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Crohn's Disease Forum

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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.
 
madasins mommy said:
No one else will want to be in a relationship with you once they find out you have a sick kid.

My daughters "loving" father
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EW! What a jerk! You will totally find someone who loves you AND your daughter! My husband is a shining example that there are wonderful men out there! Be patient (unless you've already found him?).
 
madasins mommy said:
No one else will want to be in a relationship with you once they find out you have a sick kid.

My daughters "loving" father
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This is a comment only a real ******** would make. Did you tell him to put his comment so far up his ass to keep company to his head?
 
umm.....not exactly scifimom but there were a few other choice words said on that note. he is a real d#$khead! jessi....no i have not found him i havent even tried lol. i am just concentrating on her and my boys, its hard to want to because if her own father doesnt care or want to deal with it...its hard to believe another man would...shes only 3 we have a looong road ahead of us
 
madasins mommy said:
umm.....not exactly scifimom but there were a few other choice words said on that note. he is a real d#$khead! jessi....no i have not found him i havent even tried lol. i am just concentrating on her and my boys, its hard to want to because if her own father doesnt care or want to deal with it...its hard to believe another man would...shes only 3 we have a looong road ahead of us
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Some guys are just like that...insensitive pricks who think their God's gift to the world and you know what you and Maddison are SO MUCH better off without some d-bag bringing you added stress. There are very sweet loving careing male individuals in the world. I hope one day one will find his way to you two and your sons of coarse. You all really deserve it!
 
"you can't have Crohn's, you're fat".... from a co-worker

After being told there was nothing they could do in emerge...."you just have Crohn's"
 
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.
 
GI: How areyou doing?
Me: I'm still having blood and slight cramps before using the bathroom
GI: are your REALLY taking the meds daily?
Me:...uhm well duh of coarse!
GI: "well...uhm I guess we'll try you on 6mp and you needto go for weekly blood draws and if you miss just one I'll take you off the medicine immediatly no matter how well it works."
Me: ...uhm k...thanks?

On another note I hate that bigger people call me a skinny bitch just because I'm skinny. Really? Like I need to be called a bitch on top of being skinny thanks fat bitch how do you like it?
 
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 **** 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:
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: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!
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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.
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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:
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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 **** about myself :thumleft:)
 
The guy in charge of parking at work when trying to kick me out the on site parking "Your doctors letter is 3 months old, why are you still sick?"

My husband "Its just crohns stop feeling sorry for yourself"

My husband if I eat something I know causes me pain "I wont be changing your bags you know!!"

Wen people make comments because they don't understand the daily battle I want to give them a box of laxatives and some bad salmon so that can feel a portion of what we go through everyday!!!
 
I have a surgery consult appointment a week from today. My new GI team is at UAB, 5 hours from where I live (best care I could get - I'm dying in this small town with no real dr.'s to speak of). My troubles are mostly money related right now. The gas driving back and forth is no joke, and when I had my appointment two weeks ago, my mom and I had to drive up a day early and get a motel because my appt. was early the next am. My appointment this Friday is at 8:15am, so we will have to drive up Thursday and get another room. I realize they won't do a surgery over the weekend, so I am hoping to get admitted on Friday to have my labs, pre-op, and stuff done over the weekend so I can have the surgery on Monday. Is this unheard of? I can't afford to drive back home and come back over the weekend, and I certainly can't afford a motel for 3 more nights. My mom was staying in my room when I was in hospital earlier this month, I am hoping we can do this again. Is it up to the insurance company, or can the surgeon make the call? I am desperately trying to figure out what to do. If he sees me on Friday, and I can't get into the hospital until Monday, mom and I might be sleeping in my SUV in the parking garage over the weekend.

The worst thing of it all is that my husband can't be there for my actual surgery. He is the only one supporting our family right now and has no more vacation time (they actually let him go in the hole with vacation so his check wouldn't be short). He has to stay here and work, and watch the kids. He will be able to come up the following weekend with my dad, hopefully I will be well enough to come home by the weekend. The logistics of this is stressing me out; I just want to have the damn surgery done, over with and be resting at home.
 
surgery is done on weekends, at least up here in Cleveland. can you try calling them to ask and explain your issue?
 
