Do you tell people?

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Dwy

Joined
Feb 9, 2012
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Not sure if this is the right place to put this and I'm on a bit of a posting spree so I wanted to see how people feel about this.

If you have crohns/colitis do you tell people? My mum has a thing for telling all her friends and then they all start asking me how I am all the time, it really is the worst thing. When I was first diagnosed with crohns last june I kind of started telling a few people without really thinking about it and some of them had mixed reactions/didn't really know what to say.

Probably 4 of my close friends know, some 30 other people i hang out with at least once a month don't.

Does anyone make a point of telling people?

Also if you were to start seeing someone would you tell them?
 
Hi Dwy,

People in my office at work (theres only 7 of us) all know that I have Crohns.
My best friends know but outside of that I don't like telling anyone.

Not only do I not like the 'how are you questions' but I get concerned that people just google Crohns and will then think 'oh she just poops a lot, thats all'.

I'm sure when I start seeing someone again I'd have to tell them but not sure how I'd bring it up! x
 
I think the exact same thing!! "Oh god they're going to google it now..".

Do you think you need to tell people at work or was that just out of closeness to them?
 
Dwy said:
I think the exact same thing!! "Oh god they're going to google it now..".

Do you think you need to tell people at work or was that just out of closeness to them?
Click to expand...

The only reason people at work ended up knowing was because I got sick a few months after I got the job and it took about 8 months to be diagnosed and everyone knew I was unwell. As its a small team, its noticeable when Im off for docs appointments and stuff.

I don't tell them everything though, kept it hush hush when I had a colonoscopy..didn't want everyone to know I had a camera up my bum hehe x
 
I am the same, my family, close friends and people at work know because I had 2 weeks off while I was in hospital. Other than that, I don't go round telling people.
 
For the first 20 years - just my family and a few friends.
I always tried look tanned and healthy (best Vitamin D count out of all my GI's patients!) - so people never suspected I might be sick - and I was in remission most of the time - so things were fine. I was also always wary about being discriminated against if people knew.

Now - I can't hide being sick and I don't care anymore. I tell friends quite openly - there is no other real way of explaining revolving door hospital stays, my inability to attend social engagements, my rapid weight loss, my gurgling stoma!
It is amazing the number of people who know somebody else with CD.
I kinda think I am at the raising awareness stage and I am too old now to care what anybody might think.
I am very wary about telling business associates.
I have however been very open at the places I teach. They are very supportive and understanding.

Interestingly - my parents are very fussy about not telling people - to protect my privacy. Which I very much appreciate.
 
If i don't tell people then they tell me! we look ill quite often. they tell me i'm very yellow, or very white, or "you look really ill, are you ok?" sometimes people tell me outright, i look like ****. that always amuses me.

anyway, i have to answer them so i tell them. yes they usually know a little about it, but then begins the inquisition. trouble is, when you are ill you don't want to have to be answering all their questions. i hate this disease.
 
I have to admit, I tell anyone and everyone!

I've always felt that we Brits are a bit uptight about all this bowel stuff and I try to adopt a more Northern European attitude to it all. My kids found the toilets in Innsbruck airport totally bizarre, especially when I explained that the small 'shelf' in the toilet bowl is for the poo to land on so you can have a good look before flushing it away!:biggrin:
IIRC bowel cancer is generally detected earlier in countries with a more open mentality, resulting in a better survival rate.

I told people at college, including my tutor, who have all been very supportive and interested in finding out about it. It means I can just slip out of class if I need to, without disturbing anyone.

The other benefit is that almost every time I talk to someone about it, they always know someone, or a friend of a friend, who has it, often with no complications or big impact on their life, which has helped me to feel more positive about it all.

I definitely feel that the more we talk openly about these things, the less stigma and embarrassment there will be, and perhaps people will feel they can seek help earlier rather than waiting until they're really desperate.
 
