Pet peeves about people's thoughts on IBD

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nogutsnoglory

nogutsnoglory

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What are your pet peeves about what done others think about IBD?

One of mine is that people just think its a little stomach pain and that I'm making a bigger deal out of it than I should.
 
nogutsnoglory said:
What are your pet peeves about what done others think about IBD?

One of mine is that people just think its a little stomach pain and that I'm making a bigger deal out of it than I should.
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I have three:

- "It's just IBS."

- "You just have a poor diet."

- "You have a sensitive gut because you weren't exposed to enough germs as a child."

:ybatty:

Really??? Some people really don't get it!
 
I'm already getting the "it's your diet.. avoid gluten" and even my partner says "its because you don't exercise enough and we eat shit food" (ps: we eat the normal meat and 3 vege most nights lol)
 
My biggest pet peeve is lazy nurses. I had a nurse one time that didn't sanitize my finger before she pricked it, so I asked her why she didn't clean my finger and she said "because I ran out of alcohol wipes and I didn't feel like getting more". And I have tons of stories like that!
I ate when people say "are you supposed to eat that? " or " you always feel like sick stop using it as an excuse not to do things"
 
People thinking that they have the right to criticise and comment on my diet.

(I'm mainly referring to one family member who has chosen to have a go at me about what I eat at my engagement party and then more recently at my own wedding! Man I controlled myself then!!)
 
My biggest pet peeve is someone telling me ,"don't get yourself upset. You'll make yourself sick."
It's not the stress that makes me ill, it's YOUR IGNORANCE. :voodoo:

Another pet peeve is "What did you eat that's causing your pain?"
I know my body and what agrees with me. WHY would I do something to make myself sick?? DUH!! :voodoo:
 
My brother says he knows someone with {insert disease here} and they manage just fine, don't have any problems at all.
 
I hate when I am out at a restaurant and people say "can you eat that?"

Duh I just ordered it or I am willing to pay for it later but I think I know what I'm doing!!
 
I agree with almost all of the above...
Then there's 'your just bored, you need to get a life' by my mums partner. That one had me pussed off for a month...how the f:&k would he feel if he was in agony, or running to the toilet like he has gastro, every frigging day of his life. Yep, wonder how well he'd be doing then. But nah...I'm just bored so I'm making up that I have an illness.
 
1) People who have to have a reason why this happened/ looking for something to blame.
2) Saying you don't look sick, so you can't be that sick.
3) Not believing it is a serious disease. "Nobody has ever heard of that so it can't be that serious" is a phrase I was told once.
4) Confusing it with Colitis.
5) all the different names IBD goes by. Since there is not a known cause, the names are used to describe the location: ulcerative proctitis and ulcerative colitis are the same disease. Crohn's disease is Crohn's disease, but you have many different types which are just descriptions. My hospital discharge says I have enterocolitis. But I don't have a colon! Gets very difficult to explain the disease to the friends that want to know more about it.
6) People who think your life is ruined if you have an ileostomy.
7) People who want to help by suggesting a diet that will make you better. Often includes lots of raw vegetables! Ouch....
8) People who say you should see doctor so and so. He treated so and so, and they are not sick anymore (um, they are but maybe in remission!)

Did I miss any? :)
 
Comparing it to other pain/illness. I had a friend say that their husband had to go into hospital because of gas pain. As in he had to fart and it was agony. I'm usually a very compassionate person if anyone has even a sore or scrape, but that, made me feel like how can a perforated bowel, be compared to a fart?
 
Sonny said:
:sign0144: Has anyone ever gotten the, "You should've taken better care of yourself," speech?
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Even better. I got sick because I keep all me emotions inside. Of course the person who said that didn't realize by keeping my emotions inside it meant I did not kill them. :ylol2:
 
Iv gotten...it's stress, and still do have that comment sometimes. Thing is... I didn't stress about much before crohns. And having a little girl, as soon as hospital or even infusion days are needed, I stress about her straight away, and whatever new meds- pred especially, then reading side effect of humira...blah blah...I NEVER stressed like that before I had crohns. Because I had nothing to stress about. So how the hell is stress supposed to have caused it.
Addmitedly though, I do wonder about my diet. Want to try Scd to see if it really does put you into remission, but my specialist always said it's a chronic illness. Not food, dosnt matter if your fit or whatever. And I think people dont mean to be hurtful when they suggest diet etc, but helpful instead. But still...when we're told low residue by docs, it's hard to know what's best.
 
definitely agree with you Irene.. however stress NOW is something you definitely want to avoid. on days where you feel capable try yoga or pilates. if you can't make it to a gym try buying a book or dvds. I can definitely say those help out with stress management and general fitness as well. as far as the diet stuff goes i'm confused too however. i feel that each person has their own triggers and soothers
 
I have lots.
-your too young for this.
-if i ever had to have a bag i would just kill myself.
-your not trying hard enough to take better care of yourself.
-you cant be bleeding that much.
--are you constipated...?me: uhh i just said i have a ileostomy.
-my top one is when they refer to the bag as the sh*t bag..
 
Oh ouch 'shit bag'....brings back... Had 2 great friends, after they broke up, the female accused him of having been with me, so he tells me as if he would, cos first of all, she has a bag.....(during my temporary illeostomy), as if to say, who in the world would want to be with someone who has one.
Then had a family friend, who was told by my mums best friend (which I was so pissed off about), say to me, on the street mind you, 'hey I heard you got a bag'. I was mortified. :/
 
It bothers me when people with IBS try to sympathize. Like oh I know how you feel, like granted you may have potty issues too, but the whole scope of the disease is sooo completely different.

