A Year in the Hospital - Continued
One of our incredible advocate writers here at InflammatoryBowelDisease.net went through some terribly rough years with his Crohn’s disease, having spent over 365 straight days in the hospital. Some of you in the community have asked about Paul’s experience, so we reached out to him to see if he’d be willing to be interviewed about his time in the hospital, and he agreed!
Check out the first part of his interview here.
5) Were there any positive parts to being in the hospital so long? If so what?
The positive parts of being in the hospital that long was that everybody knew me. From the Temple Police officers who would do their rounds on the floor to the med students who graduated later that year, everybody knew Paul! A lot of time the people who would transport me from test to test (ex. MRI back to my room), would come up and hang out in my room. We often watch games together, or just shoot the breeze. My parents did not have to pay for daily parking. Everybody at the hospital tried to make my stay, and my family visits as easy and comfortable as possible.
Also, after a VERY long time, I was able to go outside. Around the ninth month in, I was able to take a breath of fresh air. They would allow my mom to take me in a wheelchair outside and watch the cars pass on up and down Broad Street. When my dad and I would go outside, we would kid around that we would just wheel up Broad Street and go home!.
6) What happened to your home/apartment and your stuff?
At the time, I lived with my friend Paul at an apartment in Melrose Park near the city. Actually, I never spent a night at the apartment. I moved my stuff in before the December 17th surgery. The plan was to recover at my parents house, and move in when ready. That day never came. The landlords felt so bad about the situation that they would put my name in the drawing every month to win a free month’s rent.
My dad and Paul did negotiate terms with he leasing office, and they allowed us to break the lease so that Paul did not have to pay the remaining months. They were really accommodating! When I finally returned home, my parents had a hospital bed ready at their house. We had a twenty-four hour live-in nurse. In 2012, I was able to find a new place to live, and share an apartment with my best friend.
7) What was it like to finally be discharged?
It was exciting and scary at the same time! I was excited that I was FINALLY able to go home. Ironically, I was scared. I was so used to pushing that “nurse’s button.” What would happen if I needed help? I was so used to being in the hospital, I was scared of the quietness. I would miss the beeping, yelling, and the other noises I heard.
I know that sounds really creepy, but it was a true feeling. So true, that I was crying so bad when they discharged me. The social workers were very confused why I was scared. After about an hour of speaking with the psychologist, and social workers, my time had come. It was time to leave, time to go home, time to start my life again.
8) If you could describe that year in one word, what would it be?
Nightmare. I felt like it was a very long, bad dream. It was a nightmare. A nightmare I can’t believe I am here today to re-tell. A nightmare that I wouldn’t wish upon the worst people in this world. A nightmare that made me a better person. A nightmare, I don’t want to visit again.
9) What advice do you have for others who have extended hospital stays?
- Have patience. Rome was not built in a day. Keep your self as busy and active as possible. Make sure you are up and out of bed if you can.
- LISTEN TO YOUR DOCTORS! And don’t read into things too much. I used to be so crazy about blood work, and blood pressure numbers. I had to realize that if there was a problem, or the numbers seemed off, the doctors would tell me.
- Don’t get discouraged. You don’t know anybody else’s situation. Keep a journal. It really helped me. Also voice your concern. I called hospital patient relations dozens of times. I didn’t want special service, but I also wanted to be treated with respect.
- Try not to take your frustration out on your loved ones. I can’t tell you the amount of times I yelled at my parents. It’s nobody’s fault. Nobody can control your fate.
- Finally…. try to have fun! You aren’t going anywhere for a while. I remember when I was not allowed to eat for seven months, I knew I was not allowed to eat, but I needed a good laugh. I would call down to food services and pretend that they forgot my meal. I would drive the kitchen crazy until they caught on…. Hey I needed a laugh.
While Paul still manages Crohn's disease every day, he is doing much better. He is now working as an elementary school teacher and recently got engaged! It's important to remember that everyone's experience with IBD is different, but one common and necessary thread that ties everyone together is hope. Never give up hope!
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