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Crohn's Disease Forum

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Given the kinds of things my mom and sisters say to me, I haven't told more than two other people about my diagnosis.

I have a sister with rheumatoid arthritis that went on at length about how I was "lucky" to have crohn's because it is "more glamorous to the media."

My other sister tells me almost daily that she'd be happy to have crohn's if it would "make her skinny" like me.

And my mother is the worst. She had just picked me up from a doctor's appointment where I'd had to switch medications because I was still throwing up and having constant diarrhea and I felt horrible. I made some joke, like "I'm the picture of health" to which she replied, "You are healthy. If you didn't want to be sick you wouldn't be."

Not to mention all three of them make bathroom jokes constantly. I was scared to death to get my first colonoscopy, and they spent the whole week before the procedure making up songs about them and then proceeding to tell people we knew that I was having things shoved up my butt.

Thank goodness for my dad. He's the only one I talk to about any of this now.
 
Just today I got told by a co-worker "you've lost weight. Looking good!" Yeah, maybe I am, but don't assume it is due to me trying to lose. I have had 5 boughts of stinky "D" and been doubling over in pain all day. Let's see how much they like that!
 
Haha another one today. Sat in the hospital waiting for bloods was like an hours wait. Im really poorly at the moment so I look dreadful big circles, pale skin, jaundiced eyes. I was dozing off waiting and the old lady next to me pipes up with "oooo i really thing you should not have so many late nights tut tut your falling asleep" i was like wtf? I said who the hell are you to judge? For all you know I could have Cancer and three weeks left to live!
Off course she probably went home and said a drunk drugged up youth assaulted her. Hahaha
 
Wow glad I found this I was just ranting today how Ignorant my boss is and how I am having a hard time bitting my tongue not to tell her off. Every time she has a little upset stomach or runs to the bathroom she tells me she knows how I feel. The other day she wasn't able to eat all day and said how she know exactly how I feel not eating because she was dizzy and light headed. She went a few hours one day, I eat one meal every 24-30 hours every day for 17 years now. Then when she was told that I was having a bad day in alot of pain, she texted back "from what". she has known me my whole 17 years having crohns, arthritis and fibromyalgia as well now two crushed disks in my back. But the thing that made me so angry is when she bet me $5 in front of all my other employees to eat a burger with hot sauce and hot peppers on it, and laughed and said then lets watch your run to the washroom.
Never been so angry in my life. I hate ignorant people.
Keep smiling even though its so hard somedays.
 
Just went out for a Valentine's day meal with my boyfriend. Feeling good, been on Pred for five days and finally able to actually eat a meal for the first time in months. Dressed up, was looking forward to being able to forget about Crohn's and have a nice night.

Arrived at our favourite restaurant and found that, as it's Valentine's, they're doing a special set menu. The only thing was that everything in the starter section was something I can't eat at the moment as I'm on a low fibre diet- bruschetta covered in tomatoes, oniony stews, etc. Fair enough, it was my decision to eat out and I can't expect them to cater to weird Crohnie needs, so I asked the waiter politely if it would be possible for me to get just some bread, or maybe something from the normal menu if they had anything out back. He said he would ask his manager, I said 'Sure, thanks', and waited for him to come back.

Manager arrives and the conversation is as follows.
MANAGER: Hello, we're only doing this menu tonight. You want something different? You have an allergy?
ME: Yeah, I just wondered if it would be possible to get some bread or Brie or something? Or skip the starter and have a discount? It's just that I can't eat any of the things in the starter section.
MANAGER: Why can't you eat what's on the menu?
ME: *not really willing to start talking about Crohn's in a busy restaurant* Er...
MY PARTNER: It's a dietary thing, she can't have any of the starters.
MANAGER: Why? Is it an allergy? Why can't you eat this?

He then stared at me accusingly, expecting an explanation. By this point everyone at the tables near us was also staring. Nothing like having an audience! Feeling upset, I excused myself and left the table, at which point my other half got quite annoyed with him. No idea what was said as I was off having a paddy.

The manager later came back, apologised, explained that he 'hadn't intended to make me cry' (well, thanks mate, that's a comfort) and that the only reason he was allowed to depart from the menu was if a customer had an allergy, so he had to ask for details.

Just...what? Nice Valentine's meal :\
 
That is horrible Weatherwax :( I honestly would have walked out with my husband right behind. Glad he apologised :hug:
 
I've gotten a variety of comments concerning weight.My favorite is when I saw a friend my first trip out into the world after resection surgery and he asked me if I was contagious.He was serious!He had a couple weight comments before the contagious blast too.
 
dave13 said:
I've gotten a variety of comments concerning weight.My favorite is when I saw a friend my first trip out into the world after resection surgery and he asked me if I was contagious.He was serious!He had a couple weight comments before the contagious blast too.
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You should have said "Yes, highly. Now come here and give me a big hug!"

:devil:
 
jwfoise said:
You should have said "Yes, highly. Now come here and give me a big hug!"

