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Crohn's Disease Forum

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I'm going to go back and read everything everyone wrote, but I have to get this one off my chest. I just found this thread and that one comment that still burns me to the core came rushing back.

Yes, there's other comments and questions that I might post later, but this one is the one that about kills me.

Backstory that's pertinent - I was easy to diagnose when I was 8 because my mother was diagnosed when she was 12. I decided when I was 16 that I wanted to get my tubes tied because I knew the pain of Crohn's, but also the guilt my mother has gone through about kills me. My parents talked to many doctors before they decided to have a child together (Dad had two from a previous marriage). They were told that no way, no how would the Crohn's be passed on. Yes, they knew it ran generation to generation through my family, much before Crohn's had a name, but they promised my parents it would NOT happen. So they had me.

I was either in my late teens or early 20's and in for an upper gi/sbft. I was getting checked in before I headed back to x-ray. My mother and I were sitting there talking and the young woman behind the desk checking me in looked up and asked about my mother having Crohn's as well. My mother said she did.

This girl's response still burns through me almost 20 years later. She turner and looked at me and said -

"Well, I guess you know who to blame for your Crohn's, don't you?"

My mother grabbed my arm as I was about to dive over the desk at her. Then my mother dragged me from the room as I screeched and the girl behind the desk cowered.

So yeah, that's the worst I've ever hear personally, and I was set up on a blind date with a guy for no other reason than we both have Crohn's. Yeah!
 
silvermander said:
I was either in my late teens or early 20's and in for an upper gi/sbft. I was getting checked in before I headed back to x-ray. My mother and I were sitting there talking and the young woman behind the desk checking me in looked up and asked about my mother having Crohn's as well. My mother said she did.

This girl's response still burns through me almost 20 years later. She turner and looked at me and said -

"Well, I guess you know who to blame for your Crohn's, don't you?"

My mother grabbed my arm as I was about to dive over the desk at her. Then my mother dragged me from the room as I screeched and the girl behind the desk cowered.

So yeah, that's the worst I've ever hear personally, and I was set up on a blind date with a guy for no other reason than we both have Crohn's. Yeah!
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That is absolutely disgusting. Crohn's runs in my family, on my mom's side. But that doesn't mean she shouldn't have had me! I know all about the genetic disposition we carry, but that won't stop me from having children. If anything, dealing with all of this myself will prepare me better if my kids have crohns. Like you said, you were diagnosed very fast because your mom already knew what to look for. No offense, but that glorified secratary is just a stupid bitch. I would have flipped right out and gone down swinging haha. Good for you for standing up for yourself. I for one, am very glad your mother decided to have you. It's always awesome to have another member to share their stories and give/receive advice.
 
That's awful silvermander. I've had similar comments made though... Crohn's is also in the family for me but on my dad's side and if one more doctor/nurse/secretary/plain nosy person decides to tell him/me it's apparently 'his fault, just blame him' I'll flip out too. It's the silly blame game again (probably because they think if it's all genetics then I can't get it!)

Another comment that really got to me was when I was admitted to try and control my pain. 'Don't try attention seeking, I'm not in the mood for it today!' was what one of the nurses on the MAU said. This to a girl writhing about, in tears with a high pulse (when she had been informed my pulse shoots right up when I'm in pain - it didn't need an ECG, just some pain killers!). I am sorry if me being in pain is such an inconvenience! I was glad to be moved off that ward that night... x
 
Few years back when I graduated I had my principal tell me (and then my mom) they were going to teach me a lesson on responsibility by not allowing me to go on my grad cruise.

Why might you ask? Well because I had arranged with the Cruise organizing commitee to drive down myself as my class was taking a bus without a toliet on it but apparently my "so called disease" as he said wasn't a sufficent reason to do so. He came to work the next day with a print out all about my disease and my doctor's phone number. I went to my grad cruise driving myself AND my girlfriend :smile:


Also had a professor at University last year tell me anything is cureable if you put your mind to it. He told me he cured an uncureable disease himself.... All because I told him in the most basic way what Crohn's was becauses I was missing class for an infusion.
 
supercellbaebe said:
Some people can't see past the end of their noses!

Yesterday a very awkward situation happened at my mates house. EVERYONE thinks we're an item and it is very largely rumored we have a relationship, but we aren't, since he's not the right guy for me. Still, it has reached his mum's ears that I am pregnant with her son's baby. So when I saw her yesterday she kept staring at my extremely distended tummy and frowning. It made me really self conscious! In the end I became rather fed up of being stared at like that and I joked
"Ouch! Its kicking!"
"So you are pregnant then?" Without even waiting for an answer she started having a go at her son for being a disgrace!
Its incredible the effect rumors can have, but it was quite funny to have a little joke about it too! ;)
xxx
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This made me laugh out loud litterally.
 
If anybody wants proof that Crohn's can make anyone look pregnant, I have some photos of myself, before surgery, that would help prove the point!
 
My G.I is very well known for having poor bedside manor, he's a genius but he's terribly crass. Most patients I've talked to admit that he has made them cry on many occasions. I've learned not to take him very seriously and even gotten him to warm up to me a little, but a couple years ago he made comment that will stick with me forever. He was running down the list of treatment options for me and explaining why none of them would work and when he got to the end he simply summed it up by saying "Well, I guess your toast." I'm still not sure if that was meant to be a joke or not, but whatever it was, it was slightly unnerving. And this is from the guy that calls me an "odd duck", go figure.
 
I lived with my mother in law for a few months and during that time i had no insurance and was suffering from really bad cramps and it just made me really tired. I kept the house clean but not clean enough to her standards. I had to keep up with my husband who was working nights and my son who was 1 1/2-2 at the time. She told my husband that i was faking it and i wasn't really sick just lazy. Well She must feel like a reall a** now after being diagnosed with crohns and then she just got dignosed with diverticulitis. She said that she can see how i felt so bad after she got sick. Karma anyone? don't wish illness on her but its kinda ironic.
 
Unbelievable! As I've said before people and their ignorance never cease to amaze me.

I am shocked over the comment about, "You know who to blame." Why does anyone need to place blame? It's a situation in which you really can't. My paternal grandfather had Crohn's really bad. His digestion made him sick for much of his adult life. I can't imagine feeling anything but love for my grandfather. I blame the disease and it's horrible symptoms, not the person.

