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Crohn's Disease Forum

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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!
 
"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 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.
 
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!
 
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!!
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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!
 
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.
 
At school orientation today, I'm still on the Pred and my school mates haven't seen me for a while because of summer vacation and they only saw me when I was on my first week of Pred and my face not so... Moony (swollen). I had a friend correctly identify me and was like, "What happened?"
"What happened with what?"
"Your face."
"Medication."
"Oh, I thought you got stung or something."
I just laughed at her. She's so silly and it was so funny.
 
i have scoliosis fusion surgery and favorite is I go for a stomach test and the results are always.

1. patient has foreign objects attached to spine.
2. patient appears to have curvature of spine (possibly scoliosis)

however they get so distracted by that and forget to comment on my stomach! yes i have rods in my back. I got over it, radiologist should as well.

My rhemy: lets get you over this heartburn. Just take a lot of tums and get over it.
 
I went to work to drop off my doctors note saying I can't work for another week.
My "well-meaning" coworkers, who haven't contacted me since I've been out, decided it was acceptable to discuss my weight. One of them looked at me and said...girl you need to eat a cheeseburger!
What makes people think it's acceptable to comment, and insult, "skinny" people like that.
If I were to walk up to someone who is overweight and say...you need to stop eating so many cheeseburgers, I'd be knocked out!
It aggravates me to no end...I don't try to be this skinny.
I have an idea...I should just tell them to call my doctors and tell them to prescribe me a cheeseburger for my non existent health problems ! LOL
Some people...good grief!
 
All of these are so true... I get this stuff all the time!

1st GI: "you must have IBS, take this med, come back in a month"
One month later
Me: "the med made my throat close up, I'm allergic"
1st GI: "you must have gotten sick"
Me: "it went away, then came back when I took the med again"
1st GI: "LIAR!!!"


GP1: *listens to my symptoms* "this is all in your head. You are perfectly fine. Take these antidepressants, you'll have no pain in three weeks"

Old friend of mine: "you must be doing this to yourself. Or maybe its a bunch of little things wrong with you and you are taking it too seriously". Ok sure....

Current GI: "You just don't want to accept your condition".

OBGYN: "you're just constipated! Eat some apricot and you will be fine".

Husband:"Since they wont give you a diagnosis, you will just have to fight through the pain. You have to get out of the house even on your bad days. We never do anything because you are sick"...he has his bad days with this illness too obviously...he has joined a well spouse forum to try and figure this out for himself.
 
These are so absolutely hysterical! I love the Pred or Dead.. I have a sort of funny story to share. My DH (Dear Husband) has been and is very supportive of this, as I have still yet to have the Final Stamp Surgery in Sept (Double Balloon) I have been taken off Pred, that is no fun. Well we were scheduled for an 11am Ferry a couple of weeks back; Can you schedule Crohns? Needless to say we made the 2pm. In the car waiting in line I am still cramping and squirming a bit and I see in my periphial (sp) my DH looking the other way dramatically avoiding any notice of my discomfort. Once we arrived at our destination; He also may have said a thing or two 'Jokingly of course' to my inlaws about me being responsible for the delay.. I was a little steamed but kept it to myself b/c afterall, We were 4hrs behind schedule. I also began to wonder if he truly understood what I was experiencing or if he thought I was being; you know a drama queen and or milking this. I let it go though. Reminded myself he is absolutely a DH. Guess what? There is a Crohns God. My DH the following Sunday became very uncomfortable and described to me severe cramping and gurgling with stabbing pains on his left side and alternate liquid/black stool and blood! Yikes sounds almost like Crohns! The next morning being a troooper he dosed himself with Ready? --> Ibuprophen, went to work. He was not there long before he had to come home due to an unfortunate accident in his shorts. Two days he is in AGONY. Finally Go to Dr.: Acute Diverticulitis!!! I look it up online and I am ROLLING! He gets to ACTUALLY EXPERIENCE what I do every day! Only temporarily though. He was put on antibiotics and a diet change. He was good to go after only one week of being me. But I am greatful that he got it. And I do not feel one bit guilty about it either. In fact I have told anyone who cares to hear it that DH got Diverticulitis as "Sympathy Pain" and the best part? He Agrees! Now I want it made clear that I have never even heard of Diverticulitis until this all happened, so I did NOT will this to happen to him, nor do I encourage other CD sufferers to "Will" this on their signifigant others. But, it is rather harmless very common and antibiotics clear it up with a sensible diet. Will away at your own risk! (I want an emoticon with it's tongue sticking out for this to end on the right note :p )
 