I tell anyone who needs to know when in remission,but when I'm poorly I'll tell anyone who'll listen.But I'm 63 and I don't give a monkeys what people think now.I can see how younger sufferers would be embarrassed though.
 
I don't announce it to everyone I happen to meet, but I certainly don't hide it, either. Everyone who knows me knows I have Crohn's. I talk about my treatments and stuff on FB. All my coworkers know because I'm out so often for doctors' appointments and infusions. I'm very open about it.
 
I agree, Scottsma.

I'm 41, spent a few years in nursing (a real eye-opener!), and have experienced many of the indignities which can result from pregnancy and childbirth, so perhaps I'm just getting immune to bodily embarrassments!
 
I don't mind if people know, but *I* want to be the one to tell them. It bugs the snot out of me when friends or family tell others about my disease. I don't talk about their medical issues, so I would like the same in return. I feel like it's my choice who I tell or who I don't. And I don't tell everyone I meet, but I don't hold it back either.
 
telling people

I don't worry so much about telling people. However, i am an open book. Does tend to bother me when my mother tells all her friends that I do not even know. I choose who I want to tell. Don't really want any of my buisness out there unless I am the one to put it there. That must be how parents are though. They really are worried about us that is why they share. Doesn't make it any better though when a perfect stranger u meet for the first times know intimate details of your life:redface:
 
My mom, dad, and both sets of grandparents know...husband and daughter of course too. No one else in my family knows. 2 close friends and now due to my rapid weight lose and missed time at work everyone at work knows.
 
I tell people who need to know, like bosses at work. I feel like it is important to be honest about it so they don't get shocked if I say I can't do anything or need to go home early or have appointments.
My tutors at university know for the same reason. I tell my close friends most things, although I usually keep things to myself untill I have been to the doctors and know what is going on.
I won't tell someone I have just met unless it has come up in conversation, or as I get to know them better.
I usually expect questions or narrow mindedness, sometimes it upsets me and sometimes it doesnt. I suppose it depends on my mood, or the comment.
My mum is quite happy to tell everyone. I don't usually mind but I don't like how I sometimes end up village gossip. One day I bumped into a girl I know from school who goes to my uni and she said 'My mum said she heard you wern't well' Well how did she know coz I know my mum doesnt talk to her mum?
Also the way my mum will say: 'We got an extension, we have a downstairs toilet now. Its a lot easier with Holly' Well thanks mum, why did you say that when u know for a fact the only time we were fighting for toilets before was when I was prepping!
 
This is a really good question, thanks for asking it. When I got my CD diagnosis last year, I read an excellent book by Judith Sklar, "The First Year: Crohn's Disease and Ulcerative Colitis." She recommended not telling your boss and co-workers, and I'm glad I didn't. Since then, several other people on this forum have commented on the cruelty and lack of compassion they experienced at work. I've been able to continue working with very little lost time, so I didn't feel I needed to tell anyone.
 
All my family and most work colleagues know. I don't tell people I have just met but do not feel any need to hide it either, if they have an incorrect opinion of it that is their problem not mine. I do work for a company that is in the field of disabililty so there was no worry of descimination or poor attitudes for me. In fact my employer is very helpful and never quibbles about time needed for appts etc, I know I am very lucky in this area.
 
I have told my bosses, and my coworkers I am on call with, and a few friends I was ditching weekly social activities (so they knew i wasn't intentionally snubbing them)... that's about it. After I got a diagnoses I finally told my parents i was having problems and what it was (so i could avoid going up for the "extended family Christmas party" where 2 toilets were to service 80~ or so people that make up my family, ha at the time I would have needed one reserved for myself alone!). Then my parents then told everyone on the planet that knows me ._. yay... i would have left it a secrete from my parents/extended family if I could have.
 
Samboi said:
For the first 20 years - just my family and a few friends.
I always tried look tanned and healthy (best Vitamin D count out of all my GI's patients!) - so people never suspected I might be sick - and I was in remission most of the time - so things were fine. I was also always wary about being discriminated against if people knew.