I'm still waiting for some Karma to kick in. My MIL proclaims to be a good Christian woman. She has fibromyalgia and diverticulosis; yet she doesn't seem to believe me when I'm flaring-up and not feeling good. I know she thinks that I'm lazy. I don't even know where she could get that idea. I work, take care of my kids, cook, and clean. I do my best to stay in regular contact with my family (parents and siblings), and I take the kids to church regularly. I wouldn't call that laziness!
 
My Aunt (who had rectal cancer and is now in remission) to my mom: "What do you mean, she's still sick! I thought she was better!"
My mom: "It's chronic, Pat. She gets better, and then gets worse. It's not going to go away."
My aunt: "We're praying for her at church. Jesus cured my cancer, if she prays enough, the Lord will cure her too."
Good grief.

I was in the paralegal program at the local community college this past semester, and had to drop out because of attendance. Before I dropped out, I told one of my profs (a lawyer) that I had to miss a class for a procedure (I was prepping for a colonoscopy, no way was I going to drink GoLytley and then show up for a night class). He told me the absence would still count against me. You should have planned for this ahead of time. So sorry, Mr. Lawyer Jerk. Next time I will ask my Crohn's to flare over a break or during the summer.
 
I have just read through all of these....made me laugh out loud, holding my tummy. The truth is always funnier than fiction. Thanks for sharing.
 
"You look sooo different" on my first day of senior year in high school after a summer of hospital stays and steroids. Yep, definitely wasn't self-conscious enough about my bloated face at the time.
 
Karissa, I know exactly what you mean! After I got sick and had been on pred for a while I ran into a guy who had been a really good friend of mine. I also had a major crush on him, which I think he knew, but we were only just friends. The look on his face when he saw me nearly crushed me. I am a really tiny girl, and the facial mooning was very bad, as well as acne (I really hate pred). After that, I wouldn't leave the house. I was so depressed. I have only gone back on pred a few times since then, and never more than 20mg a day!
 
Ugh ugh ugh the acne! I completely forgot about that Sarah Anne. I tend to forget and block things out that were especially annoying or painful. But oh Prednisone, I am not a fan.
 
vickie_x said:
Another comment that really got to me was when I was admitted to try and control my pain. 'Don't try attention seeking, I'm not in the mood for it today!' was what one of the nurses on the MAU said. This to a girl writhing about, in tears with a high pulse (when she had been informed my pulse shoots right up when I'm in pain - it didn't need an ECG, just some pain killers!). I am sorry if me being in pain is such an inconvenience! I was glad to be moved off that ward that night... x
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This has shocked me to the core - even if you werent in hospital with known CD, even if heaven forbid everyone did suspect you as being a big faker - you NEVER EVER say that to a patient! EVER! I'd have complained. If someone said that to me whilst I was in with crohns I'd kick off there and then!!!

On a similar ilk, I have heart issues inc an arrhythmia. I was in hospital with it years ago (before i went to uni) cos drugs just werent bringing my heart rate down. One nurse turned to me and said "I think this is all in your head!" - I think my cardiologist who has me on max doses of 2 antiarrhythmics after a failed op to fix it might disagree somewhat. Plus my ECG is NOT normal..... some people!!!!!
 
I love this site!

I can't believe I have had Crohn's for 24 years and didn't know about this site til today. You all ROCK!:ghug:
 
manager at work(who has diverticulitis)- "diverticulitis is MUCH worse than crohns cause crohns has medicine"

A "so called" friend- "your crohns isn't THAT bad, you leave work early and stage 4 cancer patients don't do that and they work full time jobs"
(be aware that she's seen some of the worst parts of the disease...as in blood running down my pants because I didn't make it to the bathroom)

My parents before I was real bad thought I was a hypocondriact...then I started going to the bathroom more often now that I've one through my struggle they're rather concerned. I try to make light of my situation as much as possible so my sister and I joke how she's severly vitamn d deficiant and she pokes fun at my crohns.
 
Here's a hug, Melissa. I am sorry about the lack of support and crass attitudes that you have encountered.:hug:
 
You know if you exercised more you'd feel better?

Yeah, I don't have any energy b/c I can't absorb B12, I'm severly anemic b/c I don't absorb any of the nutrients that I eat, and I can't sleep because of ripping abdominal pain every night that leaves me in the fetal position.

Absolutely. Some high impact cardio is just what I need right now. IDIOTS!
 
Oh my gosh! Sarah Anne, do you know my my mother-in-law? Those sound like her words exactly. She's a big health nut and fitness nut. She's very obsessive about both.
 
My mom has had arthritis for 40+ years. When I tell her about the pain I am in - she tells me to just get on with it - as she has cause you can't let the pain win.

I am having the all over body pain and she thinks I should just exercise more to feel better. Ya, the thought of being sore from exercise on top of the pain I am already in - just makes me cry.

My sister has CD as well and is at least somewhat supportive.
 
Crikey, I really feel for some of you on here - you've had such awful comments thrown your way, and what shocks me more is that a lot of them are from medical professionals!

I mostly encounter the usual comments.....

"You're always tired"

"Why aren't you eating?"

"Are you on a diet?"

"Maybe if you eat you'll feel better"

"Cheer up"

"Oh yeah, I know how you feel, I've got irritable bowel" (NOT the same!! grrr!!)

Silly little things really, but when you're having a bad time they don't make matters better and it's easy to take little comments to heart.

I think, like others here have said, its hard for some people to understand so they react by being a bit silly about it because they don't know what else to say.
That's not to say that I expect every single person to understand completely, just a little consideration here and there.

I also think that its the usual 'well you don't look ill' mentality of some people. They seem to have a hard time understanding that just because things don't look too bad on the outside, and yes I'm still managing to go to work that I can't possibly be in pain, exhausted and needing to rush to the toilet every 5 mins isn't a problem at all!

I should count myself lucky though really, the comments i've come across are nowhere near as bad as some on here.

-bc*
 
I have a 4 yr old son and we sometimes go out to eat every now and then. I usually eat one meal a day and take my meds with me when we do go out. I was just about to eat so I ook my 4 bottles of pills out Zach looks over while I'm taking the bottles out of my purse and says "mommy how many kmedicinces do you have? Why are you taking so many, are you sick? I'm healthy I don't have a cough or throwing up."

