What should family & friends know about loves ones Crohn’s?

Dear friends,

I used to post on the Lyme Disease Board last year. I'm doing better now but I just found out that my cousin has been diagnosed with Crohn's Disease for about a year.

I know what it's like to suffer with a long-term illness and deal with lack of understanding from family and friends. I would like to be better informed about my cousin's illness so I can offer her good support.

Please could you give me an idea of any good resources, articles or books that I can look at and get to know more about her illness?

What would you consider the most important thing for your family members to know about what you go through on a day to day basis?

Any help you can offer is greatly appreciated. Thank you so much!

Hello Grace,
I would direct people that want to know about Crohn's to this site.

https://www.ccfc.ca/english/info/diagnosed.html

Also to the right you will see Resources, you may want to browse our resources as there are book available.

Most of all like anyone who has just learned they have a chronic disease just let them talk about how they are feeling, if their in pain, whats going on with their body and you will learn as you they through this. Validate their feelings of fear and pain and be there for them.

Gentle hugs for you. You are truly doing the right thing in looking for ways to educate yourself and your family about this disease.

This is great information! Thanks so much all of you, keep it coming!

Oooh, I hadn't read that Spoon Theory before. That was great.

I want people to know the daily struggle of Crohn's. That just because I may look and feel and act GREAT one minute, I may be doubled over in pain and in the bathroom the next minute.

I want people to know how terribly alienating this illness can be. I mean, think about what usually happens when people get together as a family, as friends, as church members, as coworkers and even at funerals...WE EAT!! Many times, that's what brings people together - good food!!! But for the Crohnie, a get-together involving a healthy person's food (steak, burgers, fries, pizza, salads, chips, etc) can be a nightmare, particularly if we are in a flare period. We can spend a lot of time in the bathroom and a lot of time couped up in bed. This can be lonely, very lonely when everyone else is out doing their thing.
I want people to know that Crohn's doesn't JUST affect out gastrointestinal tract.

Because it's an auto-immune disease, having a Crohn's flare can set other things off as well that don't even remotely seem related to the intestines. For example, I get urinary tract infections a good bit. I also get awful mouth ulcers which makes it hard to talk. I take meds for stomach ulcers. During a really bad Crohn's flare, my feet get inflamed to the point that I can't drive or walk well. When I can't walk well, it makes it hard to get to the bathroom fast enough during that flare. Skin rashes, bursitis...I'm sure the list could go on with others experiences.

I want people to know that Crohnies have to often PLAN a road trip carefully. During a flare, I cannot travel. I may have a BM fit and 10 minutes later have another one. And have to go again 20 minutes later, or 5 minutes later. But even when I feel OK and DO travel, I bring an arsenal of stuff! The BEST toilet paper money can buy (Charmin Aloe + E is the BOMB!), my anti-diahreal syrup, Gas-X, prescription meds, plain crackers, washcloth, extra underwear...
I think you're AWESOME for wanting to understand Crohn's so you can understand your cousin better. That rocks!

The most important thing that I need friends and family to know about me having crohns is that I may need a toilet at a moments notice....and that alone is very hard on ones mentality/emotions.

I want my friends and family to understand that now means now. As PB4 said, needing a toilet at a moments notice is really hard but friends and family can do a lot to make it easier on you. My friends give me the aisle seat at the movies, my 6'5" husband gives me the aisle on an airplane (he is a saint), and just having one less obstacle to the restroom makes me breath easier. Also, I have had people quietly tell me where another bathroom is at a gathering, one that is more remote and private, without a line. That really helps too. Who wants to stink it up w/ all your friends waiting to get in? At a work function at the bosses house (his wife is a nurse and knows about my crohns) she pulled me aside and said, "everyone is using the downstairs bathroom but you are more than welcome to go upstairs if you want to). I really liked that.

The bold part is really important that friends and family understand. You are fine, right up until you're not. Then, you are *really not* fine. If your Crohnie friend/relative suddenly gets up from the dinner table at the restaurant, don't ask questions, and don't get uncomfortable. Also, if the Crohnie doesn't order anything at the restaurant, don't ask questions, and don't get uncomfortable. I'm forty years old, and my Mom still drives me nuts with this one. She *knows* I have Crohns, yet everytime we all go out to a restaurant for some big family occasion, she badgers me if I don't order food to the point where I have to just come out (in front of all the family and guests), and say something like "Mom, I have Crohns. I would like to spend this get together enjoying the company of our friends and family. Not reading a newspaper in the restroom. I'm not ordering food, ok?" Which usually results in a few red faces around the table.

The travel issue is big for me as far as hoping for understanding. It is nearly impossible to get into a car for the first 5 hours I am awake and not worry. And, it's no fun when you're worried. The bathroom at a moment's notice is important, too. It's embarrassing enough to have the disease, it helps to have someone not question if I jump up in the middle of a sentence. Sometimes, if I waited for the sentence/topic to end (so as to gracefully leave the conversation), it would lead to an even *more* embarrassing moment!

And, finally... yes, we hate having Crohn's, but it's important to know we have support and people to talk to about it. Thanks for asking this question. I wish everyone were as thoughtful as you!

I agree with everyone else, especially about feeling fine one minute and in terrible pain the next. It's very unpredictable. Also, that WE ARE NOT LAZY sometimes the crohns just makes us really tired. Also, for me the thing that used to get me is when i say i'm in pain, please just understand that i'm in pain, i don't necessarily want to discuss what kind of pain ( I often get abcesses on my bottom, that make me walk funny, and they'r rather embarassing) Most aspects of the crohns are rather embarassing.

O and last but not least i'm not sure if i over looked someone saying this already. EVERYONE'S CROHNS IS DIFFERENT. I can't tell you how angry i get when someone says to me that they know someone with crohns and they're not as sick as I am, or its all in your head or diet, or this medication will work or won't. Trust us, if it were up to us we wouldnt be sick. We would not fake our symptoms!

Ur a great person for trying to find out more info. I think your question was a great one. There was so much i wanted to write but didnt even have to b/c everybody else already has.