Also, have you tried natural supplements? Is another question asked frequently, and the same with going on special diets. Yes I've tried supplements and they help for certain things,and the same with diets, but every person with crohns is different! I know my body well enough at this point to realize like hey I hate being on crazy immunosuppressant medications, but I have tried everything with no success. I don't want to feel like absolute poo, and am not making it out to be worse then it is...

At the same time so few people know what Crohns is. Even a fair number of medical doctors, nurses don't know what it is. It's not like cancer, which has been advocated, and announced to the world. Crohns is one of the weird stigmatized diseases. Sometimes I wish there was more people awareness of the disease. I wish that there were as many events, fundraisers, lectures and symposiums, and more people that cared.

It almost is that sometimes I wish to have a more popular disease. More popular diseases get the research money, to find cures and new treatment. While us Crohnies sit around and get the cast off medications of cancer treatments and other more ore prevalent autoimmune disorders like RA.

Sorry to go on a rant, but it's the truth.
 
This Thread just had me laughing out loud.
The 'It's because you eat / drink crap' one does it for me - NO ITS NOT I HAVE A DISEASE!!!
 
I've gotten all of those. Most recently (still not over this) my GI doc is saying my current issues are IBS, even though I definitely have crohns. I know you can have both, but some of my largest complaints in going to see him and be scoped is that I am having such extreme extra-intestinal issues and as such don't believe the inflammation in my body is under control. He only saw mild inflammation. He said the issue is more functional, not structural (IBS).

Has anyone ever been told they were lucky to have crohns? Not to be a baby, because there are SO many far worse illnesses, but lucky is a large stretch. "At least you have a disease with benefits that keep you skinny. I'd like to have a bout of crohns."

I bet you would.
 
Oh and sorry to go on, but my other big one is when I say I'm in pain or I don't feel well (I generally prefer good grammar to 'I feel like hell') and people need to compare their pain or try to one up me. I realize that sometimes it is just people trying to empathize and say they understand, but a lot of times it is people basically saying that my issues are no big deal and they have stuff going on too. I'm like, I get it, you had a really bad flu once... Never said I'm the only one to suffer, just saying I am suffering now. Or, "YOUR back hurts....tell me about it. I have such and such." (read: your issue is a non-issue, stop making it one).
 
I was once told by someone at my (former) church that I have crohn's because I didn't pray enough.
Go figure that one out......
 
Sonny said:
Hahaha oh wow.. I don't even know what to say to that one :yrolleyes:
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Sorry, I probably should have clarified more. When someone says you get sick because "you keep your feelings inside", I believe it's just another form of saying the every popular reason "stress" causes it. Remember, I live just south of San Francisco, and "emotional well-being" or whatever you call it, rules some peoples lives. Everything happens for a reason, and it's always brought on my something you're doing wrong and not even knowing it. I personally feel that's absurd and don't sweat that kind of talk. But sometimes the twisted side of me likes to illustrate absurdity with an absurd comment in return. I was more like this when I was young.

One thing I realized as I grew up (or old), so to speak, was to be careful with "pet peeves" in relation to IBD. IBD is not a pleasant topic of conversation and the sad truth is everyone has their own problems. But these people are not bad, mean, or uncaring by any means- some are, but for the most part these people are just ignorant. Ignorance is a downer, but I learned a long time ago not to let ignorance bother me.
 
I detest the confusion of IBD and IBS. Yes, you can have both, but IBS is not the same as IBD. I know we have all experienced that!

Like someone else said, I too was told by a medical professional that the reason I felt better when I didn't eat was because I was overweight as a child and am still holding in all of my resentment of that time.
 
Yes yes...ibs...think positive....
It's a chronic illness, there are no answers to why!

And that'swhatshesaid....don't even get me started on the skinny thing. Yep, we're soooo lucky.

Sorry if this sounds bad, but I'm so glad to have this forum, where so many go through the exact same issues. :)
 
Hobbes650 said:
Sorry, I probably should have clarified more. When someone says you get sick because "you keep your feelings inside", I believe it's just another form of saying the every popular reason "stress" causes it. Remember, I live just south of San Francisco, and "emotional well-being" or whatever you call it, rules some peoples lives. Everything happens for a reason, and it's always brought on my something you're doing wrong and not even knowing it. I personally feel that's absurd and don't sweat that kind of talk. But sometimes the twisted side of me likes to illustrate absurdity with an absurd comment in return. I was more like this when I was young.

One thing I realized as I grew up (or old), so to speak, was to be careful with "pet peeves" in relation to IBD. IBD is not a pleasant topic of conversation and the sad truth is everyone has their own problems. But these people are not bad, mean, or uncaring by any means- some are, but for the most part these people are just ignorant. Ignorance is a downer, but I learned a long time ago not to let ignorance bother me.
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Haha oh don't worry I got exactly what you meant the first time. I just really wouldn't know how to reply to that person and also I'm pretty new to CD. I picked up on avoiding the ignorance quickly however. My parents don't really understand much about the disease either and want to find a reason for why such a thing could happen or how I COULD HAVE avoided it. Unfortunately, at the moment there's just no explaining it.
 