:devil:
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I wish I would of thought of that jwfoise! I guess I was a bit stunned for a quick comeback,which is unlike me.I went to my GI yesterday and while in the waiting room in walked a guy I use to work with.He knows I have crohn's and this is the first time we met since we worked together.I could tell by the look on his face he was shocked by how much weight I lost,but he didn't say anything.He walked over and said "Dave,you old b#!#@ard,good to see you!" and gave me a big hug.He asked me how I was feeling and was sincerely concerned.It made me feel so good.I was called by the nurse while I was answering his queries and didn't get the chance to ask him how he was doing! I'll send him a message on facebook later today to let him know how much I appreciated seeing him and his concern for my health.Sorry for the rant,I thought I would share that experience from yesterday.There are good people out there! :dance:
 
My team leader comments on a daily basis about how sick I look or don't look. Eg. "Oh.. having a bad day today, you have bags under your eyes." or "Oh wow, you're looking good today! You must be feeling better!" Umm.. no, I literally always have bags under my eyes, it really only depends on how much concealer I feel like wearing that morning haha. She also regularly makes comments about what I'm eating for lunch on a particular day and how sick she thinks it'll make me. Nope, this McDonalds cheese burger with literally only the bread and meat patty won't make me sick, I'm pretty sure it's my freaking CD that makes me sick and this is all I can digest. She should know better too, I've been working with her for 4 years and her mum has UC!

I also fairly recently went to a new GP for a GI referal and he asked me if I was sure that I have Crohn's because people with Crohn's are usually not overweight. Yep, pretty sure I have CD, you idiot!
 
I go into work today.I'm not having a good day to begin with,I put on the happy worker face.The first thing I hear is "Your getting even skinnier" from a co-worker.I let her know I gained two pounds,actually.She cackles likes it's the funniest thing she heard all day.

I feel pretty good.I'm 5'9" and 167 pounds.That is well within my height/weight index.I have lost 30 pounds since my surgeries.I went down to 164 and seem to have plateaued at 167-168.My diet is good and I am in remission.I feel I am at a healthy weight.I have lost a lot of muscle,that's what they probably notice and call it 'getting skinny'.
 
Awesome you are feeling better Dave! Hope things continue to improve for ya :)

I am kinda pissed with my mom, she just doesn't get it. Keeps guilting me because I haven't been able to visit. She lives in a ranch in the middle of the country, nearest town is 15 mins away. Sorry, but if I have to go, I have to go and I am no about to pull over on the side of the road with -40 windchill to poop....
 
Thanks Kero.I can relate to the cold weather and not wanting to risk 'running for the woods'.I hope it works out with your Mom.Mom's are a natural with guilt.
 
I love all these ignorant comments since we all share many of the same experiences.

Here's my addition to dumbass comments and unsolicited advice...

A doctor once said I was just going to so many doctors to find one to say what I wanted to hear. Nope... just wanted help (before diagnosis and when going to psych did nothing), knowing something was seriously wrong with a 50 lb. weight loss.

Another doctor said I knew too much about my disease, CD. Really? How can you know too much when they know so little? You have to be your own advocate.

In the hospital with yet another bowel obstruction, the doctor said I was depressed. Yeah... wouldn't you be if you were here every few weeks?

A nurse in the ER asked what I had "done" to cause this flare? I was on vacation having a great time.

A surgeon took out 3' of small bowel yet said Crohn's was caused by "nerves." Yeah... that's why some 2 year old kids sadly have it.

So many medical personnel telling me what's what when I have had CD longer than they have been on the planet.

A surgeon told me we were having a circular conversation when I asked legitimate questions the he couldn't/wouldn't answer.

A gynecologist refused to consider what was wrong with my female parts because I have Crohn's and those patients are "nervous." Turned out I had a tumor and severe edometriosis. He never apologized.

My GI doc at the time said he wasn't going to hold my hand after the ERCP he had done got screwed up... by him. So no answers for my new symptoms. I didn't need his hand, just needed an answer. He no longer was my doctor after that... wouldn't let him touch me. Idiot.

Family/friends comments are too numerous to name, but here's a few standouts...

I should just "count my blessings." Not offering their help of course.

My ex stating it wasn't his fault I am sick, and what would I have done if we weren't married? I still would have been sick. I cannot print my answer in a public forum.

Think of ALL the people with worse problems. Oh yeah... that helps sooo much.

I mostly hate the medical personnel that completely lie to you, somehow thinking that you haven't gained some medical insight in 45 years. I generally know more than they do. Don't say anything or say, "I don't know." But do not lie to me.

And please, people. Would you all learn to spell Crohn's? It is not Crohn's. A little thing, but I lose confidence in your knowledge base.

Since I have had 4+ decades of this nonsense I no longer explain. I can read these people within a few minutes, and call them out now. I have become a not-as-nice patient. No apologies. I am not Pollyanna after all of this.

Okay... done with my venting. Thanks to all... Michele Lea
 
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Yesterday I was joking around with my course mates, I get along with them because there from my course, and were a small group, but I know when this year finishes I won't ever see them again.
Anyway, they all know the extent of my illness - how I used to have a bag etc. It had come up this one time. Anyway, this one girl in particular was late for a presentation meeting, and I'm normally late for everything and everyone, so rather jokingly I said to her; 'On you've got my disease!' Her reply;Which one? I definitely DO NOT have THAT one..' my other 2 course mates, her friends, found this absolutely hilarious. She then paused it and followed it with 'Oh my god, can you catch it?'

