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Crohn's Disease Forum

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My mom and husband are the two people who I absolutely rely on. My mom has fibro and chronic fatigue so she understands immune diseases and how people can look "healthy and thin" and still be insanely sick without appearing to on the surface. And she's usually very tactful.

That being said, she practically had me in tears yesterday. I know it wasn't intentional, and most likely it is the 40mg of prednisone helping out. I had called her to ask her to take me to the grocery store (still can't drive, this post-op stuff is killing me), and she was asking how my diet progression was going. I told her honestly that I was still eating a lot of soft foods and having diarrhea, I was a little scared to advance my diet any further and didn't know what to add. We had eaten at mom and dad's a few days earlier, I just had noodles because she made shrimp and I haven't been able to eat it since I got sick on it when pregnant. She commented on the noodles and said, "Your dad and I were talking about how bad you looked when you left. You have dark circles under your eyes and I can tell you've lost more weight. Your cheeks are sunken in again."

Holy crap! I'm doing the best I can. I know she is worried about me and it wasn't meant to hurt my feelings but seriously! I just had surgery, I'm sore and tired, I've been sick for so long that even though I'm not having any pain, I'm still scared to eat certain things. Please don't tell me I look like shit on top of it. I have a mirror. :(
 
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

I vote with a quote like that you simply DO stand up, and proceed to shit on him!!!!! :ymad:
 
I was in the hospital over the weekend and the floor charge nurse asked if I had a bowel movement today. I reminded her that I had an ileostomy, to which she said "Oh...you don't look like someone with a bag."

What exactly is that supposed to mean?!?!?!!!
 
Toothy, clearly you are gobsmacking beautiful young thing. Thats is clearly what she meant! (alternatively you could look like my roomies at the time and they were all at least 75) However, there was a stunning young man (ahem) in the next ward over with a bag when I was last in there. My word he had nice legs too. :blush:
 
(i'll preface this one by saying my husband is normally very supportive) - had been sick with perianal stuff and fistula for a few months, barely went anywhere out of the house if i could help it, day before i get my first remicade treatment, scared out of my mind.
husband is taking kid to grocery store.
"can't you even think of ideas for dinners?" (in a huffy, i do *everything* voice)

i'm like i hurt like all get out, i cry every time i go to the bathroom, i have to go get mouse juice infused into me, and your upset because you have to go to the grocery store and actually have to think while you're there???
he shut up pretty quick.

most people have been fine, although the nurse at my second colonoscopy is like, "oh you're so skinny! you're lucky, i'd love to be that naturally skinny".

this is a nurse in a colonoscopy center. she does this every day. really????
 
flowergirl said:
most people have been fine, although the nurse at my second colonoscopy is like, "oh you're so skinny! you're lucky, i'd love to be that naturally skinny".

this is a nurse in a colonoscopy center. she does this every day. really????
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At the last colonoscopy I had, the nurse actually asked me if I had arthritis since I was on Remicade..... what a twit!
 
Oh so check this out... I just read this article yesterday that is titled " People with IBD Suffer Discrimination" Ain't that the freaking truth??!! I never thought I'd read an article that directly addresses this issue. I'm glad someone is catching on finally.
(if anyone is interested in reading that article, it's the most recent post on my blog.. which is at the bottom of this message, I think :)
 
Recently a co-worker that I've worked with fr 24 yrs hurt his back and was told he may have to have surgery. We were kidding him about walking like an old man and he says to me "Well maybe some day you'll know what its like to live in pain and worry about having to have surgery."

Hello!!!! I've had CD for 26 yrs, gangrene in my stomach, to many blockages to count and a heart attack. Do you want to rethink what you just said.

Same person: Me: I'm having a lot of problems with my CD lately. Was up all night with D. Him: Yeah, I know how you feel. I had a stomach ache last night."
 
My sister in a nurse for children in Evangeline Hospital in Central London.

In email discussion we had she said 'that she was shame to to seen out with me because of medication I have to take before eating and after' Needless to said that going bathroom and take medication if with her or just not bother to pills.
 
Crohn's can be controlled with lifestyle adjustment. Los Angeles Superior Court Commissioner Nori Ann Walla.

I don't care if another judge determined you are totally disabled, I may have reached another conclusion. Los Angeles Superior Court Judge Dianna Gould-Saltman.

I will not accept a statement under oath from your doctor because it is hearsay and I will not grant you a trial so you can have your doctor testify. Los Angeles Superior Court Judge Dianna Gould-Saltman.
 
I once saw a female doctor at an out patient appointment. She was asking about my marital status - I informed her that I was divorced. She promptly offered 'so your wife left you because of your ileostomy'. No I replied I left her because I couldn't stand her. You should of seen her face! lol.
 
I am due to undergo diagnosis for my GI disease soon, and used to have a vitamin B12 deficiency *it's normal now, but tha tmay be due to shots), which to me signals that something is wrong with my bowels. GP: "If you had a GI disorder, we would continue B12 shots, but your B12 deficiency has no underlying cause." He added that it's probably due to my eating disorder (bulimia-like tendencies, but I only purge once in a while). Ugh.
 
I've been looking for a part-time job lately and am with a job agency that only works with disabled people. Had an appt with my employment consultant today and she asked how I was (had just started on a course of pred last time I saw her).

Me: I'm feeling a bit better but haven't been getting much sleep lately. (I have the big dark rings under my eyes)
Her: Why is that?
Me: Just a side effect from my medication.
Her: Oh I know how you feel, sometimes I can't get to sleep 'cos I feel all hyped up. I think I sleep fairly lightly too sometimes and don't quite feel refreshed when I wake up. (She went on for a little while here about being excited about something). Yes, I know how you feel with that... Now I've found some jobs for you to look at. (They were all full-time)
 
Here's a few from me:
1)" well be thankful its not something worse..you could have AIDs"!!!
2) when I had appendicitis and it was in te process of rupturing..
From guy I was staying with in a different country..'you're not that sick..u don't need to go to hospital'!
Sometimes it's unbelievable!! How about that tired old stand by
' but you don't LOOK sick!'
 