Think I might....for some reason when I was up there before one of the doctor's implied not much might get done over the weekend....that was labor day weekend, though, now that I'm remembering. GI wants surgery done ASAP, surgeon wanted me to raise nutrition levels and ease bowels a bit first. I'm going to let the surgeon know that I have been doing FANTASTIC since I've been home, I'm on a liquid diet with high calorie supplement drinks. I have been having 1 formed, normal, pain-free BM each day, in the morning. No more nausea, vomiting or diarrhea. If that's not healthy enough for surgery, I don't know what is. As long as it isn't a problem with my insurance company, but I think what the surgeon wants, the surgeon gets.
 
there are days where I wish I could tell people to just go pound salt. If you haven't walked a day in my shoes, just shut the heck up. If you are healthy and have no clue about IBD, keep your trap closed. If you even think you know anything about Crohn's but DON'T, keep walking............IF you say something really really stupid to try and cure me, don't let the door hit your @rse on the way out.

So sick of these so called friends, who aren't, who think they know more than me. I've had Crohn's for more than 25 yrs. They can kiss the hiney I don't have.

thank you for letting me vent. ~Gutless Wonder woman :biggrin:
 
Yesterday I was at a gas station and needed the bathroom. When I checked the door the bathroom was in use. I waited, while praying I would not mess my pants, for the other guy to get out of the bathroom. When he did I moved to go in, and this other guy blasted in front of me and said he was in line first, as he shut the door. When he got out I made him look at my Crohn's ID Card (from the CCFA), which says, in bold print "I CAN'T WAIT" The bearer of this card has a medical condition that requires him/her to use the bathroom facilities urgently. Thanks for your help and understanding. "

Then I ran into the bathroom. He just said, well "I was in line before you" (which he wasn't). I had to use my emergency change of clothes, which I had in the car.
 
Oh, Doug. I am so sorry. I have a hard time believing the rudeness and even stupidity of other people sometimes.
 
Oh man Doug, that sucks...:(

Seems to be far too many people around these days that are downright selfish, they don't give a toss about anyone but themselves.

We loves ya though Dougie...:kiss:

Dusty. xxx
 
SarahAnne said:
I have a surgery consult appointment a week from today. My new GI team is at UAB, 5 hours from where I live (best care I could get - I'm dying in this small town with no real dr.'s to speak of). My troubles are mostly money related right now. The gas driving back and forth is no joke, and when I had my appointment two weeks ago, my mom and I had to drive up a day early and get a motel because my appt. was early the next am. My appointment this Friday is at 8:15am, so we will have to drive up Thursday and get another room. I realize they won't do a surgery over the weekend, so I am hoping to get admitted on Friday to have my labs, pre-op, and stuff done over the weekend so I can have the surgery on Monday. Is this unheard of? I can't afford to drive back home and come back over the weekend, and I certainly can't afford a motel for 3 more nights. My mom was staying in my room when I was in hospital earlier this month, I am hoping we can do this again. Is it up to the insurance company, or can the surgeon make the call? I am desperately trying to figure out what to do. If he sees me on Friday, and I can't get into the hospital until Monday, mom and I might be sleeping in my SUV in the parking garage over the weekend.

The worst thing of it all is that my husband can't be there for my actual surgery. He is the only one supporting our family right now and has no more vacation time (they actually let him go in the hole with vacation so his check wouldn't be short). He has to stay here and work, and watch the kids. He will be able to come up the following weekend with my dad, hopefully I will be well enough to come home by the weekend. The logistics of this is stressing me out; I just want to have the damn surgery done, over with and be resting at home.
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UAB is an amazing hospital. My husband is from Birmingham and I visited that hospital a couple times when his friends were admitted there. The quality of care is just spectacular!
 
Doug, I am so sorry you had to go through that. :(

Yesterday when I talked to my college adviser about my situation, her reply was "but you are the picture of perfect health!". When I explained my weight loss and pain she asked me my height and tried to say my weight loss was fine...then when I told her my feet have shrunk 2 shoe sizes (must be bone, there was no fat there to lose), she completely brushed it off, telling me I must be wrong. I know whatever I have is an invisible illness...but geez...my ribs are sticking out like no other...I know I had clothes on, but please don't act like I'm being dramatic!
 
allieinwonder said:
Yesterday when I talked to my college adviser about my situation, her reply was "but you are the picture of perfect health!". When I explained my weight loss and pain she asked me my height and tried to say my weight loss was fine...then when I told her my feet have shrunk 2 shoe sizes (must be bone, there was no fat there to lose), she completely brushed it off, telling me I must be wrong. I know whatever I have is an invisible illness...but geez...my ribs are sticking out like no other...I know I had clothes on, but please don't act like I'm being dramatic!
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Just tell your adviser what you'd give to be able to give her "the usual" load of bull she gets from all the healthy kids. I'd also offer to get her whatever kinds of proof or doctors' notes or whatever she feels she needs. If she's worth anything at her job, there will be a point where you go from the "typical" kinds of things she hears to her understanding that you're telling the truth. I'm sure she hears lots of drama. Don't let the skepticism be the end of it!
 