I had an overwhelming urge to ask; can you catch stupidity?? Sometimes I really dislike people
 
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I'm sorry gracifer.
My reply to "can you catch it" would have been.................
Yes, yes you can. Now come on and give me a big hug.:hug:


Sorry I'm a bit mean.:rof:
 
To be honest I wish I had, would have wiped the smug face of her. She's also the same woman (she's 27 for crying out loud!!) who told me she knew how it felt as she used to have asthma.. Er..sure.
 
seaofdreams said:
I also fairly recently went to a new GP for a GI referal and he asked me if I was sure that I have Crohn's because people with Crohn's are usually not overweight. Yep, pretty sure I have CD, you idiot!
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RRRRRRRRRR!!!! I get this from doctors all the time! The whole profession is in denial about overweight.
 
Dave13... my own brother asked if his kids could get it. Didn't tell him about the proven genetic factor. Same family? I wonder sometimes. I might be the only sane one, sick or not.

Take care... Michele Lea
 
HopefullX3... this woman could be profiled as slightly psychotic, not just ignorant. Anyone who enjoys your discomfort is seriously messed up.

Take care... Michele Lea
 
Over the 45 years with Crohn's I have actually forgotten much of the unsolicited, dumbass comments. Used to hurt, then I would explain, the hole was dug deeper, I couldn't understand, etc. Now I choose my battles and don't waste energy on the rest.

I do want to say that I remember the kind comments very clearly since they are a rarity.

I was in the ER with a severe bowel obstruction, brought in by ambulance. As you all already know, everything that wasn't nailed down was coming out at the speed of light. My gown fell off, but I was so sick I didn't care. A nice young resident came in, and I looked up and just said that I had lost my dignity years ago. He said anyone who lives with CD has plenty of dignity. And I will never forget him.

Michele Lea
 
It is bad enough when friends and acquaintances make stupid comments, drives me insane when the so-called professionals don't have a clue, but family members, who are supposed to be our biggest allies, well, I just don't know what to think anymore.
Doug, my husband who has had crohn's for probably years before he was finally diagnosed, has had some very interesting comments, especially from my family. My biggest complaint is unfortunately from my own mother (I sure hope I don't "grow up" like her.) At 84 she naturally, has a lot more aches and pains, and likes to call me and complain about all her woes. And I don't blame her, she has had a tough life, but with relatively good health. But lately, she has been driving me nuts, because she will carry on and on about tiny little complaints, but literally told me (both Doug and I have had a myriad of health problems) when I had a new health problem this week that she didn't even want to hear what it was. This next one was equally uneducated and uncaring. After spending forty five minutes telling me how sick she was a bit ago after eating yogurt she knew was spoiled but ate anyway (???) I said something about, yeah, try feeling like that all the time like Doug does. She told me she was "way sicker than Doug." It makes it hard to talk to my own mother.
 
SandyUte... Your story might be humorous if it weren't so sadly familiar. (And I'm pretty sure that yogurt was spoiled... kind of like cottage cheese and sour cream are spoiled. Too funny.)

The most common story I get from others is when they get a stomach bug. And then they say they thought of me while on the toilet. Nice. I say that's how I feel pretty much 24/7 (up even when they are asleep, Crohn's being no respecter of time). And they almost always say, no way, how could you possibly function? Exactly. I rest my case.

Annoying as hell when it's your family, certainly no support there after listening to your mom with her stuff.

Somehow we either laugh, tune them out and don't expect support from those who cannot give it.

Best wishes... so glad your husband has you.

Michele Lea
 
Thank you Michele, but I think I am the lucky one to have Doug, he puts up with me, and my emotions from my family, and sick as he is, he takes as much care of me as I do of him (and more). We both have chronic illnesses, and I don't think anyone can understand that 24/7 hour 365 day a year business unless they go thru it themselves. Good luck to you and yours for keeping things as manageable as possible.

And yes, I didn't catch the irony of the "spoiled" yogurt until your comment. Gave me a good laugh. (My Mother ate it tho saying it tasted bad, silly lady.)

And with all these silly comments received by thoughtless people at times, sometimes the best thing we can do is just laugh at the situation (or we would cry.) Humor is good for the soul.:ghug:
 
SandyUte... Then both you and your husband are special, having each other.

I completely believe humor is essential, especially with a disease that tries to rob you of that very thing. Courage and grace complete the golden triad. My humor leans toward left-of-center after decades of the unbelievable. It works for me.

There are days when it gets overwhelming and I don't do it as well. That's okay as long as I don't get stuck there.

About that yogurt... I watched a show about how it comes to be. Very interesting. And cheese, a lot of cheese only gets its' flavor from... wait for it... mold. Spoiled for sure, right? (You have to go to your happy place with some people.)

I wish you both better health... if only. Michele Lea
 
It does get overwhelming at times (a lot of times), doesn't it? And left of center works for me :ybiggrin:

(I love mold)
:lol::rof::mademyday::poop::ybiggrin::ybiggrin:
:ybiggrin::ybiggrin::ybiggrin:
 
A coworker said to me "wow, that sounds like an expensive disease. At least you can afford it. What are poor people supposed to do with that disease?"
 
