Embarrassing bodies...

[Sufferer2002]

I think we'll all agree, Crohn's Disease isn't the easiest thing to try and explain gracefully to someone. Was just wondering, what you say to people when you're a little embarrassed to explain fully what it's all about. New Partner's must be the worst one - if you hope to stay with this new person for a considerable amount of time or longer, then it's not something you can keep from them.

Let's share our stories on how we tell people.

When I met my Husband, I printed something from the internet which explained about Crohn's rather than me do it... coward I know!

As for other people I usually say it's a permanent, non contagious disease of the bowel and intestine - I don't want to use the 'D' word so I use the word bowel in the hope they put two and two together!

Such a coward and not afraid to admit it :ylol:

 

[Sufferer2002]

I know a guy who has Colitis - and his Wife has Crohns. No explaining there then! I can't work out if it's a lucky or a double unlucky situation!

 

[ameslouise]

When I met my husband, we were both attending a wedding of mutual friends. At the time I was dx with UC. Levi saw me taking my pills after a meal and asked what I was taking and why. Didn't seem to phase him them and still doesn't to this day.

I got me a keeper!

Re-dx with Crohns in June 2009 and that was a tough one to break to my parents. Luckily (or not) my brother spilled the beans before I could figure out a way to tell them. I knew they'd be crushed -they had already seen me through what they thought was the worst...

 

[Cat-a-Tonic]

I'm not fully diagnosed yet, so most of my acquaintances who know I've been ill just know generic stuff like I've got tummy troubles. Most of my co-workers know that I've been unwell and have been having tests, but that's about all they know. Some people don't even know that I'm ill at all - one of the few upsides of this illness is that it's pretty easy to outwardly hide the fact that you're sick. One my best friends has Crohn's so she totally knows what I go through, no need to explain anything there! I also have a co-worker who has UC and I tell him a lot too, so pretty much the only people who get the "full" story (besides people like my hubby) are others who have IBD.

 

[Jer's Girl]

I usually tell people who I don’t really want to get into it with that it’s a little bit like having the flu all of the time, so I don’t have to say the D word, or get into it too much. For people that actually care, I’ll go into the specifics a bit more.

When I first met my husband, I kind of just slipped it in like, “Oh by the way I have a disease, but it’s no big deal. It doesn’t really affect my life.” He found out pretty quickly on his own that that was a lie. Good thing it never bothered him.

Now we talk about EVERYTHING! He loves talking about pooping with me, which is pretty funny. The first time I had a real poop after my second surgery, I came right out and told him and he was like, “Aww honey! That’s so great!” And we hugged. Haha! Then we had a song that went, “Look who can poop again! Look who can poop again! It’s you!” We always manage to have a great time, no matter how sick I am. We even made the best of all of the times I was in the hospital last year. I couldn’t have that with someone who I couldn’t be honest with and talk about this stuff with.

This disease used to be so embarrassing to me, I could hardly stand it. I think it was a lot creepier for people when I was all secretive about it. It’s not like we can really hide that there is something wrong with us forever! Now that I am an adult, I really have no shame, and life has gotten a million times better. I will talk about anything, as long as someone actually wants to know because they care about me, not just because they are curious.

I was also really open when I had my ostomy with family, friends and co-workers. No one seemed fazed by it, and if they were, who cares? Not my problem. I figured if it made people uncomfortable, that was really their problem, not mine. I save shame for things I do wrong, not things that I can’t help. My life is a lot better now that I have adopted that attitude.

 

[Jer's Girl]

It was pretty hard telling my husband I might need an Ostomy, and then explaining to him what that was. When I finally did have to get one though, it was much harder for me emotionally then him. All he saw was a healthier wife so he was happy! In the end, the people who love you will try to understand if you give them the chance. If you keep everything shrouded in mystery, it is no wonder they don’t quite “get it” when you say you are sick, especially if you look well.

 

[Misty-Eyed]

I don't know to be honest. I'm REALLY open about my crohn's. There's hardly anyone in my life that doesn't know I have it.

If it comes up in conversation some how I'll tell them I have Crohn's disease and then if they ask me what it is, I'll quite happily tell them. I've also told most people that I might end up with an ostmy soon. Not really had a bad reaction, most people just feel sorry for me.

If I act like it's not a big deal, they don't take it as a big deal. If they don't like it then it's no big loss not having them in my life.

 

[RFarmer]

haha. I just got out of a seton placement surgery. However, it turned out more complicated, and I had to stay in bed for a little. Whenever anyone asks what I had done for surgery, I just tell them I got a new piercing. It's red! Atleast, I think it's red... That could just be juices.

 

[NicoleKS]

I just say it's an inflammatory bowel disease then I tell them to Google it. Hehehehe. Talking about diarrhea is embarrassing!!

 

[LadyVik]

I was with my ex when I was diagnosed so he went through the whole process with me, then he got diagnosed with "suspected UC" but wouldn't go back for a camera so you would think he would understand when I am ill... WRONG! He never did, or still doesn't. We still talk now and again and he prefers to avoid me when I'm ill as he can't cope with me :/ Go figure! My Mum has Crohn's so my family were a lot easier at understanding, though my Gran did say to my Dad "Did Vicky catch it from her Mum?". Didn't make me or my Mum feel nice.
Friends are a different story. Being only 21, I did have a few good friends but the more I had/have flares, the more they disappear. Mainly because I can't do the normal teenage things like going out for meals/drinks etc...
I'm terrified of finding a new partner. The only other people I went with knew that I didn't work and new I was ill, but that was it and at the time I had little symptoms so it didn't bother me then.

 

[Keona]

I do the same. I will mention Crohn's or IBD and if they want to know more - they can google it or ask me questions.

 

[MapleLeafGirl]

Like Misty - I am pretty open about it. I find that more and more these days when I tell someone they already know what it is and know someone who has it. It is scary how many people are being diagnosed these days.

 

[ambermeghan]

My husband gets all the details. It doesn't bother me to talk about it, but that may be the nurse in me. If people seem interested then I will tell them more, otherwise they can make their own assumptions or google it. I do hide some things from my parents, only because it's been a rough year for them already.

 

[Sufferer2002]

It is scary how many people are being diagnosed these days.

I agree, nowadays it's becoming so common!

 

[Scifimom]

I was diagnosed during an appendectomy, I had to get 10 units of blood and flatlined twice during the surgery, my initial diagnosis was aggressive lymphoma. By the time crohns was confirmed my parents-my husband-my friends and my coleagues had been through so many emotions (At one time they thought I was going to die and then I was in a comma for three days) That everyone sighed with relief and I did not have to explaid anything to anyone. Now when I meet new people I usually say I have an autoimmune disease which affects the bowel and makes me visit the loo multiple times a day.

 

[Becky]

I was already married when diagnosised so I didnt have to worry about that. My friends and family are all very understanding so nothing to really be embarrased about. I have had stomach issues for years and they all knew about it. It was actually nice to have a reason for all of it!

 

[ameslouise]

I also tell everyone and anyone who asks or will listen about my Crohns, my recent surgery and my ostomy. I am not embarrased at all. I figure the more people know about it, the better it is to have all that awareness. And if I talk openly about my ostomy, other people won't be freaked or grossed out by it because I am not ashamed of it.

Who's with me - Ostomates Beauty Pagaent!!!

- Amy