This post has been on my mind for a while. It is also a very hard one to write. The last two years have been hard, both physically and emotionally. In the Fall of 2011 I began to get sick. Nothing major, just diarrhea every day. It slowly got worse. I was spending all day in the bathroom and soon all night. I was exhausted all the time. I went to my GI doctor several times and did several tests. After a colonoscopy in December 2012 I was finally diagnosed with Crohn's Disease.
Crohn's Disease is an autoimmune disease that attacks the digestive system. Basically my body thinks something is wrong with my digestive system so it attacks it, leaving it inflamed and full of ulcers. Mine is found mainly in the colon, duodenum and occasionally my esophagus. It prevents my body from absorbing nutrients. I get painful abdominal pain and don't even get me started on the pain that comes with going to the bathroom. It causes extreme fatigue and joint pain. It causes back pain. I have had a loss of appetite because so many foods now make me sick. I have lost way more weight than is healthy. It is unknown what causes CD so there is no cure. There are a lot of medications to treat the symptoms.
The first medication I was put on I was allergic to, which eliminated a whole family of medications that I can take. This was supposed to be the most mellow of all the medications (just my luck). That was a let down. Shortly after diagnosis I also contracted C. diff. It's a naturally found bacteria that aggressively attacks the intestines. It is contracted when on antibiotics so there are very few antibiotics that can treat it. I ended up in the hospital for a week from it. If I ever use antibiotics again I will be at high risk for contracting C. diff.
I went into remission for about two months then the Crohn's flared again at the beginning of the summer. It started off a whole new round of tests to double check that it was indeed the Crohn's and how aggressive it was. Blood tests, stool tests, colonoscopy and a ct scan later it was indeed Crohn's. I went back on the steroids that put it in remission last time (steroids are a short term solution only). It suppresses my immune system to keep my system from attacking my digestive system. It also keeps my body from fighting foreign germs so I now catch every bug and sickness very easily. For example, I have been battling a low grade fever for over a week now but don't know exactly why. And I can't go on antibiotics to try and get rid of the mystery bug. I am finally almost in remission again (yay!!). Next month I will hopefully begin tapering off the steroids and start on a maintenance medication to keep from flaring again.
It has been a long hard year or so for my body. I am constantly exhausted (yet ironically enough the steroids induce insomnia). I don't go out much anymore because my life revolves around the bathroom for the moment. I have become a bit of a germ-a-phobe since being put on the steroids and contracting C. diff. It's also been a very emotional year. Lots of questions and feelings of hopelessness. There are many days that I have to focus on just getting through one day at a time. The worst was the day that it finally hit me that this wasn't like having the flu. I wouldn't wake up the next day and finally feel better. I have this for life. For the next 60 or so years. Yes, I will have times that I feel ok. Maybe even great. But I have already discovered that it can change in an instant. It has also been very straining for the finances. It is very frustrating to be too sick to go to work and then have mega medical bills on top of it, yet I can't feel good enough to go to work without the doctor and all his tests and medications. It ends up being a very vicious cycle.
Things are finally starting to look and that is what I am going to focus on for now. It's what I have to focus on to get through the bad months. My goal lately has been to be more positive. Part of why I stopped blogging was because I didn't feel like anything good ever happened to blog about. My whole life revolved around being sick and feeling miserable. For the next few posts, I am going to review the last year and look for the positive. I may have been sick for a long time, but I still have much to be grateful for. I just need to look for it more.
pictures from the last few weeks
13 years ago
