I can't say Crohns + me= BFF now. But what I can say is that I am a great place with it; I've learned to roll with it, accept it, and maybe (just maybe) sometimes see the bright side of it. But this has been years in the making. So in an effort to help the newbies along I figured I'd share what helped me/worked for me and made this unwelcome news of "hey you have Crohn's" a little easier to manage.
1. Find a doctor you connect with and trust. This is key... 100% crucial. When I was first diagnosed I was seeing a doctor that I
Finally after trying out a few new doctors I stumbled upon the amazing gastro that I am lucky to call my doctor now. He spends time in the room (as long as I want in fact) answering any ridiculous questions I have (which is usually far too many for any one person). He is funny and relatable, which makes it easy to want to go see him and build a relationship with him. He does not over prescribe medications (my feelings on that will be a post for another day). If anything, he puts me on as few meds as possible. I think he may get my whole "I hate meds, keep them away" ideology. Instead he focuses on total care... we talk about nutrition, vitamins, emotional wellbeing, etc. More than anything, he truly, genuinely cares about me and my wellbeing. He has demonstrated that to me time and time again (I could give you a whole list of these stories) through his patience, concern when I'm not taking care of myself (oh yes he calls me out)... he even has me in between appointments to check my weight. He has gone above and beyond.... and I, for one, think everyone deserves the same for their doctor. Having that relationship where you feel comfortable discussing anything and everything regarding your body, mind, and health when it comes to Crohn's is essential.
2. Build a support network. Crohn's is tough to navigate at times. Having people to whine and vent to when it's at its roughest can make the entire situation seem so much better. As much as Crohn's is a physical disease, I believe it is a psychological/emotional one as well. When I am in a positive, "I can do this" state of mind Crohn's rarely comes out to play. However, when I become a negative Nancy Crohn's comes back in full force. Obviously I can't speak for everyone when it comes to that but I truly believe developing and maintaining a positive state of mind is necessary to feel well. But good news is... you don't have to do this alone. Relying on people who love you to be there for you when you need to vent, cry, or get cheered up by watching Billy Madison and laughing your face off (or is that one just me?) can help significantly. It may not (but it could) make the physical symptoms/pain go away but it certainly will help turn that frown upside down. Crohn's is shitty enough ( <---- pun. I'm so ridiculously cheesy I know) without it impacting your mood too.
3. Figure out what foods are "no-no" foods. I would suggest reading up on the elimination diet and alwaysss consulting with your doctor. Keep a food diary and start to pay attention to when you are experiencing more pain/diarrhea/nausea, etc. A pattern of which foods aggravate you will hopefully emerge. Knowing what foods don't agree with your body can help decrease symptoms.. sometimes by a lot. It's not the end all, be all but eliminating foods that seem to worsen symptoms can really make a difference in your overall wellbeing. Sometimes it sucks to give up the foods you love most (oh hey raw veggies, Mexican food, and milk chocolate) but feeling better is well worth the small sacrifice. I have found that I don't even miss or crave the foods that used to bother me. I now associate them with not feeling well and they have lost their luster. I instead focus on fun new recipes and enjoying foods that are going to fuel me and make me feel better (hey Mel, say hello to ground turkey, cooked veggies, and peanut butter. Don't ask I have no idea why these 3 work for me).
4. Develop your own mantra. Someone said to me pretty early on to remember that I am the one who HAS Crohn's; Crohn's is not the one who has me. I have the control and power over what I do to help myself deal with it. And that stuck with me. It quickly became my mantra of "I have Crohn's, Crohn's does NOT have me". I may not be able to control when I feel sick or when I flare but I can control what foods I eat, how I feel emotionally, and what medications I use (along with my dr's help). Taking back the power is what it's all about with me and my mantra fits that. Figure out what works for you to empower you and makes you feel strong and in control; and develop your own mantra around that.
5. Advocate for yourself. This was by far the most difficult part for me, especially as a teenager. I was embarassed about anyone knowing that I was sick. I liked people knowing me as the athlete and honors student and did not want people's image of me to change. I also didn't want them to feel sorry for me or see me as "gross." As I began to accept it myself, I realized that people around me would too. It's a confidence thing and it takes time. But as you start to feel comfortable with your diagnosis and what's going on in your body, you'll start to realize that people are not going to judge you or think less of you. And anyone who will isn't worth your time anyway. I have discovered that as I have opened up to teachers, college professors, employers, family members, friends, and peers that 99% want to understand what Crohn's is and then they just want to offer their support in anyway that they can. Support is much different than pity and it took me time to realize that. Sometimes I would be sick and a professor would give me an excused absence from class or an extension on a paper. So be it, they are doing it to make my life easier and help me to focus on my health and recovery. I don't think I ever felt like a single one thought less of me because of it. If anything, I have found that people who I have told think even more of me. Many have mentioned that they are impressed with my ability to manage work, college, and activities with an illness. People may surprise you. If you don't speak up and advocate for yourself, who will?
6. Never underestimate the power of a little "me" time. I have found that spending an hour or two with just little ol' me can do wonders when I am at my weakest moments. It's wonderful to have friends and family be there for you when you need it, but there is something soothing and peaceful about spending a couple hours alone focusing on yourself. This time could be spent doing just about anything that makes you feel happy and whole.... running, journaling, taking a bath, watching a funny movie, walking the dog (okay so then technically you aren't alone but... you get the point). The best part is you get to decide and pick whatever you want. Spending those couple hours unwinding, destressing, and putting my smile back on is sometimes exactly what I need.
Getting Crohn's at any age, especially when you're young is no easy road to navigate. It's going to be filled with bumps and rainy days but figuring out what "works for you" can certainly lead to some smooth roads and sunny skies in the future ( <--- aww told ya I was cheesy).
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