Peoples opinions??????????????????

[udontknow87]

Ok folks I've had a flare up for over a week my gastro isn't hearing me but besides that point does anybody get people saying to them I know someone who has crohns and they aren't in pain everyday? Or I looked it up it can't be that bad tour exaggerating.... I'm almost to my biuling point with ppl telling me u can't possibly feel that bad all the time. Does anyone else get these questionsm

 

[motheroftwins]

Hello, I haven't yet knocked on wood; however, if someone did tell me that and haven't walked in my shoes. I would think of them as ignorant and rude. I wouldn't hang out with those types of people. I am sorry you're going through this, and I hope you get the support deserve. :ghug:

 

[ForeverCrohns]

I always get these kinds of comments but I try not to be around people who try to make me feel bad ..

 

[udontknow87]

Am I just not handling this well enough? Ive heard oh well I know such and such amd they have xrohn ans they dont act like u. Am I just hypersensitive to my symptoms cause im ttuly in pain moat of the time and havent mastered dealing well yet

 

[ForeverCrohns]

What you can do if that person is always around you to explain that crohn's is periods of flare ups followed by remission and that it severity of the disease differs from person to person .. Tell them that you are glad who they know are in better shape but that's how you feel and if they try to put you down on purpuse don't let them get to you some times ignorance worth a million words!

 

[Jason]

I completely understand!Even my Gi doctor is a jerk and says I don't know why you are having so much pain because your crohn's isn't that bad. Well maybe it is but you can't see it because you don't do capsule endoscopy, and because of the location of my crohn's only the top and bottom can be seen with the scopes. The only way it was seen ten years ago was threw capsule endoscopy. I have people tell me all the time how crohn's is not a disabling disease and people live with it and are able to live normal lives. they don't walk in my shoes and have no idea.

 

[udontknow87]

Thank you its making me crazy and sadder than I already am! I don't expect special treatment or even. Sympathy but understanding would be nice

 

[ForeverCrohns]

I get how you feel ..

Not disabling! Let them have pain and leaking 24/7 and let's see how they can function!

I hate it when doctors are like that .. I am still traumatized by the pain I had from surgery and my doctor wanted to discharge me so he stopped one of the pain meds the night before my discharge and I ended up screaming and unable to breath from the pain that the nurse had to inject the pain med without IV ... The second day the Dr's resident came and told me if you wanted to stay more in the hospital no one would tell you no ( as if I were lying!) thank god it all happened in front of the nurse! And before it happened I told the resident who discharged me that my pain wasn't under control yet and he ignored me!

 

[udontknow87]

Is it always going to be like this for us? They r going to pass us off as junkies? When we r seriously in pain????

 

[ForeverCrohns]

I refused to be discharged till he figured out a solution for me!

 

[afidz]

ok, looking it up on the internet doesn't explain the pain. IT HURTS. And comparing you to someone else that they know that has Crohn's? Maybe that person is in remission. ugh. ANyways just try to blow it off, only you knows how you feel. And if your GI isn't listening, find a new GI. You need someone that you can trust

 

[KayleighMeek]

It is horrible I hate the one " I know someone with crohn's they did this and they are fine" and once even had that in a support group for chronic diseases that day I wanted to cry and say to the guy you should know what it's like living with something that you can control why are you being such a d*ck about it.
I know sometimes people are just trying to help but I want to shake them and say don't you think I am trying everything I can to get better and that everyone isn't the same. It's so nice to have a rant about it.
I have been off work for 3 weeks with a really bad flare up of arthritis where I couldn't physically walk but I just know when I go back tomorrow I will get someone stupid say something.
Anyway that's enough moaning from me, hope you feel better soon

 

[Irene3]

Hi udontknow87. There was a thread a few months ago, on rude insensitive ignorant comments. You should look it up. Many many comments that crohnies get all the time. Great vent thread. Hope it helps. xo

 

[UnXmas]

I've had this attitude from doctors more than anyone else, regarding my non-IBD health problems too. My symptoms seem more severe than the "objective" signs of disease and the level of disease indicated by test results. Some doctors therefore conclude that if I complain of symptoms it's an indication of my inability to deal with illness properly - mental weakness or a self-pitying attitude or something like that.

There have been times when I've applied the same thinking to myself. Sometimes I think there are limitations in my life that can't all be explained by my illness, so there must be something wrong with my coping abilities too. It's worth doing some self-reflection to make sure this isn't the case, but most of the time it really is the illness being as bad as it feels! There's no reason why we would we purposely limit are lives. Why would we be struggling to cope if there wasn't a reason for us to be struggling?

If you are in pain, you are in pain. There's no rules regarding how bad Crohn's pain is or how often it occurs. And when it comes to being compared to other Crohn's patients, it's certain that each case is different. Everyone has different severety of disease in different locations, and different patterns of flares, symptoms and complications. Maybe if the pain is bad and continuous it's a sign you're doctors not treating you well enough? I wouldn't suggest that to him though... well maybe in a more tactful way.

 

[Irene3]

The thread is-
Pet peeves on people's thoughts on IBD
Posted by- nogutsnoglory.

Have a look at it. It will make you feel better. And also, when its such a bad day, this thread gave me a good laugh.

You know your farts are bad when....

 

[Tenacity]

You need to tell them that just because you have an illness does not mean it is the same for everyone. Tell them, for example, some people with MS have the ability to lead normal lives and even participate in sports, while others need walkers or wheelchairs. Everyone illness has different levels of affliction - from mild to moderate to severe.