I Told You!

“I told you something was wrong”. Six simple words…straight forward words, yet very powerful. Those six simple words haunt me and send chills down my spine. Simply typing those words gave me chills. Those six simple words constantly interrupt my thoughts, and the sound of my voice whispering those words plays on a constant loop in my mind…like the words and rhythm to my favorite song. But, unlike the words and rhythm to my favorite song, each time those 6 words are replayed in my mind, I get a sick feeling in my stomach. Along with the sick feeling in my stomach, my heart begins to race and I am mentally taken back to the day just a few short weeks ago, that lead me to whisper those words.

Imagine yourself arriving to a party at your favorite spot. When you arrive, you notice that you are one guest among several hundred. Excited to be invited, and completely unconcerned about the size of the guest list, you can’t wait to make your rounds in the party. As you stroll through the crowd, you notice lots of familiar faces. You run into several high school friends, colleagues from work, family members, and a host of casual friends. In fact, you run into so many people, that you feel completely at home…almost like you’re at a family BBQ. Before too long, you’re on the dance floor dancing the night away. The music is bumping and the air is filled with laughter. As your body sways back and forth, you notice that the base from the music is pounding on the same rhythm as your heart beat.  

Suddenly, and without warning, your shirt bursts into flames. Immediately, you begin screaming in pain. As loud as you can, you shout “PLEASE HELP ME”! Through the flames that have completely engulfed your shirt and have now spread to your hair and pants, you notice that the people around you on the dance floor are still dancing. Horrified by the intense inferno that has now consumed most of your body, you scream in pain while patting yourself to try and put out the flames. Despite the scene you are creating, no one offers you assistance. Confused by everyone’s inaction, you start trying to convince yourself that everything happening is a dream. Aloud, you start repeating “this is not real, this is a terrible dream”. Before you can repeat yourself, the intense pain from the fire on your flesh quickly reminds you that what you are experiencing is in fact real. Desperately in need of help, you start running up to people yelling “PLEASE HELP ME. I AM ON FIRE. THIS HURTS SO BAD. PLEASE HELP ME!” For some reason, the people you approach for help quickly walk away as they see you approach them. One by one, the people you approach asking for help turn their backs and walk away without even acknowledging you. It is almost as if everyone is looking straight through you. In one final desperate attempt, you grab the arms of the next person you see and yell “PLEASE HELP! I AM ON FIRE AND I NEED HELP”! The person turns to you with a confused facial expression and asks “if you’re on fire and need help, why aren’t you rolling around on the floor”?  

This scenario seems almost impossible to imagine right? It is very difficult to imagine a situation in which people would ignore a person desperately in need of help, right? Well friends, I am here to tell you it happens…quite often actually. See, within the scenario I gave above, there was an important detail that was easy to miss. The asks for help were disregarded because they didn’t look like the asks for help that the people in the room with the ability to help were accustomed to seeing. BOOM! Mind blown yet? If not, it should be. Everyday someone chronically ill or in pain is ignored because they don’t look sick, are not acting in enough pain, or have conditions that lend themselves to addiction.   

Recently, I was reminded of regardless of my education, IQ, connections, or etc., on any given day I can EASILY be added to the number of chronically ill people ignored by the very people paid to help. As many of you know, I recently spent 6 days in the hospital due to a surprise Chron’s flare. While I have been hospitalized several times during my life, this hospitalization was one of the worst I’ve ever experienced. Friends, in the 35 years I have been on this earth, I have never felt as helpless, vulnerable, ignored, disrespected, disregarded, and invisible as I did during my recent hospitalization. Very few things in life are as frightening as being ignored when you are alone, in pain, vulnerable, and desperately in need of help. 

On the afternoon of October 3, 2015, I was sent over to the Emergency Room by my GI as a direct admit. After several hours of passing blood clots rectally, I had woken up from a nap completely unable to stand due to severe right side stomach pain. Concerned about an obstruction given my Crohn’s Disease, my GI told me he wanted to have me admitted into the hospital for a few days. As my GI requested, I packed my bags and immediately went to the Emergency Room. After a few minutes in a holding room, I was taken to my inpatient room. I was quickly given pain meds and told the house GI would see me in the morning.