Sonny said:
Haha oh don't worry I got exactly what you meant the first time. I just really wouldn't know how to reply to that person and also I'm pretty new to CD. I picked up on avoiding the ignorance quickly however. My parents don't really understand much about the disease either and want to find a reason for why such a thing could happen or how I COULD HAVE avoided it. Unfortunately, at the moment there's just no explaining it.
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Parental Unit stress really sucks with IBD. Some parents probably blame themselves for their kid's illness. Some are in denial. Some are very interested in want to learn and try to help (sometimes too much). Parents hopefully learn that if they try to micromanage the process they create stress which can lead to cramps- so they need to be accepting. Very natural for people to want an explanation, but as they say, life's a beach sometimes. It's a curse, but at times it's also a blessing- you'll learn to appreciate all different kinds of people and what they deal with in ways not possible before. Not that you wouldn't have figured it out any other way, but I see lots of people that never really get it. Some people consider it lucky that they never had any serious health problems and that's true to an extent ( I wouldn't wish the pain I experienced on anyone), but experiencing it yourself changes you and and makes you better.
 
My family is the worst. Every time I see them they give me the "you're just stressed. You should see a counseler" speech and the "you need to watch what you eat" speech. So frustrating! Yep. Definitely just stress and poor diet that's all. :voodoo:
 
"Don't people with that always lose tons of weight?"
Yes, quite often they do - most of the time I don't. Doesn't mean I'm not sick!
Actually, I think the lack of weight loss was one of the reasons it took me so long to get diagnosed definitively as Crohn's, rather than "indeterminate IBD". I'm not fat, just not really thin either - so I look pretty "healthy" apparently, even when I'm flaring and white as a sheet.
 
Hobbes, I agree. I think that having a chronic illness is really character forming. And in looking at the people around me in my life (siblings, etc) I don't think they could handle it and I am glad that I am sick instead of it being one of them. I'm very sarcastic, but I just naturally have an optimistic, happy view of life, even when I am down about things- like crohns- and I feel like that helps me to handle it better than a lot of others would. And the rest? The stuff I am still adapting with? That's just character building.

...but I DO still have my IBD pet peeves. :ytongue:
 
It's rather amazing how people's attitudes and perceptions change when they are sitting in the waiting room while you are in surgery laying in limbo, that place between the here and there....

you find out who your true friends are..

bekka's family had it right sorta, nutrition, stress, etc, but Chron's patients can't just eat more and destress,

you can sit and eat untill the cows come home but if your body is not absorbing the nutrients it just goes right on through and out the other end..
 
During the ramp up to my obstruction I was undiagnosed vomiting and often in terrible pain. My big sister (always taking care of everyone) reassured me that if I started not feeling well not to worry, she brought Tums and Advil - this with a sad little smile.

I didn't want to hurt feelings so never told her what a joke that was or mentioned the pharmacy I was carrying with me.
 
nogutsnoglory said:
What are your pet peeves about what done others think about IBD?

One of mine is that people just think its a little stomach pain and that I'm making a bigger deal out of it than I should.
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Funny you mention that, my parents tell me all the time to just get over it, and that I need to eat better, when I eat perfectly fine! They play the blame game as to why I feel so bad. They try to say " I've caused this" basically.:hallo3:
 
I hate the fact people don't get how much pain I'm in/go through.

I literally tell people when I first meet them that I have "Crohns" and instead of googling it and being aware of what I go through they just assume I'm suffering from "some cramps" and I can get a "little lightheaded". If I'm unable to make it to a routine meeting because of a flareup they still try to push me to go "just for a little while". They make it seems like I'm a drama queen, a drag, and irresponsible/lazy.

Oh but they somehow all know a ~fun~ fact. The love telling/encouraging me to sign-up for medicinal weed. yayyy~ ! =|
 
Isn't it funny how family says that? If they thought about things for a second, they would see that saying crap like this creates stress! That's exactly the type of ignorance I hate- but I'm too old to get bothered by ignorant people anymore. Unfortunately, I didn't learn that much younger. ;)

beka said:
My family is the worst. Every time I see them they give me the "you're just stressed. You should see a counseler" speech and the "you need to watch what you eat" speech. So frustrating! Yep. Definitely just stress and poor diet that's all. :voodoo:
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Speaking of parents not understanding, every time I need the loo and we're eating, my dad looks at me with panic in his eyes and says "are you okay??", "yes dad, I just need a pee"... It's quite cute but I always end up laughing at him because when it is serious he gets annoyed because he thinks I'm trying to get out of doing something!
 
My biggest pet peeve has to be the people who think that gluten is the same as starch no matter how many times I explain it then get mad about it. I've had people make gluten free food or buy it then get mad that I won't eat it (I can't and how would they feel if they ate something that felt like ground up glass going through their system for 3-4 days? I don't get the D so this is my main problem and the inflammation.). What usually ends up happening is they yell at me, WELL WHAT CAN YOU EAT????

I have also had a number of problems with stewardesses on planes. I'm usually pretty laid back and just say I can't eat anything with starch so I can't chance any of the food. Personally I think they would be happy with that, but I've had a number get really angry and stick the food in front of me anyway like they want me to smell food I can't eat for hours and maybe I'll shut up and eat it. One stewardess was really upset over it and asked if I could have ice cream. I said, yes if it doesn't have anything in it like flavor, cake, cookies, etc. So she brings this ice cream that obviously has chunks of chocolate cookie in it and slams it down. I said, I'm sorry I can't eat that because it has cookie or something in it and I can't eat any kind of starch. She goes, "Oh for God's sake" and leaves it there for 10 hours. It was bad enough for me but the poor guy seated next to me had to look at it as well (not to mention we were trying to sleep and not tip it over onto us). And this was in FIRST CLASS!

Oh and I love the people who want me to go to get togethers that revolve around food so I smell food I can't have and wonder why I'm not all happy about it. Honestly, I can just talk to them by phone. It's bad enough I can't eat much of anything but I really don't want to be tortured by smelling food I can no longer eat. I just don't get that at all. Would they want to do that? Why can't we just do something else and they can do that with the people who can still eat?
 