Thanks Zach for bringing me back to reality
 
I went to the e.r. and since I knew what was wrong w/ me I said to the nurse "I am in pain I have Crohns disease and am pooping blood. I need some pain medicine!" Then I laid down on the gurney and closed my eyes. The nurse said "Oh we dont do that here." I did not say another word. Minutes later the doc arrived and I was receiving pain meds extremely fast after that. It was that same nurse that came in to give me a shot. I would not even look at her and she never said onother word to me. I spent two nights in icu, so I guess I showed her!!!
 
It's AMAZING to me how many doctors and nurses think they know what they're talking about...It's easy to judge someone when your perfectly healthy.

When I was first diagnosed and they were beginning to reform health insurance, one of the main changes that affects me is they can't deny me insurance now because I have a previously diagnosed disease. A lot of people on facebook were in an uproar about it so I posted a comment saying the change isn't perfect but at least now I can't be denied because I have a pre-existing condition and someone said "I don't understand this pre-existing condition thing, it's like I bought a broken down car and tried putting insurance on it." Oh really? So I'm suddenly a car that doesn't deserve insurance because I'm already broken.
 
lookame said:
It's AMAZING to me how many doctors and nurses think they know what they're talking about...It's easy to judge someone when your perfectly healthy.

When I was first diagnosed and they were beginning to reform health insurance, one of the main changes that affects me is they can't deny me insurance now because I have a previously diagnosed disease. A lot of people on facebook were in an uproar about it so I posted a comment saying the change isn't perfect but at least now I can't be denied because I have a pre-existing condition and someone said "I don't understand this pre-existing condition thing, it's like I bought a broken down car and tried putting insurance on it." Oh really? So I'm suddenly a car that doesn't deserve insurance because I'm already broken.
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They would understand it if they had one.
 
I have all kinds of plans etc for the summer - including possibly changing positions (STILL waiting on the word frommy transfer request!).....

Had an MRI of my head done last week because of hte headache issue - they found cycts/polyps in BOTH sinuses - treatment can be STEROIDS...bwahahaha.....OR surgery -.......I really DON'T want to spend time recuperating...especially if I get the transfer which will mean a LOT of time on the road for training!.......ugh.....
 
lookame said:
It's AMAZING to me how many doctors and nurses think they know what they're talking about...It's easy to judge someone when your perfectly healthy.

When I was first diagnosed and they were beginning to reform health insurance, one of the main changes that affects me is they can't deny me insurance now because I have a previously diagnosed disease. A lot of people on facebook were in an uproar about it so I posted a comment saying the change isn't perfect but at least now I can't be denied because I have a pre-existing condition and someone said "I don't understand this pre-existing condition thing, it's like I bought a broken down car and tried putting insurance on it." Oh really? So I'm suddenly a car that doesn't deserve insurance because I'm already broken.
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This was a big issue for my husband. Before we met, he never voted and didn't care about "issues". Now that he has me, and the kids, things are important to him. He has a lot of friends that have gone on and on about the healthcare reform thing, and he tries to ignore it. He is floored by how much my procedures, medications and surgeries cost. When I had to leave my job, I didn't have insurance for a few months and we were literally holding our breaths every day that something didn't happen to me. He looked into private insurance, but there was no way we could afford it. He could not believe that they could charge so much money. I told him insurance companies don't want to pay, so they penalize sick people like me. It's a business and it makes me sick because there is nothing I can do about it. I'm lucky now that he has insurance through his work, and I'm covered.
 
When I was 16 I started flaring again after 7 years of relatively few issues. My GP sent me to the one GI in town. Being 16 and driving I went to most of my appointments on my own.

After a number of appointments and when he put me on prednisone and told me to take it at night. I didn't sleep for the better part of two weeks, except in class, so I called him and left a message. Nothing. Then I called again and left a message. Nothing. Then I called again. Nothing.

My mother then called him as it was a Friday and we were getting desperate. He very quickly got on the phone with her and said, "She is lying to you. She never called me. I don't lie about these things. I get a million calls everyday and I return every one of them."

My mother then informed him that I had called him.

"No, she didn't she's lying to you!"

My mother then told him that she knew I had called all three times because I had called from her workplace and she's the one who had dialed the number and listened in on each call.

"Well! You're daughter doesn't have Crohn's! It's all in her head! She has a chip on her shoulder and needs to be institutionalized!"

My mother said that obviously when I was 8 years old I had a small bowel resection and that must have been when they had inserted the chip and it had only recently made its way to my shoulder. She also told him that I would be in his office in 10 minutes to pick up my medical records and if anyone there so much as looked at me funny we'd be dealing with the police.

I walked into his office and glared at him as he personally handed me my records and gritted his teeth.

Even funnier was what happened later. The whole blow up with this doctor happened in January of that year. I went under the knife for a SBR the end of February that same year. Early June I was wondering around our local small amusement park where my father owns all the food stands.

I saw this doc standing by the ferris wheel while someone he was with rode it. A good friend of mine was running the ride, so I went over to talk to him. He saw my hand on my belly and asked how I was feeling. I started expounding on my Crohn's and the surgery. My friend knew something was up, so he played along. When the ride was over the doctor and his party fled the park.

While I'd love to feel bad about the people he was with losing their riding time, I honestly don't.

About 10 years later he was covering for my GI while I was in hospital. I told my GI that I'd had serious issues with this guy when I was a teen. My GI told me that I was an adult and he'd hope I'd act like one. I liked that GI, so I promised to be good.

When the GI who'd been such an ass came in to see me he stayed way over by the door holding my chart in front of him like a shield. I was in a double room without a roomie and I was over by the window. He didn't even try to poke my guts, listen to my heart or lungs.

I was really good until the end when he was walking out the door. I quietly asked, "So, you believe I have Crohn's now?"