The following morning, I was greeted by my GI’s fellow. I knew immediately we would have an issue. The GI fellow stormed into my room and without an introduction said “I see you were just here in August for the same issue. It’s my understanding that we couldn’t determine the source of the bleeding and everything checked out fine.” I quickly replied “actually no, that is not what happened.” Before I could continue speaking, he interrupted and said “listen, here is what I think happened. I think today you started bleeding again, and when you saw the blood, it triggered some anxiety. That anxiety then triggered fibromyalgia, and the fibromyalgia is the reason for your stomach pains.” Completely insulted by what was just said, I was speechless for the first time in 35 years. Completely dumbfounded and unable to speak, I allowed the nameless doctor to finish speaking. As the nameless doctor spoke, I took diligent notes on my iPad, to capture every word he uttered. He seemed concerned about my note taking and asked “what are you doing”? To which I replied, “taking detailed notes because no one will ever believe what just happened”. Completely oblivious to my response, the nameless doctor continued speaking. “So, I really think you are just fine and need to work on calming yourself.”

When it became clear that the nameless doctor was approaching the end of his thoughts about the reason for my hospitalization, I took a loud and deep sigh. As intended, the sigh signaled to the nameless doctor that I was done listening to him talk and made him immediately stop speaking. Once the room was completely silent, I said “Dr. Whatever Your Name Is, what you just said makes absolutely no sense. It doesn’t make sense clinically or practically.” He quickly replied “what, what do you mean?” I replied, “first of all, fibromyalgia has 18 pain points in the body that are used for clinical diagnosis, and NONE of them are in the abdomen. Also, I wasn’t aware that anxiety could trigger dagger like stabbing pains in the right side reminiscent of the pain one feels when their appendix ruptures. Please show me a case study, journal article or something that proves what you just described has ever occurred.” The nameless doctor was clearly caught off guard by my quick response, so I used his shock as an opportunity to continue. I said “listen, you have no idea the hell I have been though just to find the energy to come here. So, I will not use the little energy or patience I have left to lay here and be insulted by a doctor that clearly has not read my medical record and seems to think we are still stuck in the 1800s. This is not The Yellow Wall Paper Continued. So, please leave and bring back another doctor that will take the time necessary to actually find out what is wrong and come up with some solutions.” 

Visibly irritated by my words, but undeterred, the nameless doctor said “listen, the hospital wants to do a flexi-scope, but if I am going to waste time putting you to sleep, I want a full colonoscopy. So, either you agree to a full colonoscopy and the risk associated with the anesthesia,  and do all the prep that comes along with it, or you can go home on some pain meds and follow up with your own GI in a few weeks”. Before he could finish, I interrupted and said “what, wow, so this is a waste of time. Let me make sure I understand, you are telling me my only options right now are: 1. Agree to a full colonoscopy and do the prep which I feel you are suggesting as a scare tactic or attempting to use as a threat; or 2. Go home in the same condition I arrived in only with pain meds and follow up with my doctor in a few weeks”. The nameless doctor quickly interrupted “listen, I think you are fine just a little excited but if you like we can run some tests. But, I am not doing any test unless I can get a colonoscopy.” Friends, that last sentence sent me to my breaking point. I sat up in bed, looked the nameless doctor in the eyes and said “you listen to me right now. This is not the ‘you show’. You do not just order me to do what you want as a way to scare me into conformity. Maybe you forgot how this works so allow me to remind you. This is my body. MINE. You will not tell me what you will and will not do. You also won’t scare me into conformity. If a colonoscpy is medically necessary, fine I will agree to it. But, I will not have it used to scare me against staying and pushing you to find out what is wrong with me. As my doctor, you make recommendations and we reach a solution as a team. But, clearly you don’t understand your role on this team. So, I will gladly relieve you of it. Discharge me immediately or send me to another hospital because you and I are done. I am telling you something is wrong and I will NOT be ignored. I will not sit here and wait to get sicker and then you have my blood on your hand. NO THANKS! Draw up the paperwork right now to send me to another hospital or home, but you and I are done. The next time I see you it needs to be regarding my discharge paperwork”.    