I've not been dx yet, still going through the whole song and dance of trying to get a dx. Anyhow, I have been chronically sick with alot of health issues for the last 9 years and OH, I know how frustrating it can be when people who have NO clue open their mouths and say things that are completely ignorant!!!

I have had my own brother tell me that "oh your problems would go away if you just had more fun"!!! I mean seriously??what joke!! These are the people you would like to have live in your shoes for about 6 months and then see how they like it!!!
 
I can't stand when people say "omg this is so delicious sorry you can't eat any" "oh I feel so bad now" bite me!!!
 
Someone told me they wished they could get "something" like what I have so they could lose weight that easy! Almost fell off my chair - and she was eating a donut when she said it!
 
I am sorry, I am normally a very nice person and would wish no bad things on anyone, but that person who told you they wished they could get something like what you have in order to lose weight, well that person deserves to get something like this!!!! Man, I would have told him/ her if they want to lose weight to just put a piece of tape over his/her mouth!! Ok, sorry, that was a bit nasty of me, but what an absolute horrible thing for that person to say to you. Unbelieveable what people say huh!!






akduck said:
Someone told me they wished they could get "something" like what I have so they could lose weight that easy! Almost fell off my chair - and she was eating a donut when she said it!
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Usually things people say don't bother me much - some of it is misguided, but they generally mean well. But, there are a few things...

- "My stomach hurts today. Now I know what you're going through." Seriously?! How does one day of stomach pain (probably mild pain, too) compare to my chronic and often extremely painful illness (not to mention the billion other symptoms)? I was shocked; I definitely thought this person (one of my closest friends) had a better understanding of Crohn's than that.

- I had been late to my psychology class a few times, so afterwards I went to explain to the professor that I have Crohn's disease and I was late because I was having stomach problems. She interrupted me and said, "Is that contagious?" Come on, now. If someone asks what it is, I generally try to cover the fact that it is not contagious - because if they're completely unfamiliar, I don't blame them for wondering. I've never had someone be so completely rude about it. Or she could have just googled it like anyone else.
 
This thread is awesome!!! Some of my favorites:
"At least you don't have cancer"
"I broke my leg once and was in the hospital, so I know what you are going through"

People that ask what Crohn's is, then I start to explain to them, then they tell me to stop because it isn't appropriate dinner conversation!!!
 
Have your lost weight? (really, I'm trying to keep it on)
Let's order in salads, they are healthy and good for you (not me)
You look healthy (yeah, well would you like to look inside?)
Do you really take all those meds? (No, I like the pretty colors!)
Go gluten/dairy/msg/additive free and add more fiber/wheat/whole grains
 
My co worker keeps making her disease sound worse because she has cancer. I think both are horrible in different ways. Not sure they can be compared or one is worse than the other. Cancer is deadlier but crohns is chronic whereas cancer can go into remission forever.
 
Okay, so don't get all in a twist if these have been covered before.. It's late, or early, rather..

So my biggest three peeves are as follows, in ranking order.

1) My dad (who I haven't spoken to for over 5 years) telling me; "God is teaching you a lesson, because God never gives us more than we can bear."

Uh, who is this God? And why is he such a sadist? More than we can bear? R.I.P. Lars, 2-3-10. He had Crohn's.

2) "Well (insert spouse) and I are having a party, and we were wondering what you could eat, so we can prepare food for you and everyone else."

Well, I may, or may not eat what you have prepared regardless of it being on my diet. I also don't like people inconveniencing others just for my benefit. I can easily manage to eat something virtually anywhere.. I have been eating for a long time.

3) "Are you sure this isn't just in your head??"

This one I got more before surgery. Naturally this isn't in my head! Why would I spend literally thousands of dollars on doctors, tests, and toxic drugs?? To cop a buzz? For sympathy's sake? STFU!
 
Many years before I was diagnosed with UC, I had a GI doctor ask me why I wanted to waste all of my parents money on doctors and that I should just get a job and get on with it.
 
Iv written my top peeves, but the hospital comment reminded me. After getting a temporary illeostomy, a great friend compared having a c-section, to my resection. First time, I didn't mind, but several times... I ended up saying only, that c-section is along the muscle, where as all my gut muscles, from boobs to pubes, have just been sliced down the middle. I didn't mention...that I also have an organ literally popping out through my side. But yes...same thing?!?! Not to mention the pain :/
 
The day before my sisters wedding we all went out for a meal. i told my Dad I couldnt eat anyghing cos i had stomach pains & had forgot pain killers. His reply was " youve got to eat somthing, you cant sit there while everyone else is eating"!

So i ordered a banana ;-)

The old " well you look fine to me" just makes me smile sweetly now :-D
 
I love it when people tell me not to stress out otherwise I will "make myself sick."

I've even gave them all the brochure information from CCFA on what Crohn's is, the common misconceptions, etc. to educate them so they realize that if I am upset about something, (don't we all get upset about even little things and get over it??) my CD will not flare up.

Still, I get the same thing crap......Don't stress out, find your happy place..my happy place is my foot right up your hiney.

I've learned over the years it's ok to vent to get it out of my system as it's better than holding it in. Wish certain people in my life would get a clue--I do NOT make myself sick.


:kissgrits::kissgrits::kissgrits::kissgrits:
 
When a person says "I know about such and such who cured his/her Crohn's by drinking this herbal mixture." - No, they didn't.

When someone says, I should just dive in and experience life. - Yeah, it's hard to do that when you can't get out of bed.

Or my favorite! "How can you get better if you have that attitude, you need to be more positive."
 
