two people screaming

Sounding Like a Babbling Idiot

I had to go to the dreaded ER a few weeks ago. As most of you know, the emergency room is a definite last resort for so many reasons. You can read more of why I believe the emergency room is so awful for IBD patients here.

Do you ever find that when you are in a vulnerable situation, your thoughts tend to be all over the place?

For me, when I am in pain, throwing up, sweating on and off, and just don’t know what is going on with my body… I have a difficult time explaining to the physician caring for me what is going on.

It is one thing when you are with a doctor who has known you for a while and understands your medical history. That doctor who has been in your life for a decent amount of time is obviously more willing to trust that you do know your body best given all you’ve had to endure than a random ER physician. The complexity of inflammatory bowel disease (IBD) is so great that I find many emergency room doctors, or even GI residents or attendings in the hospital, have a hard time understanding certain things.

For example, I have a very high pain tolerance, like so many of us, because of all I have been through with my IBD (Crohn’s disease and ulcerative colitis). So when triage nurses and doctors ask you to rate your pain level on a scale of 1-10, my immediate reaction in my head is to compare it to all of the other horrific things I have been through. I know so many of you reading this have been through the mill too with your disease. This is why I always say ten. If I am in THAT much pain that I am in the emergency room (which I go to kicking and screaming), then I am at a ten. Just because the pain was greater when I would wake up from my open abdominal surgeries doesn’t mean anything in this case. Most people don’t have that level of pain to compare it to when being asked to measure pain level so I guess that is my way of making it known that the pain is truly severe. Does anyone else do that?

I know a lot of the lack of understanding  is my fault because I tend to sound like a babbling idiot when I am in a dire situation and am being asked to explain what is going on.

There is so much to my story that my mind kind of goes in circles.

I need to be in a somewhat stable place before I can intelligently and coherently talk to a medical professional. This is just one of the many reasons why I am so grateful and say “thank you” every five minutes to my boyfriend or parents when they are there for me.

I know a lot of people aren’t fortunate to have someone close to them who can really help take some of the load off of your shoulders. For example, the driving to the hospital and communicating what is going on. My heart goes out to all of you who have to go through life with inflammatory bowel disease alone. I have said it before in other articles and I will say it again… YOU ALL ARE MY TRUE HEROES!

Anyway, I also have a very high drug tolerance, which I know is the case for a lot of you reading this. The combination of me not absorbing medications properly with the fact that I have had so many surgeries, procedures and situations that require pain medication has made it so it takes a higher dose to get me to a manageable state. Granted, getting medication through an intravenous line (IV) is definitely different than taking an oral medication.

Most people who suffer from a form of inflammatory bowel disease (IBD) understand the importance of a doctor trusting you.

I am always petrified that the physician who is assigned to me won’t believe me or just wants to err on the side of caution when prescribing something to me. Pain medication is under such restrictions that I do understand doctors wanting to protect themselves.

However, it still puts people like us at a disadvantage when we need proper care and relief.

The last time I was in the ER, my boyfriend came with me and it was a Godsend to have him by my side. He not only provided a level of comfort and feeling like I wasn’t alone and that everything would be okay but he was also able to advocate for me. He was able to fill in the blanks if I was in too much pain, throwing up or too all over the place with my thoughts which helped the people caring for me understand a little more.

My body certainly isn’t a stranger to opiates, unfortunately. I have been on and off of them for years following procedures, surgeries, abscesses and fistulas, etc. Not to mention, I have also lived with chronic migraines since the age of 16. There has been so much trial and error with medications, dosages, etc over the years that I feel like I could prescribe for myself, if that was allowed. This leads into another example of how helpful I find having another person there with me is. Things come off differently when a “caregiver” is requesting something as opposed to the patient. At least in my mind.

For example, I need 1mg of dilaudid for that medication to help at all. Ideally, 2mg in a push (not a drip which goes into your system slower and is usually mixed with saline) is what I need but given that is testing the waters a little too much, I can handle 1mg with the hope that if needed, the ER physician would allow for another dose to be administered later on.

I almost always am given .5mg of that medication, unless I run into a physician who has treated me before. I have never run into a problem getting another .5mg but it would need to be about three hours later. So at the end of the day, my body ends up getting either the same dose or more of what I really need - it is just spread out more which isn’t as effective in the least bit.

The last time I ran into this situation, having my boyfriend explain to the doctor about my absorption issues and even relay it back to how stunned he was when he initially started witnessing things with his own eyes (as opposed to me just telling him) in order to make it known that we understand the doctor’s side of only wanting to give me the smaller dose.

Bottom line: I tend to get what I really need more often with a caregiver than if I am alone.

It is important to be able to explain to any medical professional caring for you not only what is going on but at least some of your medical history. I understand all too well how difficult it is to go through it all with someone new, especially because you need to explain it to the triage nurse, your nurse, the doctor, and anyone else who might come in. It is easy to leave important things out or come off a bit unreliable because it is hard to remember the order certain things have occurred in. Hence, me thinking I sound like a babbling idiot often. ; )

Can you relate at all? If you are fortunate to have someone with you during a stressful time, do you feel as though they provide more than just emotional support for you? Have your experiences been that medical professionals tend to listen to you more if what you are telling them is validated by another individual?  Am I the only one who feels like I babble while in a vulnerable state? Sharing helps others know they are not alone so if you are up for it, please comment below.

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