Coping with Crohn's Disease - My Journey

  Crohn's Disease. Yeah, I know, I've heard people say it... "That's an Old people disease! You are too young to have that!" well, tell that to my immune system and bowel. When I was 11 I was first diagnosed with Ulcerative Colitis. I was 11... that was not fun. Know what happened? I saw blood in my poo. Yeah. Scary. I told my mom... then I got scared and wouldn't tell her anymore and I kept it a secret for several months. But, then she found out. I went to several Pediatric General Doctors who... "Examined" me. I will leave that to your imagination. [[ shudder ]] Then I was sent to a Gastro Doctor... a specialist. I ended up having a Colonoscopy done, but prep was WAY worse then! You had to drink 2 gallons of this salty junk to clean you out (drink it ALL day) and have enemas several times that day and the next morning as well. For an 11 year old young girl, it was very traumatic. 

  Back then, we didn't have "support groups" or google for information. We were told what it was, sent to Shand's Hospital in Gainesville, Fl. for more doctors and STUDENTS to "Examine" me. I tell ya, those students could have learned what KY Jelly was! Ouch! Then I was told "I had it for life",... I remember crying my little eyes out,... I was no more than 50 lbs, I was a tiny little thing. Later they want to give me Steroids.... "Experimental" steroids... enough in one dose for a 200 lb. man. I was maybe 50 lbs. My parents said no. 

  So, fast forward years later.... I'm an adult, I refused to go to the Doctors anymore because of the Trauma I've been through as a child... not to mention all the BLOOD WORK they want to do. I'm surprised I had any left. Now I get married at the age of 22,... still having constant flare ups which means lots of blood loss, exhaustion, severe diarrhea, nausea, loss in appetite, weight loss, 30 trips to the bathroom a day....  I have a few ER visits from Dehydration. I get pregnant at 24 and OMG, pregnancy was a Nightmare for me. I lost 30 lbs in the first Trimester (first 3 months)... I was in the ER 11 times in 10 weeks and admitted twice into the hospital for Low Potassium. (Did you know that if your potassium is too low, you can have a heart attack?! It controls your heart beat and rhythm) 
So, I end up gaining 50 lbs in about 4 months from Prednisone (at the time I didn't know it was from that) once I got past the second trimester. I had to work on my stamina for standing up more than a few minutes because I had been bed ridden for so long. 

  I gave birth at 35 weeks (5 weeks early) to an amazing little boy who was 4lbs 10 ounces and 18 inches long. We only stayed the weekend ... he had to have 36 hours of Billy Lights and they sent us home on Monday.  Now, I can say my son is doing amazingly well, he is going into second grade and is up to my shoulders in his height.  

  It pains me to see him worry so much about me being sick. I was in the hospital last year for a week, had a blood transfusion and a scare of nearly being Septic from an abscessed Fistula... all thanks to Crohn's.  I was re-diagnosed as having Crohn's and I have been put on 2 different medicines. Now I'm on "Biologic" medicines, which brings down my immune system, making it easier for me to get sick. Also, there is a Long list of possible side effects, one of which is Cancer. I have to go in every 8 weeks to sit for 3 hours for an IV of my medicine all while a nurse watches and checks me for reactions. After it's over for the day, I go home and sleep for the remainder of the day.  

  Crohn's may be an unseen disease, but it causes so much pain and trouble. You don't see that I could be in pain, You don't see how it affects me emotionally, how it affects my family.... 

  Right now, I can't be in direct sun light because of the medicines. A couple of Saturdays ago, I had a yard sale. I was under a tent in the shade and I got Heat Exhaustion and became ill. I have had to cancel plans with friends because they want to do something outside in the heat or someplace that doesn't have public bathrooms. This may seem silly, but to me, it's a huge stress because I want to be social, I want to be with people, but the anxiety of getting sick or not making it to the bathroom is all too real.