Crohn'sGirl said:
UAB is an amazing hospital. My husband is from Birmingham and I visited that hospital a couple times when his friends were admitted there. The quality of care is just spectacular!
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I completely agree!! I have to drive 5 hours to get there, and it is totally worth it. The doctors, nurses, and other staff are so helpful and considerate. I didn't realize how crappy the care was here at my little home town hospital until I went there.


Such a tiny little vent, but here goes....I've been on a liquid/supplement diet only for over a month now per my surgeon. My surgery is scheduled for 10/10, so I won't be able to eat anything until after that. It's not like I want to scarf a hamburger or anything, my stricture is way too bad for that, but you guys all know that regardless of the pain, there still is hunger. Sometimes I get really hungry, I had a food dream the other night! I dreamed I was talking to my husband in the kitchen and just started munching on something. Then I remembered (in my dream!) that I wasn't supposed to be eating so I ran to the sink and started spitting everything out! I can't even enjoy food in my dreams anymore!!!

And Sunday morning my husband makes cinnamon rolls for the kids....pulls them out of the oven, shoves the delicious, piping hot pan under my nose and says, "Do these look done to you?" AARRGGHH! I screamed at him, "Will you please not shove food right underneath my nose??!!" :voodoo:
 
SarahAnne said:
And Sunday morning my husband makes cinnamon rolls for the kids....pulls them out of the oven, shoves the delicious, piping hot pan under my nose and says, "Do these look done to you?" AARRGGHH! I screamed at him, "Will you please not shove food right underneath my nose??!!" :voodoo:
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SarahAnne, That is so mean. Very passive aggressive of him. Shame on him!
 
sawdust said:
Just tell your adviser what you'd give to be able to give her "the usual" load of bull she gets from all the healthy kids. I'd also offer to get her whatever kinds of proof or doctors' notes or whatever she feels she needs. If she's worth anything at her job, there will be a point where you go from the "typical" kinds of things she hears to her understanding that you're telling the truth. I'm sure she hears lots of drama. Don't let the skepticism be the end of it!
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Yeah, I don't really need anything from her bc of my health issues, I was just updating her because I left suddenly a year ago because of my health, and she was concerned at the time. If I think I need "special attention" because of my illness I have to go to the disabilities office...I haven't gotten the courage to go there yet. ~.~ At this point I don't think they could help me because of an active autoimmune illness anyway.

But you are so right! She probably gets all kinds of excuses all the time. I wasn't trying to give her excuses for anything...I came back, didn't I? :p
 
I had to cancel a planned trip with my husband to his mother's house this last weekend because I couldn't do the long drive. An ex-friend texted me that she missed seeming me at church with my husband up there and that James had said I was sick to my stonach.

I told her I was going to the GI next week and hopefully getting a dx so I could finally get some meds and I would come see them (although I could go my life without seeing her).

Her: it will be nice to talk to a doctor and find out nothing is wrong with you. I had a bug a month ago and had to go to the doctor.

Me: well my gp and the ER doctor think something is seriously wrong but can't do the tests themselves. Crohn's has been mentioned many a times.

Her: you are just scarring yourself with google. I did that about my bug.

I didn't say anything but the next day I emailed her a long email explaining what I was going through and it wasn't a bug. Explained the two ER visits the test, the mucus, the blood, the bad diarrhea and constipation, the huge belly,m the pain...

Got a reply, OMG! That sounds awful.
 
bamboling, my mother in law did the same thing to me. :( Every time I explain my situation she keeps telling me her sister, who has IBS, is going through the same thing and I need to stop being so dramatic. she has even sent me emails of her sisters medications telling me I need to be on those too. I have learned to ignore it, and I have stopped trying to explain that I have something more serious....people can be so dense sometimes ~.~
 
makes ya wanna smack them upside the head sometimes doesn't it allie?
I hate it when some folks just think they have all the answers and they try to cure you as well.