I wasn't even sure he could hear me, but he looked over his shoulder with his eyes wide and fled the room. Nope, I don't feel bad about it at all!
 
iT TAKES ALL SORTS

My brother was having tests as he was going to the toilet a lot and stomach cramps.
I said to my sister in-law it could be CD she replied if it is I would leave him.
I told my girlfriend said ,you think I can be a bitch.I DID SEE MY GIRLFRIENDS POINT.LOL.
dONT SEE THE SISTER-IN LAW MUCH NOW FOR SOME REASON.LOL

i GOT REALLY DOWN AND NEEDED SOME HELP BECAUSE OF MY CD,I TOLD MY MOTHER I WAS SEEING A NUTTY DOCTOR SHE REPLIED PULL YOUR SELF TOGETHER,MY REPLY STOPPED HER IN HER TRACKS,,,I REPLYED WHAT DO YOU THINK I AM A PAIR OF F*****G CURTAINS ,:lol:

When I was first diagnosed I walked into a pub and a so called mate decided it was funny to give 20 or so paper bags out and for everyone to hold them on their side as he new I was scared of having a bag fitted,my face said it all and my true friends collected all the bags up and said sorry.
I got my own back 6 years later when I had FA CUP final tickets and I would not give him one.....Bit of bad luck for him....
 
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"There's ALWAYS something wrong with you." - Ex boyfriend.

"You storing nuts for the winter? Haha." - Grandpa while I'm on Prednisone.

"Do you have an eating disorder?" - Mom. She thought I was throwing up in the bathroom after all my meals.

"You don't need medicine." - Sister who also has Crohns. Oh ya, I forgot that bleeding was normal which she has issues with. I don't because I take my medicine.

"So you crap your pants a lot?" - Idiot on the internet who knows nothing about Crohn's.

"You need to watch what you eat. You can't eat ____, ____, ____, etc." - My grandparents who think specific food causes flares and Crohn's in general. I didn't list the foods cause I don't remember. It's all bull anyway.

I'm sure there's more but that's all I can think of at the moment.
 
A few days ago while I was in the hospital (still am,) one of the nurses taking care of me said the stupidest thing. I know most of you have heard this one, but from a nurse? Jesus christ.
I was recieving more painkillers via IV, and she asked what my pain was at. I replied 8, it's getting pretty bad. She asked how long I've had crohns, and I said I was just recently diagnosed but had been dealing with it for years.
She started telling me about another crohns patient she had, and how much he was in. The guy was trying to explain how bad the pain was, and he said "you have no idea what this is like." She replied to him "I do know what it's like, I have IBS and it's really painful. I know how you feel."
Are you fricken kidding me? IBS is NOTHING like crohns. You don't get all the random extra-intestinal symptoms and complications. Do not try to tell me you know what I'm going through, just because you have a little discomfort sometimes.
I know IBS can be painful, but not nearly as painful as crohns by itself. Not to mention fistulas, strictures, obstructions and perforations.
 
After I had just been diagnosed and shared it with a friend, she said, "Yah. I'm familiar with that. It's in my family, too. My uncle just died from Crohn's last month."

WHAT???
 
A senior manager at work has just questioned my ability to perform my job(6 emails)my line manager forwarded my excellent work reviews after the first email.He carried on sending emails questioning my ability.I have put in a grievance against him for discrimination.....I would wish my illness on no-body,but I wish a few things on him.As I work for the Goverment I will send the grievance to Mr.Cameron if I have to.

Dealing with what we have makes you strong..
 
After I got out of the hospital, I was feeling so incredibly good from the pred, and also pretty manic, so I talked about it non-stop. I was telling a family friend about how good I was feeling and she said "oh, well you'll be back in the hospital soon enough.." I informed her that I had actually been discharged and I wasn't going back. She was like "yeah you are. You'll get sick again." I know that's not like, a really rude thing to say, but it kind of bothered me anyways. Like, I was just in there for almost two weeks, and this was the first time in literally 5 months that I felt GOOD without painkillers or anything, and she just assumed that I was gonna flare again right away. It made me mad.

Lately, I've been waiting for someone to start asking about my weight gain. Everyone says they can't see it, but I know I've got moonface. the only person who is ever completely honest with me about that stuff is my dad. I asked him the other day, if my face was any fatter. He looked at me for a second and said "yep. But where's your boobs and your ass?" I was like, jesus christ dad, don't ask me that! He told me I haven't gained weight anywhere else, but "You will soon enough. You better, cuz you look weird when you're that skinny."
I love my dad hahaha. His nickname for me has always been "slim." Even when I was a little bigger. Now it's taken on a new meaning, cuz while I was in the hospital I was almost underweight for the first time in like, 6 years. Now I'm gaining it back, slowly, and mostly in my face, but my boobs are growing back :D
 
don't forget 25times.......first place you lose is the boobs - and the last place you gain is them too! lol.....

I know this isn't crohns' related - but my younger sister is here visiting from canada with my 2 1/2 year old nephew.....sis has the NERVE to say to our Mom that MY daughter is spoiled (which my husband and I freely admit!).....HOWEVER - mine is NOT the one who will only eat baked ziti for breakfast, whine cry and carry on when their way isn't gotten....isn't terrified of putting their feet in a stream/creek - AND my daughter has NEVER almost bitten my b oob off while playing - yup - got BITTEN the other evening in a very vulnerable spot while his mother tried not to laugh!

But no.....MY child is spoiled!
 
Yesterday, a co-worker whom I don't know very well overheard a conversation I was having with my boss. You have Crohn's? It is a rare disease? My friend has Crohn's. Her left iris is stuck open. It will not move.

Huh??????????
 
Pasobuff.....my kids are probably kind of spoiled too, when I'm not feeling well (most of the time) they get easy, prepared dinners or frozen pizzas, I stopped beating myself up over the way they eat. I know they also play more video games and watch more tv than they should because there are times I just need to lie down, and I'll do whatever I have to so that they'll behave and not fight.

That being said, when we went out to dinner with my parents they commented on how well-behaved my kids were. Mom said my nieces and nephews won't even stay in their chair, they run around screaming (same ages). My kids know if they get up in a restaurant they better be going to the bathroom. They drive me crazy a lot of the time when I am home alone with them, but they understand that I am sick, and when I REALLY don't feel well, they can tell. And they will actually behave for me, because they understand when I'm sick what it means. My CD has actually made them better behaved kids, I think.
 
@Sarah - yup...when I don't feel well Itake it easy too - it just irks me that sis will talk about how other peoples' kids are 'spoiled' - yet won't admit hers is.....she also loves to talk behind peoples' backs about them, and sometimes to their FACE - criticizes everything from the amount of belongings someone has (she had the nerve to imply I am a hoarder - which I am NO WHERE NEAR BEING).....and offer to help me throw things out......like what? My dishes, clothes, furniture? I admit I have 'stuff' - but I do and have been going through boxes and throwing things out - and giving things away that can be used by others......and I do have a couple of collections of model horses and porcelain figurines but that takes up a couple of boxes.....The house is NOT full of garbage/trash - yes, daughter has a lot of toys, but they sure as hell don't fill the house....I'd better stop ranting or I'll keep going.....

