Ok worst thing someone has said to you.

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maria

maria

I love you God.
Joined
Jan 27, 2012
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398
Ok so I'm sure not every friend or boyfriend or whoever has been totally understanding. What is the worst thing someone has said to you since getting a ileostomy/colostomy or having crohns/uc. I have had few bad reactions from loved ones but theres a few that plays in my mind over and over and is like a stab in the heart and leaves a bad taste in my mouth for having to have a bag.

I have 2:

One is my ex told me that he would have nothing to do with me until I got rid of my "Sh** bag" with a Ugh sound after and like a QUIVER. Gosh that hurt!

The other is I had just had surgery and there was male nurse explaining to my friend about my procedure and said something like you know shes not normal people like us.. That was the first time it hit I would never be the same. Scared me!
My friend said what do you mean she's not normal. She is very normal. He just said well you know what I mean.

Now I look at it as funny, they just don't know better and I love the people even more when they say stuff that's hurtful. I want to show them unconditional love right back. BUt I do admit it stings my heart a little.:rosette1:
 
I had a friend who was through all the bad times with me. I would work through the pain and such and would only go home when I needed to clean myself up. The days which I was to tired to really work were few and far between and most of the time I pushed through. I was then to sick and got hospitalized and then I got a clear diagnosis. A couple of months after that I went through a rough patch where lialda was obviously NOT working and I missed a lot of work that week...she got mad and this is what she said to me...

"Your not that sick you don't have cancer. There are stage 4 cancer patients that work full time jobs." she also went off on my for being on medicaid and getting food stamps and basically "using" the system...
 
When I was in high school I was often absent. There was one girl who didn't really like me even pre-Crohn's. One day, in front of the whole class, she asked me what I did at home all day. Rather than tell her I was writhing in pain and vomiting my guts out (this was in front of the whole class, remember?) I told her I had to sleep a lot. She said "Well of course you would - we would all love to just be able to sleep whenever we want."

What she said stung - but it really hit hard because it was in front of the class, and it really belittled the hell I was going through. At this point I was about 80 pounds, clearly there was something major going on. It still makes me mad to this day!
 
Lookame, that STINGS! Ouch. Was that the end of it or did you guys work through it? Did she ever apologize?
 
glory_h said:
Lookame, that STINGS! Ouch. Was that the end of it or did you guys work through it? Did she ever apologize?
Click to expand...

Funny thing is I was the one apologizing saying I could do better and work harder. What bothers me to this day is her mom was diagnosed with stage 4 lung cancer about 6 months after she went off on me and then she realized how much medicaid helps. They put all their assets into her name so her mom could get on medicaid and then after all that she went to everyone and statrted begging for money. Now I'm on medicaid and I know they take care of everything medically needed but she still goes to everyone and asks for money stating they have thousands in medical bills. Just bothers me that she went on and on about how I'm using the system and then she does the same thing. On top of it all she brags about how she just got $250 pair of boots and a brand new android phone and a new tattoo ect ect.

In the end we don't talk much anymore I hold a lot of resentment towards her for saying all that and she does basically the same thing. Do I miss her friendship...a little but at the same time if she were a true friend she would have been there at the hospital for me and stuff. *shrug*
 
Maria, you arent normal, you are BETTER than normal! I wouldnt even try to date after Stan. As for what an ex has to say...well, they are exes for a good reason arent they? Alot of times, people state things about us from their own fears. Thats very important to think about for all of us. There are two core emotions Love and Fear. From those come all others.

We ourselves must come from a core of strength, which is based in Love. Then, when people speak to us from their fears, it rolls off. Because with this awful disease, we are going to get alot of fear headed our way. We dont have to overcome THEIR fears, we must overcome our own so that their words dont hurt us.
:heart:
 
My first GI doctor said to me as he was giving me my diagnosis of Crohns " Ok, so you have Crohns disease, but don't get upset. It's not like you have cancer or heart disease, it just Crohns."
Um, ok. I know it is nothing compared to those but I'm still a little upset I just got diagnosed with a lifelong disease!
 
