There have been many unforeseen battles that I have experienced with Colitis. The first battle was getting diagnosed properly. As I think back, I started having issues related to the disease at least three years before it was properly diagnosed. That is three years of trial and error, suffering from the symptoms, but still trudging along.
The second battle that I had was after I was finally diagnosed, I was given a treatment that didn’t work. When an expert assures you that this medication is going to help, you believe them. So for months I followed the treatment plan, waiting for the results, trying to be patient. All the while, I wasn’t getting much sleep, and my health was declining.
The third battle occurred after being admitted to hospital. The treatment I was prescribed works in 86% of the cases. It didn’t work for me. So after five days the specialist decided it was time to kick it into high gear, and he got me on the road to the right medication. That resulted in a colonoscopy, testing for TB, and my first Remicade infusion. The Remicade had an instant impact, and I was extremely relieved.
The fourth battle was with myself. After I got out of the hospital, I had no idea that it would take me months to recover from the flair up. I expected instant results, I was sadly mistaken. I was completely drained of energy, and while I looked fine on the outside, I was very weak and trembly on the inside. The simplist task was an effort. I expected and wanted an speedy recovery.
The fifth battle that I have had is biting my tongue when some well meaning person gives me their medical advice, or makes an off the cuff comment. So here are a few things that I have learned. Colitis typically hits people when they are between the ages of 15 to 25 years of age, it is not a middle age disease. Colitis is not the result of eating too many potato chips, there is no known cause, there is no cure, people are treated and the goal is remission. Being on sick leave is not a holiday, people who are on sick leave are not “lucky”. If you are sick enough to be off work on medical leave, chances are you are extremely ill. Finally, likely the reason very few people know about this disease is that the people who have it usually suffer in silence.
I am in the process of fighting battle number six, I have started back to work and am trying very hard to feel well enough to be at work. It is much harder than I expected. I am exhausted and feel stressed and trembly inside. I am hoping to build up strength and stamina, but I can see that it is going to take time.