Sebastian (塞巴斯蒂安) / 饒漢文 ([info]vorpal) wrote in [info]we_got_guts,
2009-11-24 22:56:00
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Describing IBD

How do you describe your Crohn's / UC to other people to try to help them better understand what you are going through? How understanding in general do you find people to be?

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  • 25 comments

[info]hbpen

November 25 2009, 04:10:18 UTC 2 years ago

Depends on how well I know them & how specifically I'm trying to make them understand.

Generally, I tell people that Crohn's is an Inflammatory Bowel Disease, which means there's inflammation & ulceration in the bowel, but can really affect anywhere in the digestive process AND that it can even cause arthritis (which I have) & eye problems. I also usually tell them that I am usually ok, but I have times of flair where I'm basically debilitated & in bed from the pain.

[info]becauseicare

November 25 2009, 04:10:35 UTC 2 years ago

My boyfriend has Crohn's and when people ask me what his condition is like, I usually just tell them it's like having food poisoning x10 all day, every day... no breaks. That seems to be the most effective and relative in my experience.

[info]stephani673

November 25 2009, 04:20:32 UTC 2 years ago

This is what I say too.

[info]foamcore

November 25 2009, 05:26:37 UTC 2 years ago

I like that explaination a lot!

[info]inkseed

November 25 2009, 14:54:35 UTC 2 years ago

Yes, this exactly!

[info]becauseicare

November 25 2009, 14:56:37 UTC 2 years ago

I'm glad other people think that is a good description. I figure everyone has had food poisoning at least once in their life and it is never a walk through the park. I find myself acting like a total baby when I have it and after 5 years of dating someone with Crohn's, I still think to myself "Wow, so THIS is what it feels like... but WORSE."

[info]thebootyfaerie

November 26 2009, 14:31:34 UTC 2 years ago

Crohn's Disease is never needing to know if you have food poisoning!

[info]speedways

November 25 2009, 04:22:41 UTC 2 years ago

I don't go into detail unless I really know/trust/feel comfortable with the person I am explaining it to.

I usually say it's like having ulcers (comparable to canker sores) in my intestines. Because of this, I cannot absorb nutrients or calories correctly and thus lose a ton of weight and become fatigued. But this only happens when I am relapsing, because it can go into remission.

(I usually assume people can take from that the shitting part.. and I usually do not talk about the blood unless I really know the person, cause that's very personal and intense).

[info]temptedlady

November 25 2009, 04:30:03 UTC 2 years ago

I tell them I have ulcers in my colon.I tell them I feel tired most days and have a few real rough mornings a week. It can be real awkward because my ulcerations are actually in my rectum. It all seems awkward to me. Sometimes I just want to talk about it here and to my understanding family and friends who already know the history. I am going through a rough patch right now and waiting for the new meds to kick in. Lately I have been talking about it more then usual.
I think in general people may feel bad but don't have a heck of a lot of understanding.

[info]hbpen

November 25 2009, 04:32:49 UTC 2 years ago

"Sometimes I just want to talk about it here"

Please do! We all know how it is to need to talk to folks who GET IT!

[info]iluvrob20

November 25 2009, 04:35:43 UTC 2 years ago

most of the time people ask why i cant drink. and i mention that i basically have road rash in my intestines. and imagine the pain of poor whiskey on raw skin and then put that in your intestines.

[info]hbpen

November 25 2009, 04:39:42 UTC 2 years ago

I wish I had the will-power to keep the alcohol off of my raw skin... But it's TOO good!

[info]iluvrob20

November 25 2009, 04:41:23 UTC 2 years ago

i have emetephobia, basically an intense phobia of vomiting, so its mostly as a result of that. alcohol makes me feel crappy because of my UC and im terrified of throwing up, thereby, instant willpower.

That is not to say i don't miss it. A LOT. A LOT A LOT.

[info]foamcore

November 25 2009, 05:31:42 UTC 2 years ago

I never used to talk about it, ever. I was a closet case crohnie!

But, this summer I got so sick that everyone knew and I decided to not keep anything a secret. So, i went from being in the closet about everything to being pretty out in the open about having an ileostomy... and I must say I was and continue to be so so suprised at how much support and how little judgement I've received for it.

Now, don't get me wrong. Some people get freaked out when they find out, or look visibly horrified. And, it's still ahrd to deal with other people's hang ups, but i care less and less all the time.

When I want to keep it really simple for some reason I just say that I have an autoimmune disease where my body attacks my digestive system.

[info]jessypi

November 25 2009, 05:45:01 UTC 2 years ago

I have a lot of descriptions.

Anywhere from I'm allergic to myself to...I can't leave the bathroom.