My worst came from a girl that I met once who was trying to steal my husband from me (luckily I have a supportive husband and he cut contact with her). She told him that he shouldn't have to deal with someone who was "handi-CRAPPED" and that I should move back in with my parents and let them care for me! I couldn't believe that anyone could be so insensitive. FYI: She is married with a kid. Also, my hubby was my friend first when I was diagnosed at 17. He knew what he was doing when he asked me to marry him!

I've also had the "but you're so young" comment. I hate that one. I am young, but illness doesn't discriminate. I also have endometriosis, Blastomycosis, Anemia, and infertility. I've had pneumonia, shingles, right ovary removed, countless hospitalizations, etc.

Again with the, "I wish I had Crohn's so I could be skinny".

And the, "But you look healthy".

:thumbdown:
 
When I told my cousin there is a possibility of strictureplasty surgery my cousin, just blurted out "NO MORE ROLLER COASTERS FOR YOU?" I had to think about it for a sec then I got it. I ended up not getting surgery and not needing a bag. But I do enjoy the humor :)
 
I hate to say this but I think I have the best statement:

My sister (who has CD) yelled at me: You are stressing me out, and when I get stressed out it causes me pain (due to crohn's)

why would you think this is the best statement, she seems to ignore the fact I HAVE CROHNS TOO!!!!

hehe...

also, comment not as good: while I was in remission and put back on some weight: ' you use to be so much prettier when you were thinner' (said to me by a family member )

otherside, after I began to flair up again and lost weight: the line a lot of us have heard: Wow, you are so thin. What is your secrete to looking so good?
I did once say: An incurable disease. Thanks for asking
 
Yep I can't stand that "wow your looking well!" statement people give you when you feel pretty damn awful. Or the "wow steroids hey, that should make you a good athlete". There are so many totally awful things that people think that they can just add. After being on varying doses or prednisone for the better part of 20 years I now have ruptured discs in lumbar spine, carpal tunnel a lovely Druid hump on back of neck and terrible neck problems caused by the hump and postural issues as well as many other pred induced side effects that have not dissapated once weaned from drug. Jeez I know people that can't cope with just carpal tunnel or a sore back. I once had to take some time off work for my back, everything had slipped and squashed bits and pieces and one of the young girls at work told me to get over it as she had bad period pain and she still managed to get to work
There have been times when I have had massive weight gains due to the pred and people are so mean. I wish we could wear a little sign on back that said - suffering chronic illness, on pred, just be nice and let me try to get on with living a normal life..

Sometimes I just want to scream but know it would only upset all those around me, so I just often look at them oddly and pretend I can't hear.
 
Yep I can't stand that "wow your looking well!" statement people give you when you feel pretty damn awful. Or the "wow steroids hey, that should make you a good athlete". There are so many totally awful things that people think that they can just add. After being on varying doses or prednisone for the better part of 20 years I now have ruptured discs in lumbar spine, carpal tunnel a lovely Druid hump on back of neck and terrible neck problems caused by the hump and postural issues as well as many other pred induced side effects that have not dissapated once weaned from drug. Jeez I know people that can't cope with just carpal tunnel or a sore back. I once had to take some time off work for my back, everything had slipped and squashed bits and pieces and one of the young girls at work told me to get over it as she had bad period pain and she still managed to get to work
There have been times when I have had massive weight gains due to the pred and people are so mean. I wish we could wear a little sign on back that said - suffering chronic illness, on pred, just be nice and let me try to get on with living a normal life..

Sometimes I just want to scream but know it would only upset all those around me, so I just often look at them oddly and pretend I can't hear.
 
I guess the best comment that comes out of me is that I tell people my arse is falling off :) thats about it though to be honest.
 
partyboy690 said:
I guess the best comment that comes out of me is that I tell people my arse is falling off :) thats about it though to be honest.
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After colectomy surgery, I lost a ton of weight while in the hospital. I came home and my husband said "I thought they were removing your colon, not your butt." Hahahaha!!!! :ylol2:
 
2thFairy said:
After colectomy surgery, I lost a ton of weight while in the hospital. I came home and my husband said "I thought they were removing your colon, not your butt." Hahahaha!!!! :ylol2:
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I'm a white man with a black womans arse and I recently lost a whole pile of weight and I lost my black womans arse :( hahaha
 
My parents just visited me. The last time I saw them was about 5 months ago and since that last visit I was dx. My mom told me how great I looked now that I have lost weight. I told her I was not intentionally losing weight, that it was because of being unable to eat because of Crohn's. Her comment, "Well it has certainly done well for you."

Then.....I tell them about what I can't eat and the first thing I tell them is I can't eat Mexican/Spanish food..no beans, no spicy, no melted cheddar, etc. What is the first place my parents make reservations for all us to go and eat? Mexican.

Both my husband and son are ignoring my issues. My 19yr old won't even talk about it or acknowledge it at all. Yesterday I sent my husband to the store. He comes back with a loaf of real hardy wheat bread. He is so proud he got something healthy, neither he nor my son eat wheat bread. Well neither am I right now. Helllllloooooooo. Then he is mad at me that I am not going to eat it. Whhaaaatttt?? >sigh<
 
Wait....I forgot the best one that my mom said during her visit....

"The only person I have ever known with Crohn's died because of it."

Thanks mom....you are such a fricking gem.
 
How about this one from an er doctor..'you just have chronic pain syndrome..try some acupuncture and a therapist'..that was last night..oh..the blood in the toilet is a figment of my imagination..along with the 6! Resections.thanks pal!
 
Nameless: you are unbearable to live with when you are sick, this from a man that has never been sick a day in his life.......... I'm hopping for a kidney stone, a very large kidney stone.!
 
Nameless: "My daughter-in-law had really similar symptoms for 2 years and they finally discovered she had leukemia. She died a year later at 19. I hope they figure out what is going on with you!" this quote gave me no hope, needless to say! And I'm sure people get this all the time, I know I do: "Oh, but you look so good!" Yeah, looks can be deceiving.
 
I don't like how my parents don't seem to understand that it's not just a case of 'eat more' or 'try not to feel sick'. They try to understand me most of the time but I just don't think they understand the intricacies of it.