Grrrrrrrrrrr My heart goes out to you my friend. ~GW :heart::heart::heart:
 
I guess I have always understood the whole Crohn's situation and how terrible it really is. Believe me, family gatherings are hard at the Grandparents because only one Loo!!! :) so I never doubt peoples troubles, I have been there.

And back in March I was having bad stomach problems, similar but not as bad as now. I went to the doctor because I pulled a muscle in weighlifting. I mention the whole stomach pain and all the problems and told him my family history of CD... And he said,

"There is no way you have Crohn's because you aren't skinny."

What the @/#+? Never went back to him. And I am not big! I am a petite personm. Made me sad that he didn't listen and that I had worked my but off the year before to actually be thin, I has lost 40 pounds. Now, the weight is coming off not meaning to.
 
My first GI missed a stricture because he was too busy worrying about his next colonoscopy. The other doctors in town call him "a scope jockey." That is at least the funniest comment to come out of that terribleness. :)
 
LOL KittyPants!

There is a GI practice here in town that has multiple doctors, and it's about the only place in this town to go. So they are very busy and it's mostly old people. My dad (admittedly, he is a grumpy old man) went there once and didn't like the doctors so he stopped going. He has Barrett's esophagus, but no bowel problems. So he usually gets upper scopes. My dad said, "That place is a revolving door of colonoscopies and nothing else. I'm not going back to that a$$ factory!"

Now every time anyone in the family passes that building, someone calls out, "Look, the a$$ factory!" And we all crack up laughing. :rof:
 
SarahAnne said:
LOL KittyPants!


Now every time anyone in the family passes that building, someone calls out, "Look, the a$$ factory!" And we all crack up laughing. :rof:
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Oh gosh! This gave me a good laugh! I need to share this with Scott and Randy.
 
Co-Worker who asked me "so what disease do you have?" during a bad flare.

Boss that refused to let me run an errand for him because I "looked like a cripple."

When I told one of my friends about my diagnosis, she asked "so does that mean you have to go to the bathroom a lot?"

Another said "oh, I had a friend who worked with someone with that, and he stunk up the bathroom all the time."

My mom still refers to it as my "stomach problem" because she doesn't believe I have Crohn's Disease.

Fiance whose aunt asked him to break up with me because she didn't believe I would be able to have children and that I would die young. And he defended her because she's a nurse and she knows what she's talking about. We are no longer together.

..Oh, and I will never forget the faith healing videos that my mom made me watch which explained that people who are sick and remain sick after prayer are sick because they didn't really want to get better, and that if you buy this person's DVD, he will show you how to pray for healing and believe it and be healed.
 
MDCA, I thought I was the only one with a parent who didn't believe in Crohn's disease! It's not like I'm dying - why do parents sometimes find it hard to accept?
 
Loriebird said:
..Oh, and I will never forget the faith healing videos that my mom made me watch which explained that people who are sick and remain sick after prayer are sick because they didn't really want to get better, and that if you buy this person's DVD, he will show you how to pray for healing and believe it and be healed.
Click to expand...

Ha! My Aunt is very religious like that, she had rectal cancer a couple of years ago. After months of CHEMO and RADIATION, Jesus cured her cancer. :ylol:

She recently sent me a letter stating that the youth pastor at her church was diagnosed with Crohn's and the prayer group cured it. She sent me a prayer cloth that everyone in her church prayed over, she wants me to put it in my pillow when I go into surgery and Jesus will cure my Crohn's. I think she believes everything can be cured with prayer, and if you don't get better, you're not praying enough. :mad2:

I'm pretty sure it's my surgeon's skill that's gonna get me through. :thumright:
 
Ugh!! SarahAnne, thst is so frustrating! I spoke to my mom yesterday, and she again asked me to watch the DVDs and pray so I wouldn't need surgery. Don't people realize how hurtful it is when they brush you off with "just pray about it" and if you're not getting better, I guess God doesn't want you to be well?? How does that help anyone? I went to church with mom one Sunday and watched her pastor "cure" a woman of terminal cancer. Have not had the heart to ask if she is still alive.

Good luck with your surgery!!
 
Hi Loriebird and SarahAnne. I think there is a place for prayer, but I think God answers prayer through people, not through some miraculous event. In dealing with this awful disease I pray for wisdom from myself and my doctors, and that the doctors can be guided to the best course of action for me.

As for people saying if you pray and did not get cured you did not pray enough, or have enough faith, that is baloney.
 