Now - I can't hide being sick and I don't care anymore. I tell friends quite openly - there is no other real way of explaining revolving door hospital stays, my inability to attend social engagements, my rapid weight loss, my gurgling stoma!
It is amazing the number of people who know somebody else with CD.
I kinda think I am at the raising awareness stage and I am too old now to care what anybody might think.
I am very wary about telling business associates.
I have however been very open at the places I teach. They are very supportive and understanding.

Interestingly - my parents are very fussy about not telling people - to protect my privacy. Which I very much appreciate.
Click to expand...

Same with me, first 15 years or so it was family and some school teachers that had to know, my parents advised me to keep it to myself as they felt I would be tortured by cruel teenagers at school who didn't understand, they had a point but kids can be cruel especially when they see you at your worst and all sorts of rumors start to fly.
Then in my 20's I just grabbed the crohns by the bum hahaha and told people freely, I think now aged 36 and having two childbirths I have no shame but it has helped me come to terms with CD and I have even recommended that people see a GI when they have bowel issue's only for them to tell me months later that after years of suffering in silence they now have a DX.
I can fully understand wanting to keep things private especially when we are flaring not wanting to answer endless questions, but IBD is on the incline and if we can educate and even help one other not suffer the issues we suffered well then I'll talk till I can't talk anymore. I seem to have a talent for talking crap :biggrin:
Well wishes to you all.
Gwen xxx
 
I have to say I am not very open about CD. My family knows.i.e hubby kids, some of their closest friends because I used to be the local Mom who drove everyone everywhere before all this. I had a person I thought of as a good friend I told when she wouldn't let up about why I was in the hospital. A year later she used it against me in the worst way.I was very hurt and humiliated so now I have a lifelong friend I talk to about it my husband and doctors. I was tickled when I found this forum because in all honesty I was about to loose my mind..lol..As for everyone else I don't really care what they think if I miss nights out or can't help with all I did before. I just have felt very betrayed by most of the people I know because they didn't even take the time to know the real me.
 
Good point Gwen. Me being more open about my situation has made others feel more comfortable about discussing their bowel and intestine issues.
I have actively encouraged others to see specialists, seek second opinions and be relentless in their pursuit for answers. Some people are just relieved to have somebody else to talk to.
This also enabled me to find one friend who had CD, had a resection about 20 years ago - symptom free ever since. So there is hope for all of us!!
 
I was moving house last year and was out buying things for the move when my hubby got into a discussion with a salesman I don't remember how it all came about but he started to tell this man about my illness in front of me so I let it unfold. The guy went quiet for a few minutes and I thought oh god my hubby had gone to far and the man is embarrassed but he said his wife was having similar issues and that he was worried as the hospital she was attending where doing all sorts of tests and finding nothing.
I asked what her symptoms were and what test they were doing and couldn't believe what I heard. It was like she either hadn't told them the true symptoms or they were just way of the mark so I recommended my GI and when I met the man a few weeks later he told me I was right she had CD and was just about to have a resection done, she is doing well now after years of ill health.
I fully agree Samboi there is hope for us, the more we all talk the more informed we can be, we can approach our lives and our medical teams with information we have gained and take a positive stand with our treatment plans.
I was the first to suggest bowel rest to my GI two decades ago only to be laughed at, now it's common practice.
The answers are out there and hopefully in time ibd will be a thing of the past.
Gwen xxx
 
Soert of have to tell your colleagues when you are off for the porcelain throne every our, and have to go to the hospital for blood tests every week, and see a doctor every second month or so...
 
people I'm close too know otherwise. If i'm having issues about eating i just tell people i have stomach problems or about my arthritis oh i have back issues. that is ussually enough for most people.

how many dates till you sell some one?
 