I'm not really sure if this counts, but I'll contribute anyways. :)

When I went to the clinic last for an appointment with my GP, I was ordered a stool sample kit from my GI doctor and as one of the people behind the counter at the lab handed it to me, there was another girl in the back snickering at me. A nurse. Laughing because I was getting a stool sample kit. Yeah because I'm not embarrassed enough about it myself... :yrolleyes:
 
Everly said:
I'm not really sure if this counts, but I'll contribute anyways. :)

When I went to the clinic last for an appointment with my GP, I was ordered a stool sample kit from my GI doctor and as one of the people behind the counter at the lab handed it to me, there was another girl in the back snickering at me. A nurse. Laughing because I was getting a stool sample kit. Yeah because I'm not embarrassed enough about it myself... :yrolleyes:
Click to expand...

This reminds me of the time when I dropped off a sample and people physically moved a step away like a wave of water when they found out what it was. As if I would infect them by proximity. Thanks so much, to them, for making me feel like the sample itself.
 
So, this week I learnt that my workplace is a hotbed of idiots. Some of my responses to these people were not very polite, which I'm not proud of, but I have heard so much of this over the past year that I've given up being polite... it just seems to encourage them. Some of them are so daft as to just be funny.

HR manager this week (who knows all about my Crohn's and harangued me for a year while I was undiagnosed because she thought I was taking too much time off work): *looks at my Pred-y moonface and pregnant-looking belly as I come out of the bathroom, having just had a very painful five minutes* "You look really well, Weatherwax! You've put on so much weight... you must be better."

Colleague, also this week, upon seeing me eat a Mars bar: "How do you stay so skinny? I bet you can eat whatever you want. It's not fair."
Me [sarcastically]: "I have an autoimmune disease, it's the latest hot new thing for keeping thin."
Colleague: "You shouldn't joke about that. Some people really do have autoimmune diseases and they actually DIE of them."

Another colleague: "Hey, look at this company who've booked out one of our function rooms. Look what they sell. Co-lo-sto-my bags! I Googled it and do you know what they're for?" He launched into explanation, concluding with "I bet it smells in there now."
He was swiftly re-educated.

Mother-in-law: "You look tired."
Me: "Yeah, I am a bit."
Mother-in-law: "Is it because your Crohn's is back?"
Me: "No. It's still in remission. I've just had a long day."
Mother-in-law: "Is it because you're off the steroids?"
Me: "No. Sometimes I'm just tired. You know, like normal people."
Mother-in-law: "Oh. Maybe you've been doing too much."
Me: "Yeah, maybe. I worked until 5 today, then went to an exercise class. Body Balance - it's really good -"
Mother-in-law: [cutting me off] "You shouldn't be doing that stuff. You're not well. No wonder you look tired."
 
I went to a pre-surgery for multiple fistulotomy and seton placement yesterday.I jumped through the hoops and did all the tests required.I was finishing up the 'pre' stuff and the nurse says,after looking over my vitals,"Besides having Crohn's,You're pretty healthy". She stopped herself and started to apologize.I laughed,because she was right.I told her not to worry about it,we have a sense of humor too.'We',meaning fellow IBDrs and I said others may not be as lighthearted as I am,but you did not offend me.

Keep the faith!!! Do not go quietly into that goodnight....
 
the one that hurt the most was: you don't look sick, you're glowing :( after sleepless nights and pain out of this world! still hurts when thinking about how many times I heard that. apparently I looked ravishing when on a flare ..... some still think im looking good considering my illness.
I don't like to feel sorry for myself and I always tried to deal with everything without complaining a lot(my ongoing specialist always laughs about being a stubborn person with extremely high pain threshold)
my friends and family were beyond supportive. my husband would have sold the house to fix me if necessary. I always thought what I would have done without him, small kids and all. im not out of the woods yet but much much better, humira gives me wings :) yet to hold a job(haven't been working for nearly 9 years now)...but looking forward for the future.
I had friends asking for morphine and heavy stuff from me :) or steroids :D
 
My mum said gosh u lost a bit of weight but u still need to lose more my reply I'm trying mum and when my hair was falling out from alopeica get a wig u look like a plucked chook I wanted to sooo slap her as it was I was very depressed cose if it lol sum people just don't have a clue
 
A while ago, when I was sitting in the waiting room to get a CT scan, I overheard the nurse say to another nurse, "just be glad you don't have to drink these three barium solutions."
 
In my last admission for kidney stones a doctor said to me "dont take too much codeine it can constipate you" I have an ileostomy..

Then he examined my stomach poked my bag and said "can you take this off easily?"
I mean yeah but do you want to get covered in shit? Lily shoots like a fountain.

Then he look at it and said "that output all looks normal to me" and I was just thinking hmm do I trust your knowledge of an ostomy if you wanted me to take it off to poke my tummy and warned me of constipation. I think not.
 
I'm venting for my poor husband. :)
He complained to me that I talk about poop too much. I told him that with a couple of preschoolers and Crohn's "poop is my life". He then reminded me that poop is HIS life. he is a plumber, trys not to think of all the poopy stuff he is working on at the time and when he comes home he doesn't get to escape from the poop.

