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Do you tell people about your Crohns?

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Crohn's Disease
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Posted 6/28/2015 2:36 PM (GMT 0)
When I went to the hospital, I just tell people "I had an infection". Besides family I, the only other person I told was my gf but she figured it out on her own because of the symptoms I experience. But I told her, "dont tell your family or friends"

Not sure if anyone agrees but for me I am embarrassed by it. I hate everything about it. I dont like the idea of going to conventions/Crohns walk/run events.

How do others feel?
Posted 6/28/2015 3:51 PM (GMT 0)
I don't broadcast it to the nation but I certainly don't pretend to other people I have something else instead. Ridiculous behaviour.
Posted 6/28/2015 4:01 PM (GMT 0)
NCOT, some people feel very self conscience about sharing they have IBD or even IBS due to the sensitive nature of the disease, no one likes to talk about poop (if they do, I think that's weird, like talking about it that is) society is weird at the best of times and poop talk is very touchy for many people especially in person face to face, on sites like this it's no big deal because we're looking for support from others that have a good idea what we're going through, people that don't live with it can be pretty judgmental about poop talk. So I don't think it's ridiculous, I think whatever makes you feel comfortable is what counts.

Billo, I don't go out of my way to tell anyone in person unless there's a reason to and with family and friends I don't tend to bring it up all the time unless I'm really struggling then I'll warn them I'm having a bad day but even then it's usually only if they ask cuz I don't want to always be looked at as a pooping machine, even with friends and family it's embarrassing after 2 decades of dealing with gut issues.
Posted 6/28/2015 4:22 PM (GMT 0)
Nobody cares if you have Crohn's or any other disease. Also, why do people equate talking about Crohn's with talking about poops? I don't say to somebody "I have Crohn's disease. Oh, and I also pass 8 liquid stools a day. Would you like to see a photograph of one of my poops?".

I have never talked about poop to anybody in real life. I have found it surprisingly easy to avoid.
Posted 6/28/2015 5:04 PM (GMT 0)
It's still a touchy subject for people with or without gut issues...and many sadly still don't even know what crohn's is...once when I was at a new hairdressers I explained that I may need to use the washroom at any given moment and said I had crohn's and the stylist responded back saying she thought crohn's was a blood disorder so believe me when you explain to some people, their reaction (facial expressions speak volumes) can make you feel very uncomfortable and bad about yourself, people are way to judgmental in this twisted world we live in.
Posted 6/28/2015 5:36 PM (GMT 0)
No, I do not. I do not share my conditions with others outside the family, unless there is a need to know. I am not embarrassed by it, but that doesn't mean that others have a right to know.
Posted 6/28/2015 6:40 PM (GMT 0)
I don't feel embarrassed to have Crohn's, and all of my family and close friends know about it. I don't feel compelled however to "educate the world," and I only share my diagnosis if I feel like it. I was recently at an urgent care center for a throat culture because I was having high fevers and a sore throat. I told the nurse about my Crohn's as I thought it was relevant, in that I only wanted antibiotics if the culture was positive for strep, so I could avoid c.diff. The nurse proceeded to tell me about her neighbor who had Crohn's with bowel resection surgery. She said it was a good "wake up call," for him to take better care of himself and follow "his diet better." I almost opened my mouth to say that I don't consider that it is my fault that I have Crohn's or that I needed surgery, but then I decided that I was too sick to really care, and I didn't need to bother to educate her. That is progress in a way for me. I just politely smiled and said "I hope your neighbor is feeling better." It is infuriating how stupid even medical professionals can be!
Posted 6/28/2015 8:03 PM (GMT 0)
I am pretty open about it. I don't walk around broadcasting it, but I also don't try to hide it. I've learned to read the signs people give if they're interested or not based on the questions they ask, etc. I usually get asked what it is, and I say that it's an autoimmune disease where my immune system is rejecting my digestive tract. After that, I just kind of talk about it based on what their questions are. I have found, however, that since I was the one who opened the door, I need to get used to the same kinds of questions each time, offensive or not. I choose whether or not I want to be offended by someone's viewpoint of me. I've had a couple of people be snotty about it, but most of the people I come in contact with are pretty nice and sympathetic.
Posted 6/28/2015 8:28 PM (GMT 0)
I have had Crohn's for 10 years and at first the only people that knew were my family and roommates in college. I managed to get through all of college and graduate school without needing to tell my professors or friends. When I got really sick and had to have surgery I had a picc line, was carrying around a TPN bag for 12 hours a day, and had to take 6 months off work for surgery I couldn't really hide my condition from my colleagues or the families I worked with. Even now that most people I interact with know I have Crohn's, I almost never talk about it with anyone besides my husband and parents. I just really feel like my health is my business and I have no interest in educating others or letting people know how I feel.

