How to Talk to your Doctor about Digestive Issues

I’ve had a lot of people come up to me and ask how to bring up digestive symptoms with their doctor. It’s easy to have problems dismissed when talking to doctors, especially for those people who are perceived as being female or are female presenting.

I don’t have all the answers. I still have trouble getting taken seriously by some doctors, despite everything that is on record as being wrong with me physically. I do have some suggestions, that I have learned from my own experiences.

Please note, I will make mention of bowel movements and bodily fluids, so please keep that in mind while reading.

  1. Keep track of your symptoms

Questions you are likely to be asked regarding pain:

What type of pain? Where is it? Does it get worse after eating? How long does it last?

Questions you are likely to be asked regarding blood or stool:

What is the consistency (Bristol Stool Chart)? How much blood? Was it dark red? Clotted? Pink and watery? Does your stool contain what looks like coffee grinds?

By having answers ready for these questions, you can move the process along more quickly since the doctors will have a better idea of what they are looking for.

Continue reading “How to Talk to your Doctor about Digestive Issues”

How to Talk to your Doctor about Digestive Issues
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I almost died last week.

CN: Descriptions of withdrawal, hospital admission, medical symptoms and needles.

It wasn’t an accident, or even a sudden onset of something like appendicitis. No, my brush with death came about as a result of fear. Specifically, other people’s fear. Fear of addiction, fear of being wrong, and fear of being fooled.

You see, the week before I was admitted with Crohn’s. I went to an appointment with my Gastroenterologist and he sent me straight to the ER. I was admitted, and put on high doses of Dilaudid, after the usual adjusting games where they started me on 1mg every 6 hours, before finally conceding that 2 mg every 4 was what was needed. In addition to that, I had Gravol and Benadryl to control the various side effects of the opiate.

I spent the week essentially zonked out after several weeks of increasing pain and nausea, and a trip to the ER every 2 weeks since Christmas. My admission came on the heels of two weeks of being sick with a sore throat, which kept me not just from being able to take my Remicade, but my medical marijuana as well. My throat hurt too much to handle the irritation from the smoke.

My crohn’s had gone into overdrive. I wasn’t digesting, I was in pain, and I needed help.

The reason the doctors agreed to finally treat my pain properly is that I told them, that once I got home I wouldn’t be taking dilaudid anymore.

Not one doctor stopped thinking about their fear of addiction long enough to hear what I was saying and remember their training. Continue reading “I almost died last week.”

I almost died last week.

Pain is my Reality

I think what people fail to comprehend is that I exist in a state of constant pain. I literally cannot remember what it feels like to not be in pain, assuming such a moment ever existed for me. I even experience pain in my dreams.

When I say that I am doing well, or that I am feeling good, what I mean is: my symptoms are currently in a consistent enough state to not register as especially noticeable.

I think an inability to understand that is part of the massive divide between medicine and patients. If a doctor doesn’t understand that this is what I mean when I say I am feeling ok, then how can I explain anything else? When I’m dancing and singing, and laughing, and loving, and teasing, I am doing all that while also being in pain.

The realities of someone who lives with a chronic illness, where pain can just as easily be replaced with nausea or some other symptom, is impossible to conceptualize for someone who hasn’t experienced it themselves. It’s antithetical to the way humans comprehend our reality. We can’t grasp of infinity so trying to comprehend constant unending pain, it’s impossible.

When people try they immediately get overwhelmed with the futility of it all and feel despair. So the assumption is that our lives must therefore always be despair and if they’re not, then we’re lying, but if they are, why don’t we just end it all?

When I say that I have to embrace the reality that I might never get better and see a cure, I’m not being negative. Accepting that reality lets me survive because otherwise, it would be overwhelming despair. It’s not a personal failing, it’s not that I haven’t tried hard enough to get better. This is just my reality.

I understand that for you, that sounds like giving up, but accepting that limitation has been the biggest step in being able to move past. Accepting that this is my reality makes it possible for me to make the decision to self-care. It makes it possible for me to accept that my illness, my existence, is not a personal failing. It is just the way things are.

