When our first child was about two years old, I realized that my health had been slowly deteriorating. I was often out of breathe, with little action to cause it, tired, and I was having digestive issues. I made an appointment to see my doctor, not really expecting anything serious. I had no idea that this would be a pivotal point in my life moving forward.
In May of 1998, I was diagnosed with Crohn’s Disease. This can affect any part of the digestive tract, and although it can go into remission, it is a lifetime disease. My Crohn’s was basically limited to my large intestine. It became inflamed like a tire, both inside and out. It required medications to reduce the swelling, iron for anemia, due to the bleeding it caused, and a restricted diet. The diagnosis was very upsetting at first, but I soon felt that it was manageable, and went back to life as it was, with a few more pills and a few less tasty foods to eat. I was months away from getting pregnant with our second son.
The following summer, after our son was born, I started having increased symptoms from the Crohn’s. These things creep up on you. You feel like you have it under control. Change the diet a little more, change up the medication. Tell yourself that things will get better. Only they don’t.
On January 2, 2000, while most of the world was taking a sigh of relief that their world didn’t fall apart as many predicted, mine did, as did my husband’s. Or at least it began to. I went to the doctor after feeling like I had been suffering from a flu bug for a week or so, and ended up hospitalized for 2 weeks. It would be the first of a number of stays. After the pregnancy, running around with two young children, the stress of two relatives passing away around Christmas, and my denial of the symptoms, I was so dehydrated, and my blood pressure was so low, they didn’t know how I was even standing up.
In the year to come, I would have 106 degree fevers, tachycardia (racing heart), extreme weakness, handfuls of pills, a severely restricted diet, and I would go down to 88 pounds. The boys were now 4 years and 6 months. My husband had to travel quite a bit for work, and my mom would come help me. When she couldn’t be there, you would find me feeding the baby while I was wrapped in a blanket due to chills. I lived hour to hour. Morning nap, afternoon nap, bedtime. Those were my goals to make it to throughout the day.
In the summer of 2000, I was once again hospitalized. This time for a staph infection I developed after hitting my leg on the car. For most, this would be a two day stay. For me, it was seven, including my birthday. My immune system was just too compromised from the Crohn’s.
There would be no relief for two more years. In 2001, I developed cataracts from the steroids I had to take for the inflammation, and at the age of 32, I would require cataract surgery. In April 2002, I lost vision in my eyes due to swelling of the optic nerve. This would require a hospitalization as well. Though I did eventually regain most of my sight, I still have blind spots, and have to be checked every few years.
Finally, in the summer of 2002, when all medications had been tried and none were working, I realized that I had to take more drastic measures. I could not be there for my boys as I wanted to be. I couldn’t help at the school, or take them to the park. This disease was taking me away from my kids. I couldn’t live with that. I chose surgery. My large intestine was completely removed. When they removed it, my heart rate immediately went back to normal, and I mean at that very moment in surgery. They said it was almost perforated in so many areas that if I hadn’t been on a strong antibiotic for so long, I would have had a massive blood infection. I had no idea how close I was to dying.
I will live with an Ostomy bag, for the rest of my life. It was one of the best decisions I ever made. I have never regretted it. Not for a single second.