Pet peeves about people's thoughts on IBD

[Crohn's gal since 1989]

I just get annoyed when people complain about bathroom smells. Gee this is the least of their worries! Just once I'd love for them to experience that sense of urgency that you're not going to make it, or the stabbing pains that sometimes come when you're trying to go! Last time I checked, no one pooped out roses! For us it's just frequency!

So sorry that your nasal passages were assaulted!:ymad:

 

[Miekske]

Had a pet peeve experience too: someone who told (while I'm in a serious flare-up and have got diarrhea 20-25 times a day) that it was not necessary to run to the loo because every adult can hold his poop at least half an hour. ........ just made me and my Crohn ridiculous at this way :-(

 

[tonisturrs]

I've had the drinking one too. I was a heavy drinker a couple of years ago, but by heavy i don't mean alcoholic heavy I mean I was just going to university and we drunk a lot. If I caused it myself because I drank so much, how come every university student doesn't have it? Grr!

 

[lizbeth]

I've had the drinking one too. I was a heavy drinker a couple of years ago, but by heavy i don't mean alcoholic heavy I mean I was just going to university and we drunk a lot. If I caused it myself because I drank so much, how come every university student doesn't have it? Grr!

Very good point .

 

[rygon]

Most of the time its my family saying "Ive read this on a website that ... "

And one I have had when I said that I have IBD. "No you mean IBS. No it definately is called IBS, Irritable Bowel Syndrome"

 

[nogutsnoglory]

Everyone telling my parents "send him to the Mayo clinic" they cure everything. I appreciate their thoughtfulness but stop bothering me to go here and there when I know the treatments are the same.

 

[UnXmas]

People (relatives usually) who constantly ask me about how much pain I'm in and how bad it must be for me being in such bad pain all the time but never ever mention that they're sorry I have diarrhoea. I actually never have much pain at all, at least not in my normal state - after surgery and during a few acute episodes I have pain, but the majority of the time I am pain-free. Whereas I have diarrhoea constantly, multiple times a day, grossing myself out and meaning I have to be in the bathroom for hours rather than doing things I want to be doing. But some people think diarrhoea is taboo and so never mention it and instead keeping insisting that my life must be so hard because of all the pain I'm in.

I don't mind people offering some sympathy for my illness, I just wish they'd offer it for the illness I actually have and not the socially acceptable version they've created for me!

 

[SJ!]

Just after Greg (husband) was hospitilised with pancolitis and was on 100mg IV pred, Vancomyacin, transfusion etc etc... he couldn't work for 8 weeks my father said to me surely he can just go to work and sit at his desk and do something... I never took more than 2 days off work my entire life" My mother told him off lol and he hasn't said anything since!!

 

[Essieluv]

You know what bugs me? When a doctor looks at me like I'm crazy when I tell him my Crohn's symptoms. Hello Mr., you are a GI who specializes in IBD, and my symptoms are pretty common. Don't sit there and look at me like I'm stupid.
Or when I had a reaction to a medicine and had shortness of breath, and a doctor told me it was just "anxiety". Um, REALLY?!!
It's frustrating when people who have studied IBD for years just don't get it. I guess you really do just have to live through it to fully undertand?

 

[Essieluv]

My friend complained that I was always sick. Yeah, that's kinda what the terms "chronic illness" and "disease" mean. Sorry my body didn't decide to be healthy.
It also bugs me when my Grandma tells everyone, and I mean EVERYONE, how much weight I've lost in the last few months. Is it really necessary to tell people you've only known for five minutes that?

 

[Angelzig]

Thanks guys!!!

I thought I was being so awful.

Quick update...my FAL is recovering really well (much better than I did, no infections or emergency CT scans for him).

Thanks so much for reading and responding, Crohn's is bloody awful and its great to have a place to say just that.

Love and hugs to you all xxxx

 

[GutlessWonder86]

Rygon, I use to get that ALOT from my mom. Every time I was in the hospital for surgery, she'd be like "I read this online and you should be doing this or you shouldn't have done that." Thanks for being so supportive.

Another thing that really irked me was when she'd blame me for eating something that caused it or I didn't follow her advice. Um, I'm sorry, but there is NO MD AFTER YOUR NAME.

The worst one was when I was dating my husband and he rushed me to the ER due to a full blown bowel obstruction which my GI told me later on that Philip saved my life because my gut was so distended that it almost burst. He waited for my mom to come down and then he went to work. She's there by my bedside and instead of asking how I was doing, do you know what she said?? "He's obviously going to break up with you now because of your Crohns".

Well, guess what? We've been married for almost 16 yrs. and he's been my rock the entire time I've been in the hospital INCLUDING A STROKE THAT I HAD WHEN I WAS 37 YRS. OLD. Yeah mom, he sure left me high and dry. NOT!!

 

[Jaiyce]

I am also sick of the weight comment ..."you don't look like someone with Crohn's, aren't those people super skinny? It must be pretty minor case then"... Aaaaaaaaahhhhhhh!

 

[Crohn's gal since 1989]

I am also sick of the weight comment ..."you don't look like someone with Crohn's, aren't those people super skinny? It must be pretty minor case then"... Aaaaaaaaahhhhhhh!

Or the fat person who tells you that you're lucky to have Crohn's to help you keep the weight off!:ymad:

 

[McM17]

My little sister likes to say that she thinks that going to the bathroom 15-20 times a day would be worth it to "stay skinny like me." I can't even count the number of times she's said that she'd take the Crohn's in exchange for being thin.

 

[Essieluv]

I can't stand it when people say they wish they had "your disease so I could lose lots of weight fast!" First, don't they understand that this type of weightloss is really hard on and unhealthy for your body? It's not good for you. Second, the people who say this to me usually eat junk food all the time. I am so tempted to tell them that instead of wishing for an uncurable diseas, they could just try to eat some veggies!!!!!

 

[Amy2]

Most people are pretty self-absorbed. I was a perfectly healthy teenager. 5' 7" and 120 lbs, but I wanted to weigh 115 and I kind of obsessed about those 5 lbs. I hated it when people said I was skinny because I did not believe them. I remember considering burning off my tastebuds, so food couldn't temp me anymore. And without thinking about it deeply, I probably would have been jealous of Crohn's people too. My son's dr told him he needs 50% more calories than a healthy person. That's the "disease" I wanted. No other symptoms, of course!

 

[xxjemmamxx]

I was trying to explain to my Nan how I feel a lot worse when I am at work due to having bad fatigue and the physical nature of my job and she said, "Oh, you're just lazy!".

Now I have left my job because I can no longer manage it with my Crohn's and I'm pretty sure they think I am being lazy and just don't want to work for some reason. They keep asking me when I'm going to start looking for a job and joking that I've retired early - I just strangle them in my mind. It was a big decision for me to leave my job and their teasing just pushes me over the edge.

I'm always getting the 'you're so skinny', 'skinny minnie' crap from my family. Thanks for pointing that out, it's not like I don't worry about being underweight anyway or dread the next flare up or hospital stay where I lose even more weight that I can't afford to -_-

Someone give these people Crohn's for a day, please!