“Everybody’s been there, everybody’s been stared down
By the enemy
Fallen for the fear and done some disappearing
Bow down to the mighty
Don’t run, stop holding your tongue
Maybe there’s a way out of the cage where you live
Maybe one of these days you can let the light in
Show me how big your brave is”
Hope can make you crazy. It can make you blind to reality, but it can also save your life. The hope I had for the Humira working for me was a strange feeling. I knew it was my last option and that was terrifying. I also had a small pinch in the pit of my stomach that even though we were trying, I had reached the end of the line.
Unfortunately, Humira was not the answer. My lab work and numbers got worse when I was on the Humira and to the Cleveland Clinic my family and I went. I was less than prepared for what I heard on that Thursday morning. The surgeon asked about my quality of life and I told him that I was sick, but hopeful. He then asked me what I thought we should do. I told him I didn’t know. “You don’t know or you don’t want to admit?” He explained that he had a daughter my age and that if this were happening to his family, the choice would be obvious. He told me that he was going out of town until the end of July and we could do the procedure then. “No!” I screamed. That was way too soon.
He interrupted my cries by saying, “or we could do it Monday.”
I began hyperventilating and bawling. Begging for more time to consider my options. He then told me that my options were out, if I didn’t have the procedure done as soon as possible, I was going to perforate and die.
He excused himself from the exam room and I felt like I had been hit with a train. I begged for my colon harder than I had ever asked for anything in my life. My parents became stern, tired of watching their daughter waste away. After what seemed like I had been pushed into my worst hell, I agreed to have the procedure done.
All of the routine steps to prepare for surgery were rushed and I met with an ostomy nurse to learn about my new body. When she marked the dot where it would be, it felt like the sharpest knife stabbing my beautiful stomach. I couldn’t stop crying for the rest of the day. How was this happening to me? This was promised to never happen. Did we even try everything? How can I even begin to mentally prepare myself for this in only 3 days?
I returned home that day and allowed myself to eat foods that I hadn’t been able to eat in months. Even though they made me really sick, I felt like I was preparing to go to prison. I spent the next 3 days telling myself that it was going to be okay, that I was going to make it through and be brave. This surgery meant that the pain and suffering was over and after only 6-8 short months I would be back to new with my j-pouch. Anyone can make it through 6 months, right?
Sunday, the day before my surgery, I went to church with my mom. Upon walking into the church I looked up at the altar and asked God for strength. He had given me this journey for a reason, like my boss always tells me. This is my journey, not my destiny. Throughout this entire process I of course questioned my faith; pleading and begging with God daily to make the pain stop and to help me understand why He was doing this to me. Maybe this surgery was His answer.
I went into my surgery day with the most strength and confidence that I could muster. I didn’t cry or scream and I tried to find peace with what was happening.
My stay at the Cleveland Clinic after my surgery was eye opening. I woke up in a room with a young girl just across a curtain from me. She had the opposite issue from what I had, her bowel had died and she could not go to the bathroom without having to have painful procedures she told me were called, “clean outs.” She also had an array of other painful problems, including nervous system issues. While my ostomy seemed like the end of the world, hers was the least of her worries. I remember feeling so helpless when I would hear her called to the nurses for her list of what seemed like 20 different medications.
I was determined to show immediate progress in the hospital in order to be discharged as soon as possible. I walked and sat in my chair the required amounts daily. The best news I had heard in literally a year came when food service came into my room, handed me a menu and asked me what I wanted for dinner. I looked down at the menu, containing chicken fingers, pizza and grilled cheese. I looked at the girl and told her that I wasn’t allowed to have any of this. She gave me a puzzled look and explained, “No, your diet has been changed and you can have any of this.” I yelled in excitement, not knowing what to pick first! I chose a grilled cheese sandwich, potato chips, chocolate chip cookies and chocolate milk. I told her I couldn’t wait to have my first meal without having to run to the bathroom!
A few minutes later, the same woman returned. In her hand she had a turkey sandwich and potato chips. “I know you are really hungry, so I wanted to bring you something to eat before your dinner came.” It was the nicest gesture. The sandwich was bland and probably disgusting on regular terms, but it was the best damn thing I have ever eaten.
Over the next few days I went through a lot emotionally and physically. I cried at the process of my new ostomy and struggled to find positivity. I knew that I was going to have to get used to it and the nurses kept telling me every day that it is only temporary. My mom describes it like a big band aid that is going to come off in just 6 short months. The nurses and my surgeon told me that my recovery was remarkable and I was allowed to go home in just 4 days. Unfortunately, I left my roommate behind who was still really struggling. I have a big appreciation and respect for her, she made me realize that I should be thankful for my healing, for there are others that are not as lucky. That girl is a fighter.
Since being home I have realized a lot. Even though my body is really different for the time being, I am cured! I can eat, I can shop, I can SLEEP! My family can rest and know that I’m not up all night running to the bathroom. I have been to my favorite restaurants and eaten my favorite foods without the absolute fear of the pain that used to follow. I can get in a car and not have sweaty palms.
I have had a lot of break downs, this is really hard for me mentally. Getting dressed has been a challenge. I’m very swollen and its weird to see my usually small stomach stick out. I’m very self conscious about my ostomy showing, but I need to realize that after the swelling goes down and my nifty “swealt belts” come in, I will have nothing to worry about. I have always been a girl who cares a lot about vanity and self image, and this is proving to be a huge challenge for me. But I’m starting to see that it’s also there to teach me.
I have decided to pursue my love of makeup and skin care and sign up to get my esthetician license from Aveda starting in the fall. I want to be able to help those who are struggling. I now know what it’s like to not feel very pretty, or like yourself. I want to be able to provide support and relief for those who have suffered as I have. I’m going to return to work for my boss, who has been more than inspiring and supportive throughout this entire process. I’m going to go back to my apartment, go to the gym, go out with my friends and be in love with my boyfriend. And I’m going to do all of it without having to run to the bathroom. I have a long journey and 2 more surgeries ahead, but I’m going to try and remember to look to this journey with positivity and remember that the gift of life and health have been given back to me.
The love and support of my family and true friends have been amazing. I face this process with bravery mostly for them. It has been so relieving to not only not be sick, but to see them look at me without sadness or sorrow. This time is going to fly and I’m going to spend it healing, learning and growing. I have my life back.