[info]_x_rae_x_

November 25 2009, 05:59:21 UTC 2 years ago

Typically, I say that I have UC, ulcers in my colon. If they are receptive I elaborate by saying that it makes mornings rough, and sometimes I can't leave the house because of it. Anything beyond that is a case by case basis. I've been in a constant flare for a while, so sometimes I include that as well.

[info]yourlostgirl

November 25 2009, 07:35:00 UTC 2 years ago

I say its like have the stomach flu forever. That usually gets the point across pretty well. If they ask more questions I go into more detail, but usually pertaining to my joint pain and malnutrition because I'm still mortified by the bathroom aspect of it. Although, if I'm really trying to make a point I will admit to having not made it to the bathroom in time. That really drives it home for most people.

[info]0generator0

November 25 2009, 13:59:57 UTC 2 years ago

I'm a UCer. Since so many people have IBS, it is hard to find someone that doesn't have it or know someone with it. So I usually tell people it is like IBS x 10, with it also being an autoimmune condition. If they ask about autoimmune conditions, I usually explain that the body's natural defenses have gone haywire and attack healthy cells and organs.

For the most part I find people to be very understanding and empathic. They want to know what I'm going through, and to see if there is anything in their life they can relate to it. As for the people who react badly, I find it to be a good barometer to read if they belong in my life or not. I'm too old and too sick for drama and bullshit, so I appreciate getting the warning signs early so I can act appropriately.

[info]eve_dot_com

November 25 2009, 14:28:07 UTC 2 years ago

Usually I explain it as "my immune system attacks my GI system." To people I know better, I have described it has having food poisoning that doesn't go away, or that comes and goes.

[info]jonaswills

November 26 2009, 00:20:16 UTC 2 years ago

This is how I explain it too.... a lot of people understand how serious an auto-immune disease can be. Sometimes I'll also explain I don't have much energy at times because my intestines just can't absorb much due to the damage.

[info]spoon_o_doom

November 25 2009, 16:05:18 UTC 2 years ago

Short version: (which is all most people care to hear anyway) "It's like having a permanent case of the stomach flu."

[info]pandorasblog

November 25 2009, 19:51:19 UTC 2 years ago

I find that more people I tell these days have actually heard of it than was the case when I was first diagnosed. Most people seem to know someone with it or to have heard of it, to the point where I was actually flabbergasted to meet an auxhiliary nurse hadn't heard of it when I was in hospital in September.

I tell people some version of 'it's an auto-immune disease that attacks my digestive system, so I can't absorb my nutrients and calories properly and I have tube-feeding overnight to make up for that'. And like a lot of people here, if I'm going for emphasis I'll compare it to a stomach bug that never goes away. But mostly people tend to have heard of it enough that they can guess, or I assume they can guess, about the toilet stuff.

That said, it's amazing the power of the word 'bowel' - one day I was taking some donations round to a couple of local charity shops, and being a bit careful how I carried things, and I was asked if I was okay. In both cases, people were visibly startled when I said I'd had bowel surgery - not sure whether that's because it's something people associate with an older age group, or because we don't talk about bowels in polite conversation.... don't get me wrong, nobody was rude, it was just interesting...

[info]trabajaba

November 26 2009, 00:33:09 UTC 2 years ago

I oversimplify my UC and say that my colon had decided to eat itself and the pain varies between cramps and child birth. It's usually well-received with the right amount of sympathy and understand but not dipping into pity or disgust.

[info]sharkies_spot

November 26 2009, 21:53:48 UTC 2 years ago

UC here. Generally I give this explanation:

You know how people get stomach ulcers? Imagine having thousands of them all through your intestines. That's kinda what this is like.

Nobody questions after that, unless it's to ask why I'm avoiding a certain food, or why I'm not drinking. My general answer is "Because it will hurt." People seem to understand THAT pretty well.

[info]chrissym6

November 27 2009, 01:55:26 UTC 2 years ago

I have Crohn's and tend to either say something along the lines of my bowels hate me or that my immune system is hyperactive and attacks my large intestine. If people want to know more I usually tell them partiartlly becasue I promised myself i woulnd't hide it (or from it) when I was diagnosed back in 07 and partially becasue I am fascinated by the whole process so if someone gets me stated on the scientific aspect of it I can go on for days. If they want to know what it feels like I tell them either to imagine drinking fire, eating broken glass, or even occiasionally haveing a sunburn in your intestines. I tend to joke about it quite a bit becasue it seems to make people a bit more receptive to it (not to mention the fact that I've develoiped a whole new appreciation for the phrase 'shit happens'). Most people, even if they don't understand it tend to realize that I have o control over it and will work with me, if they don't than I just ignore them becasue its not worth dealing with it (most of them I find are the same people that call out from work everytime they sneeze or its the end of the world if they get a paper cut anyways).
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