Explaining perianal disease to friends/colleagues

[hannah-rose]

Hey everyone,

So most people know I have Crohn's or some sort of health condition, but I only go into the gory details with close friends and family.

Just now at work a woman asked me if I had IBD and then said she couldn't eat apple skins and do they affect me?

When I say I have Crohn's I always get asked if I have to watch what I eat, and I reply that I'm lucky in that my diet doesn't affect my condition, but sometimes I get frustrated that I can't convey to people that my Crohn's is serious, it's just different to most people's symptoms.

I feel like people look at me (usually stuffing my face with some delicious wheat/dairy product) and don't take me seriously when I tell them I have Crohn's, because I eat what I like and I'm a healthy weight and I'm not rushing to the toilet every ten minutes, but every time Humira day rolls round, or when I have to take my 6MP, or I go to the toilet and bleed and feel sore from my fissures, or feel like a swollen blimp from lactulose, I know it's real.

So my question is, how can I let people (such as new friends and colleagues) know that my illness is serious, but different to most, without going into too much detail?

Hannah x

 

[Samboi]

In Australia we have an expression - "died in the arse".
It means something that no longer works or that is irreparably broken.
I've started to tell people that my butt is the epitome of that expression.

 

[ForeverACrohn's]

I have trouble explaining the severity of my condition to people too. I'm scared to eat anything but thin soups and white bread in case of flares or it affecting my stricture, but according to a lot of people, the fact that i can still walk and talk means that I'm "not so bad".

A favorite of a lot of people is "well, at least it's not cancer", which is always great, as there's not really any response to that.

Think i might however start using the phrase "died in the arse". think it perfectly describes how i feel 90% of the time.

 

[hannah-rose]

Nice one Samboi, although I was hoping to get away without mentioning my butt directly lol. If you say 'tummy troubles', or inflammation in your intestines or something that sounds okay, but I feel like I can't say 'Oh well I have IBD which for me stands for inflammatory butt disease'.

 

[xX_LittleMissValentine_Xx]

I have basically the same problem!
I don't know really.... I don't know if there is an answer.
Maybe if you are in a bad mood/slightly irritated by the questions you could just say something like, Its hard for people to understand because I know I don't look ill, but its personal and I don't want to discuss it in detail.
That would definitely shut them up!
I can't think of a nice response right now though!
Sometimes I think its good to embarrass people by your answer though, while not looking embarrass yourself. It kinda hits home to them a bit more then.

 

[hannah-rose]

Yeah maybe I should work on a one-liner that just makes the other person feel very uncomfortable so they wont ask again haha. It's just annoying because sometimes I feel like I shouldn't complain because I don't have the same problems as everyone else, but I still have to take the same stupid meds and I still bleed and am in pain. Next time someone asks about my IBD I'll just stare them in the eye and be like 'trust me, you don't wana KNOW' and stare at them till they freak out lol.

 

[AinA]

A favorite of a lot of people is "well, at least it's not cancer", which is always great, as there's not really any response to that.

I know this is going to sound horrible, but to those cancer comments I say,
"Unfortunately I don't get the chance at a cure or the relief of it all ending. I get to suffer in this horror for the rest of my life."

I'm pretty bad off. I have weeks at a time I can't get out of bed. I had to give up my work from home (bed really) job last year because between the puking and random swollen joints I couldn't manage. There were many times I was working whilst on the commode. (I did chat support for a major fruity computer store.)

When I do manage to get out it is very frustrating to be told how well I look. How do you politely say, "It feels like there's an electric knife on high in my rectum."?

I've been in a combo crohn's/lupus flare since the first of the year. I am kinda grumpy with pain, not the best time to present myself to a new group.

 

[soccermom081105]

Unfortunately this disease can take on several evil heads and not hit the someway as it does to someone else you know. I go through bouts that I suddenly have to run and pray that I make it to the bathroom.. I have a change of clothes in my desk drawer and bring my cell phone in the bathroom with me just in case. I have clothes in my truck and have resorted to carrying a change of underwear in my purse

 

[nogutsnoglory]

You can just say that a lot of it is invisible to others but it involves a lot of pain and sometimes nasty things like blood. I think most people don't know much or anything about IBD so I doubt they are judging you or counting your bathroom visits or what you eat.

 

[AinA]

Unfortunately this disease can take on several evil heads and not hit the someway as it does to someone else you know. I go through bouts that I suddenly have to run and pray that I make it to the bathroom.. I have a change of clothes in my desk drawer and bring my cell phone in the bathroom with me just in case. I have clothes in my truck and have resorted to carrying a change of underwear in my purse

Oh my goodness! Do you phone a co-worker to bring your clothes? You are so strong!

