How IBD changed my life... For the better.

Trigger warning: self-injury, suicidal thoughts, and angering hospital stories.

The best feeling in my life was the moment I came to terms with my disease and accepted that I was no longer the same person. Luckily for me, my diagnosis and the circumstances of how I was diagnosed changed me for the better. I won't say it was an easy journey, but it was liberating.


Anyone who knows me knows that I struggle with depression and social anxiety. I have for years. The depression and anxiety only became worse, and I turned to self-injury as a way to cope. I spent my high school years in treatment for severe depression and self-injury, which you can read more about here.


After I graduated, I had no goals, no direction, and no dreams in life. I was doing better than I had as a freshman in high school, but I had no ambition. A month after graduation, I noticed small amounts of blood in my suddenly loose stools. I was in pain all the time. I lost my appetite. I even soiled myself once or twice. For half a year, I lived like that. It stopped for a couple months, and I thought it was over. When it came back, it was much worse. I was going to the bathroom every fifteen minutes, not getting any sleep, throwing up all the time, and soiled myself in public so often that I lost count around the twenty-fifth time. This did wonders for my self-esteem. If I had had the energy to go out and live life, I wouldn't have wanted to. I was deeply ashamed of my body.


When I was diagnosed, my colon was nearly ready to burst. Prednisone (a steroid used to treat inflammation in the body) agitated my anxiety and depression symptoms. I started having violent, seizure-like panic attacks. I had the emergency response team rush into my room because I stopped breathing when I had a particularly bad attack.  I wanted to die: the pain in my guts and joints was so horrible, I told someone how I was feeling. I was then put on suicide watch, and the nurses started telling my family members that I was "crazy in the head". My doctor wouldn't let me have any pain medications, except the occasional Vicodin and a single Lidoderm patch a day, even though my pain team had already agreed that I needed much stronger medications more often. Every three days, a doctor would put me on another suicide watch, even though I was no longer suicidal. Very twisted, very unprofessional. I'll never let such an incompetent, cruel doctor ever treat me again. I have the right to be treated humanely and with respect.


As awful as my hospital experience was, it lit a fire inside me. I became angry. The anger wasn't good for my colitis, but it was good for my soul. I realized that I wasn't a bad person and I wasn't crazy, even if nurses told my family I was. I accepted that even if I had no control over my bowels or needed an ostomy bag, that didn't make me a disgusting person. That made me a very sick person with a medical condition. I recognized that I was a hurting, scared young woman, but self-injury was not a healthy way for me to cope with the sadness. I realized that I am worth so much more than a blade, a sadistic care team, and a handful of diagnosis's.


Determined to prove hospital staff wrong and show that I am a strong, independent woman who don't need no incompetent doctor, I began to fight back. I started playing with makeup. Gone was the Goth look I favored in high school. I just wanted to feel as girly as possible, and embrace my feminine side. I even occasionally wore pink. I was trying to find myself again. I found strength in myself that I didn't know I had.


Once, hospital staff in the psych ward refused to give me pain medications unless I came to the desk to ask for them. I was so weak after having lost forty pounds in one month and in so much pain, that I collapsed on the floor. I laid there for five minutes crying, because the fall hurt, my guts were littered with bleeding ulcers, I had to use the restroom, and no one noticed me lying there in the doorway. I tried calling out, but my voice was weak. My dad came visiting in the nick of time, chewed out the nursing team like I've never seen anyone do before, and then demanded that I be transferred to another hospital. That never happened. They just discharged me two days later, probably because my dad and I always made a big fuss and were getting lawyers involved. Anyway, I made the nurse who told me I had to come to the front desk nearly cry. It was my first time ever speaking out for myself and telling someone where they stood with me. It felt great.


After I got out of the hospital, I started thinking about what I wanted to do with my life. I decided I wanted to keep a blog. I started reading books about IBD, and became excited at the thought of writing one for children with IBD some day. I was finally on fire for once in my life.


I slowly came to terms with my sickness. I accepted that there is no cure, but remained hopeful that there would someday be one. I embraced my femininity but kept my edginess.  I started doing things that made me happy. I educated myself about IBD. I see the same therapist I've had since I was sixteen, because I recognize that this is a tough diagnosis to deal with. I took charge of my medications, lining up doctor's appointments, and advocating for my health needs.

Having IBD made me empathetic towards others, and made me truly understand that you never know what anyone is going through. I understand pain. I understand what it's like to wake up in the morning and not be able to move because you ache so horribly. I know what it feels like to be judged because you look young and healthy, but you're not. I know just how fun it is to wake up every morning to blood draws and then eat your hospital breakfast of chicken broth, because you're on a clear-liquid diet. I know what it's like to soil yourself in front of your boyfriend. I even know what it's like to meet your boyfriends parents for the first time and literally crap yourself. None of these things were fun, but they have made me a better, stronger, more emotionally healthy person because of it.


I am thankful for the lessons IBD has taught me. Do I wish there had been an easier way I could have learned these things? Of course! But if there was an easy way to learn life's lessons, they wouldn't be as effective. I have never been happier in my life, or more thankful of the people who love me. That's not to say that UC doesn't get me down sometimes. It's frustrating disease to have. But I don't let it get me down. I just take a deep breath, get back up, and keep going.


I hope you keep going, too.