One of my best friends keep asking for me to come to dinner at her house and she lives 45min away. I had to keep making up excuses why I could not come and finely She got very up set with me and would not talk to me for a week. So I had to call her and explain that I can not eat any where that far from my house and have a drive that far that does not have bathrooms available. She told me that I could just stay a little longer and she has bathrooms.......she did not get it at all......AAAHHHH!!!
 
Agree with all of the above. My MIL keeps telling me it's because I eat spicey & "foreign" food... Drives me demented! Seriously if she ate anything but meat and three veg she'd die! Also the first diagnosis most of us seem to get "IBD"... It's all in your head and diet. Thought I was going mental for the first three years until I met my knight in shiny armour- my current doctor.
 
I once had someone tell me I probably had Crohn's because my mom didn't breast feed me. I'm still pissed about that one.
Everyone wants to find a reason for it though.
And yep, I hate that people just think I have a sore tummy and go to the bathroom alot. there aren't many people who understand the full scope of the disease and all the different things it does to your body.
No one understands why I don't work. I'm always having to justify that. They don't understand that most of the time for me managing my disease is my full time job.
 
My youngest has autism and I heard enough ridiculous crap with that over the years.My eldest hasn't even had a definite diagnosis , just that it might be crohns for a few days ...more test to come....and already I am losing patience with people.
Some things are simply better when they come in pairs and a closed mind should come standard with a closed mouth.
 
SamsMom said:
Some things are simply better when they come in pairs and a closed mind should come standard with a closed mouth.
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I agree. There's nothing too new I can add because it already has been said...people can just be so insensitive at times! The one about the feelings one makes me angry the most. Psychosomatic symptoms can happen, but Crohn's is the real deal and you can't even compare the two. So everyone should just stop assuming that I'm sick simply because I can't deal with my emotions. If anything, it's the other way around!
 
When a relief GP or other DR when your away from home always puts their 2 cents in - "Your on too much pain meds", "You should do this/that", "Who put you on this?"

We have heard it all before, so shut the hell up!:voodoo:

Take care, Monika & Matt
 
noguts, are you serious??? that coworker needs a beotch slap upside the head.

I'm sorry but we didn't catch Crohns and we are not contagious. So sick of people trying to "CURE" us with their stupid advice.

Next thing you know theses same folks will be empathizing , if they don't already, that having the flu is the same thing as IBD and they truly relate. NOT!!!

Wish these ignoramouses would walk in our shoes for a week. bet they couldn't last a day with what we go through....the gutless wonders that we are.

:thumleft::thumleft:
 
She knows I have crohns and was joking but I didn't find it funny. I mean I didn't even realize she was behind me. I don't like people knowing about all my pills it's embarrassing.
 
I was having dinner with my Uncle one time and the topic of discussion went to my Crohns, he then starts to tell me how he understands how I feel, when he eats really spicy food his stomach gets upset. I laughed and told him that mine was a little bit different in that my body is eating my intestines and the disease itself has nothing to do with spicy foods like his IBS does. We had a good laugh about it but its kind of a pet peeve for me.
 
I'm new to CD, but I already have a few pet peeves from telling family, friends, and coworkers about my diagnosis:

--"But you're too young to be sick and be having all of these problems." This one comes from my co-workers, who mind you, are nurses and other health care professionals. Umm, newsflash, CD can affect anyone at any age.

--"But you've always taken such good care of yourself and you eat so healthy." I'm an athlete and I've always been fanatical about my health, my workouts, and the food I eat. This one kind of hurts because I'm still in "why me" stage. But I know that CD has nothing to do with how well I took care of myself. It bothers me that other people think that you can somehow control whether or not you get this disease.

--"You need to get a handle on your stress." YES--I know my stress level is not helping things, but I am TRYING. Maybe if you quit saying things like this, it would help!!!!
 
My favorite is when someone asks how you are feeling and when you start to tell them, they say "I know how you feel. My stomach doesn't feel well." Or that they had the D yesterday. Having a stomach ache or the D once is nothing to what we go through.

I also have a family member who says they know they had Crohn's but they are ok now 6(without being diagnosed or having any sort of treatment, they were actually diagnosed with IBS with no treatment). Some people think it will just go away.

Reading throuh these posts has made me laugh! Just what I needed!

Diagnosed April 2012
Terminal Ileim & Colon
Meds: Prednisone, Apriso, 6mp to start in a couple days
 
1) People who think you can take a supplement/herb/vitamin and be cured.

2) Hearing you don't look sick, which of course means you're NOT sick

3) Saying that you're too fat for Crohn's disease.

4) People who look at you as a potential customer for whatever special pans/water purifiers/herbal supplements they sell.

5) The people that always "think" they know someone cured by Crohn's with said pans/purifiers/supplements.

6) People who think if you prayed more you'd be cured.

7) People who think it's the same as IBS.

8) People who say they wish they had a disease that makes them skinny

9) People that say it must be nice to be on disability.

10) People who wonder to your face if you use Crohn's as an excuse to get out of work/school/social events.

11) Not to offend anyone, but I'm tired of hearing "God has a plan for you". I know he does, but I don't believe he meant for anyone to be sick or suffer, or that some people get sick or suffer "for a reason"...I don't think he teaches us about ourselves through cruelty.

12) People feeling free to comment on your weight ups and downs/acne/rounded face/furriness once they realize it's caused by medicine-like that makes it better.

13) People who tell you they will deny you access to bathrooms and other facilities because you don't think you look sick.

14) Crohn's jokes-sorry I'm not there yet with people who don't have the disease. People here know what they speak of, so it's different in my opinion.