Sometimes hope kills.

I don’t have the time or energy to spend hoping that I will get better someday. Energy spent hoping of a someday is energy that could be used to improve my circumstances as they are rather than how I want them to be.

It means accepting that “toughing it out” is a waste of energy that could be better spent medicated and doing something I enjoy.

Pain is my Reality

Dear Doctor: A Response From A Patient

Dear Doctor:

Thank you for your letter. It is rare to hear a doctor acknowledge that our knowledge is valid and that we are not imagining how doctors treat us. Thank you for validating that experience. I appreciate your candor. But I still have a problem with your letter, and it’s this: it is still all about doctors and their ego.

I know my disease scares you, it scares me too. Actually it terrifies me.   Except at the end of the day, you get to stop thinking about it, usually shortly after I leave the office, whereas I am stuck living with the consequences of your fear.  Your fear, which has nothing to do with me. It’s not about being afraid of what I am going to have to deal with if you fail, it’s not about making me feel better. Your fear is about the fact that my disease makes you not feel infallible. It’s about your fear that I might not be as in awe of you as I would be if you could fix my problem quickly and easily. You are afraid that you will lose some of your power.

Yes, some of you might genuinely feel bad that you can’t help us, but for many of us, on this end of things, the truth feels closer to the idea that you don’t actually care about us at all.

One way or another, our disease scares you, but we are not our disease. We live with it, we fight it same as you. We are not supposed to be your opponent, we are supposed to be partners in this fight. You are supposed to be our support, and yet over and over again you let us down. I have multiple friends who have undiagnosed pain conditions. Some have received at least the comfort of doctors’ suspicions as to what might be wrong with them, while others have doctors categorically deny that anything is wrong. Some go years without any idea of what is wrong because doctors have neglected to tell them anything.  I have heard countless stories of patients who have been actively barred from getting answers all because of some doctor’s interference.

I myself have had doctors tell me that they were sending me home because they didn’t know what tests to run, on multiple occasions. I have had doctors disregard my pain as just something I should be used to by now. I have been denied treatment, all because doctors were afraid of my illness and couldn’t differentiate between it and me. Just because you cannot cure my illness, doesn’t mean you can’t help me. It means that the help you can give me is to try and make it easier for me to deal with this illness. It can mean taking away the excessive pain for at least a short time. It can mean shutting down symptoms by temporarily increasing treatment with steroids.

You say you fear my knowledge, when in fact my knowledge is your greatest asset. I know you can’t be an expert on everything. I can help educate you on my needs, if only you would listen. But you don’t fear my knowledge, you fear that my knowledge makes us equals. You fear that with my knowledge, it means I will know when you are wrong. Here is a secret: we can forgive you for not knowing or for making a mistake, but we cannot forgive you for choosing arrogance over help or for trying to pretend that you didn’t make a mistake. I will trust you and respect you more if you admit ignorance than if you pretend answers. Learn from my experience. Work with me! What would take you years to learn, months to research, I can tell you in a few minutes. But you have to trust me. You have to work with me, rather than putting yourself above me.

When I tell you my pain is different, that means something. After years of being in constant pain, I’m no shrinking violet that is too delicate to handle anything but the lightest of pressure. When I come in because of pain, when I come in because I don’t recognize the pain, that means something has changed. Yes, it might turn out to be just a new presentation of symptoms, but it can also mean something else. Don’t assume that just because I have this condition I am immune to everything else.

I had swine flu for a month before I was diagnosed, because a doctor refused to believe that I could tell when pain and nausea were different. How many people did I infect in that time, going to class? I have had pancreatitis multiple times, only to have had it dismissed as “just Crohn’s pain” until the tests came in with high lipase. I have had pain dismissed as “Just Crohn’s pain” as though Crohn’s pain on its own was not serious.