Oh - and this is the same person who left a ton of stuff at my Mom's house for Mom to go through, then last year when she actually came out and sorted through stuff was going to THROW OUT a saddle worth about $800!!!.....umm...yes, that is in my house/basement....haven't checked to see if it fits my horses, and if it doesn't, off to craigslist or ebay it will go!
 
DougUte said:
Yesterday, a co-worker whom I don't know very well overheard a conversation I was having with my boss. You have Crohn's? It is a rare disease? My friend has Crohn's. Her left iris is stuck open. It will not move.

Huh??????????
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It amazes me every day how incredibly STUPID the human race can be. Especially when it is entirely EASY to look things up in order NOT to look and sound STUPID. ahem.
 
"I knew someone that died from that." Gee, thanks for the encouraging words.

"Mommy, you're in the potty a lot." My observant 4 year old daughter (she was 3 at the time). It makes me sad, though, that I'm a sick mom.
 
I don't have kids yet. But I will have them when I'm financially stable. And you bet your crohns-ass I will spoil them however I please. I think it's absolute garbage how parents criticize other parents on how their children are being raised. Like, seriously. They're YOUR kids. If you wanna buy them a hundred toys and feed them only "locally grown, organic, grain fed chicken turds" GO AHEAD! IT'S YOUR KID!
I'm a nanny by profession, so I see this stuff happening alot. I just wanna tell people to mind their own business. My "families" have gotten judged on having a nanny before. Who cares? It doesn't mean you're a stuck up rich snob who doesn't spend time with their kids. It means you need a little help sometimes, and you hired someone very capapable to do so. Yes, I charge alot. Because I have ALOT of experience and training and education. So yes, I work for very well off families. But that doesn't mean their kids are spoiled. It's just stupid.

Sarah, don't feel bad for letting your kids eat frozen dinners and watch tv. There were days at my old job, when I was feeling like absolute shit. I would park the kids on front of the tv for about 6 hours so that I could sit in the fetal position and not move. All they would eat was canned pasta and macaroni and cheese. So that's what they got. I snuck in vegetables when I could, but what are you gonna do? let them starve? Force feed them? Sometimes you just have to give them what they want, especially when you're so exhausted you could just pass out while opening the can of pasta.
 
I respect people who follow the holistic route or alternative therapies or whatever, still I think that modern medicine is better for me. Well last Saturday my parents had a BBQ, and a woman I had never met before heard me saying that I cannot eat salad and vegies. She asked me why and I said cause I had Crohns. Enjoy the convo

-You have Crohns? I understand you soooo much I used to have colic pains in my bowel

-HUH?

- Oh yes I felt like crap until the blah blah therapist told me to stop listening to my doctor and start eating the OPPOSITE from what the doctor said. Did you try that?

-Are you serius? My first serius flare almost killed me I had emergency surgery and I was 6 hours in the OR. Last year I ate a PEACH and was back to the hospital. I am afraid if I have another surgery I may not make it.

-But vegetables and fruits can prevent flares, they make your bowel work

-I have CROHNS fiber cannot prevent flares can cause flares for me. I mostly eat bland food and I have bi-weekly Humira injections to put the disease under control

-You should try the other way cut all youw medication and eat lots of fruits and veggies and see what will happen

-I will probably DIE and I am only 37 and I have two small children, do you want to be responsible for my death?

-Nonsense noone dies of eating lots of fruit, you WILL feel better

-NO I WONT!!!!!!! I have CROHNS if I stop my meds and eat lots of fiber I will get SICK!!!!!

-But my colics were cured with the fruit diet surely crohns can be cured

-No it CANT its a chronic condition and you just learn to controll it

-Are you sure its not psychological? I felt awfull when my life was not good, now that is good I feel ALOT better.

-Yes I am sure

-Maybe you should see a councelor

-Maybe I should continue the treatment I do NOW and makes me feel better than risk having another flare

And I left the room
 
Unbelievable, Scifimom! Are you sure that your parents didn't invite my mother-in-law over to the BBQ? That sounds exactly like her. She knows of my situation, and she still insists that I would feel better if I ate tremendous portions of fruits and veggies. I do think she is trying kill me though. Sorry, bad joke! In the past, I used to get plugged up during her visits. I am not polite anymore when it comes to my health and what I can and cannot eat.
 
Oooooooooooooooohhhh that last post makes my blood boil. I am SO SICK of people telling me what to eat. And that if I eat "this" it will "cure" my crohns.
It is a proven fact, let me repeat that, FACT, that crohns can not be cured by diet. It has almost nothing to do with your diet! It's an auto-immune disease!!!!
yes, I know that some foods can cause hell in your bowel. I know that there are alot of things we can not and should not eat. Like fiber. But there is no known food or diet in the world that will put you into remission.
My mom is CONSTANTLY telling me to eat this or that and that it will help me. Eat more fruit, you'll feel better. Eat more vegetables, you'll feel better. Don't try eating that steak, it will hurt you. How am I supposed to know what foods I can tolerate unless I try them once I've been feeling better? Some people with crohns can eat corn. Most can't. But if I can tolerate corn, I want to know. aAnd there's no test they can run. It's trial and error. So if I wanna try eating a steak, and I end up in the hospital tomorrow with an obstruction, that's my problem. At least then, I'll know. I told her that there is no direct link to diet and crohns disease, and once you are in remission, there is not a food that will put you into a flare. It can't happen! Sure, there are foods that will upset your intestines because you have narrowing, or strictures, or fistulas.. But an actual flare is caused by an auto-immune response in your body. She didn't believe me and said she would look it up. I warned her not to believe everything you read on the internet because most of it is bullshit. You can cure crohns by fasting for 40 days, or doing the paleo diet, or taking "this" probiotic. No. You can't. There is no fucking cure. You can maintain remission and you can keep yourself as healthy as possible. But there is no cure. We know that, now why can't everyone else get it through their stupid heads?
 