15) People who say if you just push through it you'll feel better

Wow, feels good to get that off my chest!:ybiggrin:
 
This guy telling me that if I don't try camels milk I'm closed minded and clearly don't want the disease to end.

Where the heck do I get camels milk in the US. Are you kidding me?
 
The problem may also be people's need to tell everyone everything about themselves then don't like it when it's mentioned back on them.
 
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I've not even had CD a whole year yet and I have a list of these as long as my arm.

I was told by my doctor before diagnosis that he didn't believe I had CD, he didn't even believe I had IBS, he thought that my symptoms were clearly caused by my "bad lifestyle", although I had just explained to him that I ate incredibly healthily. He weighed me, and assumed as I'd put on 10lbs I was clearly too fat for Crohn's. Still can't get over that one.

Another Doctor who after diagnosing me with Norovirus for the THIRD time saw that I was clearly disappointed and frustrated said "what? you don't WANT Crohn's disease do you?" No I bloody don't, but if I have it I want to frigging know!

My boyfriend often tells me I'm "too negative" and maybe if I was more optimistic I'd feel better. (That's a difficult one, as he's a type 1 diabetic so he clearly knows what it's like to be diagnosed with a lifelong illness, so I can't really say "you don't know what it's like", but diabetes and crohn's are two incredibly different illnesses!)

And my BIGGEST pet peeve is when people say "Oh well I know someone who has Crohn's disease and they just get on with their life perfectly fine, so why are you so worried?" Erm, because every single case is completely different, and just because you know one person who is okay with it, that doesn't mean I will be! And considering the person you know was SEVENTY-EIGHT when they were diagnosed and had always had symptoms, they clearly never had it TOO severely, or it would have been diagnosed years ago. It was never even bad enough for them to be admitted to hospital, and I've been in three times in 9 months, so I'm sorry if hearing about your one friend who was okay with it doesn't give me confidence that I'll definitely be fine too!

Rant over :p
 
"you have to get up and run around and breathe some fresh air, you know my sister in law believes in the healing power of natu.........there you go, that's the spirit, you're already running off"
 
I dont have IBD, but my dear husband does and I almost want to scream when my inlaws (his parents/grandparents) say these things:

You look awful! Whats wrong with you?

Are you on meth?

If you would try Zantac/Prilosec/Tums/Tagament, et al, itll make you better.

Go to the doc and tell them to do the surgery

Its just a bellyache.

(and my all time favorite. By his mom/grandmother) "There is no way you are sicker than me. No one in this world is as sick as me" her actual words. I shit you not thats what she said. Ive never in my life wanted to smack anyone as much as I wanted to smack her in that moment.
 
I just "love it" (note sarcasm) when family members tell me that they know better than my medical team. My mom believes everything on the internet so now I just don't tell her anything otherwise she'll get online find some scam site and then tell me if I drank this or did that,buy this item which costs an arm and a leg, etc. I'd be cured.

Then there's my oh so supportive sister who use to tell me that I'm a drug addict and faking my illness just to get attention. The kicker was after I got married she was like" you should stop your medications and have a family". REALLY SMARTAZZ?? YOU WENT TO MEDICAL SCHOOL?? kiss my grits.

I trust my Primary MD, GI, GI surgeon, hematologist, neurologist, pharmacist, and visting nurses because they all work together to keep me well. Not only that but everyone talks to one another before starting any new treatments on me so there are no complications.

Ignorant folks can go pound salt for all I care. I'm sticking with what's been working for me.
 
My favorite...we're a lot a like, my stomach goes a bit off when I'm stressed too. Sorry. We are not at all alike. :rof:
 
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maimmie said:
I once had someone tell me I probably had Crohn's because my mom didn't breast feed me. I'm still pissed about that one.
Everyone wants to find a reason for it though.
And yep, I hate that people just think I have a sore tummy and go to the bathroom alot. there aren't many people who understand the full scope of the disease and all the different things it does to your body.
No one understands why I don't work. I'm always having to justify that. They don't understand that most of the time for me managing my disease is my full time job.
Click to expand...

I breastfed all of my children and 2 of them got Crohn's. One was bf about 8 months, the other a year and a half.
 
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I think I may have said this somewhere in here, but I have been told by my bio-mom that I just need to eat a green leafy diet and to stop eating bread because she can't eat bread so in theory I can't either and thats all I need to do. Problem fixed.
 
People assuming I'm anorexic.

People telling me I'm lucky to be so thin.

One person who told me I was lucky because at least I had a reason explaining why I can't keep up with normal people trying to work and have a social life.

People who list not being able to control their bowels as the point at which they would opt for assisted suicide.
 
nogutsnoglory said:
My co-worker saw my pill case and said "omg you are like an aids patient" that really pissed me off.
Click to expand...

Thats awful. I read that in a valley girl accent. I prolly would of smacked her. I hate that just cause youre thin and/or on a lot of meds they assume things like that or that youre on drugs. Its judgemental, rude and ignorant.
 
I get really tired of people telling me how Jordan Rubin cured himself of Crohn's with diet and faith-as though me being sick is somehow both a personal and moral failing.:ymad:
 
Hi guys

Most of the above plus

"you need a job"!!!!!!!!

From my partner (yeah work sorts you out when you can't stop sh***ng)!

AND PLEASE READ

My father in law (who I love, don't get me wrong) is undergoing surgery (limited proctocolectomy) for rectal cancer. He gets the whole "poor you, poor thing, how awful, get better soon, don't do to much". I HAD A RIGHT HEMICOLECTOMY PLUS STRICTURE REMOVAL in March and that was 2 DAYS OFF WORK, from my partner (he was busy) "YOU CAN MANAGE ALRIGHT" from mother in law.