Also I'm a year 10 now and constantly getting approached by people who think I'm a year 7. These days I've given up trying to explain so I just say "I've got a lifelong illness, I've stopped growing because it's gotten so bad." That's pretty much all they can comprehend! But it's really crushing my self-esteem because I'm so small. D:
 
Too many bad quotes to contribute, but I thought I'd share the line that made my surgeon and sister crack up to the point of having to be excused. Upon seeing my stoma for the first time, my immediate response was, "Cool! Now I'M the bog of eternal stench!" (Labirynth is one of me and my sister's favorite films)

:rof:
 
I also once had a surgeon say to me, "Well, I don't see any reason to operate, however, if you disagree, there are 25 other Colorectal surgeons in the area, maybe one of them will say something different." Two weeks later I woke from the surgery that removed the REST of my diseased colon. WTF?!? (He was right about one thing at least, another local surgeon immediately scheduled me for surgery.)
 
Haha!! I'm so sorry but it's to funny to read these comments because I can relate.

I hate when people (that don't know I have CD) see me eating a cheeseburger (or something fattening) and they say "I wish I could eat like that and be your size" or "how do you eat like that and still be so skinny? I'm jealous" seriously...

Well this is me cheating, and I'll probably pay for this in about 30 min when my tummy hurts and I'm sitting on the toilet...still jealous? Ughh
 
Well, not exactly rude, but yesterday I had my routine Colonoscopy. So I am on the bed on my side and waiting for the scope to start when my doc asks me about my weight. I say something like "Yes I know I am overweight, I wish I could lose some weight but its difficult when you eat mostly pasta and meat". A nurse hears the convo and says. "Pasta and meat are not good for diet, you should eat lots of salads and fruits" I give her my sweetest look and say "I have Crohns (you bitch)" She takes a terrified look on her face and blurts "You should NOT eat lots of veggies since you have crohns they are not good for you" Well thanks for nothing (you bitch).

PS I am in Greece they dont sedate you for the scope, I was awake the whole time and its my third scope so far.
 
I always just get a kick out of it when people say stuff like "I know what you mean, fast food makes me feel like I'm going to explode" Easy there, that's hardly the same thing at all.

It also really bothers me (and I worked with a guy like this over the summer) when I feel like complete shit but still manage to go to work and work through it and then he calls in sick because his foot hurts or he has a headache.
 
Friend (in 2002ish when I was recently diagnosed): "...So, you feel like you have to poop 24/7?" Meaning she literally thought every second I had the feeling of pooping. True, during a flareup I do but the way she said it.

same friend: "I THINK I HAVE CROHN'S!!!!!! MY STOMACH HURTS!" when she had a stomach ache. She said it in front of me. This was also near when I was diagnosed.
 
Jaano711 said:
Yep I can't stand that "wow your looking well!" statement people give you when you feel pretty damn awful. Or the "wow steroids hey, that should make you a good athlete". There are so many totally awful things that people think that they can just add. After being on varying doses or prednisone for the better part of 20 years I now have ruptured discs in lumbar spine, carpal tunnel a lovely Druid hump on back of neck and terrible neck problems caused by the hump and postural issues as well as many other pred induced side effects that have not dissapated once weaned from drug. Jeez I know people that can't cope with just carpal tunnel or a sore back. I once had to take some time off work for my back, everything had slipped and squashed bits and pieces and one of the young girls at work told me to get over it as she had bad period pain and she still managed to get to work
There have been times when I have had massive weight gains due to the pred and people are so mean. I wish we could wear a little sign on back that said - suffering chronic illness, on pred, just be nice and let me try to get on with living a normal life..

Sometimes I just want to scream but know it would only upset all those around me, so I just often look at them oddly and pretend I can't hear.
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Sorry to double post but that totally reminded me. In high school I felt the need to defend my weight gain due to steroids and everyone laughed. I tried to say it was for medical reasons but they didn't listen and just kept giggling. It was so humiliating for a little Freshman. Oh and they were older too.
 
I can't even believe some of the people I'm reading about. Especially the "you don't look that sick" or the "you look well" people. It's my (boyfriend's) Mom who has Crohn's, not me. I'm mainly here to support her, and my (boyfriend's) other family members, several who are chronically ill. I, myself, have severe scoliosis which has lead to severe and constant muscle pain. So my pain is the kind where if you look at my face, unless I'm cringing, I probably don't "look that sick."

Well, here's a story, anyway. My boyfriend's mom has had pancreatitis several times. A while back, she went to the hospital because she was sure she was getting it again. The "good" hospital in our area is a few miles up the hill, so she went there so she could get the proper care. Well, my boyfriend and I went to school, and while I was there, I started having strange feelings about Mom. I felt like we should check on her. So after school, we went to pay her a visit and drove all the way up to see her. When we got there, she was crying. She takes pain medicine for her Crohn's and it embarrasses her to tell the hospital staff. So since this hospital didn't know, they were giving her hardly any medicine. Now, my mom has been in the hospital a LOT of times, and she knows when something is really wrong, or if she'll be fine. She leaned over and said to me, "This isn't right, Nike. A person doesn't just feel like this." I found out that she had been sitting there for over 3 hours without being checked on. Also, the doctor gave her less than 1/10th of the pain medicine she usually receives in the hospital, and even though she was literally crying in pain, he refused her any other medicine.

My man and I got her out as fast as we could and drove to to the hospital in the town we live in. Since she went there more often, they recognized her and gave her the treatment she needed. When we visited her the next day, she was smiling (and I think maybe a little loopy because of whatever medicine they were giving her, lol.)

Oh, and here's the icing on the cake: The first hospital she went to (the bad one where they refused her medicine) tested her and told her "you do not have pancreatitis. Whatever it is, has to do with your liver. We need to run more tests." (Which they didn't run.) When we took her to our local hospital, they tested her and immediately confirmed that she had pancreatitis. They treated her and she was out in a few days.

She called my boyfriend and I her heroes that night. I actually think that if she would have stayed there, she may have died. It was really, really bad. Mom is strong and I've never seen her in that bad of shape before :(

Now that I've made you sad, here's a funny story to lighten the mood.

My bf had a UTI, which is less common in men, but can still happen. Some men are just prone to them. So we went to the doctor. She took one look at us, asked if either of us had had former sexual partners (1 each) and she said "You both have Chlamydia." Now, my bf's partner had only had 1 affair, in which he wore a condom. My only other long-term sexual partner had never had former partners, and he too, wore a condom. I didn't think it was likely, though I was open to the possibility, and asked "Should I make sure and get tested at my women's clinic?" The doctor said "There's really no reason to. You have Chlamydia." She gave my bf antibiotics, and then gave us both treatment for Chlamydia. Well, I took the medicine just in case, but I still wasn't convinced.