Thank you terriernut, true words you spoke :) It just hurt so bad I think because I had just had his baby and he said I didn't deserve to have my baby because I was too sick. ..( The begining of pregnancy the dr told me if I continue with it then It would cost me my life or my colon, I went ahead with the pregnancy anyways because obviously a mom becomes a mom usually when she finds out, you just get that bond to where you would do anything for your child and he knew that. Also he said he wished I would have died instead) then he said that to me. When I think about it I cringe...I have never told anyone this not even my best friend. But I do think it had some affects on me. Nothing too bad but ya know..
Lookame- Gosh just when you think you can trust someone.. That would have hurt so bad!!
 
Sbailey said:
My first GI doctor said to me as he was giving me my diagnosis of Crohns " Ok, so you have Crohns disease, but don't get upset. It's not like you have cancer or heart disease, it just Crohns."
Um, ok. I know it is nothing compared to those but I'm still a little upset I just got diagnosed with a lifelong disease!
Click to expand...

Yeah that's because they have never walked a day in our shoes. It's not like your whole day doesn't revolve around a toilet def changes your life forever.:frown:
 
Nobody has ever said anything belittling to me about my Crohn's but I was meeting a family doctor for the first time to just be established as a patient at his practice.

At the time, I was at the end of a yearlong very low calorie/carb diet. I had lost over 100 lbs just from diet and exercise. This guy had the nerve to tell me "When you gain it all back, gastric bypass is always an option."

Needless to say, I've never been back to him.

(nor have I gained any of the weight back)
 
No one has ever said much to me, but my relatives used to roll their eyes when I wouldn't eat the terrific raw veggie trays and dip they brought to family get-togethers, suggesting that a little more fiber was what I really needed. They just didn't have a clue.
 
Miss Underestimated said:
No one has ever said much to me, but my relatives used to roll their eyes when I wouldn't eat the terrific raw veggie trays and dip they brought to family get-togethers, suggesting that a little more fiber was what I really needed. They just didn't have a clue.
Click to expand...

omg. That's one of the most frustrating things about illnesses like Crohn's, LGS and UC, that people just have no idea about it, and just make assumptions that we lie around all day cos we're being lazy. My family has never said anything very hurtful about my illness, but it's the attitude.

Where they call me up with ''hey want to go to the pub for some pints and get fast food after?'' or ''want to go to the coffee shop for some coffee and pastries?'' and i'm like ''thanks but those places are my idea of a chinese torture chamber, with not being able to eat or drink the things i love'', and i just get that judgemental silence, then they're like ''fine, don't socialize...again.''

They do say things like ''stop feeling sorry for yourself, food isn't everything.'' Yeah, i'd like to see how they do going years without eating or drinking anything they like the taste of.
 
I know these posts are kinda old but I had to get in on this. My first GI LAUGHED at me when I told him how much pain I was in the day before they admitted me to the hospital for a week because I was so dehydrated I couldn't stand up straight! The nurses couldn't even start an IV in my arm. They had to use my hand and even that was a trial. The man never once came to check my progress during those 7 days of torture so now his practice partner is my GI. He checked on me twice a day, was genuine and has never once laughed at my pain!
 
"You're ALWAYS sick." - I've had two people say that to me, one of my sisters and my ex.

"What are you gonna have your kids on Medi-Cal too and have other people pay for them?" - My MOM said that to me about a week ago when my fiance and I announced our wedding date. As if she worked at all when she had kids or after we grew up. I'm 30 and she still doesn't have a job.

"You make yourself sick with your environment and what you eat." - Same sister yet she also has Crohn's. She just doesn't know a damn thing about it or me.

This could go on cause I know a lot of hurtful people and was diagnosed 21 years ago. I hate people but love you guys! :D
 
When we didn't know what was wrong with me, and the GP throught it was just gastritus and didn't want to do further tests for me, said 'Its all in your head, you have to go home and eat the right things!' It hurt so much that someone of the medical profession couldn't understand that I couldn't actually EAT let alone eat the RIGHT things because it ALWAYS hurt to eat, or I vomited. And by that point I had lost over a stone and a half in 1 month!!

Then its the friends who come out 'You look really great, loosing the weight has really helped you.. it doesn't look like your ill' I can't put it into words, but it hurts and annoys me at the same time. Oh and another one 'I wish I could lose weight like you!' just whaaaat?! I would happily exhange whats happening to me now with your weight you idiot! Grrrrr.