I'm going to have to start posting my little poopisms here and spare the poor guy. He IS very supportive and helpful but he just doesn't want to think of the poop part of it. He also doesn't want me to share the following that happened Saturday:
I fed my daughter some chocolate covered sunflower seeds (they also have a candy coating like M&Ms) and her next poop was watery and neon green with sunflower seeds in it. That is kind of cool as far as poop goes but I guess I can understand why he'd rather not hear it. LOL
 
AndiGirl said:
This post is meant to let off some steam. There are many of us who are stressed out over being in pain, along with being misunderstood. Feel free to add your comments, two cents worth, and please share comments that were directed to/at you as a sufferer of CD.

My thoughtless brother-in-law- "You can overcome your disease if you just try harder."

A pharmacist at my medical center- "Oh you have Crohn's Disease. I feel sorry for your husband. My ex-wife had that disease. Man! She was hard to live with."

A co-worker- "Your husband is great, he is standing by you through this disease." Please understand that she just went through a very ugly divorce. My husband knew that I had the disease before we got married.

My mother- "I don't know why you have that disease?" Never mind that it is on both sides of my family. My answer to her stupid question/statement, "I decided to order it from the catalog."

My female cousin- "I wish I had the disease. I wouldn't have to worry about my weight."

A doctor (before I was diagnosed)- "I think the pain is mostly in your head. If you want to feel better, you can. You need to change your thinking."
Click to expand...

When I told my supervisor I had Crohn's, her reply was "oh" - well we have students who have that and they do fine. You should too."
 
My GI's receptionist's recommendation when I tell her that am concerned about being dehydrated because I have to take a colonoscopy prep I know makes me vomit and can't have anything to drink but prep the morning of scope that is booked at end of day: "Oh, you know what you can do that will really help a lot; take extra laxatives starting 3 days prior to the scope instead of just the prep for the 2 days". Yes, she was being 100% serious. :ybatty:
 
I had a nurse try to give me Metamucil rather than asacol when I was in the hospital once. ???? what?
 
Oh I hate the 'so what do you think it is" question
Or the 'now you are eating lots of leafy greens aren't you?" (usually with a frown attached)
 
Oh and I've had the 'It can't be serious cause you're not dead yet.' Yup, thats really good medicine right there...
 
I would put this under humerous and confusing.I work in a small natural food store.We have regulars I've known for years.I recently had a fistulotomy and three seton placed and am just back to work.One of the regulars comes up to me and asks how I'm doing.He knows about my resection and other CD 'stuff'.He asked about Remicade and I told him about infusions.I'm pretty open when it comes to answering what I can about CD and what I'm going through.I figure it helps to educate the 'normal' masses.

Each time I would answer a question,he would say "I wouldn't wish that on my worst enemy!". He asked a lot of questions.I wanted to say,"I don't need to be reminded how much this sucks,I really don't". I know he wasn't doing it intentionally.

There are some pretty evil people in this world and CD is just the start of what I would wish for them.
 
@mygutsucks - that is why a receptionist should never give out medical advice!!! I had some back pain and went in for an xray. A therapist (not a DR) read the Xray in the office from computer and said there was stenosis all over the xray. She sent me for a scan (very expensive by the way). I had to wait for results. It was over the holidays and also my dad's funeral. The whole time, because I googled it, I visioned myself in a wheelchair and a life of misery. Seriously - I saw that xray - it was severe! Didn't hear back and finally called to ask what the heck was going on. Very light and breezy she replied "oh that was just a shadow on the xray - your scan was normal". SERIOUSLY? I was so worked up for a month and not even a phone call came her way??? NEVER will I EVER listen to ANYONE but a Dr. and even then I get 2nd opinion if its serious. I still cry just thinking about it. All through my father's funeral I was carrying this weight on my shoulders. GRRRRRR!!!! Like that didn't add to the flare I was having!
 
@SandyUte - you are so right! I think they should all have to drink that prep before becoming GI doctors. That is the dose I would like to see them all have to have had! Maybe then someone will come up with a better one!
 
I wrote a while back about how awful my boss was making fun of me and daring me to eat things so she could watch me run to the washroom. Well funny thing is she has been calling in sick constantly lately so I have been told because I am still not able to work. She seems to think she has IBS and can't work with diarrhea. I wanted to die when I heard this. I suffered daily with severe pain, vomiting, diarrhea and fainting from malnutrition and still never missed work and she was the one that said in not going to get any better I better get use to it. And also said I was an adult and should be able to deal with it (my depression) that is. From all my life issues. Wow karma is a real bitch isn't it.
 
AndiGirl said:
A pharmacist at my medical center "Oh you have Crohn's Disease. I feel sorry for your husband. My ex-wife had that disease. Man! She was hard to live with.
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Wow, that is nasty! What a lucky escape the ex-wife had :)

One of the worst I had was:

"For goodness sake, you are an adult, surely you can hold it"......


..........five seconds later I pooed all over their floor.


I took to wearing incontinence pads after that little adventure.
 
Last week from my sister-in-law "You just need to think positive". She also does not believe in getting sick or taking medicine. Seriously.
 
Dietitian telling me that I still need to eat fiber even though my doctor forbade it. Not forever, but usually he'd deep six the fiber for six months or so after I'd get out of the hospital after a flare. This was a really regular occurrence, so I never got to eat much cabbage or broccoli during the year.
 
From an acquaintance during a school sports practice "I would never give my son all that medicine! You need to come to my church's healing room so my minister can lay his hands and pray over him. He healed his son of Autism, you know! Goes to an Ivy League college now!"
 