I AM SO P*SSED OFF! and I hate myself, because FIL is going through the mill. But I had similar surgery and it was like I was having lipo or something, just so inconvenient and routine for my OH and MIL. Thats why I strugle with cancer patients, they get all the time and sympathy when others need it too!

Again I FEEL LIKE A RIGHT B*TCH. because people are really sick, but at my local hospital if it's not the big C you can f**k off if you want to be treated like a human being.

THE WORST THING IS CROHN'S PATIENTS FACE SURGERY EVERY 5 YEARS (AVERAGE) ACCORDING TO MY SURGEON

I'm sorry if I appear to have a heart of stone, but I've been having nightmares and flashbacks to my (slightly incompetant) hospital admission, and I just feel that its SO THE CASE that cancer patients get better treatment (even when they're 65 and expected to make a full recovery) thanthose of us who face surgery every few years (from 15-30) for the rest of our natural!!

Sorry for the rant, but I feel like I want to scream right now!!
My life has turned around in the past few months, and I don't want people to forget that it has been a hard road that will be with me for the rest of my life.

This time last year I suffered a miscarriage (due to Crohn's, they think), I lost my Nana, and just when things were OK my OH was in a RTA and smashed his ankle. (last year was SH*T).

I love my life!!! and things have improved, but I don't know if I will have another child, and (see above) my Crohn's will always be there

SO WHY SHOULD I BE F****D OFF TO THOSE WHO HAVE LIVED THEIR LIFE AND (SHOULD) RECOVER WITH 1 SURGERY?!

If I'm an evil c*w I'll take it, but I feel really hurt and unimportant to those people who should care about me too! SORRY!
 
Angelzig-I am utterly speechless at what you've endured. Absolutely awful. Sorry...I'm at a loss for words.
 
I'm so sorry. :(

My own mother wasn't concerned or sympathetic when I needed a c-section, but she was very concerned and sympathetic, when 6 weeks later, my husband got a vasectomy.

To me she said, "I'm sure you'll be fine, honey."
To him she said, "Yikes! Are you sure you're up for this?"
 
Angelzig, I'm so sorry for everything you've had to go through this past few years. I thought I had had a terrible time of it but your post has put a lot in perspective.

I completely agree with the cancer comment. When I was 18 I was diagnosed with a malignant melanoma, admittedly it's not pleasant and especially not at 18, but still it wasn't life threatening as it was caught early. Everyone was so wonderful and caring and considerate, because how awful that one could have such a thing at such a young age? I had an incredibly minor op but everyone seemed to care so much.

Fast forward four years, where I've been diagnosed with Crohn's Disease and have had to accept that my life has completely changed and will never be quite the same, and I keep getting told I'm too negative, or optimistic, or should just push through and everything will be ok - "once you're in (the currently elusive) remission you'll be fine again". Well yeah, to an extent, minus the medications and fear of flare ups!

I actually once said "if I'd been given a choice between another melanoma and Crohn's disease I'd chose the skin cancer, it was easier to handle both physically and emotionally, and after two very minor operations I was fixed." To which my Nan responded saying "don't say that, you'll tempt fate, cancer is the worst thing you can have!" I'm not saying that cancer isn't horrific, because it is, but I noticed people cared a lot more when the C word was involved. Ironically Crohn's is a C word, and maybe people should start realising that it can be just as painful, exhausting, debilitating, frightening and life threatening as other "more serious" diseases.

I hope things finally start to look up for you, you sound like you've been to hell and back and I deeply sympathise. Sending lots of hugs your way!
 
I'm undiagnosed as yet, but with a GI who is pretty sure it's CD (from symptoms, calprotectin, etc etc). There are two things, that folk have already mentioned so far, that have been doing my head in during this diagnosing process:

1 - I have lost a significant amount of weight over the last few months (about 20kg/just over 40 pounds). I've not easily been able to lose weight before, which was one of the first things that panicked my GP.

Pet Peeve = "OMG how have you lost all that weight? you look awesome! OMG give me some advice!! what should I do to lose all my extra weight??".
Me = "um, thanks? I feel like crap, but thanks... and I would recommend not being able to eat anything more substantial than miso soup for about 4 months; should do it. couple that with serious bouts of D, and you're all set."

2 - While I have lost a fairly decent amount of weight, I'm still technically 'obese' (cusping on 'overweight' - high five! can't wait until I'm overweight - only 2kg to go)

Pet Peeve = "oh, it's probably not CD - you're too fat. CD people are really skinny. It's probably cancer."
Me = "awesome - can I take you along to my next GI appt; I'm sure he'll appreciate some of your sage medical advice."

Yeap. Great stuff... bless their cotton socks. :smile:

xLT
 
Angelzig said:
Thats why I strugle with cancer patients, they get all the time and sympathy when others need it too!

Again I FEEL LIKE A RIGHT B*TCH. because people are really sick, but at my local hospital if it's not the big C you can f**k off if you want to be treated like a human being.

THE WORST THING IS CROHN'S PATIENTS FACE SURGERY EVERY 5 YEARS (AVERAGE) ACCORDING TO MY SURGEON

I'm sorry if I appear to have a heart of stone, but I've been having nightmares and flashbacks to my (slightly incompetant) hospital admission, and I just feel that its SO THE CASE that cancer patients get better treatment (even when they're 65 and expected to make a full recovery) thanthose of us who face surgery every few years (from 15-30) for the rest of our natural!!
Click to expand...

