Finally, as a seasoned IBD patient, I have the following advice to offer, as cheesy as some of it may sound:
- Don’t focus on what you can’t do because of your disease but instead busy yourself with what you can do.
- Tell as many people as you can about your situation. I know it’s really hard to tell your friends and you’re not sure how they’ll react, but as I got older I found that I could tell more of my friends, and when I did they were completely understanding and supportive. An added bonus: you can drag them along to the walk a thon and get them to raise money for CCFA. So basically, telling friends makes your life easier and can help raise money to find a cure.
- Listen to your doctors! Despite what you may think, they DO know more than you do and probably put you on a medication for good reason, so try really hard not to miss doses.
- Don’t give up; just keep fighting. I’m constantly on the lookout for new studies and drugs and will hopefully find one that works well and has few side effects.
Do everything you can to stay healthy, even it’s uncomfortable. Even if it means not eating your favorite food or having to get tests or not being able to eat dairy, just do anything you can to stay healthy, because being sick is a lot worse than doing that.
There may be rough times ahead, and sometimes it may seem like it’s hopeless, but it’s not. I thought it was hopeless and I would never get out of the hospital, but I did, and I’m so much better now. It’s made me stronger, and I feel better than ever. I would say to never lose hope; you should always hope for the best because you never know what will happen. It made me stronger on an emotional level. Ever since being in the hospital, I have been able to face challenges with more courage. I feel like I have a stronger attitude towards life. Sometimes I look at my Crohn’s as a test of my attitude and my abilities, and I just think that it made me stronger as a person.
What Crohn’s Has Given Me
I think it may be more obvious what Crohn’s can take away from you than what it can give you. It made me a better person. I feel so lucky that I’ve had this experience because it allows me to relate and really empathize with a whole group of people that I otherwise might not be able to relate to. Also, it’s become a part of my identity, and in that way it’s given me a lot because anything that becomes a part of your identity, for a good or bad reason, gives you something. I’m really grateful, because I’m happy with who I am, and so I’m grateful for everything that’s made me who I am, including Crohn’s, even if it has negative effects too.
Mostly, just know that as awful as it is, it will probably get better. Just don’t let it stop you and keep living your life. Realize that you do have limits but keep living your life the way you want and make sure that you are happy with the way you are. The big part is just not to let it define you but to incorporate it into you and make it a positive aspect of you. And do everything that you have always done before, but at the same time realize that you need to watch out for yourself a lot of the time too.
I would tell parents not to really treat your children differently. Try to treat them the same as before they were diagnosed, instead of maybe asking them to do a little less because of their illness or not to work as hard. I have a couple of friends who got injured or have some things wrong with them, and their parents just ease up on them very much, and are okay with the fact that they do poorly in some things or don’t try very hard.
Here is what I want to say to the parents: don’t baby your kids after you find out that they have IBD. They’ll get over it– keep telling them that but don’t keep on babying them. It’s a good thing for them to have fun in life, and not to be held back on stuff. Sometimes activities might make your stomach hurt, but just let it go for a little while. If it hurts too much, stop, but you should have fun during your life. And eventually try to have a mix of fun, rest, and all that stuff. Watch your diet, listen to what the doctors have to say, eat healthy foods, take your medications, and your symptoms will slowly start to decrease. But really, I want to emphasize that you shouldn’t baby your kids.
I think it’s important for parents not to push stuff on your child but to help them find resources. My mom found me a lot of resources but it’s always been up to me how much I want to use them. Try to find that balance– if she found something, I’d give it a try, and that was the understanding. If I didn’t like it, then fine. But they really let me have control. All of that has to do with age, I think. But mostly I would tell parents to really listen. And just like anything else, you just have to stick with your kid and understand that stuff can get hard.