Overheard my grandfather telling an extended family member that my gastro
hadnt really been "able to find anything" (AFTER my Crohns dx) and that it was the same situation as with my grandmother who has pains that the doc seriously thinks are bad gas pains... because gas pains and IBD are exactly the same thing dontcha know :yrolleyes:
 
This is something I get far too often

Other person - how are you doing?
Me - not so well today
op- what's up
Me - I have crohns disease and I'm in a flare up
Op - oh. Have you ever seen a doctor about it?

Gee, never thought of that.. Obviously I took a knife and took out my own intestine..
 
Two common ones:

"You're just stressed. You need to not panic, then it will calm down."

After I say that I'm not eating temporarily because I'm going out:
"You can't stop eating, that won't do you any good."
Yeah, it'll do me a lot better to poop my pants on the train! Not eating during and shortly before going out is the only reason I feel safe enough to go out.
 
I had a manager at work who knew I had bowel & bladder disease. I once came out of the toilet & she remarked that I'd been 'rather a long time'...er yeah! In the hope of avoiding future comments I turned around and said it takes a while to change a catheter. Over the next few weeks I caught her stealing furtive glances toward my tummy area. I was paranoid I'd spilt some food, looked silly in my clothes etc. Finally it hit me that she was looking for a bag!!! Unbelivable I really didn't know whether to laugh or cry.
 
I do not have a Stoma but heard stories about going through TSA with the body scanners. I am the type of person who would have said, " here let me take that off so you can get a closer look."
 
I got half a dozen 'you lost a lot of weight' this week and a couple 'you're so skinny'.Uber cliche's.

Yes,I lost a lot of weight,eight months ago after my resection!! I'm not skinny,I'm 5'9" and weigh 160 pounds.I may be a couple pounds lite,but not many.

My avitar is a pic I took before my fistulotomy a little over a month ago.It is how I currently look...I'm not skinny.

Americans are so use to being overweight,not all,but more than not.I am by no means lumping people with legitimate health issues and those who gain weight through meds into this statement.

I just get tired of overweight people,who are capable of remedying their situation,call me skinny and think they are fine.I feel like saying "I'm not getting skinny,by the way,you are fat and getting fatter".

Sorry if I offended anyone.I needed to vent. :eek::eek::eek::eek::yfaint:
 
Everybody at work knows I have Crohn's disease, and yesterday a woman at work said to me 'wow, you look really pale and washed out, what's wrong with you?'

I felt like saying......Crohn's disease, duh!
 
Oh my GOD! Went in for flexible sigmoidoscopy (sorry can't spell it) last week. It is a teaching hospital. I have the chief of surgery performing it. Her student who is now a general surgeon and doing his fellowship came in and the paperwork all said colonoscopy. I said - what are you doing to me today because I haven't done a prep. He said "colonoscopy". I was like...noooo...you are doing sigmoidoscopy. He looked at the paper and said "no, colonoscopy". I'm like - dude - double check that. I know what I am supposed to have done! So he looks at notes and then said "oh yes...you are right - its same paperwork though so you can sign this one". I'm like "nooo - change that paperwork first". So he crosses it out at the top and writes in the correction on top. I did sign it and then my Dr. came in and I told her to make sure he uses the right scope because I am sure my sedation won't be the same for this 5 minute procedure. She was pissed and had them draw up new form for me to sign. Imagine if I hadn't said anything? I have strictures and this is a student. I would have been in so much pain and probably awake! This is a top Boston hospital by the way. We are all so vulnerable. This isn't humerous...but I wasn't sure where else to vent. I guess its not so bad really but I just didn't like his attitude.
 
Thank goodness you caught that Spingirl. I'm not sure about others, but I'm finding the healthcare rendered these days is really lax. Too many mistakes are being made, no one, and I mean no one, is fussing about anything. I tell all new people who approach my veins, If you hurt me I will hurt you. Funny how delicately they approach the veins after that. Usually with minimal pain. I argued with staff about blood work that DID NOT need to be done. "It was done last month". she...I don't think so. me....I know so, would you check with the lab please. she...turns in a huff and places a call to the lab. Did not apologize or anything, just didn't mention lab work again.
 
Yes JudithC - it isn't the same at all. My son went in for routine yearly physical. I called to find out how bloodwork was. They told me he didn't have bloodwork. I didn't go in room with him so I figured he just didn't have any. I asked him and he said "mom - I know they did bloodwork - I felt the needle go IN my arm and saw them draw the blood". This reminds me...I have to call them again to see what the heck happened. It all comes down to $. They are all rushing to fit in as many billable procedures in a day that they can. We all make mistakes but healthcare mistakes can be deadly. You will NEVER hear them apologize. I think they train them not to do that. It would imply wrongdoing and result in potential lawsuits. And rightfully so because today everyone is "sue happy". Its just a crazy world. Getting crazier. Or maybe I am just getting old...
 
Hi JudithC,I'm from Maine. I was wondering what hospital(s) you go to.It's good to get feedback on 'local' places. I go to St.Mary's in Lewiston for my infusions,my pcp is there..My colorectal surgeon and GI are part of CMMC.
 