Doctors are so concerned with their own importance that they often seem to forget that their patients are human. Then they ask us to excuse them by claiming to be “only” human, when they fail to accord us the same decency. When they are reminded of their mortality rather than their godhood they elevate themselves by treating us as less than human so that they still maintain their upper hand.  And then when they are called out on it, they beg for forgiveness and blame the society that treats them as gods. Rather than taking responsibility for participating in this charade and allowing that to affect our quality of life, you ask us to participate by offering advice on deferring to your egos. Your very apology, your very secret, and your advice all spit in the face of our experiences by putting the burden on weak and exhausted bodies and minds rather than give up some measure of your privilege.

In short, I don’t have time to worry about whether or not I make you feel a little less like a god around me. I’m too busy trying to get through my day with my own body and mind kicking my ass the whole way.

Sincerely,

Patient Ania

Dear Doctor: A Response From A Patient

Sexual Assault By a Medical Provider Is Not a Big Deal… Until It Is

When I was 18, I was assaulted by a doctor at the university clinic.

 

I had gone in to get tested for bacterial vaginosis. I was in love and wanted to make sure that I didn’t smell strange if the chance to have sex ever came up. The first doctor at the clinic was very kind. She opted not to use a speculum since I was a virgin, just like every other doctor I had seen for a vaginal issue until that point. I got a call a few weeks later to come in to get my results. The doctor who saw me then was someone I had not seen before. Before she even got to the test results, she began laying into me about my weight. She told me I was morbidly obese, that diabetes must be causing the smell. I was maybe 40 lbs. heavier than my optimal weight for my height. I didn’t know what fat shaming was then, but I tried standing up for myself, letting her know that my cholesterol, blood pressure, and blood sugar levels were all perfect.

The facts didn’t matter to her. She had decided that I didn’t meet her standards of fitness and that the best way to deal with it was to make me feel horrible about myself. Finally, we got to the results: I did not have BV. She asked me why I had come in to check on it, and so I told her. Unexpectedly, she offered to take a look. I was shocked, but I accepted her offer. I was worried and she was a doctor. She had to be professional, right?

As I sat on the table, getting ready for the exam, I looked over at her and asked her not to use the speculum. I was a virgin, I told her, and the other doctor said it wasn’t necessary. Then, I lay down on the cold table. There is vulnerability in that statement. Everything about the doctor’s office is about power. You sit, while the doctor stands above you. You are naked, while they are dressed. You are in pain, afraid, vulnerable, and they hold the answers. Everything about the doctor-patient relationship reinforces that power dynamic. I was vulnerable on that table, exposing my private parts to a doctor who had already wounded me. She had already established her power over me, so I knew that my request was a supplication. It was her power to grant it.

But she didn’t.

 

As I lay there exposed on the cold table, worried about whether or not I was normal, the doctor violated my request. She shoved an unlubricated speculum inside me and opened it to its widest setting. I can’t even remember what came next. I do remember the pain. I don’t remember walking out of the clinic. I do remember trying to rush back to my dorm; I didn’t want to cry in public. I looked for the room of the person I trusted most on campus but he wasn’t home. In my search for him, I ended up in a room with some people I vaguely knew. I broke down crying. I told them what had happened. I was bleeding, I was sure of it. I felt torn. But I was crying about the fat shaming, had every instance of it having happened flying through my brain.

I was lucky in some ways. The people I barely knew, who comforted me as I cried, said all the right things. They told me what happened wasn’t my fault. That what she had done was wrong and that I was right to be upset. Not everyone is so lucky. But I didn’t want to listen. I wasn’t prepared to face that what happened to me was assault, so instead, I concentrated on the fat shaming. I convinced myself that the assault was no big deal.

Years later, when I lost my virginity, I postponed getting a pap smear for two years. Normally, you are expected and encouraged to get one within a year of becoming sexually active, but I didn’t want to be in that vulnerable position again. Moreover, I became more sensitive to fat shaming. I lost my temper more quickly whenever my weight was mentioned. It tinged all my interactions with doctors. If they brought up my weight, I found it more difficult to trust them or found myself reacting negatively to the rest of the appointment. Every time a doctor failed to listen to me, it felt like another betrayal.