I just want to say to you guys that I am a Christian and I do believe God can cure people of "incurable" diseases but I believe God can do it through a miracle not by watching a DVD. Plus in all seriousness I struggled with the whole if I am praying and not getting better does that mean God hates me? I talked with my Pastor and Pastor's wife and realized God gives people all different storms in life to weather and this is one of mine. He is not punishing me for something. I also agree with DougUte I pray everytime I go into the doctors that this one will be guided with wisdom. I honestly believe God gave us doctor's for a reason along with our free will to go to them to get medical help.
 
My family didn't think I had an eating disorder, but every doctor did. And plenty of women would say, "I wish I had a disease that made me skinny." Even women I didn't know would say this-one day I snapped and said, "Would you like a disease that made you throw up and have diarrhea?"
 
I have had several people tell me they wish they could lose weight like I can. I try to explain why I don't recommend the method, but they just don't get it.
 
When I was 12 and undiagnosed the 1st pediatrician told my mom that I was losing weight to gain attention from her. YEAH RIGHT!!! You forgot to mention that I was bleeding w/constipation, had abdominal pain, ran low grade fevers, and was tired all the time but go ahead with that dx idiot. Luckily, his partner didn't see it that was and told her that something was seriously wrong and referred us to a GI who ran a battery of tests on me to find out that I had Crohn's.

Over the years, I had family members I wasn't even close to tell me that I should be taking this medication or that one, try this diet to cure me, blah blah blah.....then I had so called friends tell me that if I stressed out I'd be making myself sick. The only thing that made me sick was their ignorance.

The kicker was my own sister really never supported me as she thought I was faking my illness and a drug addict. Before her wedding 15 yrs. ago, I had to take a few months off of work due to a nasty flare and then on her wedding day I still wasn't up to par but I got through it. Come to find out from one of the bridal party members that my sister was telling everyone that I was out to ruin her big day on purpose by getting sick.

I had a low key wedding because we were saving up for a house plus it was the first time in a while I was in remission & I didn't need any more stress. My sister started trouble w/my folks by claiming I said and did all these terrible things (which I didn't do) so nobody from my family attended the ceremony. Their loss really as it was a very nice wedding and we had a blast at the reception w/an AWESOME dinner as it was paid for months ahead of time so his family got to order whatever they wanted off the special menu.

I haven't spoken to my sister in 6 yrs. and haven't seen my nieces or nephews whom I truly miss. I don't miss her starting trouble, the lies, false accusations, etc. My husband was right all along that she has some sort of mental issues and needs help but she won't get any because she won't admit it.

The only funny thing looking back now is she use to call me the "bag lady" when I first got my ileostomy in high school. That bag saved my life. :)
 
I've been going back and forth to UAB the last two months for surgical consultations and other things. It's a 5 hour drive, and my mom usually drives up with me the day before, we go to my appointment and then drive home. Our last trip home we stopped at a gas station so I could "go". I looked terrible, skinny and cracked out, with bruises all up and down my arms from blown veins. My mom was looking for lemon drops and when I looked up as I was telling her I found them, there was a lady (roughly my age, maybe a bit older) standing next to me. I don't know where she worked, but she was wearing scrubs so I immediately thought health care.

She looked me and my mom up and down (my mom is super short and super skinny too, we make quite a sickly looking pair), and giggles and says, "Is that all it takes to be so skinny? I should start buying lemon drops, these candy bars aren't doing anything for me!"

I haven't eaten real food in 2 months and I'm about to have my abdomen cut open and my guts chopped up again.

My mom and I just stared at her like she was crazy. I really wanted to punch her in the mouth.
 
:ywow: OMG Gutless, I think this forum may have a "winner" in the unbelievable catagory! That is just terrible-so sorry you went through that!

@Sarahanne-I hope she chokes on those lemon drops, what the f kind of nurse says that???
 
Mountaingem said:
:ywow: OMG Gutless, I think this forum may have a "winner" in the unbelievable catagory! That is just terrible-so sorry you went through that!

@Sarahanne-I hope she chokes on those lemon drops, what the f kind of nurse says that???
Click to expand...

Someone who opens their mouth before they think! When people say rude things like that I usually just tell them it's not diet, it's genetic. I was just feeling really miserable that day, and I wanted a flipping candy bar!
 
unbelievable!

How many of you have had physician's/dieticians/nurse's etc. etc. say

'well your blood work looks really good this time...are you sure you don't feel well????"
 
