Living with Crohn’s Disease and Everyday Life for a Teenager (post #5)

   After the summer of my brother’s death, Crohn’s disease still out of control, I returned to high school as a sophomore.  It was back to the daily hum drum of life.  Things remained the same with my dad.  He kept having surgery and admissions into the hospital because his Crohn’s was also out of control.  My brother, Paul, managed to be ok  during this time, not requiring any more surgery.  My brother, Frank, started a taper from the prednisone.  I was not so lucky (not that they were lucky in the future). I continued to lose weight, have abdominal pain, severe diarrhea and night sweats (which is another symptom of inflammation).   It was hard to sleep with the sweats, pain, getting up to go to the bathroom and with my father in the room below having such terrible pain (I could hear his moans).   It was difficult to  go on a date.  I would have severe gas then bloating and  pain. I continued to worry about my grades.  I` became interested in boys but felt that I would never have a boyfriend. When I went on a date I had to try and hold the gas in as well as the bowel movements.  I didn’t want to embarrass myself by asking a date to stop the car or whatever we were doing so I could go have diarrhea.  During  this time for some reason, I had continuous gas, my stomach blew up like an air balloon and I couldn’t let it out.  The smell was horrific when I did.  I’d have to wait until I got home which was almost impossible.  I felt this contributed to the worsening of my Crohn’s.  By not going to the bathroom when my body told me too I was holding things inside making it more possible for fistulas to form (fistulas in Crohn’s disease, are abnormal connections from one part of the intestine to another part of the intestine, or to another organ or structure (such as the bladder) or to the skin.  Many of these formed during this year.  I continued on the prednisone and antidiarrheals with no other medications.  I maintained a strict diet.  I tried to cut the stress in my life but when you’re that young it is hard. 

   As I tried to continue to live a normal life my feelings were left bottled up inside.  I talked to no one about the consequences of my Crohn’s disease.  I ended up with an abscess from peritonitis (an abscess in this case occurred because the disease caused a perforation in the wall of my intestine thus leaking fecal matter into my peritoneum–abdominal cavity–).  Of course, I had no idea that I had an abscess until I was operated on the following summer.  I had  a constant pain in my abdomen in the area of the abscess.  (I did not develop peritonitis because the abscess kept the matter from my intestines sealed.)  I started to run high fevers however especially at night.  I would continue on this pattern, most time only drinking clear liquids for meals to decrease the pain, for the entire school year.  I would keep all my feelings in me regarding the things adolescents think about at this age.  I couldn’t rebel I needed my parents.  I was the perfect teenager.  I never really dated.  I looked like I was 12 yrs old, my growth was still stunted (partly from the Crohn’s disease and partly from the prednisone).  I continued to get teased about my appearance (moon face, “chippy”, shorty etc.).  I tried to take everything with a grain of salt but the teasing still bothered me.  I can’t tell you how many school days I missed due to this disease.  I was very lucky because most of my teachers knew I was a good student so I wouldn’t have to make up a lot of the work I missed, otherwise I probably would not have moved on to junior year.

   Finally, my body could not take it any longer.  I wasn’t taking good care of myself at all.  I have to admit I cheated on my diet, eating things I shouldn’t have and worried about needless things.  I also went with my mother  to visit my dad in the hospital, and he was in often.  If I didn’t do that, I’d stay home and make supper and do the dishes for my brothers and myself.  I also didn’t always contact the doctor when I should have.  Please don’t mismanage your disease like I did.  I paid for it.  Now, I know that it wasn’t my fault (but not back then). People with Crohn’s disease or any chronic illness tend to blame themselves for having the disease.  No matter what, Crohn’s disease is not your fault.

   It is a wonder I made it to the end of the school year.  However, I collapsed at the end of the school year and had to go in the hospital.  I know if I had taken better care of myself and contacted the doctor when I should have and maybe missed school on the days I pushed myself  I would not have had such complications as an abscess and multiple fistulas.  I should have gone into the hospital for bowel rest during the school year which I would not do.  Therefore, I had a long hospital stay.  I’ll get into my hospital stay next post.

    I made it.  Despite my not following the doctor’s directions on my health (sometimes I would cut the prednisone to almost nothing, my mom wouldn’t know anything about it, I know that also contributed to the worsening of my disease) I made it, but I also payed the price.  Think about it though, I was an adolescent looking for my independence and identity, I wanted to do what I wanted.  And I did without regard for the consequences.  Teenagers have this “thing” where they think their invincible.  I found out fast that I wasn’t. 

   I hope you take heed of what I did and not do the same thing.  Back then, the only thing that was effective and tried on me was the prednisone.  There are so many more drugs and treatments now that there is no need for anyone to end up like me.  I’m feeling better now because of the new treatment of remicade.   Any teenagers out there with the disease, don’t do what I did.  Follow your diet and medicine regime, in the long run it is a better idea than mine was. LOL  Besides being faithful to these things develop a hobby or something to distract you from the pain and stress, it does wonders.  Don’t be negative and allow the “bad” chemicals take over your body.  Be  positive and allow those endorphins to run free–it’s your body’s natural pain reliever.   Until the next post stay well.

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