I was diagnosed with UC in the fall of 2006, at the age of 37. Looking back I probably started having symptoms during the summer of 2005 but I ignored it because I was scared. My symptoms at that time were bloody stools and a constant feeling of needing to go to the bathroom.
In the fall of 2006, I had a “flare-up” that could not be ignored, the bloody stools, diarrhea, loss of appetite to the point that I could not drink water. I got so bad I was dehydrated and had to go to the hospital, where I was diagnosed with Ulcerative Colitis (UC is an autoimmune disease that affects your large colon and rectum). I was thankful to know what was wrong but I was also so very scared. When the Doctor mention the increased risk of colon cancer and having an ostomy bag my mind just shut down. I didn’t want to hear it. During my time in the hospital, they put me on a high dose of steroids to get the disease under control. My stay in the hospital was approximately 4 weeks. Finally being released from the hospital but unsure of what to do and scared to find out more. I remember asking my Doctor at the time about the changes that I needed to make – diet and lifestyle. His advice to me was that my body would tell what I could and could not eat and I was to manage my stress. Even today, Doctors are still unsure of what causes UC although they are getting closer. The medicine that was prescribed me gave me severe headaches so we tried a different one and after a month it caused my hair to fall out. So I decided to go back to the first one, the other options were too expensive. See I had no insurance at the time and the medicine was expensive. So, I didn’t keep up with my medicine. Please know that I know what a COLOSSAL mistake that was even then. To me, if I wasn’t in a flare-up I wasn’t sick and didn’t have the disease. Talk about DENIAL!!!
So between 2006 and the spring of 2012 if I had a flare-up I would go to my PCP and get put on steroids and take Xanax to come out of the flare. This worked for me or so I thought. One thing that I have learned is just because you may not have any active symptoms it doesn’t mean you are in remission. Towards the end of April of 2012, I ended up in the hospital again with a flare-up, 5 weeks this time. I remember going to the ER before being admitted and the ER Doctor basically telling me I probably had an STD and not UC. The Doctor based this on the fact that I hadn’t had a pelvic exam in a couple of years. I was so insulted at the time, for a Doctor to assume that and not listen to what I was saying. A person with UC or Crohn’s generally knows their body well and knows what is going on with their body. I had a hard time with Doctors this time around because I was uninsured and hadn’t been taking my medicine. Upon being admitted to the hospital I asked for a PICC line instead of an IV line. Having learned from my first stay that the large amounts of steroids that they would pump through me would end up blowing my IV line. They refused to put one in and what I said would happen did, so I got my PICC line. Unfortunately, I developed a blood clot in my arm and they had to move the line to a mid-line in my other arm. Well, it started to look like I was developing a blood clot in that arm also, so they ended up putting a central line in my neck. (I looked like Frankenstein with these tubes coming out of my neck.) Feeling better, the pain had stopped with no visible signs of blood in my stool. The Doctors were concerned with the blood clot gave me a low dose of blood thinners. Unfortunately, my colon was still full of ulcers. The next time I went to the bathroom it was just pure blood, it scared the hell out of me (this may be TMI but it looked like a bowl full of grape juice). I know what I did next was EXTREMELY stupid, I didn’t tell my nurse right away, but I wanted out so bad. Well, the second time I went it happened again so I told my nurse (sanity and the will to live kicked in). The nurse put a portable potty next to my bed and I was told to call when I needed to go. There is no waiting for ten to twenty minutes for help when you have UC. So the next time I need use the bathroom I called. Help did not come fast enough for me so, my happy butt tried it on my own. I passed out and ended up on the floor and then in the ICU having to have blood transfusions. This happened twice during this lovely stay.
To this day I still can feel the frustration that I felt because they would not listen to me. I had one Doctor tell me to move into Dallas County so I could go to Parkland for help (because I had no insurance). I will freely admit that it opened my eyes but still not all the way. The UC under control, I got out of the hospital just in time to see my son graduate.
I realize how lucky I am to have family and friends that have been there and understand. Everyone does not have this kind of support. This love and support have truly helped this past year. Even with this my true driving force is my Son. Enough for now, until next time.