I had been going to my women's clinic for two or so years. Every time I went (which was every few months) I took a pee test that would see if I was pregnant, had Chlamydia, or Gonorrhea. I went to my clinic, took a new test and looked at my old results. My new test came back negative, along with EVERY OTHER OLD RESULT. I did not have Chlamydia, and neither did my boyfriend. He had a UTI. Even though the doctor who diagnosed us said "Men don't really get those." Ugh.

That doctor looked at us, saw that we were young, saw that we'd had sex before, and labeled us with an STD. :ylol2:
 
I am loving this thread!

Here is something several unnamed people have said to me: "I had diarrhea today. Now, I feel your pain and know how you feel!"

Stupid people.
 
Haha yeah the I have diarrohea I know how bad you feel always makes me cringe !

I went to my gp last week about being on constant pain etc he looked at me and said :
" you have crohns right ? , well you will always be in pain what do you expect me to do !"

Needless to say I went to another gp on fri an she was helpful .

Also a friend supposed to be best friend realised she needs her disability living allowance renewed next year ( nothing wrong with her it was all faked an she admits that freely like it's great ) I get no benefits at all by the way nothing .
So she went to the gp with a walking stick dragging her leg an holding her stomach , she came out chuffed coz she got diagnosed with ibs and depression an referred to a pain clinic .
As you can imagine I'm absoloubtly pissed off by this ! My crohns diagnosis took 8/9 years of hell an I've never had help or support off any of my doctors till recently , she goes in an pretends she's ill etc an gets help an support just like that , I think I'm actually quite jealous of this but I think that's understandable !
I can't believe some people will stoop soooooo low for money .
 
When I went in to get a CAT (or CT?) Scan, I was attempting to drink all the CRAP they give us.
I said to the doctor "Is it more important that I get all this down, or that I dont throw up?"
He said "drink all of it, don't throw up."
"If I drink anymore, I will throw up"
"You didn't drink enough, you can't throw up"
"Then I can't drink anymore"
"If I can't see what I need, you'll have to come in again."
"I promise, I am full and if I drink anymore, it's coming back up"
"Fine! Get in the bed! I can't wait to rebook"
-------
Dr says "Okay I saw everything I needed bye..."

As if I dont know my own Body!

My other fave is my sister who has UC,
Sis: "How are you doing?"
Me: "Oh, I'm getting worse unfortunately, forced on disability because of work. Humira isn't working and they want me to start Medical trials cause nothing else worked."
Sis: "Stop being so negative"
 
I'm sure this has been said somewhere in the last 15 pages but the other day I told somebody I somewhat trusted that I have crohn's and his response was "Dude, I totally understand. I have IBS"

--- Umm, no. That's hardly the same thing.
 
The other day my mom said "I have been having an IBS flare, and it makes me feel like I can almost understand what you're going through."
I was like I've hear "I have IBS, so I know" before, and yet what she just said wasn't ignorant...

Is it a fine line in words? Or is it because I'm bias toward my mom loving me? Hmmmm....
 
My mom also went trough a bout with ibs and a stomac bug..when I told her I felt pretty bad when she asked me..after being discharged from the hospital with kindney stones and a flare..she said"I know how you feel"..oh dear!
 
The doc way back telling me I had an eating disorder and it was all in my head! All in my flaming head?! God, I actually WANTED to eat but couldn't!!

The usual 'I wish I could loose weight like you. You look so good with the weight loss!
'You need to eat, your becoming far to thin!' - This coming from a girl who pilled on the pounds from drinking too much!!



Mum in a banterous argument: If your so clever why did you get crohns?!
 
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I feel like I got the "you're so skinny, you look great" comment a lot with my last set of roommates. Both girls were a bit overweight, but looked great and exercised regularly. But one of the girls would constantly comment on how thin I was until one day I told her if she wanted my Crohn's, she could have it. She got upset with me and said "well, if you get to be skinny without trying, it seems like it would be worth it". We're not really friends anymore.
 
I never thought the "You're skinny" comment was bad... to be honest, I took it as one of the silver linings of crohns, until one day I was complaining how underweight I was and how I needed to gain weight.

A lady at my work who has been working really hard to lose weight was like "poor Abby, not enough weight" and completely dismissed my problem. Like Wow, my weight problems aren't good enough for you cause you're fat?

Chubby Balerina - I'm glad you aren't friends anymore. We have enough problems without having to deal with toxic friends.
 
I told one of my college buddies I gave up smoking and he asked why and I said I'd been diagnosed with a chronic bowel condition. He then responded "My prayers have been answered" I laughed at it because he's not the kinda guy who would say something like that. He thought I meant the cigs were giving me diarhea or something not so bad. Although I do make him feel like an asshole for saying it now :D
 
When I was extremely sick and almost to the point where my skin was about to fuse with my couch, I would log on to Facebook and see people posting "I'm so tired..." I've sworn I will never, ever post something like that (unless I am flaring and truly am tired). Can't stand it when healthy people bitch about being tired.

For people who are absolute assholes about not understanding our condition I suggest gifting them the following book: http://www.amazon.com/Everyone-Poops-Body-Science-Series/dp/192913214X
On the inside cover you might write something like: "Here is a book written at a toddler's level. Hope it is not too advanced for you."
 
As an Amazon Associate we earn from qualifying purchases.
The insensitive comment (to other CD sufferers) most often out of my own mouth: "I couldn't even manage to get the kind of Crohn's where you lose weight!" I'm sure it's horrible and I'd hate that too, but for many people who "know someone" with Crohn's, they're first response my overweight self is "I thought you lost weight with that?!"
 