Everything came to a head when my GI made the decision to send me to the weight management clinic. The morning of the appointment, I woke up in a panic. My heart was beating like crazy. I was sweating. I couldn’t focus my mind. I found myself sitting in a corner, rocking back and forth and crying. I couldn’t understand why.

All I could think about was that doctor, her cold hands, the pain of the rough plastic edges as the speculum entered me, the stretching-tearing feeling of it being opened. I couldn’t get the feeling of betrayal, of being violated, out of my mind. Superimposed over those feelings was every instance when a doctor refused to listen to me, all the times when I’d had to be vulnerable with a doctor and had that vulnerability rewarded with pain and betrayal.

When I realized what was going on — a panic attack — I took some anxiety medication and tried to calm myself down. I spent my day curled around myself, trying to hold myself together, as I watched the clock tick down to my appointment. I was terrified. I didn’t know what would happen when I went into the clinic.

Throughout my struggle, I realized that what I had thought was no big deal had actually been affecting my interaction with doctors for years. Suddenly, I was facing the truth: What had happened to me was a big fucking deal. I had been assaulted. By a doctor. By a member of society that I was supposed to be able to trust implicitly. By a person that everyone expected me to trust. Not only had my body been violated, so had my ability to trust that doctors had my best interest at heart. What’s more, the violation brought on the realization that I was very much a member of a vulnerable population: people with disabilities are among some of the most at risk for sexual assault.

Sexual assault is about power. It is about the perpetrator feeling like they have power over the victim. It is not about sex. The inclusion of my genitals in this assault was incidental. The doctor in question wasn’t trying to get any kind of sexual thrill or fulfill a sexual desire. Who I was didn’t matter. She just needed to assert her own power over someone else, and I was the lucky victim.

If you asked her, she probably would have no idea that what she did to me was assault. She might make excuses about how she thought that the use of a speculum was necessary. She might say that she is a doctor and I am not, and that she knew better than I did. It doesn’t matter what she would say. The simple truth is that I made my boundaries clear and she violated them. The fact that she did so without even the courtesy of using lubrication (standard in those types of medical procedures) is just icing on the cake. To her, it didn’t matter if I felt pain. I wasn’t a human being in that moment. I was at her mercy. She was the one in charge and she could do whatever she wanted to me without fear of consequences. To her, what I wanted didn’t matter. And that is what makes it assault.

Assaults by doctors, unless sensationalized and existing on a large scale, rarely get talked about — and are sometimes even trivialized. We as a society put great faith in doctors. We don’t want to face that the people responsible for our health and well-being might be as human as the rest of us. We don’t want to address the fact that power dynamics that are enforced as severely as those between patients and doctors puts everyone at risk of abuse. We especially don’t want to talk about doctor abuse, because in doing so, we risk being lumped in with conspiracy theorists that take things too far and condemn the medical profession altogether. As an advocate of evidence-based medicine, it’s difficult to draw attention to abuses perpetuated by doctors and still defend medicine as a profession.

And yet, drawing attention to this abuse is very important. When someone is hurt so personally by a doctor, it can be easy to lose faith in the entire industry. Being violated by a doctor does more than affect you psychologically, it can also put your health at risk. It can make you afraid to be vulnerable with doctors again. It might mean that you try to protect yourself by keeping things to yourself that the doctor should know about. But more importantly, talking about doctor abuse is essential to help victims know that they didn’t do anything wrong and that they are not alone.

Whenever I discuss what happened to me, someone always feels the need to mention that the doctor might not have been thinking about consent but might have simply decided that using a speculum was necessary. Who was I, as an untrained patient, to decide what equipment the doctor needed or didn’t need, they ask? I have questions of my own. If doctors know better, does that mean they have the right to ignore the boundaries I set for myself? Does that mean that I have no say in what happens to my body? And if so, is my body really mine? What about your body? And where do we draw the line?

Sexual Assault By a Medical Provider Is Not a Big Deal… Until It Is