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[1] – 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[2] 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.[3] 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[4]. Perhaps naturally occurring bacteria from real food is better? I hope the upswing continues. I would love to have my life back.

[1] I had colon spasms. I have always had them. Apparently, in his mind, this meant I didn’t have ulcerative colitis.

[2] 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.

[3] Everyone coming to see me had to gown up except for Deb. They let her do what she wanted.

[4] Both of these are ridiculously expensive.

4 thoughts on “My Journey with Ulcerative Colitis

  1. Digestive issues are the worst. You never know how far you can get from a bathroom, and I like privacy for my pain. I also have tried Kefir (as well as OTC pills/powders). I love what it has done for my system. It is now more of a known constant with fewer ups and downs.

  2. Kefir has helped with your IBS? I haven’t noticed that so far but it sure has helped, or appears to have helped, with my ulcerative colitis.

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