I should begin by saying prior to April 14th, 2011 I had never presented any Crohn’s symptoms. I was a healthy 40 something who hadn’t so much as had the flu in a decade.
So on this particular Thursday I had taken the day off work and had lunch plans with a couple girlfriends. I woke up with terrible cramps and bloody diarrhea and was completely freaked out. As much pain as I was in I refused to cancel my lunch plans. As the day progressed the pain continued and so did the trips to the bathroom. By the weekend I had gotten much sicker and wasn’t able to eat and the pain wouldn’t subside so my sister took me to the ER. I was sent home from the ER with the diagnosis of a virus and a referral for a Primary Care Physician if I still wasn’t feeling better in a week to 10 days. As the days went by I got sicker and sicker. The diarrhea hadn’t stopped and I couldn’t keep any food down. It was a chore to get out of bed. I had already lost over 10 pounds and my skin was now a grey color. I made an appointment with the doctor I had been referred to and luckily her office was in the hospital. She too thought perhaps I had a virus but drew blood to run some tests. I got a call 3 days later from the doctor saying that something looked wrong with the blood results and she wanted me to come to her office. When I arrived she took one look at me and said I wasn’t leaving until they admitted me to the hospital. I had lost another few pounds and couldn’t even stand up straight. I was admitted that day and I was referred to a GI doctor and a colonoscopy was scheduled immediately. The results showed an ulcerated colon and I was initially diagnosed with UC. After about a week in the hospital I was sent home with meds. I was not improving at home and the pain was getting worse and I ended up back in the ER and was once again admitted. After a few days my doctor was ready to release me but I shared with him that I thought there was something really wrong and explained I was in excruciating pain overnight. My GI doctor decided to keep me and ordered a CT scan for the morning. Before he left my room he reminded me that sitting in the chair was better than lying in bed all day and taking a walk around the floor would be good for me.
This is when my “guardian angel” intervened. I took a walk around the floor after my doctor left and when I returned there was a young guy there with a wheelchair ready to take me down for my CT scan. I explained it was scheduled for the morning but he convinced me to go ahead and have it right then since he was there with the wheelchair. I am so thankful for him and I wish I knew who he was because I truly believed he helped to save my life. The CT scan showed I had a perforated bowel and by morning I was being wheeled down for emergency surgery. When they opened me up they found it was even worse than they thought. My bowel was perforated in 4 places and I had sepsis through my body. The surgeon performed a total colectomy and I woke up with an ostomy. This was May 13th, 2011 – less than one month from the morning I woke up with cramps!
My life has forever been changed. I am now a “pouchie” (I was able to have the reversal surgery and get a J-pouch after several months). My initial diagnosis of UC was changed to Crohn’s after recurring peri-anal abscesses and some additional testing. There has been many dark days over the last few years (abscesses, flares, fistulas, etc.) but some great days too. I’ve completed two Half Marathons with Team Challenge and I’m doing another Half with TC in November. The community of support I have found in others suffering with Crohn’s and UC and their caregivers and my caregivers and friends and family has been amazing. I am forever changed but trying to find all the positives in my new life with IBD.
I have found that sharing my story with others and helping to raise awareness makes me feel better. I also hope it fosters an environment where others feel comfortable sharing what they are going through. We are warriors and I know there will be a cure in my lifetime!