For those of you who don’t have me on Facebook, I want to update you on some excellent news I received yesterday! I went for an ultrasound to check on how my Crohn’s is doing- it’s less invasive than a colonoscopy, plus colonoscopies have limited use for my Crohn’s as it’s largely in my small intestine.
Every time I’ve gone for an ultrasound over at the Foothills Hospital, I’ve been sent home with bad news, ranging from “You need surgery, like, yesterday” to “Congratulations, your body has formed a tube connecting things that shouldn’t be connected”.
This time, however, Dr. Wilson came in after the ultrasound tech checked me out, and told me “Sweetie, if we didn’t already know that you have Crohn’s, we wouldn’t have been able to tell.” In other words, there is no swelling or abnormal blood flow in my intestinal tissue, my bowel walls are a relatively normal thickness, there are no significantly narrowed spots, and my fistula doesn’t appear to be there anymore! I am officially in remission!
It’s been a very, very long journey to reach this point. It’s been a few years now, in fact; here’s a very simplified timeline:
December 2006: woke up with a severely swollen ankle. Was initially diagnosed with gout. The swelling spread to other joints as well.
January 2007: Digestive issues began to really get bad. Began to get big lumps on my arms and shins (erythema nodosa). Began to lose weight quite rapidly.
May 2007: symptoms continue to worsen. I lost about sixty pounds in six months. Googled my symptoms after being frustrated with the lack of attention my family doctor gave my problems, and came up with Crohn’s Disease. Got referred to a gastroenterologist.
June 2007: Saw my first gastroenterologist, Dr. Price, who suspected Crohn’s and ordered a CT scan and colonoscopy.
October 2007: Went for CT scan. Confused about why I hadn’t heard a date for my colonoscopy yet. Began first round of steroids.
February 2008: After all sorts of problems with Dr. Price’s secretary, finally had a colonoscopy. Crohn’s Disease diagnosis confirmed. Began second round of steroids. Was referred to Dr. Kaplan (hurrah!), who put me on Imuran and ordered an ultrasound (nothing much discovered then).
March 2008: Began to experience very severe abdominal pains, but was a bad patient and ignored them.
April 2008: Finally saw Dr. Kaplan about the pain; began third round of steroids and booked another ultrasound.
May 2008: Went for ultrasound; Dr. Wilson discovered a perforation that had abscessed. Had CT scan as well, and was booked into hospital for surgery. Had 30 cm of intestine removed & resected, 3 strictureplasties, and an ovarian cyst removed. Was in hospital for two weeks. Began fourth round of steroids and stayed on Imuran.
March 2009: Had colonoscopy; didn’t show much active disease. Went for another ultrasound, which found active disease in the small intestine; also found a fistula. Because I now have fistulizing Crohn’s, Dr. Kaplan begins talks about starting Remicade. Began to have more pain at the end of the month, was admitted to the hospital via the ER & began fifth round of steroids.
April 2009: Still in hospital at beginning of month, got first round of Remicade. Remicade appears to be working.
July 2009: Went to the ER again with pain, was admitted for a few days. Remicade infusions moved up from every 8 weeks to every 6 weeks.
March 2010: After being on Remicade for a year…. remission accomplished! And it only took a little over three years… lol. As far as I know, I will remain on Remicade indefinitely unless something happens.
Suffice it to say, this has been quite a journey; most of it is documented on this blog, which was originally started in 2008 to document all of this for curious friends and family members, as I got tired of explaining things over and over. Now, however, Crohn’s is not the main focus of the blog; while it’s still a huge part of my everyday life (ie, meds, not being able to have a salad, etc), I’d like to be able to put it behind me on the blog. I will leave the old posts up, but from now on, I’m going to use this blog to discuss things that interest me and make me happy, rather than all the gory details of health problems!! I’m determined to enjoy my remission for as long as it lasts!
Thank you all for keeping up with my health journey, and I hope you’ll stick around as I begin the next phase of my life- one that isn’t dominated by doctors and hospitals and medication and pain!