Everything was going so well. It is hard for me to pinpoint when things started to go wrong. I had been feeling normal and healthy so I stopped recording in my food journal. This is a harsh lesson I learned and am trying hard not to forget as I begin my healing process again.
Anyway, in September of 2014, I began to have issues. First, I kept getting sick. I would get a small cold and take it easy for a few days and get better. After I felt healthy again I would begin to pick up my activity levels only to catch another cold. They were mostly head colds but I did catch one stomach virus that left me extremely nauseous for a day. Eventually I caught a doozy of a head cold that I needed to see a doctor for. It was a sinus infection and I was prescribed antibiotics. About a week into my round of antibiotics I got a call from Kaiser informing me that the day I went to see the doctor, one of the technicians I had interacted with had whooping cough. Because I am on medication that reduces my ability to fight off infection, I was prescribed another short round of antibiotics.
I was experiencing around three bowel movements a day at this point. Apparently this is not good and a sign of a deteriorating condition. But when for close to three months you became accustomed to going to the bathroom twice that many times, it doesn’t really seem that bad. Foods that normally were okay for me to eat were causing me to have very painful bowl movements, so I started cutting foods. I said goodbye to coffee, reduced fruit to only half a cup a day, allowed myself only one almond or coconut flour food a day, and reduced the amount of honey I consumed. This did not change how often I went to the bathroom but it did get rid of the pain.
Part of the reason I did not notice the severity of my condition was that I had no joint or eye pain and was not feeling the extreme fatigue that accompanied my last flare. By the end of September, the number of my bowel movements were increasing so I contacted my doctor and told her what I was going through and she ordered blood and stool tests. I was expecting to be prescribed another Colocort because my symptoms reminded me of how I was right before I reached remission.
When the tests came back they showed that my inflammatory markers were normal but that my total iron stores (ferritin) were still low. All my stool tests came back negative for the toxins and bugs that can cause trouble in your colon so my doctor scheduled me for a colonoscopy to reassess my colon. She also wanted me to take three iron pills a day to get my iron stores up.
I eventually was scheduled for a colonoscopy on October 22. I started taking the iron pills but that went bad. A lot of people suffering from ulcerative colitis have a really hard time with iron pills and I count myself one of these. At best they caused me really bad heart burn or nausea but they also made me vomit violently.
Starting around October 9 my condition got a lot worse. I was experiencing stomach cramps and spasms, blood loss, weight loss, joint aches and pains, eye pain, and severe chills. These were the worst chills I have ever had. I would have heavy socks, Uggs, flannel pajama bottoms, and three layers of sweatshirts on and be under a sleeping bag with five other blankets and still be freezing cold. It would take me an hour to warm up and then the chills would be gone for the day/night.
I updated my doctor about my developing symptoms and my colonoscopy was moved up to October 16. The next few days were absolutely horrible and I don’t honestly remember much. I was looking forward to going in for the procedure for the pleasure of being knocked out for a couple of hours.
The day of the procedure came and while I was being prepped, I remember being shocked at how fast my heart rate was. It was around 120 and my blood pressure was all over the place. I was finally given anesthesia but before I knew it I was waking up. I instantly remember thinking that it felt like I had not been out for that long, and I hadn’t. My doctor came to talk to me and told me that my colon was so swollen and inflamed that she could not scope that far in without risking perforation. She also told me that my latest blood results showed that my anti-inflammatory markers were off the charts.
I was prescribed Prednisone, a corticosteroid that prevents the release of substances that cause inflammation in the body, and sent home. I thought the worst was over but that day and night was hell. It was like I was prepping for my colonoscopy again. I just kept going and going or feeling an intense and painful urge to go. I was not urinating either, even though I was drinking water. I lived in the bathroom and on the floor dazed and confused and withering in pain. The next morning I couldn’t take it anymore. I emailed my doctor about what was going on and she immediately got back to me, telling me that the best course for me, considering the severity of my condition, was to go to the ER for IV fluids, bowel rest, and IV steroids. My story continues in Part VI.