I realized that I send out a lot of specific/good information through reader emails that you guys never get to see. With permission of the sender, I’m going to start posting some of them for you all to read.
I like you a lot. Been reading your blog all night. I have had Crohn’s foreverrr. Like since I was 12. Now I’m 26. I have had SUCH a big problem talking about it to anyone except like health care professionals. Embarrassment is a huge thing, and besides that, I have just always studied and worked as a performer/musician/actor type. Google me and you’ll see. I have never wanted my disease to be “my thing”. You know? Like the thing that people associate with me.
I have done every drug imaginable. I kind of gave up on drugs 7 years ago and pursued alternate routes through diets, cleanses, body work, chinese medicine, accupuncture, environmental medicine, nutritional IVs, Ozone enemas haha EVERYTHING. I’ve done it all. By myself. I saw some improvements and I learned a lot. I still spend a lot of time really sick though. More than I’d like to admit to myself, and more than I ever admit to others. I have been a master at hiding and isolation.
Anyway, last week, I got called in for a follow up to a colonoscopy. I knew going into it, it wasn’t going to be good news. The polyp they extracted tested as pre cancerous. The gastro is recommending that I get a colectomy as a preventative measure. I have always known about it, but never let myself consider it. I am going through such a crazy range of emotions. Major fear, despair, anger, and hope. I decided right when I walked out of that doctors office, no matter what happened with the surgery and my health in the future I was not going to do this alone anymore. I was going to accept and seek support. SO that is what I have been doing. I have spoken and cried to my closest friends which feels really good every time. And I have spent a lot of time online reading blogs and watching you tube videos. I felt so incredibly comforted watching the video for The Great Bowel movement and listening to all you girls being interviewed. I have seriously felt like an alien for so long. I felt like anyone I saw at the clinic or came across online was so old, or such a bummer or not cool haha. I sooo relate to all your stories and it was just amazing to laugh at that stuff that has carried so much shame and been so nightmarish for me for so long. I literally couldn’t even say “I have Crohn’s disease”, let alone explain to people that I had problems with urgency and accidents.
I have so much more I’d love to talk about, but I just wanted to introduce myself and say I’m ready to be open about this, and you are inspiring me to do so. AND you are making me feel better about surgery. So thanks. And I hope we can be cyber budz.
ALLIE!!! This is the BEST email EVER!!.
Have you decided on the surgery just yet? While I’m sad you’re facing surgery, I think your decision to reach out is so fucking excellent. There are SO many amazing people out there in the world and on the internet, there is NO reason to be alone and scared.
Where do you live?
I would absolutely LOVE to talk to you more, or skype or whatever. But until then, I just wanted to say that surgery is scary. Its ok to be scared. But I will say that surgery was the BEST thing I ever did for myself. And thats no fucking joke. Its not a lie. Its not a thing I tell people to make them feel better. Its the truth. It wasn’t easy for me, and I had complications and pain. But in the end, I am SO glad I finally did it.
I also think that by starting to share your story, people get to really see you. What you may start to realize is how much you were hiding from people. Not just your Crohn’s and its details, but important things about YOU. IBD makes us hide a lot. I think you will actually find it really freeing to tell people. I think many people will see your strength and see you as Allie the performer….who also has Crohn’s. You don’t have to be the face of Crohn’s, you dont have to make it your life (like I did with my jpouch) but the reality is, it IS apart of you. Its not going away. Let it be apart of you. The more you pretend its not there, the more you start to hate and resent it. If you can just accept it you can learn to handle it. Thats some self help shit right there, but I’m telling you, its totally true.
Also…seriously…are you in therapy? How do you feel about it. I fucking love therapy…but because I’ve found chronic illness counselors. I’m telling you it really does wonders.
So I’m glad you decide to step out of your diseased butt closet! Welcome to the world!