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Crohn's Disease Forum » General IBD Discussion » Crohn's Polls » Have you ever used this term?


10-28-2015, 12:46 AM   #1
rowdyirish1
 
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Have you ever used this term?

I keep catching myself saying that I feel like I'm dying when I'm asked how I'm feeling. Now I don't say this every time someone asks but I am saying it more and more. Here is my question... Have you ever used the term "I feel like I'm dying" or any variation at some point between now and when you first started to get sick. Im just wondering if the doctors downplay how sick we really are!!
10-28-2015, 09:10 AM   #2
Cat-a-Tonic
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I'm sure the doctors (not to mention everyone else) do downplay how ill we are - that's one of the unfortunate things about having an invisible illness, is that we don't look sick (or we don't look as sick as we feel, like sometimes I'm pretty pale but that's just the tip of the iceberg in terms of how crummy I'm actually feeling).

My issue lately is that I keep passing blood in my stool which has thrown my bloodwork out of whack and I need to have iron infusions and the fatigue has been just horrendous lately. It is terrifying to see large amounts of blood in the toilet when I know I already need every drop of blood that I have, it's crushing to lose more on top of what I've already lost. I don't feel like I'm dying per se, but I'm just sort of existing right now, surviving I guess would be the word for it. Somewhere in between fully living and actively dying, just sort of holding on.
10-28-2015, 11:20 AM   #3
rowdyirish1
 
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I'm sure the doctors (not to mention everyone else) do downplay how ill we are - that's one of the unfortunate things about having an invisible illness, is that we don't look sick (or we don't look as sick as we feel, like sometimes I'm pretty pale but that's just the tip of the iceberg in terms of how crummy I'm actually feeling).

My issue lately is that I keep passing blood in my stool which has thrown my bloodwork out of whack and I need to have iron infusions and the fatigue has been just horrendous lately. It is terrifying to see large amounts of blood in the toilet when I know I already need every drop of blood that I have, it's crushing to lose more on top of what I've already lost. I don't feel like I'm dying per se, but I'm just sort of existing right now, surviving I guess would be the word for it. Somewhere in between fully living and actively dying, just sort of holding on.
Ya know.... The statement you made about having an invisible illness couldn't be more true. I'm sorry that you're having to deal with that, it sounds horrible and I hope you get some resolve soon. I just had my first iron infusion yesterday so right now I'm hopeful and optimistic. I can deal with the pain and nausea to a point but when I get really fatigued I honestly feel like I'm dying. I know that sounds overly dramatic but It is the one part of this disease that I don't do well with....
10-28-2015, 11:52 AM   #4
DEmberton
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Only as a joke if I have a cold.

I worry that I downplay my symptoms when I see doctors, not the other way around.
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10-29-2015, 05:32 AM   #5
Axelfl3333
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I,ve never used that even when my insides were like an open pipe,whatever went in just fell out the bottom,bad picture ,sorry.i quite naturally had the blues for a while but it's got better.i think crohns is a hidden disease and because it involves personal hygiene and the toilet it's very difficult to talk about and isn't,t very well known.its a difficult condition that can vary hugely and has a big impact on your life.
10-29-2015, 03:46 PM   #6
rowdyirish1
 
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I probably should have mentioned that I have both CD and Ankylosing Spondylitis. So,when I have used the term "I feel like I'm dying" it's due to extreme widespread pain, horrible fatigue and unrelenting nausea! May not be the right forum for such a question!
10-29-2015, 06:33 PM   #7
teeny5
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I am much more prone to down play how I am feeling as well.
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10-30-2015, 08:01 PM   #8
Axelfl3333
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Sorry I didn,t know you were American when I replied it's not a phrase used much in the uk when it gets frustrating,painful or damned annoying.i forgot my very ex-American girl friend used that one.we tend get a bit more foul mouthed.hope your feeling better soon.
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