My parents tend to ask me about my health every time I see them and I can tell that it really stresses them out, so I actually tend to minimize my symptoms with them. My husband is the only one I am 100% open with, and I feel guilty about that sometimes because I don't want him worried either.

It is tough being chronically ill because I feel like you lose some privacy and are almost expected to be an open book about your symptoms and how you're feeling. Like just last week my dad asked about my colonoscopy and I just said "my colon was clear!" (my parents were literally soooo excited, my mom wanted to take me for a pedicure to celebrate, it was ridiculous), but I chose to leave out that he spotted 2 fistulae because I don't want to worry him over something like that and really, I don't feel like talking about my butt with my father.

It's a personal choice and no right or wrong way to go about this.
Posted 6/28/2015 8:29 PM (GMT 0)
I was diagnosed when I was a kid.
At that time, my father sent out an email telling people about my diagnosis and asking for help.
I was so embarassed!
I told him that he didn't have the right to do that, even if he had good reasons.
After I got over my initial attack, my father told people I was fine and that I was misdiagnosed. That's part of the reason why I ignored it for so long. He never wanted to admit that I had an illness. As a family, we treated it as a sensitive stomach issue, not as a disease.
This ended up being very dangerous to me. I got abscesses and a fistula; tons of procedure were done and I almost gave up on living completely.
You don't have to advertise your disease, but at the same time, you shouldn't feel ashamed. In my opinion, this leads to a dismissal of the severity of your condition, which, as you can see, never leads to anything good.
I started remicade and got healthier. I ran a half marathon to raise money for CCFA. I tell people on facebook when I'm having a colonoscopy and getting my remicade.
Why?
Because I know that there's a person out there suffering in silence and I want them to know that I am here. I've had friends and family members on fb ask for info and help for their friends. When my grandma was diagnosed with Colon cancer and a RV fistula, my mom called me first to get information and a treatment plan.
At the same time, I'm insanely private about my own fistula. It almost cost me my relationship. I never wanted to tell him or any sexual partner, but he figured it out on his own and he refused to let that come between us.
You have an illness and the sooner you accept that, the better off you will be.
Posted 6/28/2015 11:30 PM (GMT 0)
I used to not say anything about my crohns. Then I got sick and hospitalized where I work so my close friends, family and a few coworkers knew. Fast forward to last year and I had major surgery with complications and more ppl knew. I don't broadcast my illness but I don't hide from it either. Sometimes I view it as a teaching experience. Just cause I look fine, I'm not. If me sharing that I had crohns helps someone be a little more compassionate to someone else then good.

Crohns is a sucky illness and can have many problems with it. I find it easier to be upfront about stuff then come up with a different reason. And really, if someone isn't close to you, simply saying I have crohns may be enough and they aren't going to push the issue. I do kinda agree with Myrne in that with my family I downplay how sick I am sometimes. My husband obviously knows everything but I don't want to worry my parents. Maybe sometimes I downplay it to them because I want to believe too that I'm not sick.

Try and find a support system and that will help you through some of the hard times, it's hard dealing with things alone. Best of luck to you.
Posted 6/29/2015 1:37 AM (GMT 0)
I agree, it is a personal choice and we're all different in how we think and feel...I find with my family if I don't talk about it to some degree they will just assume I'm all better and then have expectations, but if I then tell them after they put an expectation on me, that I'm not feeling comfortable enough to meet their expectations then I'm faking it cuz I haven't said anything in regards to how I'm feeling...sometimes your just darned no matter what.
Posted 6/29/2015 1:31 PM (GMT 0)
Only my family and very close friends know. I am private and don't share my issues openly.
Posted 6/29/2015 2:27 PM (GMT 0)
I guess most people are lucky to have families who care about them, but I have the sort of family who couldn't care less about anyone except themselves. Thus there was absolutely no need to keep my Crohn's secret because nobody cared anyway.
Posted 6/29/2015 2:39 PM (GMT 0)
I am very open about my stomach issues. I talk about poop with all my close friends because it's a huge part of my life & I'd like them to better understand what I'm going through. I don't tell them every gross detail, but I do tell quite a bit.
The only thing that bothers me is when someone else tells people about it. I know and trust my friends, but it makes me very uncomfortable when someone talks about it in front of people I don't really know that well and said person begins to ask all the questions and feel sorry for me when I don't want that. It just seems like an invasion of privacy if I'm not the one telling someone about it.
Posted 6/29/2015 6:00 PM (GMT 0)
I tell people who need to know. I don't want to be defined by A disease ... All my friends know mainly because there has nearly always been an event I have missed etc due to illness or they hear I'm back in hospital. The level of detail varies depending on how close they are.

As a society we are anal about talking about so many basic functions. That I feel is wrong. I am quite happy to talk openly in the right situation.

