Explanations to others on having Crohn's Disease or IBD.

[Cara Fusinato]

Apparently, I like asking poll-type questions . . . Here goes . . .

When you are chatting with someone new to you and it becomes necessary to mention the illness (due to food or r.room scenarios or if health comes up, etc.), what do you say. How do YOU describe your illness in polite company?

Mine usually goes like this . . . I have Crohn's Disease, it's one of the irritable bowel kinds of things. I have narrowings in about 18" of my small intestine and must be careful not to get anything stuck there. The other aspect is it's one of those immune-go-crazy dealies with my immune system attacking my intestines so it is an active illness that is possibly getting worse and worse by the day, month, year until that piece has to be removed because it finally closes off entirely. Yes, it's a not-fun type of chronic illness. There's a genetic link, so I can blame my dad's side of the family!

Then I usually mention how great I am doing on the mangosteen juice which often leads away from me to ills their friends, family, and self have.

That's my polite party talk . . . and occurs over and over. What's yours?

 

[Kossy]

I have Crohn's disease, I shit like crazy. I roid rage like mad so don't piss me off... oh and do you have any two ply soft TP for my bunghole??!?!?!

Well I kind of paraphrased what I say.

I normally just say I that I have Crohn's disease and which means my digestive system is screwed up and I might disappear to the bathroom but don't worry I'll be back.

 

[Jeff D.]

I say I have Crohn's Disease and that it is a disease that messes up my intestine.

 

[Valentina]

I say I have crohns, and if they make "that 'huh' face". I give a few more details.. Inflamatory bowel disease.. hurts, get cramps, lots of blood, run to the toilet all day.. then they give the other face and I shut up

 

[Kev]

IF someone asks, I tell them I have Crohns... Like, do diabetics explain diabetes? IF they need to know more, then it depends.... Depends on how nice they ask, if I feel they are genuinely interested in me or the illness... Let me tell you a lil story. My youngest son was so tall at birth, he apparently didn't have enuff room in the womb. So he was born with his lil feet all twisted up. To correct that, the dr's broke his legs and kept him in casts for months. Everywhere we'd go, people would see this little fellow with these 2 enormouse casts, AND then have to know all the gory details. I got so tired of telling it, and so defensive (almost incensed) by reactions that one day, I was at the grocers (where the missus worked at the time) carrying my son in my arms, when I saw this sweet lil ole lady approaching. She took one look & said: 'Oh, the little darling, whatever is wrong with his little legs?" Something about what she said and the way she said it ignited the devil in me.. So with a broad grin, I said to her: "Yes, and the next time he's bad, I'll break his little arms too!" Well, goodnite effie... thought the lil ole lady was gonna stroke out on me. Anyway, I left it at that. But the missus heard about it. She didn't appreciate my sense of humour anyway!

So, if I'm asked the wrong way, by the wrong person, at just the rite time... welll, it's not a pretty site. Esp. if asked by an elderly noseyparker who doesn't know the difference between Crohns and crones...

 

[Cara Fusinato]

In the US, Kev, the lady would get your name or license plate or receipt or something and turn you in and you'd be investigated by child protective services. You can be innocent, of course, but people are just like that here. Try CALIFORNIA. Eeep!

I, personally, take pity on those who don't know and rather than tell them to look it up or give indelicate details, I came up with a quicky explanation that educates and explains. OK, so I was a teacher for 12 years, so sue me! Oh, right, I am American and that's going to happen sooner or later anyway, right?

Anyway, I just thought I'd have fun and find out what you say at dinner parties when you can't have the salad (going to one this weekend, matter of fact). Must be armed with my polite definition of a non-polite illness.

 

[mikeyarmo]

HAHA at Kev's story .

I usually will say I have something called Crohn's Disease. Then the person will usually say nothing, or ask what is that. There are a few that will answer with Oh My X had it (followed by some detail of either a horrible experience that person had with the disease or with a look on their face like they are an expert and know exactly what I am going through now because "their friend's brother" or someone like that had it. I have actually had the reaction twice in my life of "Oh, I have Colitis"). If asked I will say it is a disease that affects the digestive tract, specifically the intestines. Then usually there is the questions is there a cure. It is funny that this is probably one of the first questions that doctors get when they let a new patient know of their diagnosis. Anyways I respond no, but it is managable with medication to which the reply is oh, that is good.

I do not get overly bothered based on a person's reaction to my disease, and to whether or not they want to further question me about it. I understand that some people are embarrassed, some do not want to embarrass me, and some just do not care at all what anyone else in the world has to deal with . That is fine and I respect each person's choice.

I think it is harder on the person receiving the explanation than on me giving one. Usually it is obvious that the person is rather nervous and not sure what to say, especially when they hear there is no cure. When I say it is managable though, they usually go with the thats good comment, but some are obviously trying to ask or say more. Some even start saying something (probably asking another question) but they just do not know what to ask or maybe are too nervous to ask (or think they will embarrass me). It is not my goal to make others feel uncomfortable, so I will often change the subject or just say something along the lines of "the condition is not affecting me currently".

I also choose to say that it is managable with medication even though that is likely debatable (especially among those who are moving from med to med trying to find something to work) as I feel it makes others feel more comfortable to think that this disease is not a big deal and can be lived/dealt with. In truth I am able to do pretty much 100% of the same things as any other healthy person, so I do not think it is appropriate to give the impression that the disease is uncontrollable.

 

[Kate]

I just say that i have crohns disease and thats an auto immune difficency in the digestive track then give the symtoms but then say that not all of that applies to me so they are keeped guessing as to which ones i suffer

 

[Skinsfan1229]

I usually explain, "I have Crohns disease, its a chronic inflammation of the digestive tract that can affect you from the mouth to the anus, but most commonly the terminal illieum. I've had many surgeries, resectioning my intestines, and have had my colon removed. I've also had many different manifestations of it in other areas of my body."

ANND they still dont understand lol

 

[Kev]

Taking a lil stroll the other day, ran into a fellow who used to work for the same co. as I, but he left before I got ill. We didn't know each other that well at work, just a passing familiarity... you know? He knew of me as the 'chief computer geek' there, and asked how everything was there. I replied "Oh, I left the company" He asked me why.. I said "Well, I developed Crohns' He said "Is that a new computer game?"

True story.... Now, I can't get that image out of my sick mind... Think of it... What if a fellow reverse engineered 'asteroids'? (hmm, there's a name) Now, what you'd shoot and from where might be offensive to some, but I think it would be a hoot..

 

[mikeyarmo]

If only you were able to make some money and come rich from your Crohn's .

Is it a game? Only the most realistic one known to life!

 

[skeet]

On those rare occasions when I sense tht someone really wants to know, I tell them. Otherwise I just make a comment about tummy troubles or a digestive disorder. I spent all day Friday in a conference center. Lunch was buffet-style, build-your-own-sandwich line, with numerous side dishes. I didn't load up on raw veggies or the potato salad that was chock full of big hunks of raw onion, or the ptotato chips which appeared to be covered in oil. Six varieties of cookies, all with macadamia nuts, so I had to pass those also. The guy behind me in line commented that I must be a picky eater. I chose not to reply, but did give him a withering look. Some folks just aren't worth the trouble.