Oh and way back before I was diagnosed, (before the vomiting part started) I was pretty much in awful pain every day. I went out for NYE with some mates. I remember saying to my friend: 'I can't describe the physical pain to you' and her replying 'I can't describe the pain of loosing your mother' (her mother had died 3/4 years back) I can remember just being totally stunned and hurt that she would think that I was comparing the loss of her mother to that of some physical pain I had everyday. I had just wanted to tell her how I felt every day, how I WAS ill because everyone went on about how good I looked to have lost some weight. I don't like talking to her about it even now..having crohns that is. In case, in some way, she thinks I might be trying to compare her emotional pain.
 
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Coworker last week:
"What's wrong with you? You're being really quiet."
Me: "I'm just in a lot of pain today."
Her: "Well, what did you eat to cause that? Maybe if you'd stop eating stuff that was bad for you, you wouldn't hurt so much."
Seriously?? Me: "It doesn't seem to make any sense. The same thing eaten a week apart can have vastly different results. I don't think food has too much effect on it."
Her: "Well, just stop eating anything that ever causes issues, then you wouldn't have to worry about it."
Me: "Um, ok. Guess I should do an all-liquid diet. Thanks."
 
a few yrs ago i said something to the effect of my younger brother is being a pain in the a** lately. My dad screamed at me, ''do you think you were easy to raise? Dragging you around to doctors all the time? You were an absolute nightmare''. Yeah thanks dad, that wasn't hard for me or anything.
 
Why are people so nasty, esp family members and supposed best friends!!! Like Crabby I have hundreds of those nasty comments but here's a few

Sister - Turn that light off I'm trying to sleep, parents - but she has just hemorrhaged a lot of blood, sister - But I have to work tomorrow, tell her to go downstairs.

GI - when I was 14, don't expect to see 30 as constant flaring means cancer.
GI - when I was 15, don't expect to ever have any children.
Teacher - age 14, stand up and tell the class why you're always sick, are you contagious!!!
GI - age 25, stop asking questions I have a waiting room of people and by the way don't come back here and tell me you're pregnant, wait till your married!!!!
Brother in-law to my hubby just before wedding, do you really want to burden yourself with someone who is sick, think of what your life will be like!
I could write a book, but like most of you here I just laugh at these people now, they would think different as Maria said if they had to walk in our shoes.
Best wishes to you all
Gwen xxx
 
It always hurts the worst when a family members says something that is insensitive about the condition and medical predicament I find myself in. When it is someone outside the family, I tend to let the comment roll off and forget about it. I've had a number of times in the past with work where someone I believe was trying to provoke me with a negative comment about the gut issue. I recall just rolling my eyes. If they want to be hurtful that is there problem. I got to go home at the end of the day.

A family member, to remain anonymous, has a bad habit of sending the worst birthday cards that comment on my condition. Those tended to sting in the past. I suppose in a way it can be kind of humorous but I can remember hating to receive this persons cards. The insensitivity probably wasn't done on purpose, I like to think, just a lack of empathy was probably the root of the cause.

Probably my fear has less to do with what others say or think about my gut condition, but of what I might say. The condition can make me overly fatigued at times, causing me to word things oddly. As I like to joke, when overly tired from the gut acting up I don't even like to be around myself, it is hard to expect others to want to be around me.
 
Thanks for sharing!

I am new (2 years) into this Crohns thing and I have never felt so "different" and alone before in my life. I have suffered my way through so many flare ups and missed work only for doctor appt. so far. The hard part is feeling rundown at work and not wanting any sort of social life. The worst thing anyone has said is "Are you sick again! God you must be getting old!". This hurts but I realize she doesn't understand it. I usually am a very positive person so I have chosen to look at this illness at how lucky I am. I am lucky that it is not cancer. I am lucky that so far I have not required any surgery for it. I am lucky to have found a supportive site like this one!:ysmile:


maria said:
Ok so I'm sure not every friend or boyfriend or whoever has been totally understanding. What is the worst thing someone has said to you since getting a ileostomy/colostomy or having crohns/uc. I have had few bad reactions from loved ones but theres a few that plays in my mind over and over and is like a stab in the heart and leaves a bad taste in my mouth for having to have a bag.