Wow, I didn't know so many people got poked and prodded for having this...

Mum: Cancer patients go to school more often than you do.
How do I know if you are faking it or not? (Whilst vomiting into a bucket.)
It's just the cold making you sick, it will go away.
You must be bulimic, stop being bulimic!
Can't you just not be sick for once?
*Various implications that I choose not to eat, instead of not being ABLE to eat.*

Too many people to recall: "I wish I had Crohn's diease, then I could lose weight!" --- If you were dry heaving, throwing up every single thing you eat, you would wish you didn't have it!

Scifimom said:
yes!
Click to expand...

+1 for that.

Not only this but my family keeps yelling at me saying that it's just a cold or it's in my head.
 
mine too, Zilla, except I'm fat so I get a whole other section of "how sick can you be, you're fat?"

people can be so harsh and clueless.
 
Yeah, It's way too difficult just to get people to keep their mouth shut about things they don't know about, unless they are genuinely trying to get an understanding from you. :ymad:
 
Well for a change I had a possitive meeting yesterday with my GI. I went to see him without an appointment cause I spend last week with heavy D and blood in my stools (talk about ALOT of blood) My GI heard my symptoms, did some blood work and for ONCE he BELIEVED ME. He said that my labs are good, but based on my file my labs are always good even when I am flaring (YES two years after dx he finally figured it out) He told me to do my next Humira shot a little earlier and if I see more blood or have more symptoms to come back. I was actually ready to start screaming HALLELUJA in his office. He also told me that I should hear my body and let him know if I dont feel well since I am the one who knows how I feel. I left the office almost doing the happy Snoopy dance.
 
When I was pregnant I started flaring around 6 weeks. I also had massively bad morning sickness (called hyperemises) which could have been related to the flare. Anyway, I went to a dietitian because I had already lost close to 20 pounds. She said it was my fault if something happened to the baby because I wasn't eating properly. She said I needed more fiber and fresh fruits and vegetables. I couldn't even speak at that point because I was so dumbfounded. Finally I replied "oh, so you think a bowel obstruction would be good for the baby?" Between being worried sick about the baby and the hormones I cried for hours over that visit.

But the absolute 100% worst was from the GI doc who did my first ever colonoscopy. I had been sick for over a year, had been in and out of the hospital more times than I could count, unable to eat, etc. My mother finally demanded they do a colonoscopy. In the middle of it, I remember the doctor saying "oh, it's Crohn's disease" and I started crying. He snapped at me "stop crying like a baby!" Needless to say, I never once went back to him again.
 
I was tutoring a 'friend' for a while and now that I'm sick I simply don't have the energy to do so for the time being. She got upset and said "Well you don't look sick!". I have very little to do with this individual now
 
A guy at my work actually came up to me infront of my boss and told me that I should get help for my eating disorder and that I'm a bad influence on his daughter. I was so upset and all my boss said was "well you do look pretty skinny". I have never felt so low in my life. What a jerk! I would do anything to put a few pounds on. I cried about this for weeks. I still feel anger when he comes to my work even though this happened 2 months ago.
 
Went to the ER Thursday for some weird pains preceeded by a long sharp stabbing pain. NOT my Crohn's pain. After waiting for two hours, the doc finally made an apearance. Totally blowing off the pain I "had" saying "well, since you have Crohn's you will have some pain". Really?! I would have never guessed that! Maybe that's why my doc already rx's me Lortab 10's!

Ugh. Another ER and a few days... Doc says maybe Gallstones. I think just a ruptured cyst as a CT showed I have yet another remaining on an overy. Yay. No worries. Doc at the first ER just really put the icing on the cake of having Crohn's. UGH
 
oh i hope it's not a ruptured ovary cyst . that was the most painful thing ever. Even with out crohns (then) or any other health issues and my case being very straight forward it was surprisingly hard to diagnose. I spent more time recovering from the rupture then the surgery.
a lot of people end up waiting way to long.
Good luck!
 
Ruptured cysts are the worst! :( I had one two years ago, thank god they found it quickly with a CT scan. I still had a cyst on my left ovary after the first one burst. >.< Yuck!
 
Well, the first two times I had the same pain I was in college (8 yrs ago). First time I was working in a stock room, and it brought me to my knees. Second time (within a week) I was having sex, ran to the bathroom and dropped to the floor like a fly. Docs said it was ruptured cysts, but couldn't prove it.