People are rotten. Trust me I know how you feel with the comments and they are mostly from my own family. I struggled for a while with the hurt because you'd think your own family isn't even supportive.. who do you look to? I've come to terms with the fact that there are a few reasons people FAIL to understand. 1) they dont want to learn about the disease or be informed because of 1 of the following 1)they are too self centered. It doesn't involve them so why would they 2)they think they know everything there is to know about the disease 3) they are not mentally and emotionally strong and afraid to touch your pain. They wont let themselves feel or see the truth by getting educated because it may hit a nerve, emotion or cause them to FEEL (we wouldn't want to feel an emotion.numbness is nice for some) 4) they don't listen ... they are the people that talk a lot, do little listening, and don't remember what you tell them because they dont accept your words for whatever the reason and they were too busy while you were talking, thinking about what they would tell you next. Horrible worthless convos with this kind

So, i've accepted the fact that my family is careless. they really could care less and shallow as well. I guess I have to be unable to walk or move to be ill because if I look good on the outside I MUST be good on the inside.

Why should I let these people ruin my day, get a rise out of me, effect me when they are ignorant and lack empathy & compassion. I also wont hate on them, but I wont take their wants and needs into consideration or do anything that I don't feel like doing for them. period. Why should i do something if my heart isn't feelin it? I have decided months ago to be true to myself no matter what. They can talk about me all they want, I really dont care.

Don't let people get to you. Expect people to say something retarded/inappropriate and mean and then you'll be prepared. Someday they will get it and think about how they've treated people in the past & realize during their moment of clarity that what they said was pretty shitty.
:)

Jaano711 said:
Yep I can't stand that "wow your looking well!" statement people give you when you feel pretty damn awful. Or the "wow steroids hey, that should make you a good athlete". There are so many totally awful things that people think that they can just add. After being on varying doses or prednisone for the better part of 20 years I now have ruptured discs in lumbar spine, carpal tunnel a lovely Druid hump on back of neck and terrible neck problems caused by the hump and postural issues as well as many other pred induced side effects that have not dissapated once weaned from drug. Jeez I know people that can't cope with just carpal tunnel or a sore back. I once had to take some time off work for my back, everything had slipped and squashed bits and pieces and one of the young girls at work told me to get over it as she had bad period pain and she still managed to get to work
There have been times when I have had massive weight gains due to the pred and people are so mean. I wish we could wear a little sign on back that said - suffering chronic illness, on pred, just be nice and let me try to get on with living a normal life..

Sometimes I just want to scream but know it would only upset all those around me, so I just often look at them oddly and pretend I can't hear.
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I'm having my first major surgery on Wednesday, and am probably going to be having an ileostomy. One of my work colleagues asked me last week whether I was excited about it.......um, no. Excited is not a word that had crossed my mind about being cut open (I'm having a laparotomy.)
 
My parents have lived in total denial of my Crohn's since I started showing symptoms in 1995 when I was 16. After I'd had the disease for about 9 years, I went through one of the worst years of my life (second only to the year where I developed the disease) and was fired from a hellish job, totaled my car in a car wreck, and my first husband decided to leave me.

My dad's comment to me over the wreck my life was at that point? "At least you have your health." My mouth dropped open and I was rendered speechless. I don't think I even responded. All I could think to myself was, "I haven't had 'my health' in years, and I likely never will again. How could you say that after seeing how I nearly died before I got a proper diagnosis?" But I didn't say anything, because it's like talking to a wall with them. They monitor how they think my Crohn's is doing by how much I weigh, not taking into account that my weight has little to do with my disease activity.

Frustrating, to say the least.
 
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Absentminded said:
I'm having my first major surgery on Wednesday, and am probably going to be having an ileostomy. One of my work colleagues asked me last week whether I was excited about it.......um, no. Excited is not a word that had crossed my mind about being cut open (I'm having a laparotomy.)
Click to expand...

I hope everything goes okay for you on Wednesday. Your colleagues don't understand hun. They probably never will unless they really want to know about the disease and are open minded. I've found that most people, like even my family members arent interrested to know what the disease is. Invincible diseases are difficult to have because everyone looks at you and thinks your just great when maybe you feel so bad inside. Unless they have or do experience that kind of sickness, they just do't know what its like living in our skin.

Good luck to you on Wed. :rosette2:
 
Ah thank you! One day to go now. I'm quietly freaking out.
Most of my colleagues are pretty good, but every now and again one of them doesn't quite get it. And yeah, some family can be the same. It can be pretty frustrating, but like you said, they just haven't been there and don't understand. Grrrrrr!
 
Ahh, the old "but you look fine."

Well come on, what are you accusing me of? Faking a disease to attract sympathy?

Because that is the ONLY implication that sentence has. The only one. Literally. If you deconstruct it logically, it can't mean anything else. If I say I'm sick, then believe me I'm sick. If you respond to me telling you I'm sick by telling me I look okay, then you're accusing me of lying, even if you're not trying to... and I will stab you with a plastic spork.
 
So I'm sick and skinny, nearly 30 kgs lighter than I was when I was diagnosed a year ago. I am now only very slightly overweight compared to what I was, and I am still losing plenty of weight through illness.

Two weeks ago, I went to the doctor's office to get my weekly B12 injection. Afterwards, the nurse gives me an unsoliticed drug brochure (prompted by the computer system she said) for a WEIGHT LOSS drug. I said sadly in response: 'It's sad common sense doesn't prevail, does the computer also tell you that I have a bowel disease, and that I've been in hospital 6 times this year?' She could've thought about the fact that I was there every week getting B12 injections for a reason... Sometimes even people in the medical profession can be insulting and ignorant.
 
Friends: "Crohn's? Oh well, I don't know anything about it, but I guess you'll just have to change your diet and you will be fine"

Daughter: "You might want to think about medicinal marijuana, I heard a lady on the radio talking about it" (just days after being diagnosed lol)

Family member: "You said you are feeling better the last few days, maybe you don't need treatment"

All in all though, people are pretty understanding so far!
 
I remembered a few others.

From a doctor: "What are we supposed to do? Take out all of your intestines?" As I was waking up after a colonoscopy that showed I had a good deal of inflammation. No, how about you prescribe some medication for me instead of yell at me? Ever think of that?

From an EMT worker who was transporting me to the CT area: "Gross." (when he heard from my nurse that I had an abdominal abscess) Just that one word was enough to make me cry, as I was already having a bad enough time then as it was.

My grandmother: "You're going to die like Karen Carpenter did." Last time I checked, Karen Carpenter died from anorexia, not Crohn's disease. Oh, I forgot...a female can't be thin for any other reason than anorexia, my mistake.
 