I have 2:

One is my ex told me that he would have nothing to do with me until I got rid of my "Sh** bag" with a Ugh sound after and like a QUIVER. Gosh that hurt!

The other is I had just had surgery and there was male nurse explaining to my friend about my procedure and said something like you know shes not normal people like us.. That was the first time it hit I would never be the same. Scared me!
My friend said what do you mean she's not normal. She is very normal. He just said well you know what I mean.

Now I look at it as funny, they just don't know better and I love the people even more when they say stuff that's hurtful. I want to show them unconditional love right back. BUt I do admit it stings my heart a little.:rosette1:
Click to expand...
 
When I went to the ER for the first time with an obstruction the hospital doctor kept asking/accusing me of making myself vomit.
 
Oh god.. You poor guys! People can be so mean :( the thing is most people don't realize how hurtful they can be.

I went to see a new GI 2 years ago and the whole trip was a nightmare. I told him I was in constant pain, he told me to get on the scales and he weighed me, added up my BMI, and wrote down the number and circled it with his pen and tapped on it menacingly saying "we have to do something about this!" no advice on pain or meds or Anything! And he gave me a dietitians number.

Oh he also did a rectal check, I am used to GIs just checking with their finger, he with no warning rammed this huge frigging device up my butt and pumped me full of air. Then he took it out, I thought I had crapped myself.... He told the nurse to clean me up and she said sarcastically " great you always give me the nice jobs"

Hmmm also I've had family members think Im antisocial and lazy, but after they live with me for a bit they realize again that I am sick.

I did have one friend who laughed at me when I said I was getting a bag, and she also has said to me things like "oh you are so lucky to be living off your parents, and getting to do nothing"... I hate living off my parents it feels like crap! I would give anything to be able to have a normal life. But then again I am pretty lucky...
 
Gwen pippy said:
Brother in-law to my hubby just before wedding, do you really want to burden yourself with someone who is sick, think of what your life will be like!

Gwen xxx
Click to expand...

WHOOOAAA! Those other things are bad, but if I were you I would NOT be speaking to this douchebag. Sorry for these things said to/about you :(.
 
When I was in infants school one of my teachers had to put food through my tube to feed me and she would say to me "you always have to make more work for me when I do this I might as well as forget about you". one of my so called friend saied to me "what is the point in you even being alive, the doctors should have just let you die". :( :(
 
How can you have Crohns You are FAT.

My mom just last week: When you were diagnosed I said to myself "Thank god now that she has Crohns NOW she will get thin. But you are still fat how can you do that?"

My mother has a thing with overweight people can you tell?
 
My Mum didn't mean anything by it - but she expressed surprise that I didn't stink a little with the Stoma.
I must remember to burp my bag in her presence one day!! Lol
 
Scifimom said:
How can you have Crohns You are FAT.

My mom just last week: When you were diagnosed I said to myself "Thank god now that she has Crohns NOW she will get thin. But you are still fat how can you do that?"

My mother has a thing with overweight people can you tell?
Click to expand...

Oh my god. My dad has a similar thing. He's great, but for some reason he seems to think that it makes you a better person if you look like you've been starving. It sickens me because I have always been very slim, I sometimes wonder if my dads love is conditional to weight.
 
You have crohns disease... Does that mean you have to wear a nappy (or diaper for my American friends)

Oh god, you are letting us down again! (I had just come out of hospital and couldnt attend a family gathering)

You don't look ill

Does that mean you are disabled or something?

To name a few.... I should have been born a turtle with the thick skin I have :)

On the plus side, my TRUE friends are lovely and my bestie even organised a "crohns friendly" night at hers one night.. lots of lovely bland food and no fizzy drinks! Everyone I hold dear took part and I hope they understand a fraction of what I have to go through...

Just goes to show there are some nice people out there

Much Love!

Sam xx :hugs:
 
HorseLover, I am sorry you have been spoken to like that.. No one deserves that..
WOW, People are so cruel, vile, selfish and insensitive.
One day these people will stand before God with these comments. You are the apple of his eye! Whatever happened to treating people the way they like to be treated..
 