In all these years my incontinence is the one thing I am so ashamed of and I know it's stupid. I am totally compassionate for everyone else but for some reason I can't allow myself that, even with my family when it's so obvious. Now that I type this it is almost comical this giant elephant in the middle of the room I've created.

I am very impressed you carry on and beat this stupid disease. Very impressed.

 

[Samboi]

I have a bag of spare clothes in my car boot.
Last year I had to deliver a class with poop on my jeans - I pretended it was soup I spilled on myself and got away with it.
Never again!!!

 

[Astra]

Hiya Hannah

I say 'I've got Crohn's, Google it!'
When peeps say 'You look so well tho', or 'should you be eating that?' I say...
'I'm sorry, but you've mistaken me for someone who gives a ****!'
Hannah don't justify yourself to anyone, if they're bothered, they educate themselves, and remember... people who mind, don't matter, and people who matter, don't mind.
xxx

 

[UnXmas]

My experiences have been a bit different, because much of the time I look very sick. This is mainly because I have so much trouble maintaining weight. However, anyone who doesn't know about my illness assumes I'm anorexic. People just seem to be so much more familiar with anorexia than IBD, and since I'm female and got ill in my teens, now in my twenties, I'm the right demographics for anorexia.

Sometimes I think it would be so much easier if I looked healthy. Strangers have shouted "anorexic" at me on the street more than once, and two people (strangers) have also come up to me and asked if I'm anorexic. When I was in hospital one time, I came out of the bathroom where I'd just changed into my pyjamas. Because they keep the hospital ward so warm, I just had a little strappy sleeveless pyjama top on. A couple of patients on the ward, seeing me without the jumper and tracksuit bottoms I'd been wearing earlier, literally gasped and said "what is wrong with you?"

If I don't join in eating because I'm not feeling well, people always assume anorexia too. I guess I can't blame them, because I really don't eat that much. But when I am feeling well enough and eat with people who don't know my illness, they see that I'm perfectly happy eating junk food, even if only in small quantities, and this seems to baffle them because it doesn't sit with the stereotype of anorexia.

But I can't really complain. I don't like the fact that people assume I'm anorexic, because the stereotype they associate me with is someone who's vain and image-focussed and anti-junk food. I know that anorexia is far more complex than that, but I think that's the image uninformed people think of and what they're assuming I am like, which is the opposite of my real nature in many ways. But I think overweight people get a much harder time of it than I do for being underweight. To be honest, looking perfect is not my priority anymore! I don't care about looking so sickly and skinny nearly as much as wishing I could just feel physically comfortable.

The only time I was really upset by comments was a time when my weight was healthy again, having been very underweight shortly before. I was able to eat more, and I was a normal weight again, but I'd just acquired the symptom of bowel incontinence. I actually think it might have been eating more that brought this symptom on - my digestive system is always better when I eat less.

But then everyone started commenting on how "well" I was. The contrast between a few months before obviously struck people. But on the inside I was going through this trauma of having to adjust to being a teenager losing bowel control. When I'd been underweight, my parents had tried to wrap me in cotton wool, trying to stop me doing PE lessons and sports and things. And now they were trying to encourage me to do more, and got frustrated with me for saying I wasn't well enough, because they were going by my appearance. Even after I finally got the courage to tell my parents my new problem, they were not anywhere near as concerned about it as they had been about my being underweight.

In all these years my incontinence is the one thing I am so ashamed of and I know it's stupid. I am totally compassionate for everyone else but for some reason I can't allow myself that, even with my family when it's so obvious. Now that I type this it is almost comical this giant elephant in the middle of the room I've created.

I know what you mean. I've kind of come to terms with incontinence now. I don't worry about it around my family anyway. But in any kind of formal situation, I still have worries despite not caring about it nearly as much as I used to do.

 

[tsm1110]

in my opinion most people really don't understand what we go through on a daily basis unless they too have to live with Crohns. As for me i can usually tell if i am going to have a bad day.You just get that overwhelming feeling that somethings not right.Its hard to explain to others but i think everyone on this forum knows what i mean. Maybe our wives/husband, girlfriends/boyfriends have a better idea of what we go through as they see it everyday.For us we can have some good days and some very bad days.Even my surgeon seems baffled as too why my GI wants to keep me on my meds after i had a resection.That amazed me as i would think he would have a better understanding of this disease.But as all of us on here know that surgery is not a cure but really just another way of managing this disease.