It’s almost like a dream and that girl laying in the hospital bed for six months wasn’t me. Even though it was only a little over three years ago I almost feel like it didn’t happen.
(I still can’t believe that’s me.)
Most of you are always asking me how I stay so positive and where I get my optimistic attitude from. Sometimes I don’t know myself where it came from and i’ve been trying to work on a good one liner to give to people when they ask me. I think today I figured it out. The answer isn’t so simple but I think it all has to do with hope. In order to understand let me take you back to the dark days…
The dark days
It all happened so fast. One moment I was in my final semester of college living on campus and had a circle of friends that were so close they were like sisters. I was working a good job and in a new relationship and everything was just as it should have been. In an instant that was all swept away from me and my health was spiraling out of control so fast I had nothing to hang on to.
I lost my job.
I quit school.
I had no health insurance.
I moved back in with my parents.
My days had gone from taking dance classes, taking college courses, going to work, being a VP in a university club, and having a social life to spending my time in agonizing pain, with high fevers, bloody toilets, multiple medications, and no energy, but I still had at least a little hope…
My hope was lost when not much longer I was laying in that hospital bed day after day in the worst pain I had felt in my life. I had witnessed other people’s blood being pumped into my body, TPN being pumped into me for months because I could no longer eat and was losing too much weight, medications and antibiotics and all this stuff going into me that didn’t belong to me! Then there was the stuff being sucked out of me via an NG tube. This had to be a dream.
(My first NG tube and the impact of months of sickness and medication.)
It was scary because it was the first time I experienced those things. I had only seen this stuff on TV and now it was happening to me! I was really so sick that I needed multiple blood transfusions? I could not believe it! TPN? WTF is TPN?! How was it that things got so crazy so fast? Soon my body had been butchered and I had part of my small bowel sticking outside my abdomen and stool was being collected in a bag. My once perfect tummy now had a huge scar. The perfectionistic athletic dancer living inside of me didn’t know how to adjust to that.
After my colon was removed they told me things would get better and I would have my life back, but instead they got worse. My dark days existed when I had lost all hope. Nothing was going the way it was supposed to go. When I had my ostomy I was plagued by terrible pain and wound up in surgery to have adhesion’s cut that were strangling my small bowel and causing me to vomit large amounts of dark green bile constantly. I got an infection in the hospital and spiked a fever of 104 and was put in the ICU where I don’t remember anything from what happened during those days. I was down to 90 pounds and still being fed intravenously because I couldn’t gain weight. I was given visions of a new life with a j-pouch and instead my j-pouch wasn’t working the way it should. They discovered a motility problem in my small bowel and I had a cathedar inserted to empty my j-pouch because I wasn’t going to the bathroom like I should have been. During the night was when my pouch decided it wanted to empty and I had accidents so often that I had to wear adult diapers. My pain was unbearable and soon the doctors thought “it was all in my head” and people came to “talk” to me.
To put it bluntly I was scared. I was scared out of my mind. And because I was in so much pain and my hope was lost when doctors didn’t have an answer as to why things were going the way they were going I hit rock bottom. I became a mean and angry person because I was angry at the world. I would fight with my mom and soon she stopped visiting me in the hospital because it hurt her too much to see me like that. I was destroying the relationship I was in at the time because I was taking my anger and fear out on the people closest to me. All I could do was lay in that hospital bed in pain being angry at the world and wishing for the end of my life. It pains me to admit that, but I have to give it to you honestly. All I wanted was for my suffering to end, and I didn’t care how that came.
A new attitude
By the time I got home I was down to 82 pounds. I had lost most of the muscle in my body so that I could not climb the stairs in my house to get to my bedroom. I was still wearing adult diapers at night and had so little energy that I slept most of the day. My hair was so thin by now and my face full of acne from all the months of steroids. Each day that I tried to eat I would throw up. Those were good times…I threw up everywhere I went. In the car, while shopping in stores, on dates, EVERYWHERE.
So there I was, 26 years old. My friends around me were done with school, they had good jobs, they were getting married and having kids. I was living at home with my parents starting life over. My credit was destroyed by not having health insurance and all the time spent in the hospital. I was crapping my pants. CRAPPING MY PANTS! Do you know how scary that is? To ever wonder if you’re going to be able to use the bathroom again? What goes through your mind…how will I date someone? How will I sleep next to someone? How will anyone find me attractive? This was a hard time for me because by nature I am a doer. I go go go and work work work because that is who I am. I felt like a loser because I wasn’t working or going to school or doing anything that I thought you had to do to make you an honorable human being. I wanted my life back and was mad it was taken away from me over something I couldn’t control.
And then something shifted…slowly things started to get better. I stopped throwing up everything I ate and was putting on weight. My accidents at night stopped and my body adjusted to my j-pouch and accidents were no longer an issue. With the return of my health my hair started to grow back thick and healthy again. I found a job…life went on. Later it was discovered that I had Crohn’s disease and not ulcerative colitis and that could have explained most of the issues I had during the 3 years that followed that hospitalization. And you guys…this is where my positive attitude arose. I am positive today because I remember the dark days. I look back at all that I went through and since I know that things got better then I know that anything is possible.
So when things are going wrong I have hope. I have hope that things can get better. I smile because even though I am still sick and spend a lot of my time in the hospital and i’m still on these harsh medications things are not as bad as they used to be, and if those dark days return I now know I can rise above them.
I have grown to love my scar and love my body even more than before surgeries.
If I need an ostomy again in the future I will wear it proudly.
I have a voice now and i’m able to talk about my journey.
When i’m hospitalized I can see the light at the end.
I’ll admit that some of it has to do with desensitization. Back then it was my first experience with those things and therefore a lot scarier. Now having a PICC line inserted, having an NG tube, getting a blood transfusion, having surgery, etc. isn’t a big deal because i’ve been there, done that. It’s just something that is part of my life now but I don’t let it consume me.
Because of all of my struggles I am thankful for my disease. As silly as it sounds it made me into a better person. Having the best job, being perfect, doing all sorts of “amazing” things is no longer my priority. I am able to take a step back and appreciate the things that actually matter in life. When I see people around me stressing over trivial things I laugh to myself because it’s like I know a little secret. I know that those things don’t matter and I feel lucky that I am able to LIVE life. Thinking back it’s hard for me to remember the girl I used to be and it all feels like it was a dream. My days are so much brighter and I live life so much better. I hope that if you’re not at this point already that one day you get here, it’s a good place to be.
Happy butts & guts,
*Disclaimer: If you like what i’m posting and want to spread IBD awareness go for it! But please credit myself/this blog and always link back. Thanks! -Sara