I stopped telling co-workers about my disease to avoid the thoughtless comments. A few of my favorites:
"'It must be nice to not have to know what its like to have to diet". Always fun when your foods that you can tolerate at the time are limited to small amounts of bananas and rice.
"But you look so healthy". It's hard to explain that you can barely stand due to anemia and fatigue, and have wrenching abdominal pain that just because they can't see the disease doesn't mean it does not exist.
 
For me it was my sister saying to my Mom that I couldn't have crohn's or I'd be super skinny! I know a woman who had all but 6 inches of her intestines removed and she hasn't lost any weight and she is suffering terribly with ulcers all thru her mouth and esophagus now!!
I am over weight and did lose 12 lbs out of nowhere. But my main problems were stomachaches and D off and on. Haven't had any obstructions or surgeries as of yet and hope not to.
I showed my Mom the picture of my colonoscopy with the ulcers and inflammation and she said ,Oh I guess you do have it!!! Unreal! She had ulcerative colitis and so did the sister who said that!:tongue:To her!
 
Nurse to Hubby during an appointment: "Wow, I'd love to loose weight like you." His chart said he has Crohn's and he's been underweight for years because of it.

The (joking?) advice of various family members: "You just need to feed him some more good Pennsylvania Dutch meals and he'll fatten up and be fine."

Convo with one of my BFFs: Me "It's just so frustrating. It's not just the diets, but his illness messes with so much of our lives and planning our life together. It's so hard seeing him in such pain and not being able to do anything about it. So frustrating!"
Her "Yeah... Omg, you know what else is frustrating? Buying new jeans with my body type."
She continued to complain about shopping for jeans for nearly 30 minutes and never returned the topic to my hubby and my problem. She just recently recovered from a serious illness herself, so I thought she of all people would understand.

Convo with Sister-in-law: Her "You just don't care. You just don't do enough for us. We have some really serious stress going on in our lives right now."
Me, pointing to hubby, "And you think that we don't?"
Her "What do you mean?"
Me "His health! I've told you about the diets and the weight loss and all of the pain! Remember--incurable condition?"
Her "Oh...I didn't realize he was still sick."
She is healthy and so is my brother. They have normal stress about jobs and their children, but they just can't understand.

I agree with you, ryanps! Complaints from friends and on Facebook about head colds and the flu are so frustrating! People act like big babies and say they're "dying" when they are sick for a day or two, but then have no capacity for sympathy for a guy who has lived with those kinds of symptoms or worse for two years straight now.

Not having Crohn's myself, I can imagine both sides of the story. I'm continually frustrated by how healthy people take their fortune for granted and can't comprehend how daily, how ever-present, and how debilitating a chronic condition can be. But, I generally don't take offense to awkward thoughtless comments. I don't think that healthy people can begin to comprehend how their off-handed comments sound. "Oh but you look good" sounds like an insult to someone who feels terrible, but to them it might be a idle comment since they don't know what else to say. They might even mean it to say that maybe you'll be getting better soon, since you look good. They're trying to find a silver lining or a joke to raise your spirits, but it usually just proves that they don't understand how serious the condition is. Suggestions about the latest trend in medicine, diet, or homeopathy may sound silly from aunts, grandparents, and coworkers who occasionally forget the name of the disease, but most people just want to help and have no idea how. Granted I am a foolish optimist, but I genuinely believe most people aren't trying to be cruel, but just don't know what to say to make things better, because I'm living side-by-side with hubby and the condition and even I don't know what to say half the time! The wisest people usually say nothing and just offer to listen if we need to vent.

That said, I totally agree with you, CrushingCrohns. Some people are just terrible listeners, short-sighted, and self-centered. They so often forget that the world doesn't revolve around them and that other people have struggles too. "Be kind, because everyone you meet is fighting a hard battle" -- and some battles are a lot harder than others!
 
Not sure if this is funny or just plain sad. My GI doc of 20+ years wants me to have my colon out immediatly. I've had 2nd opinon and surgical consult that says to do otherwise and wait and try medication (I think my strictures make him nervous when he does my colonoscopies). Anyhow...I waited and went to see my surgeon for follow up and my GI got the report. I get a call from him "hey I see you are finally scheduling that surgery"...ME "noooo she said to wait a few years and keep doing what I've been doing" DR "oh, I guess I should have read the report". YA THINK? Me "I'm having a problem getting a referral from my new PCP to continue seeing you out of network" Dr. "I've got 2 other calls to make and 3 other patients to call back". ME "don't you even care that after 25 years I won't be your patient anymore"? Dr "I'm not letting you go happily"...ok have a good night". and to think I was so worried about leaving this guy!!!
 
Wow, nobody else got the old "you don't look sick comment"? Yeah, right. :)

How about: "What's that? It can't be that serious if nobody's every heard of it"

As for those comments about weight- I've gained 30 pounds since May. I guess all Crohnies don't look alike after all. Thank you Prednisone..... not. ;)
 
Hobbes650 said:
Wow, nobody else got the old "you don't look sick comment"? Yeah, right. :)

How about: "What's that? It can't be that serious if nobody's every heard of it"

As for those comments about weight- I've gained 30 pounds since May. I guess all Crohnies don't look alike after all. Thank you Prednisone..... not. ;)
Click to expand...
Prednisone... weight gain?

I know what I want for Christmas!
 
I had gone to the ER for something unrelated and when the dr. looked at my chart he sat down next to me on my bed and said "you look really good for someone so ill". He made me cry. Its kind of the opposite of what people usually say because he was acknowledging how ill I was...but I didn't take it as a bad thing. I cried because I felt like someone finally knew what was behind the mask I wear. It was weird. I never forgot it.
 
LondonSnow said:
Prednisone... weight gain?

I know what I want for Christmas!
Click to expand...



No you don't. Not this way, but I hear ya. When I was dx with Ulcerative Colitis in 1986 it got real bad and I lost lots of weight in a short time, even while taking 60mg per day. This time around the disease is not so bad, but I've gained lots of weight even though I'm not taking nearly as much Pred. I'd much rather be like this than when I was terribly sick, that's for certain. But after having 25 years of no meds because my surgery "cured" Ulcerative Colitis only to be diagnosed with Crohns in May and back on Pred- let's just say it's still getting on my nerves. :voodoo: I'm pretty much a big fat baby when it comes to my health now- I have no patience for anything that makes me sick. My taper ends in Feb, so there's some light at the end of the tunnel now.
 