I actually agree with this. Cancer is a widespread illness, and a terrible illness, and it gets a lot of publicity and funding for research and charities. But this means that sometimes people with other illnesses don't have the same resources available as cancer patients, even if they are just as sick or have a life-threatening disease. For example, there are Macmillan cancer nurses who offer advice to cancer patients on everything from hospices to managing finances - but only to people with cancer. Help is allotted according to the diagnosis you have, not to the severity of your suffering or the extent of your needs.

I wouldn't put Crohn's on a par with cancer though. I actually think people with Crohn's are kind of lucky in one respect. There are forums like this one to go to for information and company from others going through the same thing. Crohn's has support groups in real life and on-line. A lot of people suffer just as much as someone with Crohn's, but can't get the support because their illness happens to be more rare. I have another neurological illness which is incredibly rare, and I'm alone in it - there's nowhere I can find people going through the same thing.

The other problem with Crohn's though, I think, is the stigma attached to having a bowel condition. This occurs with cancer too - there's a stigma attached to lung cancer because the general perception is that people cause it themselves through smoking (which isn't always the case), and to bowel and prostate cancers because, like Crohn's, they're associated with body parts and functions that we're supposed to feel embarrassed about.

So my other pet peeve is that Crohn's is not something we're supposed to talk about. Many people don't want to hear the details of our illness. And while the physical pain of Crohn's is something we might get sympathy for, people don't seem to find diarrhoea and loss of bowel control deserving of the same kind of sympathy.
 
People assuming that I must be depressed cos of Crohns..........argh! It drives me mad!! Especially drs, I get upset when I try to portray how I'm feeling physically, but they don't see past the tears to understand that I'm really peeved at daily pain and that's why I'm upset, plus I'm embarrassed talking about myself. All I ask is please listen to what I say not to what you are thinking. My sister saw her gp who said she was depressed.......turns out it was type 1 diabetes!! He really messed up on that.
 
I got the best yet the other night. I was supposed to go to my friends house Saturday night, but as it was a nice day, I sat out the back garden during the day and drunk one glass of pineapple dacquiri. Ouch!! Half an hour later I was in agony. I text her 'I cant come over, stuck on the pan, drank a pineapple dacquiri and its killing me'. Her reply ' Aw it'll go away, hurry up and come up!'. Excuse me? My reply 'Oh will it?! Well it hasnt for the past 10 weeks!!'. She didnt say anything after that, and I havent spoken to her since.

My mum used to always say to me that my crohns was caused by my drinking alcohol in my younger years. I mean, its not like I drank loads!! She used to say it was a lifestyle thing. She understands more now though.

My work - 'hopefully, you'll be back to normal soon and we can get on with things.' Yeah my normal would send you to the hospital terrified you were dying.

Why are you shaking like that, whats up with you? I hate that one!!

My bf - why is your stomach sore now? Cos u are eating sh*te constantly! Erm no, I have a chronic disease, you moron. He's great with me and my cd, he has a more up front approach to it, telling me I've got the toilet stinking etc. I prefer it this way, just hate when he basically says its my own fault for eating rubbish that I'm in pain! Dont think he understands that right now, mid flare up, there's no real telling when the pain will start.
 
Oh my goodness, this is similar to something my dad said recently, he reckons I caused my crohns by drinking!! I was quite upset by this, he has made himself very poorly by drinking too much (major liver problems and brain affected) so to justify his situation he tries to say I drink so therefore I made myself have crohns!!! Oh he makes me mad, it's bad enough having crohns but to be accused of causing it is just beyond belief.
 
lizbeth said:
Oh my goodness, this is similar to something my dad said recently, he reckons I caused my crohns by drinking!! I was quite upset by this, he has made himself very poorly by drinking too much (major liver problems and brain affected) so to justify his situation he tries to say I drink so therefore I made myself have crohns!!! Oh he makes me mad, it's bad enough having crohns but to be accused of causing it is just beyond belief.
Click to expand...

Yeah its horrible! She made me feel like an alcoholic or something, when I only ever drank like a normal young person did, i.e. nights out at the weekend etc.

Luckily enough she's stopped saying that now.
 
Dad has been accusing me of being an alcoholic for years now though he accuses me of many other things too, like being anorexic which if you could see me you would know for sure I'm not lol. Don't think he will ever give up what he is saying :(. Glad your mum has :).
 
When my daughter first became ill, I thought she was anorexic, too. And she just kept telling me that she wasn't, as she was disappearing into nothing. She was too embarrassed to tell me that she'd been pooping her brains out. :(
 
Amy2 said:
When my daughter first became ill, I thought she was anorexic, too. And she just kept telling me that she wasn't, as she was disappearing into nothing. She was too embarrassed to tell me that she'd been pooping her brains out. :(
Click to expand...

I was in your daughter's exact situation when I was a teenager. My parents thought I was anorexic, because the doctors told them I was, and because I was way too embarrassed to tell them I didn't like eating at school because I didn't like having to use the school toilets and having to leave class because I had diarrhoea.

I have honestly forgiven my parents for not believing me. I know I made it so difficult by not owning up to what was wrong - I kept saying I wasn't anorexic, but I wouldn't tell them the real reason for my weight loss.

I think, like me, your daughter will not hold this against you in the long run. I'm not sure how old she is now, but even though when I was a teenager I was so angry with my parents for not believing me, now that I'm an adult I can understand how my drastic weight loss scared my parents and made them turn to the most plausible explanation which the doctors offered them.

Don't ever feel bad that your daughter was too embarrassed to talk to you about the bowel problems she was having. When you get these kinds of symptoms when you're young, I think you're so embarrassed you don't want anyone to know, no matter how good your relationship with your parents is.

Keep helping your daughter and believing in her now, and I think with enough time she will understand.
 

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