So as I mentioned in my last post many moons ago I planned on discussing my illness I've been recently diagnosed with. I have not told many people about it or posted anything on social media for a few reasons but I think it is important to spread awareness to people who don't know anything about it or think it's "no big deal."
I guess I should start from the beginning which was August of 2014. WARNING: the rest of this post may make you feel uncomfortable as my symptoms are slightly embarrassing; however, important to my story. Anyway, one day in August, 2014 I went to the bathroom like any other day and it was really painful. I mean everyone experiences pain while going to the bathroom every now and then so I didn't think it was a huge deal. The next day it was worse, and the next day even worse. This went on for about 2 months before I finally went to the doctor. After doing my own research I came to the conclusion that my issue was most likely a fissure (one or multiple cuts on the anus). I looked up what could cause these and of course I got the normal causes ranging from hard stool to you're going to die. That's what I get for using google I guess. So I went to the doctors in late October and it was confirmed that I had a fissure. He told me to take stool softeners, do sitz baths, pretty much everything I was already doing. Well, after a couple more months nothing helped and I was still in pain every day. This wasn't just a sharp, short lived pain either. It was so excruciating that I almost broke the toilet paper holder trying to brace myself and the pain would linger throughout the day. If I would move the wrong way or sit for too long I would experience the worst pain in the worst spot.
The next step
I believe it was after Christmas that I finally made an appointment with a gastroenterologist (a doctor that specializes in the digestive tract). I could not take the pain anymore and needed to get an answer as to why this hadn't gone away yet. The gastroenterologist prescribed me cream after cream ranging in price from $10 to $250. Finally, after no change I begged for a colonoscopy because I could tell something more serious was going on in my body. My doctor and I compromised and he agreed to let me have blood work done to check for inflammation. (I also had to do a stool sample but that is pretty self explanatory). I was on my way to the mall with my mom and sister a few days later when I got the call. I saw a Massachusetts number I didn't recognize calling me so I figured it was the gastro doctor telling me everything was normal. That wasn't the call I received. The nurse nonchalantly told me that my blood showed signs of inflammation and that I needed a colonoscopy and someone would be calling me later to schedule it. Confused, I said okay thank you and hung up the phone. My mom could tell by my face that it wasn't good news and I told her what she said. After calling the nurse back to get more information I was confident that I was going to die. I'm kidding but I knew this wasn't good.
The procedure
After a day of starvation and pooping my brains out I was ready for the colonoscopy. I actually cheated and ate a funion on my prep day and was really nervous they were going to be able to tell. So I went in for the procedure and I remember being really cold; probably because I was so dehydrated from the day before. Some young nurse messed up my IV in my arm so the anesthesiologist came and put one in my hand. The nurse rolled me into the procedure room as I heard cries of pain from recovery rooms. So intimidating. All of the nurses and my doctor filed in all prepped and ready to go. The anesthesiologist started putting me to sleep and I remember saying "I'm falling asleep! Help I'm scared!" and then I was out. When I woke up I was loving it (soooo under the influence). I even asked for some of the medicine to go which was obviously a no-go. I snapped right out of it when the doctor came back and told me I had Crohn's disease. I asked all the right questions like "can this lead to anything more serious?" and "is this going to prevent me from having kids?" That's when I started to cry because that was my biggest fear. After being assured everything was going to be fine I was debriefed and sent on my way.
The aftermath
When my parents and I got back home my mom basically treated me like I was going to die. But I knew it was just because she was scared and everything that happened with my sister came rushing back. I tried to keep my distance but assured her I was going to be fine. Being strong for her made it easier for me. When I told my boyfriend and close friends I played it off like it was no big deal because that is how I made myself feel safe. But when people started treating me like it was no big deal I felt alone and unsupported. Sometimes it's not the actual disease that is the hardest part, it's the idea that I have a chronic disease that I'm going to have for the rest of my life. This disease can also lead to life-threatening illnesses. There is a greater chance that I may get diagnosed with lymphoma, colon cancer, and while my immune system is compromised I am more likely to get an illness like pneumonia that could kill me. After learning all of this I felt completely helpless. I was afraid that my parents would have to bury another one of their children before it's their time. The psychological pain is what kept me up at night, not the physical pain.
My fears
My biggest fear going into this was that this disease was going to affect my everyday life. Unfortunately it's starting to. I'm currently in the midst of a flare up which means my intestines are inflamed, causing pain. When I first found out I had Crohn's and the months leading up to it my only symptom was the fissure. Now I deal with abdominal pains, painful bloating, constant rumbling, painful mouth sores, and side effects from my medicines. I take a steroid every morning along with a medicine called Pentasa that I have to take 4 times a day. I have mood swings, I'm always hot, and my fat deposits on my body are all messed up. Just last week my boyfriend got me a tattoo for my birthday. I had to cancel the appointment because I'm immunosuppressed from the steroid and need to talk to my doctor first. I called my mom crying because its just one more thing I can't do because of this disease.
How I deal
At this point in time I deal with my disease in many ways. I try to watch what I eat because some foods bother me more than others. I had to give up my favorite food, buffalo chicken, and I can't eat greasy or fried foods without regretting it later. I also see a counselor to help deal with it mentally so I don't feel so alone. And I'm always looking for new ways to get better. In fact, today I will be contacting a nutritionist to aid in my recovery. I also have a really good support system. My parents are wonderful and are always looking out for my health. My sister and friends always help me take my mind off of it. And my boyfriend is amazing and still makes me feel beautiful even when I know I look and feel terrible.
So at this point the most important things are accepting the fact that I am living chronic and always will, knowing I'm strong enough deal with this but also continue to succeed in my everyday life, and loving myself and my body even when it doesn't love me back. I hope that after reading this people have a better idea of what Crohn's disease is and doesn't think it's just "no big deal" because it's a big deal to me. It's a big part of my life. Stay healthy my friends.
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