“Don’t talk about your pain”

The paper crinkles under my hips and I tell myself for the twentieth time that this doctor’s visit will be different. I’ve finally found a female gastroenterologist in my area who is accepting new patients and I’m prepared to talk to someone who will finally empathize with how hard it is to get out of bed and put one foot in front of the other for my family, my friends, and my employers. Not while daily pain claws at my ankles, pulling itself up the calves of my shaking legs, wrapping around my abdomen, ripping and grasping and burning, trying to pull me down once and for all.

I imagine she will look at me with sympathy in her eyes and shake her head with disgust when I tell her how my male doctor told me that I couldn’t take over-the-counter or prescription NSAIDs like Motrin because it would make my Crohn’s disease worse. That he recommends Tylenol and “toughing it out”–a prescription that I wish I could forget.

Three years into my disease, I’ve learned that because I’m chronically ill, I can’t take narcotics for my pain because I could become addicted. It still doesn’t make sense to me, though, that those who need narcotics the most are the ones who are often not prescribed them because their pain has no potential end date. I know, now, that I would have better luck treating my pain if I had a broken arm and not a broken immune system.

The door cracks open and she enters in a cloud of coffee and sweat. Her dark hair is a nest around her face and she has huge wet stains under the armpits of her sweater which I note as odd because it’s 8 a.m. and it’s not the middle of summer. I wonder if she went to the gym in her work clothes, but I don’t care because she can smell as much as she wants to. I’m just happy that I have a chance to talk to her.

She slaps down what looks like three hundred freshly printed pages held together by a large black binder clip. My heart sinks when I see that the printed pieces of paper that hold every minute detail of the past three years of my life are untouched–not one piece of paper ruffled by a curious reader. I try to remain open and confident but I can feel myself shrinking away from another uninterested doctor.

She flips through the pages like a child does through a notepad they used to draw and animate a bouncing ball. She asks me a few questions and I answer them honestly, hoping that she will be “the one”. I try to explain what I’ve been through and what I’m facing–possible surgery–and why I want to try something else first. Does she have any suggestions? She shakes her head and points to the stack of papers she didn’t read. “I wouldn’t do anything differently,” she says. “It looks like he covered everything.” “He” apparently refers to both of the gastroenterologists I’ve seen since I’ve been diagnosed with Crohn’s disease, but she wouldn’t know that because she didn’t read my file.

I’m still desperate to try and make a connection–to tell her how my once fairly effortless life has slid into a nightmare of pain. Maybe if I describe it, she will understand what I’m facing and agree to move me off of Remicade and onto something new. I want to try Humira, but my current doctor doesn’t think I should change biologics.

“I’m still in a lot of pain,” I say, “even on Remicade. I don’t think I’m in remission, but my doctor says I am even though my joints are inflamed and I can’t leave the restroom. Each time I go is agonizing–the only thing that helps relieve the pain is vicodin.”

Her back stiffens and she won’t look at me. “Don’t say that,” she says, quietly.

I’m confused. “Don’t say what?”

She looks at me and will only make eye contact for a few seconds. “Don’t say that vicodin is the only thing that helps. You’ll be labeled a drug seeker.” When she turns away again I realize what’s happened–that she’s already labeled me. “I can give you Zofran for your nausea.” I nod, not because I want Zofran, but because I want to leave. I feel dirty and judged and I can’t believe I opened myself up to this treatment–that I allowed myself to once again hope.

I flinch when she finally examines me and rush out of the office with a prescription for Zofran in my hands. As I pull out of my parking space, I can’t stop the tears. My pain is still with me.

Christina and Mittens

Christina and Mittens

26 thoughts on ““Don’t talk about your pain”

  1. I am so sorry you are in so much pain and struggling to find a doctor who understands. I was there, in a similar spot a few years ago. Assacol was doing a good job with my gut, it was just everything else in my body that hurt. Every doctor I went to kept trying to come up with a cause for my pain and kept pushing different drugs and diagnosis at me. No on could see that it was my Colitis that was causing me such agonizing pain in every inch of my body, I felt like I was 150 years old. Some three years later, I went back to my gastro and he said lets try Sulfasalazine, it works better for inflammation than Assacol. I was scared to go off a drug that had kept my Colitis under control, but I could not live with the pain. After just two weeks on Sulfasalazine I was beginning to feel like myself again. I guess my point is to hang in there, I’m not suggesting what worked for me will work for you, or that our situations are exactly the same, but just that I can relate at least a little. I hate this disease some days and it sucks, but hang in there. You are not alone and we all pull for each other.