A cure lol....I know I have been told many times its in my head or its because of my diet.One person who came to see me every 2/3 months used to complain I was ill everytime they called.Eventually I just said dont come round as you are not worth the hassle.I am 15 stone and have heard the comments many times that I can not have CD because of my size..lol....
I have a wicked sense of humor and because of this i have been told i dont have CD ,if they only understood it is my way of coping.I am lucky in that when well i can eat the hottest curry without any side effects.I have even won a bet when a gobby drunk bloke said he could eat the most phal curry than anyone else.(he thought he had CD the next day my friend told me.If only he knew.
 
@25.....let me know if you ever want to relocate to the Denver, Colorado area! lol.....my younger brother is out there and has had the need of as nanny - divorced with 2 small children and sharing custody while working a VERY high stress job and traveling a LOT....oh, and talk about spoiled kids - BUT they are GOOD spoiled kids lol....not bratty!

Back to comments....

While out in the Boston area a few weeks ago with my Mom, we were at one of the dinners and sitting at a table of people....she was talking to the lady next to her and telling her about her kids (including me).....I overheard her talking and caughter her saying about me 'and she's not well' - words to that effect....OK - YES, I may have Crohns', and be on medication, but I AM WELL right now.....sorry, but I don't see how it was any business of the person Mom was talking to to have that type of information said in that way......it has been bugging me since then and finally I'm venting about it!
 
Vent out as they are silly silly people who live silly little lives........My ex-wifes mother used to make comments about my illness being in my head(my x wifes thought the same}I was ill one day in the car and the ex-mother in law was sat in the back seat.I had some very wet wind,the smell was not to nice.I turned round to her and with a very big smile on my face said sorry its just in your head.I know its not a nice thing but I could not help it but I hated that women and if I had got upset it would have made her day....
I learnt a lesson that day and it was check the mother out before marrying the daughter/husband.....
 
My ex boyfriend used to make jokes about certain 'acts' relating to my derrier. (Please see my signature to understand how 'hilarious' his comments were not.)

This might be why he is an ex.
 
I say this about myself, my brother, and my late grandfather. I'm sure the whole family hated our guts. LOL! That saying sure takes on a different meaning to many of us nowadays.
 
My wife once told me (in jest) that she hates my guts. My response.. "thats OK, I hate my guts too!!!"
 
I went to the fair of Friday and found a booth with all the awareness magnant ribbon thingies and right there in the very front was crohns disease awareness...I got super happy and bought 2 lol

I know not a comment by anyone or anything but still
 
The humor is the only thing that makes this disease tolerable. Being able to take insensitive or uneducated comments and find the humor in them is what makes us exceptional human beings, I say!

I am now facing proctocolectomy with ileostomy. My husband quickly took my (and his own) concerns and fears and has made some of the funniest jokes and comments.

Even the dog looks for me in the bathroom before looking anywhere else in the house! Hahaha!!
 
A friends mom told me that if I had regular colon cleanses to clean myself out, it would cure my Crohn's. She was convinced colonics cured everything. I told her I could end up in the hospital. She also recommended more fiber. Why do so many people without degrees think they are qualified to give medical advice?
 
I haven't made it all the way through this awesome thread yet, but I wanted to add mine.

from the FIRST gastroenterologist I went to: You're too young and too fat to have anything really wrong with you. I'll put you on a diet and everything will be better in 30 days.
parents: There's nothing wrong with you that losing a little weight can't fix.
doctors: well you look ok.
boss: Don't worry what your co-workers think, just do it. (in reference to situation below)
My job obviously must not believe there is anything wrong with me, because they think it is perfectly appropriate to be in the restroom everyone shares vomiting or having ridiculous diarhhea. I know it can't just be me, because sometimes it stinks so bad I'll get sick from the smell alone. And it happens everyday I'm in the office. It's so humiliating.

friends: It's all in your head, you know.
 
One of the worst things ever said to me after my first hospitalization. I was in high school at the time and it was after being in the hospital for a week. A kid in the theatre class said this after seeing two huge scabs in the crook of my inner elbows from pic lines: "Jeeze, Lindsey, you look like a heroin addict!" Thankfully, just about everybody in the class jumped on him immediately after he said it.
 
My Cousin asked me how I was & on telling him about my latest problems he said "your never well are you, there's always something wrong".
I said if you dont want to know dont ask!!
Honestly people who enjoy vg health either have no idea or simply dont want to hear.
Makes my blood boil TBH.
Rgds
Grant
 
Grant said:
My Cousin asked me how I was & on telling him about my latest problems he said "your never well are you, there's always something wrong".
I said if you dont want to know dont ask!!
Click to expand...

This is similar to what happens with my co-workers. They'll say, "How are you today?" and I say, "ok" and they'll respond with something like oh that's great, I'm so glad you're feeling better so I have to say to them, "I'm not really ok, I just said that because its easier than saying no"
 
I've had a couple of these. First was when I was getting ready to go to the er in February. I had called my mom to come over and when she got there, I was still trying to put pants on (I had been naked from the waist down and moving caused immense nausea). I didn't have any clean sleep pants, so I put on jeans and just left them unbuttoned and unzipped. Of course, my mom had to tell me that I was indecent. I think I told her that I didn't care if I walked in there butt naked, so long as they gave me pain killers.
Later, when I was actually in the er, they had asked me if I was still having the nausea and the pain. As I had thrown up in the waiting room's bathroom sink, I told them the nausea had passed for now, but I was still in a lot of pain. About an hour later, they made me do a urine test and on the ten foot walk back from the bathroom I was overcome with a serious wave of nausea. One of the orderlies asked me a question and it took me about two minutes to finally get it pass enough to reply. they were in my room almost instantly to give me liquid zofran, in addition to finally giving me morphine. Lesson- If you want your pain meds, either get sick or almost get sick on the hospital floor. Yet again, I probably wouldn't have been nauseous if they had gotten rid of the pain.
Next, my sister in law tried to tell me that she was not nearly as overdramatic as I was, as I was always sick or couldn't eat something, etc. All of her problems either come from a lack of contraceptive, some minor problem that she's blown out of proportion (my brother won't come home after fifteen minutes of being somewhere because she doesn't want to be stern with my nephew) or the sprained wrist/pain in her side/whatever that she went to the doctor to get heavy duty painkillers for (I've taken Tylenol 3 once, with no effect and got morphine in the er one time. Otherwise, I have never been on anything stronger than ibuprofen). My problems are stupid, although they are a genetic condition that I inherited. Her conditions are ones that she has control over, but doesn't want to, and I'm the one with the problem. Needless to say we don't talk anymore.
My brother ate something that didn't agree with him and came out of the bathroom saying that he knew what Crohn's was like. He knows what having diarrhea is like, but he has no idea of the pain involved when you just can't go or the hours you spend in the bathroom (compared to his fifteen minutes), the waking up at night, the intense cramping, and the knowing that it's not just a temporary problem.
I also had a teacher last quarter that asked me "Aren't you supposed to be working on your paper?"
I turned to her and calmly explained that I had Crohn's and had to take care of it, but what I wanted to say was 'I can get up and leave your class and go to the bathroom, or I can shit on your floor. You decide, I'm game either way, just to see what you do. Also, I'm twenty years old and if I want to walk out of class, there's nothing you can do. You can't call the truancy officer on someone in college.' My whole class was excited when we were done with her.
 
