When I was 14 I had a sore on my bum. I thought it was a hemorrhoid and of course as a 14 year old boy I was way too embarrassed to tell anyone. So I did what I thought was right and bought some cream. After months of the cream not working and the pain getting worse I decided I needed something stronger so I purchased myself some suppositories. For another couple months I gave myself suppositories hoping this would go away.
Well while in school one day my pants started to feel wet. I snuck into the bathroom creeping along the wall. There was something leaking out of my “hemorrhoid”. Oh my god I must be a freak I thought; I was so embarrassed I didn’t want anyone to find out. This kept happening for a while it started to get much worse to the point I always left the room last and started wearing longer shirts to hide the wet spots. I hated myself at 14. I was a freak leaking liquids out of my bum. It started to leak so bad I started to wear my moms maxipads in my underwear. I couldn’t tell anybody – what would they think?
After about 1 year and a half I was scared and it hurt so much I had to tell my mom. It was so hard for me to tell her I thought I had a hemorrhoid and it was leaking. I was afraid to go to school because I was embarrassed of what was happening to me. I avoided any kinds of friendship I was a freak and someone could find out. After I told my mother she took me to a doctor who informed us that is was a fistula and was draining. But there must be an underlying issue that caused it. They first removed the fistula then came the colonoscopies and test after test. I finally was diagnosed with Crohn’s disease – the rest of my high school career went down hill from there.
I didn’t feel well most days and didn’t want anyone to know so I always kept a positive face on. I made it through high school, then into college with flare ups here and there and always trying different medications. After college I needed my first real surgery. I had a hemicolectomy. That went well for a couple years. I took steroids during flare ups and Asacol and Pentasa seemed to keep it at bay. After a couple years things took a turn for the worse. I started Remicade and that worked for a while, then I couldn’t afford it anymore and had to go back on prednisone.
I got married and worked hard my whole life in and out of the hospital flare ups every couple months, maybe once a year at least. I kept going trying different medications. Tried to go back on Remicade with my new health insurance as now I was married and all was great. I ended up going into anaphylactic shock from the Remicade. I became allergic to it after starting then stopping. Well then came Humira. It worked.
At this point in my late 20’s I I had developed RA and needed the relief. I was getting cortisone shots but could barely stand the pain in my wrists. I still kept working never giving up on my family or myself. The Humira worked wonders for a couple years. I still had flare ups but no surgeries. A good day with Crohn’s consists of tolerable pain and nasaue. I don’t think I ever have a day where I feel normal. Whatever that is. Well suddenly I was having problems again. At 34 I needed an emergency surgery for an obstruction, it was way harder than my first. My age was catching up to me my body did not handle it as well. There where points where I stood looking up the stairs and just broke down crying because I didn’t have it in me to get to the top. I thought they cut my whole body in half, people die form this stuff in movies. Anyways it was hard.
I kept on the Humira and the occasional dose of steroids. Even when I’m well I still have flare ups at least once a year. And deal with it on a daily basis – it’s not something that comes and goes. It’s the monster inside of me that is always there. Now at 39 I’m dealing with another huge flare up. It’s been going on since January it has spread again to my jejunum. It started in my colon, took most of that out. It went to my ileum – removed most of that. Now it’s in my jejunum and preventing me from absorbing things correctly. I currently am on 24 hour IV nutrition at home. I have a pic line in my chest and carry around this little backpack everywhere I go. The CT scans since January and now have not showed any difference in the inflammation. Which says the Humira is not working and neither is the steroid this time.
At this point I don’t know what the doctors want to do. If they don’t try a new medication then I will need it taken out surgically. This is the first time in 25 years that I am actually afraid. I never miss a lot of work; even through the worst pain I will work. This time is different. I can’t work, my body ended up living off of itself because I wasn’t absorbing anything and I lost 12 lbs in a month. For the first time I am going on temporary disability from my job. I feel like I am letting everybody down. Most people don’t understand how hard it is mentally as well as physically to always feel like you’re sick and people deserve better than I can give them. Especially with my family. Some days I am so fatigued from work it takes all I can do to take off my shoes, let alone go outside and play with my kids. Those things eat away at me. I wish I had more left for everybody else. I will never be able to play with my kids the way some dads can. I can’t help my wife around the house the way she deserves. I try not to be negative – like I said I’ve never given up, always tried to stay positive. This time I just want someone to say it’s ok, for once I need someone to support me.
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