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What Happens When There Isn't Enough Awareness of IBD

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It is Crohn’s and Colitis Awareness week, and for me this is important because before I was diagnosed 12 years ago, I hid very serious and scary symptoms as long as I could from friends and family. I didn’t want to be a burden on anyone, I was scared I was dying and I was too embarrassed to go to a doctor and tell them what I was experiencing. I also had no insurance or money, so to find someone to even go to seemed impossible. Well, I became so severely ill I ended up being admitted to the hospital, and as I came to from a procedure, I was told by a surgeon they wanted to remove my entire large intestine due to severe pancolitis, which consisted of hundreds of open sores and bleeding ulcers covering every inch of my large intestine and ilium. I was young and thought I’d rather die than have surgery and have to wear an ostomy bag. I held off on surgery for years and lived in severe pain with numerous hospitalizations every year, massive weight loss, blood transfusions, malnutrition, failing kidneys, dehydration, heart irregularities and pancreatitis, and I was often homebound or stuck in bed.

I knew nothing about what was happening to me, I had nobody to confide in or talk to who could relate and I was given diet after diet by well-meaning friends to “cure” my incurable disease, but those diets only made me worse. The medications made me sick, too: they resulted in canker scares, pneumonia, hair loss, puffy water weight gain, acne, paranoia, anxiety and depression, to name just some. But without treatment, I could die from blood loss, bowel perforation, malnutrition, organ failure. How could I be suffering so much from this disease I’d never even heard of? And when I tell people I have a disease doctors tell me is incurable, why am I given diet after diet that is supposed to cure me? Don’t people know anything about what a chronic illness is and how serious this disease can be? Do they really think I’m letting myself be this sick because of what I choose to eat? Maybe on the outside I just didn’t look sick enough for them to understand. It took me three years to finally accept that I’d be living with this the rest of my life and no diet would cure me. Finally coming to terms with this was a big stress relief, despite how ill I was.

Skip ahead to year nine of the disease, and I’d finally had enough. We had exhausted all treatment options besides surgery at this point, and the doctor and I decided it was time to have my large intestine removed. I was fully aware I could live with an ostomy bag the rest of my life, but at this point, my life was full of so much pain and sickness I’d do anything for a better shot at health. To say the surgeries and recoveries were hard is an understatement. The hospital that could perform my surgeries was five hours away from my house, meaning I was away from my family, scared and alone for much of my recovery. It was extremely painful, with many complications, some requiring a Life Flight back to the hospital from where I lived. I had to get used to basically losing an entire organ and being OK with my new body. I had to deal with my son walking in on me changing my ostomy bag and see the horror on his face as he asked me why I had a hole in my stomach. When I told him it was so I could be healthy and be a better mom, he had so much love, compassion and understanding that I knew I had made the best decision I could, despite all the challenges. I eventually had a takedown surgery, and now I have a J-pouch that is internal, so for now, no ostomy bag.

For a couple of years I realized how great life could be. I had a great two years after I fully recovered from my last surgery and I learned to deal with my new body. I started to gain strength and improve in health now that I wasn’t having constant blood loss and severe pain from a diseased colon. I even joined a roller derby team for a year to prove to myself I had the ability to overcome all I’d gone through – and in a badass way. Unfortunately, incurable diseases have a way of sneaking back, and I was later diagnosed with Crohn’s disease. The disease spread throughout my small intestine, and I’ve found out I have osteoporosis and other nutrient deficiencies as well. And I’m only in my 30s.

But instead of major fear and despair, I’ve developed the tools and a fight plan to not let these things I can’t control rule my life. Most importantly, I’ve gained knowledge and acceptance. Don’t get me wrong, it sucks, and at times I struggle with depression and anxiety as I strive to be well and deal with more hospitalizations and the scary medications I have to be back on. But life is still better than when I had my large intestine. The surgeon told me it was so damaged that there was no saving it, no matter what. I also got an amazing year of memories playing on a roller derby team, and I met amazing lifelong friends doing it. I have a loving and supportive family and truly great friends who have seen me go through it all. And best of all, I can help to either be a voice or lend an ear for someone else who just found out they have this disease and feel scared, confused and lonely.

I honestly wish years ago I had at least heard of these diseases so I didn’t have to feel so much shame, fear and loneliness. So that the idea of surgery or an ostomy bag didn’t seem worse than dying, or so I didn’t wait so long to seek treatment, which I truly feel led to my symptoms getting so bad and out of control. Crohn’s disease and ulcerative colitis are so much more than a bad tummy ache. Crohn’s disease has literally changed the course of my life and almost killed me. I just hope more people will understand and be aware of just how serious and debilitating these invisible diseases can be.

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Originally published: December 2, 2016
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