  2. You are sharing the words that so many of us feel. I want to feel better. I don’t want to hurt. What kind of sicko would want this life I lead? I hate crohn’s and wish my doctors would live a day in my life and then we will talk about what can help.

  3. I had to change nurse practitioners, doctors, surgeons, hospital, ER… all due to them labeling me a drug seeker. I have a hernia now- told my NEW doc that how bad the pain was (oh- wait- normal people don’t walk around with a pain level of a 9?) and she prescribed Norco and Zofran, referred me to a new colo- rectal surgeon… with surgery scheduled for tomorrow (my old surgeon wouldn’t “touch it.”) I feel like a new person. Not someone who is shamed. Ridiculous.

  4. I’m so sorry that you were treated this way! It makes me so angry – we have to be our own advocates, even when we are weak and hurting. Please keep trying. You are paying these doctors. They work for you. Keep looking. It took me 2 years after becoming ill to find a doctor who knew what he was doing. That was 1994 and I’m still with him. Good luck to you!

  5. O.K. I have some opinions on pain control. First in Louisiana pain control is the law. This comment will be long because I’ve observed a lot because my son has a complicated health history and at one time they wanted to operate on my back. So I’ve seen the difference pain control can make. Christina if you think your alone your not. Once this was years ago Danny was in the hospital and he started crying. Danny only cries when something is wrong so I let the nurse know. What she did was bring him something that treated people with psychological disorders. I make it a habit to ask what he’s being given just to make sure he’s not receiving something he shouldn’t and also to make sure he gets what he is suppose to be getting. When I found out what she was giving him I reassured her Danny didn’t have psychological problems and that he was hurting. She left the room and when back to the nurses station- because it took her so long and he was crying I went to the door to see if she was heading back to the room instead I witnessed the dialogue between her and what I’m assuming was her supervisor. The discussion between the two was basically why are you getting him something else and she explained to her supervisor why she was getting him something for pain the supervisor not seeing me decided that I must be a ?!?! for requesting pain medication for him. There was more dialogue but suffice it to say he received his pain medication. Once he was in so much pain his pulse went up to 170 they made him wait four hours before addressing his pain. At the time I had not yet got a clear picture of how hospitals feel about pain control so I made them a graph to show him how his pulse increased so they would understand crying and an increase in pulse was probably pain related. They were not impressed. Later I wrote the hospital a letter and let them know everything they had done right but included how I felt about having to advocate for pain relief for my son while he was in a hospital. They wrote back and reassured me things had changed and showed me the chart they were currently using to monitor pain. At another hospital I saw nurses compare a young man who had just been in an automobile accident to an addict because he was in pain and needed something for it. I’ve seen a lot. Never feel like there is something wrong with you because your pain issues aren’t being addressed and never feel like your the only one being treated this way because your not. What you should do is see what the law is regarding pain control is in your state and then proceed from there. You should also try Coral Reef Calcium by Dr. Barefoot if you can take it it is excellent for pain. I know because when I took it at the time I was on Panlor. When my back was giving me a lot of trouble my doctors always listened to me and always treated my pain. I received the baptism of the Holy Spirit though in 1987 though so I think because of that I didn’t get addicted. The ignorance concerning treating of pain is really bad and even hospitals who know that untreated pain is not good for the body sometimes practice poor pain management. I thing the reasons for that are varied. I also hear what your saying about doctors not reading charts. I think the solution to that would be software that included a patients complete history that highlighted areas that were really crucial to their care. My opinion of you is that you are a very strong individual I hope you continue to be strong and that if you don’t take the coral reef calcium that you find a doctor that listens to what you have to say. I don’t understand the physiology of Crohn’s but from what I do understand it seems like untreated pain would result in pro-longed flare ups because pain is a stressor. What I recommend for people whose physicians are not listening is that they bring someone with them when they go to their doctors appointment. I will stop with this story. Once Daniel was in the hospital and I could hear the child across from his room crying. I could also hear the physician downplay what the mom had to say so later I had the chance to talk to her and suggested that when the doctor came back that someone else be in the room. Well she reassured me that someone would be and someone was and her babies pain issues were addressed. One more story once we were at a hospital and were put in a room that was not private the view was beautiful and the hospital was a very well known hospital. Anyway when the doctor came in and downplayed the moms concerns I knew that what she had told him was the truth because I had heard the baby cry all night. So I asked her what they were giving him and what type of procedure he had had. She let me know they were giving him Tylenol and that he had his heart operated on. Ouch a baby that had just had his heart operated was in pain and they were giving him tylenol. So I just encouraged her to have someone with her when the doctor returned and there was the babies’ Dad was there so the baby had his pain issues addressed and the mom and dad came and thanked me. It felt so good to have had made a difference. This is way too long for a comment but I hope it helps you.

