54 pm (12 years ago)Ugh sorry this keeps happening to you! Shira had a similar problem and saw so many doctors who found a good one who cured her:
Dr. Christine Frissora at NY Presbyterian—-70th and York 6469624000
She literally saw 4 docs before this one in a 9 month period before they figured out what was wrong with her. Hope that helps!
Dori
September 18, 2012 at 5:08 pm (12 years ago)Well, this is a funny coincidence. That’s the doctor I saw on September 12…
Dori B
September 19, 2012 at 9:47 am (12 years ago)Your doctor visits sound way too familiar to me. I struggle with the same issue with Endocrinologists, as I have autoimmune thyroid (Hashimoto’s). I am not sure if you said this yet, but have you gone the holistic route yet? I think you should try a Chiropractor that is also an Applied Kinesiologist. My Chiro has done wonders to alleviate symptoms and following his nutrition and supplement recommendations, I have felt a lot better. I’ve also heard accupuncture works wonders too.
Melissa
September 20, 2012 at 10:34 am (12 years ago)What a nightmare, Dori. D: This is exactly what is wrong with conventional western medicine and medical training today. Your post gave me flashbacks to when I was trying to find a doctor who could work with me about my longtime case of PCOS instead of the other 5+ doctors who just wanted to throw more birth control pills at me, and who told me to exercise more (even when I was doing sports 10-15 hours/week at the time) to lower my PCOS-induced and Pill-aggravated high cholesterol.
There are actually NDs practicing in the city, who are just licensed through other states (although since you pay out of pocket, that gets really pricey). I will say that I did luck out and find a GP who is currently completing a fellowship in Integrative Medicine, and she was super-supportive of my desire to go medication-free and to manage my condition through acupuncture, but I have totally given up on finding an OBGYN who will do the same. Anyway, Integrative Medicine MDs–let alone Integrative + GI docs– seem few and far between, but if you can find one, he/she might be more empathetic, open-minded, and holistic than typical physicians.
If you’re willing to give acupuncture another go, there’s a community-style clinic in the Financial District called City Acupuncture where treatments are $40 each. Brooklyn Acupuncture Project is my personal favorite and operates on a sliding scale, but would be a trek for you from Jersey. Weekly acupuncture has literally been the only thing that helped bring me back me from 4 years of bodily chaos.
Whatever happens, keep being an advocate for yourself. Good luck in finding a practitioner who listens to their patients and values the same things that you do!
Jordan @ Whimsical Desperation
September 21, 2012 at 6:42 pm (12 years ago)I’m so sorry you had such a bad experience with your gastroenterologist (and, it sounds like, so many others.) That’s really unfortunate that she wouldn’t look at your records or listen to you. Hopefully she’ll take time to sit down with your file later and write up a thoughtful report and you can still get something more out of the visit? I just saw a motility/neurogastroenterology doctor earlier this week and reading about your experience was painful. Her not even looking at which medications you have taken sounds dangerous. Did she explain why she wanted you to eat meatballs? I wonder if it’s possible she jumped to the IBS diagnosis because she’s studying that and has it on her mind.
It really sucks that there isn’t a colonic stimulator like gastric one. Or much in the way of effective treatment. It seems pretty awful that they would push such radical surgery when your quality of life is so high without it.
(Is the Canadian medication Domperidone by any chance? Just asking because if it is, I think you can probably find it for less than 250 a month. 🙂 )
Armistead
September 23, 2012 at 8:32 pm (12 years ago)Hi Dori,
First of all thank you for posting this blog about your experience at the GI doctors office. You are so brave to be honest with us here and it is appreciated. Your optimism is appreciated too.
I am SO SORRY you had such a bad experience with the doctor. I am an MD an it pains me to see this. But I knew from the beginning of this post kind of how the story would go. This is going to sound terrible, but this is typical. Seeing a patient without thorough chart review. It alarms me that the MD did not even read your chart. Part of a new pt evaulation is a THOROUGH chart review. And it sounds like you made this easy with your charts etc. So this doctor was NOT doing her job at all. And that comment about the meatballs…OMG!!! Run away from this MD and DO NOT RETURN.
You are SO SMART to not jump under the knife with surgery. You are definitely functioning at too high a level to risk that kind of very invasive surgery with the outcome unclear. So I would strongly encourage you to continue your excellent self care, continue your nutrition and exercise.
If you are coming to Richmond, VA for the half marathon or Marathon, you might consider seeing someone on the faculty at VCU/MCV. I think you would maybe do better with a GI doc who is in the academic setting, doing research. I have to believe that there are other, better treatments than surgery.
Anyway Best of luck to you ! Keep doing what you are doing!
In health,
Armistead
Amber
September 26, 2012 at 10:28 am (12 years ago)Wow, I am behind. I was going to say the same thing Armistead did – how did she not even read your chart if you brought it right there for her? I mean I know doctors are busy but dang, if I was that careless at my job I would not have one.
It is so frustrating to me when you get a generic suggestion from them “eat yogurt and meatballs.” Seriously? How is that even a serious suggestion?
Good luck with the vitamin and the new drug. I hope you can find something that works for you.
Gena
September 27, 2012 at 10:28 am (12 years ago)Dori, congrats on your engagement. But woe is me, re: this story. I wish I could be a GI doctor tomorrow.
Zee
October 21, 2012 at 10:58 am (12 years ago)Hi Dori,
After reading your tummy troubles – it rang familiar with one of my relatives who had exactly the same issues pretty much as you. She couldn’t ever ‘go’ and when she did it was through a ton of laxatives and caused so much pain. She was also told by a surgeon that removal of the colon was in her future. In the end she went to a hospital spa in Austria which is run by doctors who are obsessed with bowels. They diagnosed her with a nasty parasite which was living in her small intestine – not only was it eating all the amino acids needed for healthy digestion and gut transit but it was also preventing seratonin from being released. After a weeks stay, and nasty injections to kill off the bug, together with lots of herbs, she goes normally ie, she is cured.. She could have picked up the parasite from raw food like sushi, an animal, pretty much anything. Did you ever get tested for an overload of bugs?
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January 6, 2020 at 2:04 pm (4 years ago)I like that you had booked a gastroenterology checkup for your condition in another state. I appreciate that you had to take care of yourself for five years. My daughter is suffering gastroenteritis from her compulsive dieting, we would need a doctor who specializes in this nearby to help us out.