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.