My tip is to learn the difference between your period cramps and the symptoms of your UC or Crohn's. Record your systems so you can soon tell which is which and it'll help you learn when your period is. Also watch what you eat and learn what you can or cannot eat. Certain foods help and others hurt.
Surgery is a scary thing, but sometimes it's what you need. Talk with your GI, nurses, family, and other patients who have gone through the same surgery youre about to face. Gathering information and hearing other people's experiences can help you to feel more confident in your decision. Remember, it isn't the end of the world! The grass very well may be greener on the other side! (Shared by CCFA's National Youth Leadership Council)
If your stomach hurts really bad at school and you're embarrassed to use the school's public restroom, use the nurse's restroom! Tell them what's going on and they'll understand. If anyone asks where you were, instead of saying "in the restroom," say "in the nurse's office because I felt sick." Or you could have an arrangement set up with the nurse, where you can use their restroom whenever you want. That's what I do!
Protect yourself from the stress that can make your illness worse. Some days you may be feeling super sensitive and not in the mood to say anything. If you've kind of had it with the dumb questions, it's OK to walk away and save yourself the headache.
For most of us, there are two basic approaches to reacting. One, or a combination of both, might be right for you:
1) Be honest and straightforward about it. State the facts as you choose to, and be done with it.
2) Be jokey and funny about it. If you can, think up a few standard "comebacks" that will make you feel like you haven't revealed too much.
As you grow more comfortable with your illness, you may be more comfortable with talking about it, too. For instance, in the beginning you couldn't bear to talk about getting a colonoscopy, but now that you've had a couple you realize it's nothing to be embarrassed about. You can take the lead and let people know if something's no longer off-limits by talking openly about it. You might even encourage them to ask you questions.
How to begin. Sometimes just acknowledging how you're feeling is a good beginning. For instance, you can say: "It's scary for me to tell you this," or "There's something I want you to know about me." Being honest keeps it real. Once you begin, speak from your heart. Stating the facts is always a good way to get the information across. Leave some space for your friend to ask questions, to see if they understand. And try to keep it light even though it's a serious topic, being overly dramatic and super serious tends to freak people out. Above all, remember that YOU WILL SURVIVE THIS CONVERSATION.
Gossip and rumors hurt, and some people are more sensitive than others. It's hard to not care when it's your life they're talking about, so if you feel hurt, allow yourself to be hurt instead of pretending that you're not. Talking to someone -- a friend, a parent, or even a school counselor -- can help you let it go. The sting won't last if you don't let it.
If you don't want to tell your friends about your IBD face-to-face but still want them to know, you could express yourself through writing. Sometimes people find that writing a letter or email makes it easier to say what they want to say. You may even choose to direct them to a Crohn's & Colitis website so that they can find out information on their own. Whatever you choose to do is fine--it's a personal decision!
Try to have a sense of humor about it. If you talk about your disease in a lighthearted way and are able to joke about some of the hassles, you open the door for others to laugh with you, rather than feel sorry for you.