Identity Issues with IBD

Have you ever had an identity crisis? Have you ever had a hard time figuring out who you were or where you belonged? Have you ever had issues with self esteem or body image? If you are breathing right now then I would venture to guess the answer to at least one of these questions is a big fat YES!

Battling an illness like ulcerative colitis or crohn’s disease is about so much more than bathroom issues. It is so much more and one of the things that I think has been the brunt of a lot of my anxiety with this disease is the fact that I never really feel like myself for any sustained period of time.

IBD patients have to deal with unpleasant medication side effects from things like prednisone, flare ups that cause weight fluctuations, constant breaks in routines (ex exercising, going to school or work, seeing friends, or just feeling like a person/the person you used to be in general) surgeries that completely alter your body, the list is endless unfortunately.

There have been so many times over the past 13 years where my parents have asked me if there was anything they could do, or what I needed that would make me feel better and most of the time my response to them would be that I just wanted to look and feel like me again. I always thought I was in the minority when I would say things like this until I started talking to other IBD patients and realized how far from the truth that actually was.

The impact that inflammatory bowel disease has on a person depends on a lot of factors and I can only really speak for myself, other people who have reached out to me, and in general terms. However, there really is no denying that there is an identity component that plays a role in this disease. How could it not? Prior to my diagnosis, I was an athletic 120lb swimmer. Between the age of 13 and 26 I have gone from that to 150lbs due to disproportionate weight gain from prednisone, dropped down to 82lbs at my lowest, had my colon removed, a Jpouch, a temporary ileostomy, gained back a lot of the weight I had lost and therefore couldn’t fit into most of the clothes I was wearing for about five years, lost that again because of surgeries and flare ups, had five kock pouch surgeries, spent a total of 30 weeks with a tube in my stomach following those “procedures”, have had drains, tubes, pic lines, central lines, I truly could go on and on for another six paragraphs here.

“I just want to look and feel like me again” is something that I believe an IBD patient either thinks, feels, or says out loud at least one time during the course of their life. This has definitely been one of the harder things about this disease for me. I have really been able to understand and acknowledge that now and although I can’t honestly tell you that I care less, I will say that being open about it has made it a lot easier. It helps to talk about it and it helps to have people in your life who don’t care whether you look differently than you did a few months before for whatever reason. I think it comes down to needing to surround yourself with people who love you for you, and who understand what you are going through.

I have spent so long hiding and therefore, I felt so ashamed and embarrassed whenever I did look or feel a tiny bit different. Having so many wonderful people in my life who “get it” now has really helped me to become a much more secure person and to all of those people who have helped me get to where I am today – not fully there yet, but acknowledging these things at least, I really want to thank you from the bottom of my heart. I never ever imagined I would get to this place where I would be open about a topic that I have done everything possible to keep so buried.

  • Sara Ringer

    Are you joking! No one says these things? I think that IBD has been the easiest part about my life just like the time I ran barefoot across country on my lunch break yesterday. I always look and feel perfect and of course my weight never fluctuates! I love having tubes and drains coming out of me. It’s like having more limbs and I use them to train for my iron man competitions.

    xoxoxoxo Great post Rissy. All very true things and something the majority of us deal with. I know I feel this way all the time. Even more so when I am wishing to “look and feel like myself” I don’t even know what that is anymore.

    • val0525

      Bravo, Marisa.

      You are you, are because of the things you have experienced along your journey.

      I am so glad that you are where you are today and I know the future is bright for you, no matter what bumps or crevices are in the way.

      I am amazed at how much you have grown since I first met you.

  • A Guy With Crohn’s

    How can I disagree with Sara…I think we all love everything that comes with IBD :)

    Seriously though, just know that no matter what ever happens, you are still you. Sometimes I have to remind myself that. There are days when I get so depressed and shut the world out and I have to remember that it is all part of a disease but I am still me and must continue to be me. Nothing will ever beat me…and I can tell that with all that you have gone through….nothing will beat you. You are a strong determined woman and an inspiration to many. Your life might have gone on a different path from where you wanted it to go, but you are still you. Just remember that next time you look in the mirror.

  • Sherri

    Boy do you have smart friends..:)! I echo their comments and will add one of my own…while you have changed dramatically on the outside over the course of this horrific disease, the deep down, true essence of who you are as a person has always and will always be there…the smart, beautiful, compassionate, dog loving, fan of SATC, Friends, Meet the Parents, etc, etc, etc…that is my amazing GF, no matter what. Love you, always…that never changes either…<3

  • ibdartists

    thanks for posting this its really helpful! at the moment i’m trying to come to terms with having crohns and the effect its had on my life, its so difficult as i don’t know where crohn’s ends and i begin, I’ve life’ed for years putting up barriers and pushing people away because i was/am ashamed of who i am, perhaps more because of other things I’ve been through in my life, but crohns/meds just tipped the balance and made it so difficult to deal with things. the more i hide the more i lose confidence and identity, i find the advocacy you guys do so helpful and have been wanting to write a blog but have a weird fear with been open on social media

    hope your well and thanks again for sharing.