My words and the venom behind them must’ve hit the doctor like a lightening bolt. He turned pale and abruptly left the room. Within an hour, he returned with 2 doctors and a nurse practitioner in tow. As they entered the room, I sharply said “I made my ask known to Dr. No Name. Since this hospital is clearly incapable of listening and treating me, I want to be transferred to another hospital. If it is your position that you cannot do that, I need that in writing and I want to be discharged so I can take myself somewhere else”. One of the doctors quickly said “no, no. Now that is not necessary. The nurse practitioner said she is very familiar with you and for you to be complaining something has to be wrong. So, we are here to show you that we are committed to finding out what is wrong.” I quickly replied, “I appreciate that, but Dr. No Name is no longer able to participate in my care. He can sit in the room for the sake of learning, but he and I are done as patient/doctor. Do you all understand me? Also, the nurse practitioner is right, something IS wrong. I am in extreme pain and bleeding, there is something wrong”. 

After a lengthy discussion, I agreed to a colonoscopy and biopsy with a second test if the colposcopy did not help determine the reason for my bleeding and pain. Friends, before making it out of the operating room after the colonoscopy, I was awakened by the nurse practitioner as she said “honey, you were right. The exact location you told us hurt is the exact location where we found a bleeding ulcer…your cecum”. As she finished her sentence, I used my remaining energy to mumble “I told you something was wrong”. The nurse practitioner quietly replied “you did honey, you did and we should’ve listened”. The nameless doctor stood silently next to the nurse practitioner and stared at the floor. 

Friends, what I experienced during my recent hospitalization is not something I would wish on my worst enemy. I was at the mercy of a doctor that refused to see past his on bias…almost to my detriment. The biopsy results a few days later showed ischemic colitis, in addition to my Crohn’s, which is very serious. I shudder thinking about what could’ve happened if I was not as persistent as I was…but also what has happened to others that were not as persistent. It is horrible and frightening to desperately need help but be ignored by the very people with the expertise to help. What’s worse, is to also be insulted, demeaned, and disrespected…for simply needing help. I share my experience to show people that the issue of chronically ill patients being ignored and ridiculed is VERY real. I also share my experience to say that I will NEVER stop speaking up for myself and others. I notified the CNO of the hospital about my experience and requested a meeting with the hospital administrators. The way I was treated cannot be undone, but I can help to ensure no one else is subjected to the horror I endured.


36 thoughts on “I Told You!

  1. Oh… This is SO DAMN COMMON for women patients and anyone else who
    Is somehow “the other” to docs!

    My late aunt, and amazing woman who, born in 1920, was a doctor. She always had the same answer to the question, open “what is the best advice you were ever given about being a doctor?”

    She said, “I had a professor in med school who was considered old-fashioned and a bit of a fuddy-duddy. But I’m so glad I listened to him when he told us, ‘if the book doesn’t agree with what the patient is telling you, close the book and listen to the patient!”

    My aunt was in medical school in the 1940s. Isn’t it outrageous that so many doctors STILL haven’t learned this central piece of medical wisdom?

    Liked by 1 person

  2. good for you….its sad we have to be our own advocate to the point where we get hoarse from talking…..I am so glad that you were persistant…my sister has colitis flare ups and she is in so much pain…..I feel your frustration and know your pain…..new doctor maybe….just a thought…kat

    Liked by 1 person

      1. COMPLETELY agree! I normally interview all my doctors but this one was a special case. My doctor stopped seeing patients and recommended a particular doctor for all patients. Files were transferred unless you objected…I didn’t and decided to just go with the recommendation. Well, glad I tried being open minded…but it won’t happen again!

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    1. I agree COMPLETELY! I twas disgusted, angry, but also VERY concerned. Despite being very sick, I was still able to advocate for myself. I also had my mother join me at the hospital and she is me on steroids and 20 times more pissed off. She definitely picked up where I had to drop the ball out of complete exhaustion.

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  3. Holy shit. And I mean that literally.

    This is a doctor who should stick to research. ANIMAL RESEARCH.

    In 40 years of treatment for colitis-that-was-really-Crohn’s, I have never had such treatments. I have had doctors say that they couldn’t find the source of my pain. That they didn’t understand why things popped up and then disappeared. That they were stymied. But never did they fail to take my feelings into consideration.