On Being Skinny.. I have lost 23lbs. 5lbs was the latest between a Thursday Dr appt and a Tuesday. That was last Tuesday. Nice right? What would be nice is eating a 3 Skimpy legs of Steamed Crab! Not heaving it up a 1/2 hr later and knotting up all night then spewing juice the next morning. This is what I did last night and today. (Still pinching my ...) Too graphic?
 
"I always forget your sick, I mean, it's not that obvious." -My "loving" ex. I guess since I don't limp around like his mother (who is trying to get diagnosed with something, likely MS), I'm don't really seem sick. It's not like I bolt for the bathroom, am in there for twenty minutes and am back less than ten minutes after I leave. That's not noticeable at all.
Maybe I'm just spoiled though. When I was in the process of getting diagnosed I was dating a guy who's brother has Crohn's and had just gotten an ileostomy six months before. He was the most understanding person I've come across that doesn't have Crohn's themselves.
 
Gidget, my father in law has diverticulitis and goes to the same GI I do. He thinks he is an expert on my Crohn's and actually tries to give me advice about my meds. I'm like, seriously?

I wore makeup the other day to see my in-laws. Everyone kept saying, "Oh you must be feeling better! You look so good with makeup on!" I don't know why it bothered me so much. Yes, I painted my face. No, it did not make my Crohn's any better. Thanks, I'm glad to know I look like shit the majority of the time. I know I should smile and say thanks for the compliment, but why must they always have double meaning? No one can ever just say, "You look nice today."

Besides, my mascara runs when I throw up.
 
I get comments like that too SarahAnne...I don't understand it either! My eyelashes has almost all fallen out, so when I wear mascara it makes a pretty good difference, and people always make me realize they think I look more sickly when I don't have the energy to put the stuff on in the first place. >.< Of course I don't think they realize its kind of insulting, they are trying to say you look good. :)
 
Well I think I have been very fortunate w/my DH, :kiss: Since his bout w/diverticulitis he has been very very sympathetic. :hug: And he did try to give me remdies, over the counter nausea stuff, anti diahreah (can never spell that!) stuff, supplemental teas and vitamins. I look at it as him being a good hubby, trying to do what men do and 'Fix-it' I appreciate all his sweet efforts. :heart:
As for makeup. My Wonderful (no sarcasm) Dr did say to me one day after I flippantly said how much worse can it get? Her response: Well you were able to put your make-up on today.
I thought about this and you know what? I keep my make-up in the bathroom and my sink is right in front of my commode... I have PLENTY of time to put that on! :ywow: You know considering that is where I spend a good portion of my day. :poo:
 
LOL!!!

Just trying to picture myself putting on makeup with some of the faces I make when on the toilet......

:poo:
 
SarahAnne said:
LOL!!!

Just trying to picture myself putting on makeup with some of the faces I make when on the toilet......

:poo:
Click to expand...

:ytongue: :LOL I think my mascara triggers a BM!!!! ROFL! No, not funny. And it doesn't .. trigger! ;o But if it's not a puzzle book what the heck. It makes for some really great opportunities to experiment with your makeup! Ha ha!!!
 
:yfaint: Oh yeah! I gave blood today! (just more blood tests) They did it differently this time, I have had to go in every other week b/c my WBC is high. and keeps getting higher! So today they used an entire vial and instead of a syringe it was a tube that was called vaccuum something! Heres to new!
 
Crohn's Mom said:
I have an idea...I should just tell them to call my doctors and tell them to prescribe me a cheeseburger for my non existent health problems ! LOL Some people...good grief!
Click to expand...

Mmm... I wish I were on cheeseburgers three times a day. At least for a while - I'm sure that would get old!