Reading these things pisses me off. I'm sorry yall got to deal with other people ignorance. Things said to my husband about his apperance & CD:
His grandpa/adoptive dad when my husband lost weight due to CD : "Boy, I think you have a problem." Husband "What?". Grandpa/dad "We think you have a drug problem."
Grandpa/dad "Youre just lazy. Its a bellyache get over it."
Biodad: "I work & I have a herniated disc. YOU 'just' have Crohns."
Grandmother/mom: "You just look horrible RC. You are so pale & about to blow away."
His cousin ranting because he "pays for RCs medicade & foodstamps: " I gey off MY ass and I build a life for MY kids."
The list goes on & on & on. Then theres the looks he gets at family get togethers when he has to eat only certain foods. They roll their eyes. They have that "puuuhleeze" expression. Like hes being a bratty 3 year old and Im babying him. Maybe I do but he deserves it damnit! They sure as shit aint steppin up & supporting him. So they can kiss my butt. I love my husband. And honestly I think the only reason they tell him he looks bad is because they know hes sick. I wish I could smack some scrupples into them.
 
All of the things like this do hurt bad, but I have come to realize that when someone is rude and inconsiderate that in the end we are really just automatically better people than them, and should feel more powerful overall. I have always disliked most people, even before Crohns... I prefer peace, but have had my share of upset times due to things said to me. I continue to practice what I preach regardless of my strong feeling of wanting to punch some people in the throat : )

My brother during a fight: "At least I'm healthy and graduated high school" (Um... It's not my fault I was sick completely through 11th grade? and now enrolled in COLLEGE to get my diploma anyway. Idiot.)

Aunt: "Your scar kind of looks like you had a baby" THANKS. Will definitely be pullin the dudes on the beach if they think I'm 18 and have a child at home, right? ; ) ugh...

Friend/partner: "Is a bag a possibility for you? That might make sex a little awkward" (supposedly a joke, I say BS but he isn't in my life anymore anyway.)

Then of course relentless bitching from my parents in my presence about the cost of my care. But, whatever! If the knew, they would shut their mouths and attempt to apologize.
 
My partner of 14 years left me abruptly after nearly a year of agonizing pain that we learned was actually a stricture. Because I have no family, she agreed to help me post-op. When I got home from the hospital she told me that I was a burden and that she wished I hadn't asked her for help. :(

Sometimes I think ''if only I didn't have Crohn's we would still be together', but then I remind myself 'I'm happy that my Crohn's showed me the true character of this person I thought loved me'.
 
OnMyOwn said:
My partner of 14 years left me abruptly after nearly a year of agonizing pain that we learned was actually a stricture. Because I have no family, she agreed to help me post-op. When I got home from the hospital she told me that I was a burden and that she wished I hadn't asked her for help. :(

Sometimes I think ''if only I didn't have Crohn's we would still be together', but then I remind myself 'I'm happy that my Crohn's showed me the true character of this person I thought loved me'.
Click to expand...

That is very harsh... but yeah, there are always people out there who are truly good hearted, it just takes time to find them. I've been learning these things slowly : )
 
had an intern come back to my room after my GI did his rounds and proceeded to inform me that I "had to learn to l;ive with the pain." I was passing out from loss of blood( ended up getting 4 units that night). And I only weighed 118 lbs, down from 155.

My wife read him the riot act about how I never complained about the pain until it was to late and then went to my GI and told him what happen. Never came to my room again.
 
I spent basically an entire month in the hospital after my first year of law school and people still don't realize that I actually am sick. Keep in mind these are law students, who are supposed to be relatively smart:

"Maybe if you actually looked sick, people would believe it when you say you are. When you look as healthy as everyone else, people aren't going to believe you when you say why you missed class."

"Oh, Crohn's? Yeah, I feel like everyone has a little IBS occasionally. I hate when I get the runs."
(How do you explain the difference between IBS and IBD to people who won't admit they're wrong?)

"Get over it. It doesn't seem like that big of an issue."

And my absolute favorite: "Why do you always bring toilet paper and hand sanitizer to the football tailgate? It's a little weird."
 

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