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Hobbes650 said:
No you don't. Not this way, but I hear ya. When I was dx with Ulcerative Colitis in 1986 it got real bad and I lost lots of weight in a short time, even while taking 60mg per day. This time around the disease is not so bad, but I've gained lots of weight even though I'm not taking nearly as much Pred. I'd much rather be like this than when I as terribly sick, that's for certain. But after having 25 years of no meds because my surgery "cured" Ulcerative Colitis only to be diagnosed with Crohns in May and back on Pred- let's just say it's still getting on my nerves. :voodoo: I'm pretty much a big fat baby now when it comes to my health now- I have no patience for anything that makes me sick. My taper ends in Feb, so there's some light at the end of the tunnel now.
Click to expand...
Crap dude, that sucks. I hope you get back to how you were for those 25 years soon.

Sorry about how that sounded, I didn't mean to make it sound like you were better off than me or that I wanted to trade places with you or anything like that... I'm just sick of looking like an advert for Unicef and the prospect of eventually being able to gain weight is a happy one.
 
LondonSnow said:
Crap dude, that sucks. I hope you get back to how you were for those 25 years soon.

Sorry about how that sounded, I didn't mean to make it sound like you were better off than me or that I wanted to trade places with you or anything like that... I'm just sick of looking like an advert for Unicef and the prospect of eventually being able to gain weight is a happy one.
Click to expand...

Hi London! No problem at all. Technically, I guess I should say I have Crohns Colitis even though the colon is long gone. I just call it Crohns as it's easier to explain. I didn't want to minimize anyone else's experience as I tend to minimize my own sometimes, which is why I wanted to respond to your post. Having a flare up and controlling it well with Pred is a short term solution- hopefully the other meds allow me to come off Pred completely. But I'll be taking meds rest of my life, so it won't be exactly like before. Once the Pred is gone, I'll be back to being ecstatic. I've been both very unfortunate, and very lucky so I can relate to just about everyone it seems. :thumright:
 
LondonSnow said:
Crap dude, that sucks. I hope you get back to how you were for those 25 years soon.

Sorry about how that sounded, I didn't mean to make it sound like you were better off than me or that I wanted to trade places with you or anything like that... I'm just sick of looking like an advert for Unicef and the prospect of eventually being able to gain weight is a happy one.
Click to expand...


That reminds me of how I looked after my 1987 surgery- all 108 lbs of me, and I'm 5 feet 10. I thought people who came into my room were going to give me money. :biggrin: At some point though, most sufferers turn it around with the help of meds or surgery. Being in that middle ground where you seem to be now is truly hard. I was like that for over a year. Not able to gain much weight (peaked at 130 pounds, 20 less than when I wasn't sick), not able to get off Prednisone and not having much control over my poop- one can only live that way for so long. Hopefully you're on the way up!
 
prplkow said:
Wait....I forgot the best one that my mom said during her visit....

"The only person I have ever known with Crohn's died because of it."

Thanks mom....you are such a fricking gem.
Click to expand...


Well, my mother told me dad's patients all got better. i didn't and had surgery instead. Some moms can't win no matter what they say, I guess. :ywow:
 
Must be something in the water over there- this sounds all too familiar and my mother's side is from Fox Chapel, Pa.

I think Parent's in denial is the worst. I was 18 and mine all acted like it wasn't any big deal. When things got worse they refused to believe it. Part of the problem was that my father was (he passed long time ago) a doctor who basically lied to everyone in my family so they wouldn't worry. I was going to be fine because everyone gets better- that was the family belief, end of discussion. When that didn't happen it and my doctor wanted me to consider surgery, the poop hit the fan. Unfortunately it seems, family stress creates family monsters. Sometimes they all mean well, but sometimes you're not so sure. Nowadays with so many resources online and support groups like this site, people can get better educated. Probably not the case back in 1995. Thanks for sharing your story here as it will certainly help someone!


archaeopteryx said:
My parents have lived in total denial of my Crohn's since I started showing symptoms in 1995 when I was 16. After I'd had the disease for about 9 years, I went through one of the worst years of my life (second only to the year where I developed the disease) and was fired from a hellish job, totaled my car in a car wreck, and my first husband decided to leave me.

My dad's comment to me over the wreck my life was at that point? "At least you have your health." My mouth dropped open and I was rendered speechless. I don't think I even responded. All I could think to myself was, "I haven't had 'my health' in years, and I likely never will again. How could you say that after seeing how I nearly died before I got a proper diagnosis?" But I didn't say anything, because it's like talking to a wall with them. They monitor how they think my Crohn's is doing by how much I weigh, not taking into account that my weight has little to do with my disease activity.

Frustrating, to say the least.
Click to expand...
 
What about when you finally feel well enough and apply for jobs and you win a 6month contract and the friend you love the most says "Are you sure you are well enough to work?"

The docs think I am and so do I - I am bored at home now - I so need to think
 
Co worker = OMG you have lost a ton of weight. How did you do it?
Me = I didn't do it, I had a realy bad Crohns flair.
Co worker = ohhhh how do I get one of those?
Me = I will happily give you mine!

I just laughed. I don't think she knew what Crohns was. But I will still give it away... any takers out there?
 
woops! said:
Co worker = OMG you have lost a ton of weight. How did you do it?
Me = I didn't do it, I had a realy bad Crohns flair.
Co worker = ohhhh how do I get one of those?
Me = I will happily give you mine!

I just laughed. I don't think she knew what Crohns was. But I will still give it away... any takers out there?
Click to expand...



Nice. I have one I can give away too, if you have any other takers. :)
 
Hobbes650 said:
Must be something in the water over there- this sounds all too familiar and my mother's side is from Fox Chapel, Pa.

I think Parent's in denial is the worst. I was 18 and mine all acted like it wasn't any big deal. When things got worse they refused to believe it. Part of the problem was that my father was (he passed long time ago) a doctor who basically lied to everyone in my family so they wouldn't worry. I was going to be fine because everyone gets better- that was the family belief, end of discussion. When that didn't happen it and my doctor wanted me to consider surgery, the poop hit the fan. Unfortunately it seems, family stress creates family monsters. Sometimes they all mean well, but sometimes you're not so sure. Nowadays with so many resources online and support groups like this site, people can get better educated. Probably not the case back in 1995. Thanks for sharing your story here as it will certainly help someone!
Click to expand...