Gwen pippy said:
I was moving house last year and was out buying things for the move when my hubby got into a discussion with a salesman I don't remember how it all came about but he started to tell this man about my illness in front of me so I let it unfold. The guy went quiet for a few minutes and I thought oh god my hubby had gone to far and the man is embarrassed but he said his wife was having similar issues and that he was worried as the hospital she was attending where doing all sorts of tests and finding nothing.
I asked what her symptoms were and what test they were doing and couldn't believe what I heard. It was like she either hadn't told them the true symptoms or they were just way of the mark so I recommended my GI and when I met the man a few weeks later he told me I was right she had CD and was just about to have a resection done, she is doing well now after years of ill health.
I fully agree Samboi there is hope for us, the more we all talk the more informed we can be, we can approach our lives and our medical teams with information we have gained and take a positive stand with our treatment plans.
I was the first to suggest bowel rest to my GI two decades ago only to be laughed at, now it's common practice.
The answers are out there and hopefully in time ibd will be a thing of the past.
Gwen xxx
Click to expand...

I'm with you - I tell people if I'm in a situation where it's appropriate. People's reactions usually come from the fact that they don't understand, so I'm on a mission to educate everyone I reasonably can, especially doctors.

I also run into people who are having similar troubles and not being diagnosed.
 
I think for me its diffucult being undiagnosed. I ve got a stomach problem or a bowel problem or I dont know what the hell it is but it has been running my life into the ground for the last few years --- then they run away. So no i dont tell people until now. cause so many people are goin through this with no advice and no support and frankley we need to talk and stand up to the doctors when there doin the brush off.

Un DX for 3 years IBD symptoms

Asacol 800mg
Amitriptyline
various other thing s that didnt work.

Tomorrow is a new day.
 
outlier said:
how many dates till you sell some one?
Click to expand...

I found this difficult in the beginning, I would say I had stomach issues and would then see how the relationship progressed. Then with my hubby we met in work Aug 2000, started dating Jul 2001 and a few weeks into dating he made me laugh so hard I passed wind and was mortified, he roared with the laughing and I thought alright it's OVER, but then I opened up about CD and he said he had never heard of it but why was I so worried about his reaction as he loved me. I knew that instant it was to be and he went on to learn all about CD and educate everyone he met about it, esp his family who had their own opinions on wether he should burden himself with a sick partner. Now nearly 11 years on we are happily married two kids and most of his family accept I have an illness but that is for a different post hahaha
My hubby did tell me years later that he had fallen in love with me the day he met me and when he came to work for the company I was on steroids with huge swollen stomach and the usual skinny arms and legs and thought NOOOOO she is pregnant and with someone else then a few weeks later we met again and I was back to my normal size, so it explained a lot in the end.

If they are worth being with they won't see CD just you.
 
I think the majority of people I know are aware I have something wrong with me, whether they remember it's Crohn's or think it's Arthritis, only because I was unwell for nearly a year, with my main obvious (to everyone else) symptom being that my knees and ankles had swollen so much I was unable to walk properly, and I was rapidly loosing weight which made me look like death on a plate lol.

I don't really like to talk aboot it, it seems to be the first question I get asked, but I just say I'm fine, no need to get into it unless it's with my very close friends.

Anyone new that I meet, I don't tell unless it is really relevant to the discussion.
 
I'm pretty open and tell people as I do get the "You look ill, are you ok?" quite a bit. I especially like to tell people I work close with as I'm often off work, I'd rather they knew from the horses mouth so to speak what is wrong with me and so there isn't any "I know someone with crohn's but they just don't eat this or that and are perfectly well". What I've recently found hard about telling everyone is trying not to be so selfish and always talking about myself and how ill I am. I bumped into my friends dad whilst in hospital and was to busy telling him how I was, I forgot to tell him I was sorry to hear his mother had died. Felt really bad about that for a long time. So when I am blabbing on about my illness I'm really cautious now to make sure I'm genuinely interested in how others are doing too!
 
chrisnsteph1022 said:
I don't announce it to everyone I happen to meet, but I certainly don't hide it, either. Everyone who knows me knows I have Crohn's. I talk about my treatments and stuff on FB. All my coworkers know because I'm out so often for doctors' appointments and infusions. I'm very open about it.
Click to expand...
That would describe my attitude toward it. I don't meet new people and go "hi, I have colitis", but I don't hide it either. Luckily I don't have to take a lot of time off, but had to get a colonoscopy a few weeks ago, and if anyone asked why I was off, I told them.