    When I was first having problems in the early 1970s, the theory behind colitis (which they thought I had) was that it was produced by stress. PERIOD. There really wasn’t any physiological reason for the problems. I was just young and hysterical (I wasn’t). Still, despite that belief, they treated me with respect. I am appalled.

    The stress-symptom correlation is something that still upsets me to this day. My late sister, a nurse who was trained during this time period, always thought that I had had a nervous breakdown out of my butt. (I’m still pissed about it, Beth. )

    Liked by 1 person

    1. Oh, the post I gave was only the beginning of what I endured. My stay consisted of 6 days of complete foolishness! I have NEVER been so insulted in my life. My favorite question from my hospital stay is “are you sure you are bleeding from your rectum and not your vagina”. I’ll just say once I answered the question, the conversation was over. My response was as ridiculous as the question. What 35 year old woman, with 2 children, cannot distinguish between her butt and vagina?? Really?

      Liked by 1 person

      1. Ummmmm, actually, with my fistulas which bleed frequently, I never have any clue where it’s coming from. But I KNOW I don’t KNOW — and I say so. Your case is different.

        And as any gastroenterologist should know, EVERY FUCKING CASE IS DIFFERENT.

        Oy vey.

        One of the many scary things about being sick is that you still have to be your own advocate. Always. And when you feel like shit it is really hard to explain, well, the shit that’s happening (figuratively and literally)

        This incident makes me so very mad.

        Professionally, I work in medical litigation (drug regulatory work — not suing folks). I think you might want to place a call to the hospital’s legal department. Or at least to the head of gastroenterology (I can’t recall if this joker IS the head and I’m answering in the bubble).

        Liked by 1 person

      2. GOD I am so happy to have someone as pissed as I am! This situation STILL has me on fire! I talked to a few executives at the hospital…and know the lawyer so I may actually reach out to her. I can definitely say I am not letting this fall off the radar. They need to implement some type of training. I also like your suggestion about the head of the GI department. I was so annoyed with the GI Fellow that I didn’t consider that…GOOD CALL OUT! Adding that to my to do list tonight. THIS is what I love about blogging…ideas and recommendations from others.

        Liked by 1 person

    1. Thank you SOOO VERY MUCH!!! Honestly, I try to be as true to the thing I am writing about as possible. So, even if it is not grammatically correct, I write it just like I said it. When I started this blog, I committed to not holding back. Thank you SO much for your continued support!

      Liked by 1 person

      1. Hell I was a half mile from home and was on my bike, almost hit by a car and dumped to the right and hit my head and ripped my knee. I was bleeding all over. The emts wrapped me and I was in an ER triage for 3 hours wo my vitals even taken. So I signed out.

        Liked by 1 person

      2. WOW! I am always happy to hear I am not alone…but more disturbed to know I am not alone. I just worry about the people that are not as pushy as I can be. Who fights for them? This situation has forever changed me…I thought I had a fire inside of me for patient advocacy…now this thing is an inferno! What I was subjected to was just outright ridiculous and cruel.

        Liked by 2 people

      3. There’s an old Patrick Swayze movie called Road House, I think this is the right one, he walks around with his medical records to show doctors. I do almost the same with doctors and techs. I did this, tried that, had this happen before, this worked, that didn’t etc. They try to talk over me and I say this is what the concern is (fill in the blank) and address that.

        Liked by 1 person

      4. Yep, I definitely had to find my inner jack a#$. I guess when in Rome….But, constantly arguing and pushing them to act was very exhausting. I left the hospital after 6 days feeling as if I had been off to war or something. Honestly, when the results came back I was relieved they found something to stuff it in their faces…but also devastated because again, there are other people out there like me that were ignored and who knows what became of them. I can handle myself pretty good…but I worry about others.

        Liked by 1 person

      5. I have had doctors foolishly prescribe me medications that I did not need and they were advised of what medications I was taking and had horrible interactions and then insane withdrawal from them. This one DR I went to sue as it literally took me a year to get back on my feet but he was sued various times in that timespan and went out of business.

        Liked by 1 person

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