HI Dave 13, neat to find another Mainer here. I do my Crohns work at Southern Maine Medical Center, my GI is in town here too. St. Mary's is a great place, or used to be. I worked in Lewiston for a few years and dealt with the Hospital people on occasion for work purposes.

I hope you feel well with your Remicade.
 
JudithC said:
HI Dave 13, neat to find another Mainer here. I do my Crohns work at Southern Maine Medical Center, my GI is in town here too. St. Mary's is a great place, or used to be. I worked in Lewiston for a few years and dealt with the Hospital people on occasion for work purposes.

I hope you feel well with your Remicade.
Click to expand...

I had my resection done there.The nurses on my ward were awesome.They were very professional and caring.You worked in Lewiston? Sorry to hear that,ha,ha.I'm from Lewiston.

I was in Auburn this weekend.I was getting out of my car and a car comes wipping up in the space right next to me.I have setons and it is a little slow getting in and out of vehicles for me.The women starts blowing her horn and swearing at me to close my f%$%&ng door and get the f#@k out of the way.There were empty spaces all around and she chooses one right next to me.WTF!!! I said "How about giving me a chance to get out of the car?".

That just set her off spewing more abuse.I was gobsmacked at how she acted.She came from the shallow end of the gene pool,for sure.

Don't you miss L-A?
 
You brought back some memories Dave. LOL Made me appreciate home all the more. How long have you had your Crohns? I was dx 4 years ago, at "age 50 and over". lol
 
I was dx 11-13.The day after Thanksgiving,my resection was four days before.My GI and colorectal surgeon believe I've had it for quite some time before my dx.I had a fistulotomy and three setons placed two months ago.Fun,fun,fun...fistulotomy and setons were done at CMMC.

Sorry about bringing back memories of Lewiston-Auburn.LOL.
 
A co-worker said this to me today "I wish I didn't have allergies.I just want to be normal".
 
Knowing im tapering down off of prednisone after nearly 2 months on 40mg/day, and have added budesonide (plus the inhaled steroids for my lungs), I show my sister a picture taken yesterday. Her first remark? "Are you ok? cause you look ill, like pale and your face is puffy".... erm..... have you not been listening while i was complaining about flaring and steroids? No im not "ok" *ugh*
 
aideen33 said:
Knowing im tapering down off of prednisone after nearly 2 months on 40mg/day, and have added budesonide (plus the inhaled steroids for my lungs), I show my sister a pictuI finde taken yesterday. Her first remark? "Are you ok? cause you look ill, like pale and your face is puffy".... erm..... have you not been listening while i was complaining about flaring and steroids? No im not "ok" *ugh*
Click to expand...

@Dave - it is all relative to their understanding, I've found. No, they will never get it unless they walk in your shoes. Sorry. I face the same with my own health challenges, tho not a IBDer, I find more empathy and support here than anywhere else, and it does help me understand Doug more.

@Aideen - same remark as to Dave. No, unfortunately, I don't think they ever really listen. ~sigh~ That doesn't mean you don't need your support because you do, we all do. Keep advocating for yourself with friends, family and doctors and their little glances of understanding will pop thru from time to time. And know you have friends here. (BTW, I'm just going off pill steroids for my lungs, but still use inhalers, so I relate to that.)
 
Didn't think I would be posting myself here so soon, especially about my own situation, and hope you don't mind if I butt in with my own non IBD, but medical personnel complaint. I went to the ER the other day, after climbing a flight of stairs and suddenly finding I couldn't breath. I had had lung problems for the last couple of months, with one trip to the ER where I was (correctly) diagnosed with pluerisy by another ER doctor, then good follow up my primary care, but was getting better by then. Still, I had a little set back about a week later and went to the "urgent care" (not quite ER) at my PCP's clinic, (but diff doctor, which doctor recommended I see a chiropractor friend of his because my back was spasming also at the time). But back to the last ER visit. My heart was racing about 140 or so, felt chest tightness, blood pressure sky high, oxygen stats low. They had to take my EKG three times because they couldn't get a good reading (because my breathing was creating "static"). The ER doctor made it very clear to me that the ER was only for "if you are dying," and not there to diagnose my problem. She got me stable, then sent me home. Well, over the next couple days, my regular doctor did diagnose my problem, after squeezing me in for tests putting others with appointments behind. I have pulmonary embolism, (blood clots in the lungs) which is potentially fatal if not caught in time (could create heart attack or stroke and I have history of stroke). Thank God for a good primary care physician. I should be fine, just have to take blood thinners for about a year, more steroids, and have close follow up visits, and, of course, go back to the ER with any sudden symptoms.
 
Today my boss asked his things were going with my kid and I told him pretty bad, worried that now we are at the end and surgery is next. His response... surgery isn't the end of the world. She could be dying instead.

Talk about insensitive!
 
One day, my fellow trainee nurses and I were at lunch and one of the guys starting talking about visiting his friend who was in hospital. Asked why he was in hospital and the reply was: "He fell into a river and developed crohns. You get it from drinking rat p**s, you know". He was totally serious. I wanted to facepalm him with a shovel :ack:
 
@SandyUTE - OMG. I am reading this post and my blood is boiling. I would write a letter to the hospital Chief of Staff and copy the board of directors...each and every one of them. I know you probably have a lot going on but really - that is a dangerous doctor in that ER that is going to end up killing someone! Just not acceptable. Glad you are ok though. thank GOD for your PCP.
 