This time, I know it was the same pain. And I still have one cyst left. ER doc said 2.5cm, radiologist report says 1.9cm. Who knows. But I'll be upset if it ruptures after I get my Crohn's back in place. Please go away, or speak up now!! Good to know, though, that my ovarian cysts come in packs of two.

Oh, and they were able to find my left ovary. I'm very happy about this. I've had a couple of pelvic ultrasounds, and it wasn't anywhere to be seen. The CT showed it tucked away in a corner somewhere. Maybe that's where the first cyst ruptured. My luck, at least.

But I know my female stuff has always agrevated my Crohn's. After my first Small Bowel Series, I found out that my illium hands lower than normal. Guess it enjoys the company of my uterus or something.

Either way, thanks guys. :heart:
 
heh Jessica, I had two ultrasounds once because they couldn't find one of my ovaries during the first one. the second tech said it was hiding :eek: it must be picture-shy.
 
One of my cysts ruptured because of sex too. It was actually my first time..losing my virginity caused the worst pain ever! We were so nervous it wasn't as good as it could have been (if you know what I mean)....so if it had, I bet both of the cysts would have ruptured. Yuck! What a way to lose your virginity, LOL.

Mine was proved by CT scan. They saw a ton of fluid in my abdomen and the reminants of the cyst. Ouch!
 
Thank you AndiGirl for starting this thread!!! This is probably, most definitely, a topic that we can all comment on that makes us tick. I have a lot of dumb, hurtful, ignorant comments that I can put here. I'll just give you the best of the worst :)

My Dad - "You don't want to get better", This has got to be the most insensitive comment, along with ignorant too. Yeah, I looooove bleeding out my @$$. Awesome... Wouldn't want to live any other way:ywow:

My Dad... again - "My friend has cancer and is fighting for his life and you have no will to live" NO COMMENT :awe:

My Dad - "You don't take care of yourself and eat right, you don't follow the doctor's protocol" no comment :kissgrits:

My Dad - "You need to get up and do some exercise, you're so thin. You need to get a job":ymad:

My Dad - "Your eating habits are terrible and it disturbs people, you need counseling" LOL unbelievable right? Ummmmm yeah I agree. I need counseling,.............. because I have YOU for a father". :runaway:

My time-bomb Aunt - "You just like the attention you get from people when you are sick"

My Sister - "I mean you've not worked in 4 years (actually, she can't count.... it was 2 at the time) don't you think it's about time" I can't even remember what I said in response. What I do remember is what she said in reaction to everything I tried to explain to her. "BUT STILL" X20

My Aunt - "Have you been looking for jobs yet" This comment isn't terrible, but taking into consideration that a week prior we had a conversation about my health/situation and why I can't have a regular 9-5 job. In 1 ear & outthe other.

:angry-banghead:
 
WOW... The Bag Lady.... She needs a slap in the face for making such a heartless and down right mean comment.
I've found that even family will bail on you and hurt you worse than friends. My family also has an issue with gossip and back talking. It's funny how people make judgements about us based on the words and information that is coming from other people RATHER than basing the relationship on what they know to be true from experience.
I never let a person's opinion about someone, influence and have an effect on my relationships. That's just retarded :eek:rder:



GutlessWonder86 said:
When I was 12 and undiagnosed the 1st pediatrician told my mom that I was losing weight to gain attention from her. YEAH RIGHT!!! You forgot to mention that I was bleeding w/constipation, had abdominal pain, ran low grade fevers, and was tired all the time but go ahead with that dx idiot. Luckily, his partner didn't see it that was and told her that something was seriously wrong and referred us to a GI who ran a battery of tests on me to find out that I had Crohn's.

Over the years, I had family members I wasn't even close to tell me that I should be taking this medication or that one, try this diet to cure me, blah blah blah.....then I had so called friends tell me that if I stressed out I'd be making myself sick. The only thing that made me sick was their ignorance.

The kicker was my own sister really never supported me as she thought I was faking my illness and a drug addict. Before her wedding 15 yrs. ago, I had to take a few months off of work due to a nasty flare and then on her wedding day I still wasn't up to par but I got through it. Come to find out from one of the bridal party members that my sister was telling everyone that I was out to ruin her big day on purpose by getting sick.

I had a low key wedding because we were saving up for a house plus it was the first time in a while I was in remission & I didn't need any more stress. My sister started trouble w/my folks by claiming I said and did all these terrible things (which I didn't do) so nobody from my family attended the ceremony. Their loss really as it was a very nice wedding and we had a blast at the reception w/an AWESOME dinner as it was paid for months ahead of time so his family got to order whatever they wanted off the special menu.