Yeah, something about Western PA in general. I grew up in a tiny town south of Erie, and it's amazing how many cases of Crohn's there are in a town with 300 residents. I was 16 when I started showing my symptoms, and my dad was a teacher who was advised by his co-workers that I had anorexia. Then after my diagnosis, they just decided to act like I had nothing wrong with me, ignoring to this day (17 years later) how hard this disease made my life with job problems, marriage isssues, and severe depression and anxiety.

I should go and introduce myself in the appropriate area as I've been reading but not posting much as of yet here.

On-topic thoughtless Crohn's comment: Doctor who saw me in the ER before my Crohn's diagnosis to my parents, "Your daughter is exhibiting all of the classic signs of anorexia." Talk about stupid, after I had just told him about my stomach cramps and diarrhea I was having every single day after eating.
 
I've heard many of the things posted on the thread. But I have some of my own

My Grandfather (who sees a witch dr) has many opinions on my CD:
"If she just ate some yougurt everyday she would be fine"
"You should stop taking all your medicines, the drug companies want you to be sick" (Sometimes I think this might be true)
His newest thing is drinking food grade peroxide, its supposed to cure everything

My ex-fiance didn't understand why I was so tired all the time. He didn't understand the urgency issue either until one night I made him dead stop the car after making him drive 70 miles per hour so I could crap on the side of the road. (That was real romantic) He used to tell me "So what, I'm tired too at work on sunday morning, I just drink a red bull" 1. I can't function if you want me to stay out unitl 2 am and then work at 7. and 2. I can't handle caffiene.

His family didn't understand. We were at a resturant visiting his grandmother and when I excused myself from the table his grandma said "Wow Kate put on some weight" He had to explain it was the medication I was on.

I think the problems come from
1. A general lack of understanding of the disease, what it affects, what the symptoms are and how they sometimes make life impossible.

2. I don't get that mad when people say "Oh I can relate because..." because to them it might be the most painful thing they have experienced and they don't know how that compares to CD. They are simply offering their empathy in the only way they know how.
 
"You're ill because you're an atheist" - my brother.

Well, **** you and your God if he's doing this to me. Way to tell me that an hour after basically finding out I'm slowly dying from liver failure.
 
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Went out for dinner last night with a friend who's recently put on a bit of weight and is now trying to lose it. Got "you know, you're kind of lucky you're sick cos you'll never put on much weight... "
Yeah, that's exactly what I think every day!
 
Hobbes650 said:
Have your brother read this book:

http://www.amazon.com/Decision-Maki...&keywords=decision+making+and+the+will+of+god

This will certainly make him think twice about saying stupid things like that, and it's non-denominational.
Click to expand...
Hey, thanks for that and that you linked me to that book makes me think you might be a Christian and I'm really sorry I said something so inflammatory in public (to anyone else who read it too). I know most of you wouldn't say anything stupid like that due to religion, because you've all been very caring and helpful here and I know how American this board is so I imagine many of you are Christians. Christians with care and empathy for people regardless of race, gender, faith or a lack thereof... and I don't hate what you believe.

Whatever my brother believes is obviously not the same as what you believe, no matter how superficially similar they might be, so I really hope you guys get that I hate what he personally believes and not the people in the world who happen to identify by a similar label.
 
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LondonSnow said:
Hey, thanks for that and that you linked me to that book makes me think you might be a Christian and I'm really sorry I said something so inflammatory in public (to anyone else who read it too). I know most of you wouldn't say anything stupid like that due to religion, because you've all been very caring and helpful here and I know how American this board is so I imagine many of you are Christians. Christians with care and empathy for people regardless of race, gender, faith or a lack thereof... and I don't hate what you believe.

Whatever my brother believes is obviously not the same as what you believe, no matter how superficially similar they might be, so I really hope you guys get that I hate what he personally believes and not the people in the world who happen to identify by a similar label.
Click to expand...



Yes, got it originally and no explanation needed. I recommended the book because it's a good book to read for anyone who believes in God, regardless of their faith. So no worries, I am not all offended. The point of the book, in short, is that the kind of thinking behind your brother's statement is immature. Crap happens in life and it doesn't mean God is punishing you, or anything like that. It's an interesting read, regardless of what one believes.
 
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LondonSnow, so sorry your brother said something so thoughtless! And don't worry about people on here being offended by you. Frankly, I'm a little offended by Christians who talk like that--yup, we have them in the US too. Every time a hurricane comes through, some insensitive person announces that it was because of the sinners. It's just as painful for Christians to hear that kind of talk as it is for you, because it's wrong. As 723crossroads, Doug, and Hobbes pointed out, good and bad things happen to everyone regardless of their faith. Besides God never promised life would be easy for his followers; we just have Him for company along the journey.

Best of luck with your brother!
 
No disrespect guys they are really thoughless comments but its really cheered me up reading them.
...i was on pred a pretty heavy dose for about a year and i put on a tonn of weight i was really depressed about it and had lost all confidence i went to see the nurse and she asked me what condition i had i said crohns and she said 'oh i thought people with crohns were meant to be thin' at the time it really upset me but over the years i have developed a pretty thick skin now when i get thoughtless comments i just shake my head and roll my eyes!
 
Have to share this one,

Its my birthday today and my partner got me a card with a toddler on the front, he's grimacing and straining and the caption underneath says

"For the love of god......i think this ones coming out sideways"

I'm having a flare at the moment and it really made me chuckle :)
 
On a night out my other half was annoyed we had to walk so far, wanting to go home instead. i said, ok, when we get to the next bar we'll get a taxi to go home. This wasnt good enough, he flipped out and said, 'if this was you needing the bathroom we'd all have to stop!!'.
I was dumbstruck! The things that emerge when we're drunk ehh!
 
Mia E said:
On a night out my other half was annoyed we had to walk so far, wanting to go home instead. i said, ok, when we get to the next bar we'll get a taxi to go home. This wasnt good enough, he flipped out and said, 'if this was you needing the bathroom we'd all have to stop!!'.
I was dumbstruck! The things that emerge when we're drunk ehh!
Click to expand...

Like I tell my friends on here, bloom where you are planted, sort of what your avatar says!:D
 

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