When I first found out I was sick my boss said "Oh I wish I had stomach issues so I can be skinny too." I laughed and said "Trust me, you don't."

The first GI doctor I went to before diagnosis "You just need to eat more fiber and fruit, then you will feel better. You are too young for it to be anything else." Definitey got another opinion thank God! Since when does IBD have an age limit?

I have gotten more rude comments along the lines of "You're not sick, you look normal." Well thanks but what's normal? Lol. Honestly people just don't understand if they are not in your shoes. I've learned to accept it, but some of their ignorance can still make me laugh.
 
After being asked about medications son was currently taking. From the pediatrician's nurse- "Why are you talking about Humira- we don't take that insurance as copay."


Head slap and pulled strings to get him into an internist.
 
I hear you on people asking how you are, then saying "you're always sick, aren't you?"
Oh I'm sorry. Is it annoying, having to listen to me for 5 minutes while I answer a question that you just asked? Try living with it! All I ever think about is crohns disease. Am I gonna be in pain today? I have to go to the bank, am I gonna pass out in line again? That's a new stomach pain, did my bowel just perforate?
You really can not understand what I'm going through unless you have crohns disease. And even then, everyone is different. The thing I hate most though, I recently discovered, is people with IBS.
"Oh, you have crohns? Yeah, I know what you're going through, I have IBS"
Oh, cool, so you fill the toilet with bloody diarrhea up to 30 times a day too? You're on medications that cause cancer, heart failure, liver failure and death too? When's your next colonoscopy? Has your doctor suggested an ostomy yet?
No? Oh, well I guess you don't know what I'm going through.
I know IBS can be difficult. But the treatment for IBS is stuff like yogurt and adding more fiber to your diet. Not having remicade infusions every 8 weeks, prednisone that makes you swell like a whale and act like a psycho, imuran that renders your immune system useless.. So please stop trying to relate to me with your IBS. I feel for you, seriously, but consider yourself lucky.
 
I am EXTREMELY sensitive about the whole IBS versus IBD situation. They are two completely different matters! Yes, you can have both at the same time, but they are not the same thing. I stress this to anyone who asks me what I have----including people who work in the medical field. It blows my mind how many medical professionals lump them together. ARRRRGH!!!!!!!!!!!!!!!!!!!!
 
I get annoyed with the whole IBS vs. IBD thing as well. When I tell someone I have UC they are always like "Oh I know someone who has had IBS for years, you should talk with them and get their advice." It's like thanks but no thanks. I doubt that anyone with IBS can understand what I am going through, but I would be happy to give them advice on UC. :thumright:
 
I just love the quotes about the weight loss. Last time I lost 40 lbs in a month I had people saying things about wanting my problem (this was before I was diagnosed with CD). My response...... yes, but I don't recommend the method!
 
Ugh IBS is NOT in relation to IBD...ok so occasionally they have diarreah more often than the normal person...ok I get that is slightly more inconvient for them...but really they aren't as closley related as people want to think they are. Anouther annoying thing..."Oh you have crohns that is a nasty disease I went to Mexico and got some bug there and now I can;t eat mayonase" ....wth!? and "Oh your have crohns I feel for you...my cousin's sister brother blah blah blah..." Seriously how do so many people know people who have crohns but I've never actually MET any of them!? It's a little baffling...
 
while talking to my well-meaning future MIL [i love her to death] about the treatment options, what crohn's is all about, and the possibility of surgery or a bag she says
"you are only 22, you're too young to be sick"
I couldn't help but think "yeah let me go call my colon and tell him he is getting inflamed too early and could he put it off i don't know 50-60 years"
and I don't know why i made my colon a male, maybe i should give him a name too.
 
During an emergency room visit a couple months ago:
Nurse: How do you spell crohns? Then a few minutes later, same nurse: How do you spell remicade? :shifty-t:

My now ex-wife: I'm tired of this disease ruining our weekends :ywow:
 
dephs said:
My brother ate something that didn't agree with him and came out of the bathroom saying that he knew what Crohn's was like. He knows what having diarrhea is like, but he has no idea of the pain involved when you just can't go or the hours you spend in the bathroom (compared to his fifteen minutes), the waking up at night, the intense cramping, and the knowing that it's not just a temporary problem.
Click to expand...



Oh yeah, I hate that so much. Had a few family members say "I don't know how you cope!!" after they've had the runs, and they are all sympathy and understanding. Until a day later when the memory of their minor issue has naturally faded, and they are right back to being un-empathatic, because they have forgotten.
 
From my specialist after I complained of severe post-op flatulence: "You swallow air when you talk. Stop talking. Men don't have that problem." I must say, besides this blooper, he is an amazing surgeon.
 
"You're too young to be sick!"
I hate that one. It would be different if I did this to myself. But I didn't. I can't help it. I wish I wasn't sick, really I do. But I am. My age shouldn't have anything to do with it.
 
25times said:
"You're too young to be sick!"
I hate that one. It would be different if I did this to myself. But I didn't. I can't help it. I wish I wasn't sick, really I do. But I am. My age shouldn't have anything to do with it.
Click to expand...

I hate that too. It's like the elderly have the monopoly on being sick!
 
father-in-law: "I don't think you have a disease. I think you have an imbalance."
 