A workmate who knows I have Crohn's - "Why are you letting yourself get so thin!"

I could have strangled her on the spot except for the fact that after only recenlty being diagnosed, this comment shocked and hurt me much more than I expected.
 
Boyfriend to me after not having an appetite for several weeks and throwing up constantly-"I think you have an eating disorder, you should get that checked out."
 
I get this from people who haven't seen me in awhile "You lost so much weight,how did you do it?". I say "You don't want to do it the way I did" and tell them about having CD.9 out of 10 times the person has 'some place to go' all of a sudden after hearing about CD.

People,stop commenting on my weight!!! Especially since I am gaining weight back since my Remicade infusions.I'm not skinny,I don't have that wonderful post-op look like a wraith appearance anymore.I don't want to be as heavy as I once was.People,leave it alone!
 
My previous doctor when I had gone down to 85lbs: You need to eat a cheeseburger

My mom: You look like you're getting a belly, are you pregnant?

My mom: You probably got (your crohn's disease) from your pet reptiles

My mom: You probably got (your crohn's disease) as an STD
(I'm a virgin btw)

My dad: You're just faking being sick so you don't have to work

My dad: You're living in the bathroom, you don't really need to be in there, get out!

Female friends: I wish I could be as tiny as you are

And that's not all but it's what comes off the top of my head.
It's incredibly annoying to hear comments about not being sick enough.
 
I had a nurse ask me if I have a pain pill addiction because I refused pain killers. Really??

I had a dietician ask me If I have a eating disorder, seriously if I have one you really think I'm going to admit it. Which I don't

I've also have other females tell me how they wished they were small like me. They really should be careful what they wish for.
 
Yesterday I had someone compare having 2-3 attempts to get blood for a routine bloodtest to the pain of me having to have 2 colonoscopies back to back with only a very small amount of sedation (which did nothing) .
 
My sister is always making little comments that completely play down how I'm feeling. I'm just getting out of a really bad flare that nearly killed me and was in hospital for two weeks and I'm now getting back to normal, able to get dressed and go out and today I said how I was looking to maybe get a job in the new year and she snorted and goes,
"As if you'd be up in the morning to even go to work! All you like to do is stay in your bed, you're too lazy."
Umm, no, I stay in bed because physically, moving around a lot isn't going to work for me that day :///
 
I still love the comparisons made between a crohns flare and a stomach that goes a bit off during stressful times.
 
When I was on the elemental diet I had a family member say "it's ok to cheat on your diet every once in a while, I do it all the time." Yeah, because me drinking liquid nutritional shakes so i don't die of a nutrition deficiency is basically the same as you eating salad to lose a few pounds.
I've had many people say they wish that they could be "skinny like me" or that "oh, I wish I had crohns, so I could get thin"
A few comments a very close family member made really have annoyed me from "quit staving yourself, I'm beginning to think that your anorexic" to "you need to eat more red meat, that'll make you gain some weight" while I was going through a really bad flare of course. One time we were having a big family dinner and this person got offended that I didn't eat the food they made, even though they knew I was really sick.
I've learned that some people can be so clueless sometimes, usually because they aren't informed on the disease, or sometimes because they think they know what's best for you.
 
Dogluv said:
When I was on the elemental diet I had a family member say "it's ok to cheat on your diet every once in a while, I do it all the time." Yeah, because me drinking liquid nutritional shakes so i don't die of a nutrition deficiency is basically the same as you eating salad to lose a few pounds.
I've had many people say they wish that they could be "skinny like me" or that "oh, I wish I had crohns, so I could get thin"
A few comments a very close family member made really have annoyed me from "quit staving yourself, I'm beginning to think that your anorexic" to "you need to eat more red meat, that'll make you gain some weight" while I was going through a really bad flare of course. One time we were having a big family dinner and this person got offended that I didn't eat the food they made, even though they knew I was really sick.
I've learned that some people can be so clueless sometimes, usually because they aren't informed on the disease, or sometimes because they think they know what's best for you.
Click to expand...

Holidays make me want to be a recluse.
 
Oh yeah, I get the one where people get offended because you can't eat. I went my friends house and could hardly eat a thing because I was in a really bad flare. The next time I went round, she said 'please tell me you can eat something normal this time' and I said 'yeah I'm feeling better, I can manage a proper meal' and she said 'oh thank god for that, you were such a pain last time you were round'.
I feel like saying, I don't choose to be like that, I don't want to be like that. If I could, I would eat normal ALL of the time!
I also only work part time, and everyone says how lucky I am to be able to work part time. I always get the 'you've got a good thing doing this part time thing' and 'oh don't worry you won't be in tomorrow, you'll just be lazing around while the rest of us are working'. Do these people know that I would do anything to be able to work full time? They obviously don't.
Oh well, I always think about the day they find the cure, and everybody in my life realises that it was the disease making me work part time/not being able to eat/laying down a lot....and so on.....that will be the day!
 
I get that a lot too. When I cant eat what's being served. It annoys me when people who KNOW about my illness are so dismissive of it, but I don't expect acquaintances to be aware of my dietary restrictions.
 

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