    • Wow, Myrtle, you must have been so livid. I can’t believe they wouldn’t take Danny’s pain seriously. As a mom, I’m sure you were ready to kill. I can’t believe there was a day when they thought babies didn’t even experience pain. Tylenol is a placebo when you’re facing serious pain and I can’t believe that poor baby had to go through that. :(

      • I’m a very forgiving person the next day he turned really pale and started acting unusual and I called for help and the same two that were so rude the day before were right there for him. So I forgave them. The only time I get upset enough to make sure there was disciplinary action was once Danny had a UTI and they needed to do an ultrasound the nurse was a very big person and she got on the table with Danny and was holding his knees down he looked like a little frog. I explained to her patiently that she was hurting him and she continued to press his knees down I again explained to her that she was hurting him at this point she informs me that she is an R.N. and if “I” didn’t stop she was going to call security. Can you imagine? Long story short Danny has to be put to sleep to do the ultrasound so he has to have sedation because he was being put under the doctor explained to her not to start the procedure because a certain breathing device had to be there in case he stopped breathing. She completely ignored the doctor and in the doctor again gives the order and for the second time she chose to ignore him and instructed the other R.N. to administer the medication. I was like wow anyway she ended up listening but I was so upset I called and reported her and found out later that she know longer worked in the E.R. and was working in another part of the hospital. Had I been her boss she would have got her walking papers. She not only had zero compassion for what Danny was feeling but she chose not once but twice to ignore a direct order from a doctor. This is addressing your comment about how sometimes medical personal chose to not treat someones pain because they’ve seen so many people become addicted. This is how I feel about that: if you had a car and sent it to get fixed and the mechanic said sorry maam we know the engine is stressed because it’s lacking whatever and we want to fix it but we’ve heard that some people use to much of whatever so we will allow your engine to run while it is being compromised you would probably laugh at such a silly argument and go elsewhere and get your car fixed. You are in no way responsible for the decisions of others. The second reason I believe not adequately addressing pain has the opposite affect and probably results in more people becoming addicted is because the doctor/patient interaction is built on trust once you stop trusting someone you are more likely to engage in behaviors that are not productive. Had my doctor not addressed my back pain when I couldn’t even tie my shoe and my back was giving out on me I don’t know what I would have done. You have every right to have your pain issues addressed. You do know though how bad narcotics are for the body and really should try the Coral Reef Calcium. Whatever you do I hope you do something that is good for your body and good for you. My comments are way to long but I hope they help.

  6. I’ve been battling getting anything done since 2007. I get the “with the right treatment you won’t need pain management,” statement from every single doctor. They don’t seem to get that 07-13 is a lot of years to live in excruciating pain. They also don’t get that they haven’t “got” the right treatment yet. My heart is with you, I feel your pain.

    • What would be really hilarious is if when they made that silly declaration you responded with “Sure and as soon as you get the diagnosis right I’ll make sure you get paid.” They have absolutely no incentive to get it right whether they diagnosis you correctly or not I’m sure they get paid and they continue to thrive in their delusional state while you continue to suffer in yours. When and if you start to feel sorry for them you need to remember what they were getting away with at the Walter Reid hospital and get angry enough to start advocating seriously for yourself.

  7. Reading this just broke my heart and madero realize how lucky I am to have a fantastic gastro and practice to take care of me. Dhxme on that doctor for not listening to you. Thank you for putting your voice out there for all of us Crohnies to identify with and look to. That takes more guts than what most normal people have. Here’s to hoping you get the relief you’re looking for. :)

  8. I’m not sure if you have access to one, but I was referred to a pain clinic after one of my surgeries. It’s part of the hospital I had been going to for a while, but for some reason the docs didn’t bring it up right away. The team there understood my desire to balance pain relief with addiction risk, and they’ve been great.

  9. Wow. That sounds really tough and upsetting for you. My daughter has UC and is starting to show Crohns symptoms. Pain is has been such a tricky issue for her exactly as you describe so eventually I retrained in Hypnotherapy so that the work I do might be able to offer some relief to people where pain is not being adequately managed by medication (or the medical system). I’m starting to have some successes so helpfully will be able to bring help to some, alongside their meds.
    Wishing you all the best. Hang in there,someone will turn up for you eventually.

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