Had severe stomach cramps to the point that I couldn't hardly walk and water like diarrhea, so my mommy took me to the ER. Since I am 14, they put me on the children's ward. I managed to turn the tv on and lay there and drank while they waited for me to have to pee. I had Maury on :D (love that show). The nurse came in and saw that on. Mind, I was the only one on the ward, she said, "You're going to need to change that channel, Miss Tana. It's not good to be watching these shows, I'm sure your mom would agree." Heck, my mom was watching it with me. She likes it too.

The same day at the same ER, I had a PA named Stacy. She looked like a barbie doll and liked to pet her hair. She came in with her diagnosis.
Stacy- "She just has menstrual cramps. We'll give her some anti-spasm medication."
Me- "Cramps for six weeks?"
Stacy- "It's just cramps. It should all be gone soon."

They sent me home with a poop cup. My crap was bloody so my mom took me back to the same ER when Stacy was walking out. She looked at me and then at my mom. Mom showed her the cup.
Stacy- "Well, it's a good thing we gave you that cup, huh?"
My God I just wanted to rip those extensions right out of her pretty little head and I would have had I not been holding onto mommy because I would crumble to the floor from being so weak if I didn't hold on.

My conversation with my neighbor on the night of her birthday.
Neighbor- "Tana, I know a friend's friend's son has Crohn's. He plays soccer and got kicked in the face on accident. His parents were so worried because he has it so bad that it could cause him to go into a flare."
Mom- "Yeah. It can cause flares for the Crohn's people."
Neighbor- "No. I'm saying he has it so much worse than her."
Mom- "She has it in her stomach. That's pretty severe."
Neighbor- "No. He has it worse then her. At least she can play sports and stuff like that."
Need I remind her of how I haven't really left the house in about three months. And what the heck does it matter who has it worse?? It just matters that you have it. And right before this conversation we were talking about how stupid people shouldn't talk.
Neighbor- "Stupid people should learn to shut their mouths."
ME- "Then no one would be talking."

My mommy bought me a necklace that I had told her about. It's a butterfly, but on the back it says, "Just when the caterpillar thought the world was over, she became a butterfly." I think of this quote about when I was in the hospital with no diagnosis. She now calls me butterfly and I call her caterpillar. :D
 
Tanachild said:
My mommy bought me a necklace that I had told her about. It's a butterfly, but on the back it says, "Just when the caterpillar thought the world was over, she became a butterfly." I think of this quote about when I was in the hospital with no diagnosis. She now calls me butterfly and I call her caterpillar. :D
Click to expand...

You brought tears to my eyes. I bet you are a very beautiful butterfly.
 
AndiGirl said:
I think I hate, "You don't look sick," even more.
Click to expand...

Word

And the "You are too fat to have crohns" - "You are too young to have crohns" - "You look too healthy to have crohns"

If I had 10 cents every time I hear one of those comments I would have paid our mortgage by now
 
Scifimom said:
Word

And the "You are too fat to have crohns" - "You are too young to have crohns" - "You look too healthy to have crohns"

If I had 10 cents every time I hear one of those comments I would have paid our mortgage by now
Click to expand...


Smack, slap . . . those who have the NERVE!!!
 
I told my husband about the sad fact that on occasion we have members who post thoughtless or mean things to each other, and that is was usually in the guise that they were trying to help another member to pick himself or herself up. This is what he said, "You mean that person was telling the truth. They need to kick themselves in the butt and deal with it." I was floored! I told Scott that he sounded like one such poster. He said, "Just send the whiners over to me." I sure hope he was playing with me. Oh gosh!!
 
My favourites so far

- My Gran on my Dads Side - Oh Vicky has Crohn's, Did she catch it from her mother?!
My Mum has had Crohn's for over 15 years, though I would of caught it straight away, and maybe my brother and sister??!

- Nasty Doctor - After he told me I should give up smoking, Me and Mum started laughing saying do you want me to put on some more weight (Was on Pred, put on an extra 2 stone!!) He shouted "This is a serious disease!! You can die from this! Take it more seriously!! I started crying and he brought in another consultant!

- Nurse in a ward - Oh you have Crohn's, I have Crohn's too, it's a nasty disease. (Asked what my job was, I replied I didn't have one due to Crohn's)She then looked down her nose and said, oh, I can work.

- Ex Boyfriend who was trying to "win" me back, has undiagnosed Colitis (Wouldn't go for a camera to get a proper diagnosis!) I know how you feel now, I was in the worst pain yesterday so I know you weren't lying when you said you was in pain... Oh what, lying in pain for 4 YEARS, yet you didn't believe me until you had a pain in your stomach for ONE day!!

- My now Consultant - Can you not get a job because of your actual symptoms of Crohn's or what its done.. mentally?

- Was my favourite IBD doctor, now not so much - In a letter. Vicky just got released from hospital blah blah blah, PLEASE could you make sure she takes her Humira on time, she then might not get a flare up..
Ummm hello? How can I take it on time if no one sends it to my doctors after ringing up 3 times in one week to remind you to send it there!!!

- IBD nurse - Can you stop going to the toilet during the night, your waking the other patients :/

- My now consultant - You're too young to have surgery :/

- Many, Many, Many people - you look fine though? You're too fat to have Crohn's.

- My poor Daddy who doesn't understand it still, even though he has my Mum who's been diagnosed over 15 years, me over 4 years to my sister who has suspected Crohn's - She just can't let any body have anything to themselves. She always has to be in the "in" crowd.
Dear of him.

I have loads more from my ex, mainly I was milking it, I didn't look ill, I could cook and wash up and clean up after him so how could I be ill, I only slept with her because you weren't showing me any love etc... D**khead. Thankfully is now and will stay, my ex =]
 
A few weeks after I got out of the hospital and manage to get to school late everyday because I would go a lot in the morning. My friend asked, "why are you late all the time?"
"I'm sick."
"With what?"
"I have Crohn's Disease."
"What's that?"
"...My intestines hate me."
"EWWWW!"
 
Tanachild said:
A few weeks after I got out of the hospital and manage to get to school late everyday because I would go a lot in the morning. My friend asked, "why are you late all the time?"
"I'm sick."
"With what?"
"I have Crohn's Disease."
"What's that?"
"...My intestines hate me."
"EWWWW!"
Click to expand...
I've had this happen, but they give me a look that says 'why did you tell me that?' instead. They've always asked, it was never just volunteered information.
 

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