It actually comes up in conversation sometimes, for example, someone is going to have their first colonoscopy, and I offer advice if they want it. I try to judge how much someone wants to know and ease into as much as they want to hear.
 
I've been diagnosed for less than a year, but I've been pretty open with people as well. I went in and out of the hospital for almost a month last May at the end of my 1st year of law school and kept my friends and extended family posted on what was going on. I also tell people when it prevents me from going out to bars, missing classes, etc. Since I'm in law school and looking for a job (for summer 2012 and after graduation) I try not to blow it up on facebook or mention it during interviews. Even though I don't necessarily think it'll happen, I'm somewhat nervous that potential employers will get a negative impression and think of me as a risky asset, ergo not hiring me.
 
chrisnsteph1022 said:
I don't announce it to everyone I happen to meet, but I certainly don't hide it, either. Everyone who knows me knows I have Crohn's. I talk about my treatments and stuff on FB. All my coworkers know because I'm out so often for doctors' appointments and infusions. I'm very open about it.
Click to expand...

Hii,

I have to agree, I may not discuss it at first, but I certainly don't shy away from stating I have a dilemma with my body. Though I do not have a FB, and even if I did I would not post my troubles. However if anyone needs advise or has similar problems, I often share my story or information that I have from experience.
I just recently finally found a lover who I really admire, and explained to him my disease. Especially now because, currently I have been experiencing gas with mucus issues, which despite I was fearful of telling, I told him because I even exploded in front of him, which was the most embarrassing incident ever! Hopefully now he understands better what I am going through and accepts that I am not like a normal healthy person.
So, depending on the person, I judge, who I can freely inform to. My whole family knows-from the start they were there to support me, and all my friends, and now my new boyfriend knows.


kisses, Aya
 
Interesting discussion!

I only tell people who need to know. A few of my closest friends know, and my immediate family. A few of my other family members know because I had to tell them due to a kid with a contagious infection.

At school, I've had to tell some people due to certain situations, but I try to avoid it as much as possible. It's not that I'm ashamed or anything, I just feel that it's personal and none of anyone else's business.
 
In that past I rarely told people of the grumpy gut. It seemed even if I did tell, others had little care or ability to understand. And I couldn't blame them! Then my parents starting telling others about the condition, which was a bit odd. I think there were a few times where an introduction would strangely be along the lines of, here is our son he has stomach problems. I recall joking once, that yes it's true, best not to sit next to me.

I have learned that in a few rare circumstance having this condition can have its advantages. The folks were over visiting at my place with a friend recently, and kept talking and talking, about what I don't know. One mention of the gut feeling poor, and all were out the door in 5 minutes!
 
I tell people I have Crohn's; if they Google it, great, less explaining for me. I used to worry what people would think, that I shouldn't talk about such a "private" problem, but I am so over it.

People talk about all kinds of stuff with no shame, why should I feel embarrassed over a disease?? Just my two cents. ;)
 
We don't hide Oli's Crohns but we don't broadcast it either. Family and close friends know and his friends sort of know at school because he had a lot of time off last year, but they forget - even Oli forgets, which I think is good, he can concentrate on being a kid and do kid stuff and let me do all the worrying!

Oli has Crohns - Crohns does not have Oli!