I haven't spoken to my sister in 6 yrs. and haven't seen my nieces or nephews whom I truly miss. I don't miss her starting trouble, the lies, false accusations, etc. My husband was right all along that she has some sort of mental issues and needs help but she won't get any because she won't admit it.

The only funny thing looking back now is she use to call me the "bag lady" when I first got my ileostomy in high school. That bag saved my life. :)
Click to expand...
 
@crushingcrohns - I wonder if our father's are related. Mine's favorite line is "Everyone has Crohn's. I don't see the big deal."

Really? Wow.
 
You've gotta love the heartless and rude comments. People seriously have no filter. You're not alone, I deal with ignorant people and their comments that make no sense all the time. Thank God for these forums. They are life savers! :hug:

Mj11jM said:
I always think that the worst one is " Well you don't look sick." " Are you sure you are sick, I don't believe you." Or my favorite(most hated) from my Dad " Well you just have to stand up and you are off the toilet, that's what I do" Or, "I don't care if you are not feeling good, I need to go to *insert destination here* and you are coming with me" Most of the time his destinations are either bathroomless, or have nasty, nasty bathrooms.
Click to expand...
 
Mine haven't been too bad just the usual things from friends at school being like 'stop faking it just cause you dont wanna come to class' Ummm I'd much rather be in class like you guys than at hospital being jabbed with needles and having diaahrea every day, thanks! Also things like stop being lazy and just eat some of this , you'll be fine - erm I'm not being lazy my body has no energy I wish I was just being lazy! The worst had to be when me and my mum went to see a psychiatrist about living with my crohns and she was neither trained for nor sympathetic of physical illnesses and she wrote a report that said I got my mum to do everything for me because I was too lazy to do it myself (this was when I'd just been diagnosed and could scarcely get out of bed) and things like that! Also my last flare up got really bad quite quickly and I went to A&E because I was loosing large amounts of blood and hadn't eaten more than 200 calories in weeks and they gave me fluids and sent me home!! And then the next day when I rang my specialist nurse and told her about it (she only works like 2 days a week) she said I was an emergency case and I should come into hospital for emergency treatment , possibly surgery that afternoon! I think alot of bad comments stem from ignorance but I dont think it is acceptable to be that ignorant when your a medical professional :(
 
I swear I will scream if my dentist tells me one more time i am too young to be ill or on meds.

or that i'm medication seeking... I am not even on any fun meds. you know nexium that's my high ;)
(so joking)
 
Jessica said:
@crushingcrohns - I wonder if our father's are related. Mine's favorite line is "Everyone has Crohn's. I don't see the big deal."

Really? Wow.
Click to expand...

They are brothers with different mothers lol. I would have to say that out of all the comments I get from people, he get's the award for saying some of the meanest things. :confused2: Just when I think that maybe he understands my situation better, he never fails to speak without thinking which indicates his ignorance.
 
I hate 'you're too young' or 'you're too fat' to be sick/on meds.

illness isn't reserved for the elderly!
 
I never quite realized the impact of the comments until today. Dint take me wrong, I can stand to lose some weight. I know this. I have morrow in my house.

Lately, I've been losing 1-2 pounds a day from not being able to eat. I got comments today on how I look like I'm losing weight (as a compliment) not meant to be ugly. This was the first time that it actually hurt my feelings because I can't help or stop it.

I pulled the 2 people aside and told the. That it's not intentional, it's because I'm sick and please don't comment on it again.

They just didn't understand and said yeah it probably just stress and will get better you just need to relax.

I give up on trying to educate those around me.
 
SawyerAshton, I'm sorry, that sucks. I'm also overweight so when I can't eat I get similar comments. I always want to reply about how it's surprising a little lost weight makes the sallow skin,sunken eyes, body bent in pain, etc, all vanish. its better to be sick and skinny than healthy and fat don't ya know.
 
Changing the mood a bit to a humerous rather than bad comment... I am a few months away from total colectomy with ileostomy. When I start getting too stressed out at the idea of it all, my husband will inevitably come up with some new joke or other somesuch lewd comment that always ends with me having a good belly laugh.

His latest has been that he envys the idea of a portable fart bag that I could release on anyone who is getting on my nerves. Hahaha!!!
 

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