The bizarre thing is that I am so embarrassed to actually use a loo when friends are around I go to extreme lengths. Once at a party I even drove home to go to loo and returned after.

So I'm happy with the talking to others - just not the doing when others are around. Slightly hypocritical I feel but there you go. We are all a bit weird in one way or another.
Posted 6/30/2015 6:35 PM (GMT 0)
I tell others I have Crohn's. Doesn't bother me, I think we need to get more awareness out there. Not that I go on some educational broadcast. But I don't go about hiding it or making up something else. If they are childish enough to think it's just about "poop" then that's their problem.
Posted 7/3/2015 12:45 PM (GMT 0)
Most people who know me, know I have Crohns, and, it's pretty hard to hide the fact your running to the bathroom all the time, you feel like crap, and just want to go lie down somewhere. Add a bad case of Fibromyalgia and arthritis and you look good to others, so what are you complaining about! You were dealt a bad hand, like the rest of us, and at 61, I been here awhile longer than you so this is my advise. Don't let the illness control you. Get it under control as fast as you can, and you can manage a better life. It's not your fault, so don't let it own you.
Posted 7/3/2015 1:13 PM (GMT 0)
I have told everyone including my 1600 facebook friends. I believe in awareness. It is much easier now that I have my crohns under control. After 11 years of liquid stool, finally I have been having formed stool once again once or twice a day. I had to find my own way to control my crohns but thankfully now am pain free and according to my recent colonoscopy disease free.

I have done the following. Align Probiotics, CBD, Eat 4 lychee a day, avoid yogart (this happened by accident but definitely made a big improvement), drink lots of water. If stool changes I increase the above until stool returns to normal.
Posted 7/6/2015 8:45 PM (GMT 0)
I explained my disease zillion of times to my mum and sisters but it's only my mum who feels sorry for me. One of my sisters has got IBS and has a conviction that all my symptoms boil down to IBS. It's true that on top of my Crohn's I have IBS but it had been only IBS.
As for my friends, they know I have problems with my GI tract and frequent d. They always give me the choice to select the restaurant or cafe that offers safe food for me if we want to hang out.
Once a friend asked me to explain to her my disease. I did but she did not seem to get it.
I don't have a problem in telling people I'm a Crohnie but they won't figure it out.
Posted 7/6/2015 9:15 PM (GMT 0)
I'm more embarrassed by being on disability than having Crohn's. No one ever asks about your poop when making small talk. But "What do you do for a living?" is smalltalk 101. I usually tell people about my Crohn's if only to make the egregious crime of not having a job seem more understandable.
Posted 7/7/2015 7:06 PM (GMT 0)
It's impossible to hide when you're in the hospital multiple times for long periods, have surgery, drop a quarter of your body weight, lose most of your hair, swell up from prednisone, walk like a 90 year old, use a cane, carry a pharmacy around in your purse.......not to mention all those trips to the restroom.

I'm not ashamed of what I have. I try to make a point of educating those who ask that Crohn's is a debilitating disease, not a butt of a joke about "pooping". I want people to understand the seriousness of this disease.

I guess I'm fortunate in the sense that my extended family has never treated me like it's no big deal since I nearly died of sepsis from it at one point. Now I have other family members who've been diagnosed with it.

But do most people care? Of course not. They have their own worries.

Post Edited (JaSanne) : 7/7/2015 1:10:33 PM (GMT-6)

Posted 7/8/2015 6:04 PM (GMT 0)
My Crohn's is very definintive in who I am, and almost everyone I meet for more than a day will know I have it.

In part this is because society and social interaction is defined so heavily by FOOD.
I frequently have people offering me food and I have to decline and they want to know why.

I've also made pursuit of alternate therapies a passion of mine, it's one of my driving forces in life, and I'm proud of what I've learned and how it has improved my health.

I want people that I plan to keep around to feel comfortable with my condition. I encourage them to joke about how I can't eat certain foods, or how I'm insane for using myself as a guinea pig.

I have enough darkness in my life from this disease and I don't want that to reflect in who I am and how I interact with others.
Posted 7/9/2015 7:41 PM (GMT 0)
It is better not, people do not respect weak people, this is part of human nature unfortunately
Posted 7/10/2015 3:02 AM (GMT 0)
I don't tell anyone. unfortunately my significant other's family found out and they all tell each other everything so whenever i have a flare up his extended family sends me cards and get well text messages. This is precisely why i don't share this stuff with people, i don't want people talking about my problems as a main part of their conversation. It's really not appropriate, nor is it necessary or beneficial to anyone involved. I don't get it. it's not an exciting topic but i guess people love to talk about someone's miserable health, haha. Maybe people really have nothing else to discuss. Point being, only bad things have come from telling people in my case. I wish the few people who know, didn't know.
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