I get this too on occasion, and it can be frustrating. Chin up, CM. Do things to feel good for you and your family, not bozos at work. :lol2:
 
It's such a relief to read all this. I was just diagnosed today and my boyfriend's mother's reaction was "Oh, wow.. well you know, there's this woman I work with who has it. All her siblings have it as well and well.. one of them is handling it okay."

Way to inspire confidence!

If I hear one more story about a friend of a friend or a coworker's daughter and how awesome their life is and how amazingly they handle their condition, I will snap. I just found out, I want to wallow for a minute, not smile and nod at your stories. ugh.
 
I was told by a "concerned" acquaintance that all of this would go away if I wouldn't drink so many sodas.
 
2thFairy said:
I was told by a "concerned" acquaintance that all of this would go away if I wouldn't drink so many sodas.
Click to expand...

That's crazy!

One of my good friends, who doesn't quite understand, said to me at dinner last night, "Well, at least you aren't dead!". Ok....
 
My mom was talking to an old friend of hers on the phone today, and she was telling her about how I had my first remicade infusion today. Of course, the friend has a cousin's uncle's dad or something, who has crohns. It seems like everyone does. And they either "do really well with it" or they're dead or something. I'm so sick of hearing that. Even my mom was complaining that everyone has an aunt's sister's husband with crohns. I don't care how amazing THEIR life is with crohns. Mine sucks. It's not some generic disease, where everyone has the same symptoms and reaction to treatments.

I was reading something on the internet a few days ago, about some guy who "cured" his crohns with the SCD diet. He swears by it. I'm glad it worked for him, and maybe it works for other people too. But stop pushing your so-called "cures" on me. If the SCD diet cured crohns, don't you think they would use that as a treatment? Instead of pumping me full of steroids and remicade? Then I read in one of the comments that one guy cured his crohns BY NOT WASHING HIS BUTT. He literally just stopped washing his crack, because "the chemicals in soap caused his crohns." Well, clearly you didn't have crohns, or you were using the most insane acid soap in the world.
:ylol:
 
Some people are just incredible. I worked at this one place and was forced to take 3 days off for a bad flare up/hospital visit. When I finally got to go back to work, I was greeted with a few people (including the boss who was in his young 20's) wanting to kick my ass because "I knew they were going to be busy those days so I planned those days off" I thought maybe once I flashed the doctors note they'd back off and feel bad, and maybe get an apology out of them, instead their words were "Well anyone can pay $25 and get a doctors note". Long story short, I quit that job, called the labour board, and got some help with EI while I looked for a new job.


Also, thanks to good old prednisone, my nickname through grade school was "the squirrel". Gotta love those puffy cheeks
 
25times said:
Then I read in one of the comments that one guy cured his crohns BY NOT WASHING HIS BUTT. He literally just stopped washing his crack, because "the chemicals in soap caused his crohns." Well, clearly you didn't have crohns, or you were using the most insane acid soap in the world.
:ylol:
Click to expand...

25times owes me a new keyboard, I just spit my tea all over mine. :rof::rof::rof::rof::rof::rof::rof::rof::rof::rof::rof::rof::rof::rof::rof::rof::rof::rof::rof::rof::rof::rof::rof:
 
I'm still undiagnosed ( joy!), but my dad has always been a compassionate bloke ( insert sarcasm here!). He came out with this one when I'd met him for a beer for his birthday.

Dad: "how's it going son?"

Me: "not too bad, had a few bouts of diarrhoea this morning then was sick for a little while"

Dad: "ah lovely thanks for the detail, they do a great Sunday dinner here!"

If only he knew how much fun that would cause me!
 
My mother on the phone (she's been out of country for 6 months for work, I got diagnosed while she's been away):

Your sister and I think that since you're losing so much weight, you're just going to feel fabulous! The Crohn's and weight loss will sort of cancel each other out!

She then proceeded to talk about how when she gets home she will set up my old bedroom and I can come back home and stay for a while and relax.. Seemed nice.. she then followed it up by telling me she would feed me nothing but salad (puts me in horrible pain) and that I probably don't even have Crohn's (despite my dr. telling me I do....)

She then rubbed in the fact I don't have a job (got sick right after graduation), and then ended the conversation by chastising me for not buying a phone card and calling her (because I love these conversations that end in me feeling like shit about myself :thumleft:)
 

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