Treena x
 
I was open about telling people when I was first diagnosed, but I have slowed down telling people because everyone I tell gives me there personal opinion on what I should and shouldn't eat/drink. It gets really annoying. Someone told me their priest could have cured my crohn's and I would never have had to have surgery, lol.
 
Stickman that is what friends here tell me all the time..lmbo Either go to the Priest or a medicine man.. Look I am all for the higher powers but seriously? He gives me strength when I need it but I think plans for my path changed some time ago. I can understand I live in the Bible belt but ya know....well I will leave it at that.lol.. Hope y'all are having a good start to this Friday
 
I dont tend to tell anybody i tend to lock myself away when having a bad flair then the rest of the time i like to put the illness to the back of my mind and try and interact like im normal and keep a posotive mind.
 
I tell everyone and anyone, if they ask I elaborate. Most have heard of Colitis but not Crohns. If we dont tell anyone how will we get any awareness of the disease? People need to know this is not a stomach ache. I find most people will say my brother, cousin or coworker has that, nasty disease! If we dont tell what it is, who will?
 
I rarely discuss it. Obviously family know but very few friends and co-workers are aware that I have Crohn's. I had the best opportunity post-surgery when I lost over 20 kg and opened up to the few who showed concern but other than that I "pretend" that all is well.
 
I would only tell family and close friends.
Until i had my surgery. I was on the ward with 5 other women and i actually gave a lecture with an question and answer session at the end! It was fab. So liberating. Even the nurses joined in and a few said some of the stuff I suffered even they didn't know could happen.
One lady said that her sister had been poorly for a while and she phoned her up and told her to go get checked out and not to take no for an answer.
Some wanted to see my bag others didn't. But they all asked questions and thanked me for being so honest after.
I think whatever you are comfortable with is good for you. There is no right or wrong its personal choice.
 
I never liked everyone to know I had it. I only tell people if I thought it was important to know. Like If I start to date someone I would tell them cause it would be important . I don't feel ashamed to have it. I hear a lot of people have it if I say I have it.
 
I come right out and tell people. I didn't choose to have this disease so why should I be embarassed? I go to the restrooms a lot and people think I'm sick and I'm like yes I'm very sick I have Crohns Disease! Why not just tell people? They can't get mad then when you go on trips and use restrooms nonstop..........etc....
 
Hey all! My first post here!

I avoid telling many people and don't like talking about it much. Family, friends and a Fe coworkers is more than enough! Only the need to know people!
 
I tell people. Although, I have the same worry as many that most think I just poop a lot. It doesn't help that the commercials on tv for Crohn's focus on the bathroom aspect of it..so a lot of misinformation leads to that stigma as well.

I will say facebook has been my biggest ally though. I post about my test and all my results, and so many people who either have an IBD or have family member who has one have come forward and showed support to me! It's been amazing, and I am glad I chose to tell:)
 
I tell anyone who asks or it's appropriate to tell. I've only just been diagnosed but as my eating/drinking habits have radically changed it's easier to just say to people 'I am no longer eating everything under the sun/drinking alcohol because it isn't agreeing with me because...'
for me it just feels easier to be honest and straight to the point, then they can ask all the questions they want (which is good, some people have asked things I hadn't thought of asking yet!) and it gets rid of any 'are you sure you're ok?' 'you aren't eating much are you alright?' 'teetotal? since when? haha that won't last'
also talking through things is helping me alot, I'm sure i'll be sick of the subject soon enough ;)
 
I don't have to tell people. They see me hobbling around in pain or suddenly dropping 20-30 pounds, and they pretty much already know :). I've gotten used to little kid gloves and sympathetic looks, especially from my dad.

I've been blessed with coworkers who pretty much pretend that nothing is wrong even though I can barely walk at times. But they take care of me and give me time off when I need it.

Almost everyone I know knows someone else with crohns disease. I don't have a problem telling people about my illness and educating them. Its better than them thinking I'm dying of cancer or something. I keep the intimate details to myself, of course. They don't need to know everything.
 

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