Wednesday, November 30, 2011

Great pain and expectations

Being involved in the Twitter community and following numerous others with Crohn's and like belly troubles I have realized I am not alone when it comes to pain and the great expectations that goes along with having a chronic illness.
I have pain every day.  My body hurts.  My joints hurt. My belly hurts.  My nether regions hurt from going to the bathroom ALL the time.  Every now and then I am lucky enough to get my hands on some pain medication which, more often than not, doesn't really do much to relieve the pain anyway.  So sometimes I, like others with Crohn's, have to go to the ER to get some heavy duty drugs to get a little relief.  This isn't usually met with kindness from the ER staff though.  I know I personally have been labeled as "narcotic seeking" for an occurrence when my very own Dr. GI sent me there for pain management.  Since three of the four major hospitals share electronic records in my area I am pretty screwed out of going to the ER for pain management now.  I am usually immediately told there is nothing they can do for me.  And if they are feeling generous they may slip me a Vicodin or two before sending me on my way.

But this isn't only my problem.  It is a problem that I have seen all across the board when it comes to people dealing with painful conditions.  And I have also noticed that healthy people just expect us (the chronically ill) to live with it.  As if it is a normal thing we are supposed to get used to it so it shouldn't bother us.  Most days I can just work around my discomfort and restroom needs.  But there are days I can't and when I have those days I get very little sympathy from anyone.  However, when a healthy person has diarrhea or some kind of stomach upset for a day the world stops.  They can't work.  They can't leave the house. They can rush to the ER and get treated with every drug known to man and probably even get signed up for experimental treatments. (note the sarcasm)  But when I go it's "Oh you have Crohn's, Fibromyalgia, Depression, etc.... you should be used to this.  Why is today different?" 

When did it become normal to poop 10 or more times a day?  When did it become okay for a body to be in pain every day when you are only in your 30's?  Why is it unacceptable when I ask for help - albeit pain medication, or just a day to rest?  Why can't the doctors and nurses have a little compassion for those of us who have to live like this because we don't have a choice in the matter.  It isn't like we want to be in pain.  Yes, I am tough enough to not make it a big deal the majority of the time but some days I would like to be in a drug induced state of comfort so I can feel half way normal and regroup my energy to sustain the next bout of badness that will happen to my body.  Is that really too much to ask?


BrightSide said...

This is a big fear of mine. Reaching a point one day where I'm essentially told, this is as good as it gets and we can't do any more for you. Here in Canada it is a bit better because healthcare is paid by the government and there is less... well... stingy-ness going around and I don't have to pay anything out of pocket. Thank god.

Can you ask your doctor to give you a prescription for something that you can keep in the house for those days you need it? Or what about the doctor contacting the hospital for you to clarify that you are not just 'narcotic seeking'? A good word from your GI plus the fact that you aren't knocking on the ER drug door every day should tell them you aren't an addict.

Ragamuffin said...

see, as a neurobiologist, the word "fibromyalgia", to me screams opiate-demanding-pain. in conjunction with crohn's it just seems ludicrous that doctors would give you any grief about pain meds.

i had that awkward talk with an ER doc that last time i was there about how i don't respond to vicodin and my GI prescribes me percocet. i got the "oh really" look followed by raised eyebrow, etc. the neurobiologist in me screamed some swear words that roughly translate as "shame on you".

Jenni said...

I actually have an appointment with my Rheumatologist (sp? I canNOT spell that word!) and hopefully will get a little relief for the body pain. We'll see. Thanks for your support ladies! :)

Belinda said...

I can totally relate with your comment about healthy people not understanding and some how expect you to cope even though they'll be down & out in bed with a small bug. I have found out who my real friends are through the disease...
For some reason Crohn's are still kind of rare here in South Africa so alot of nurses haven't met anybody with Crohn's and will sometimes ask me a whole lot of questions.
Good luck with your pain challenges! hope you find a solution!