I realized the other day that it has been 7 years since I first started to show symptoms of ulcerative colitis. This disease is very difficult to live with as it interferes with digestion, can cause major blood loss and creates a great deal of fatigue. Here is a brief synopsis of the ulcerative colitis events in my life. Keep in mind that every day has been a struggle to deal with fatigue, pain, random fevers and ‘digestion upsets.’
- June 2005 – I had a number of symptoms that were strange. Mostly it was mucous, blood and thin ribbon-like stools. I was also spending more time in the bathroom than usual.
- December 2005 – I had my first colonoscopy. It was negative for any sign of ulcerative colitis. My symptoms had also stopped.
- February 2006 – the symptoms come back with a vengeance. Lots of pain, diarrhea, mucous and blood. My doctor started me on Asacol, which is a first-line treatment for ulcerative colitis.
- July 2006 – I saw my first gastroenterologist. He says I likely have ulcerative colitis and says I need a colonoscopy. He then shut down his practice before I could be scheduled. I didn’t know this so I waited 18 months as my symptoms worsened.
- October 2007 – I finally see a new gastroenterologist. He decides I don’t have ulcerative colitis based on one symptom of Irritable Bowel Syndrome – which I also have. He took me off all ulcerative colitis medication and I became really sick. When I finally had a colonoscopy a month later I had really deteriorated. I had active ulcerative colitis in 1 metre of my colon. He was extremely condescending and rude to me. When I asked him about going on immune suppressant drugs he said he would never put me on that medication.
- November 2007 – I developed an immune response called pyoderma gangrenosum. It caused what looked like an abscess by my eye that had to be lanced and then a huge abdominal wall lesion that eventually measured 10 cm by 10 cm. It was extremely painful. It took more than a month to diagnose. During that time they hit with me intense antibiotics that, in the end, did nothing. It was only after a wound care nurse figured it out that I was appropriately treated with steroids.
- January 2008 – I ended up in hospital for 2 weeks. I had dangerously low potassium levels due to diarrhea. I also had very low hemoglobin due to constantly bleeding. I was also in extreme pain. I ended up on prednisone for 6 months and huge dose of morphine that I then had to wean off of. I could not work for 6 months.
- November 2009 – I ended up in hospital again as my immune system had been wiped out by Imuran. I was in for week. I had 2 blood transfusions and spent time in reverse isolation. This is the closest I have come to dying. Literally.
- July 2011 – I needed to take a sick leave for about 2 months. I was exhausted and really struggling. Likely it was all due to stress.
I have been back at work since mid-September of 2011. The last 6 months I have seen a steady improvement. I have been looking after myself very well. I am wondering if the addition of kefir to my morning smoothie is helping. Some people have had success with repopulating their digestive tracts with good bacteria. I have tried this with Florastor and VSL #3. Perhaps naturally occurring bacteria from real food is better? I hope the upswing continues. I would love to have my life back.
 I had colon spasms. I have always had them. Apparently, in his mind, this meant I didn’t have ulcerative colitis.
 Ulcerative colitis is believed to be the result of an overactive immune system attacking the colon. Immune suppressant drugs help to control the immune system.
 Everyone coming to see me had to gown up except for Deb. They let her do what she wanted.
 Both of these are ridiculously expensive.