Hi everyone. I'm new here and really just getting started on actually facing what's been going on with my Crohn's. Since being diagnosed in early 2013, I've really dragged my feet on taking care of things. After over a year of usually not even being able to read about Crohn's for more than a few minutes and not really wanting to talk to anyone about it, I finally made my account here and will see how this all goes. So "my story" then...
I've always had a relatively "sensitive" stomach, but nothing really troubling until 9 years ago when I started having episodes where bloating would build up over a couple of hours to the point that I would have to vomit to release the pressure. Typically, this would resolve on its own overnight and just leave me a bit spent the next day. This has happened an average of four times a year on average.
I went to the ER about 7 years ago during one particularly painful bout where I was experiencing pain at the site of a small benign umbilical hernia that I'd had for 15 years. The surgeon on call suggested that I have it repaired with the theory that it was "tethering" the intestine and causing an occasional kink. I did the surgery, which initially appeared to help for a year, but then symptoms returned.
I went back to occasional bouts of the bloating/vomiting with no other day-to-day symptoms of Crohn's. In fact, no one even ever mentioned Crohn's until my primary referred me to a gastroenterologist about 2 years ago. About 1.5 years ago I was hospitalized 3 days with a particularly acute partial obstruction that ultimately resolved with no more than hydration and observation.
Following that, I had a workup that involved an MRI, colonoscopy, and a second opinion with the Crohn's gurus at Brigham in the summer of 2013. I did a brief trial of budesonide, but no other treatment besides stress-management and a bit of dietary stuff. My last episode was 5 months ago, but a repeat MRI this month showed expanded SB inflammation and a slight impression of the beginnings of a fistula formation. On the theory that it's better to knock out the inflammation before developing scar tissue (fibrostenosis) or a fistula, I've started the ball rolling on medication with Remicade.
I'm feeling a bit better about starting medication, but have been struggling with some real bouts of freaking out about the immunosuppression and cancer. I've got a little distance on it now, but at times it's felt a little like I'm poisoning myself to save my gut.
I don't really know what to expect from here, but just writing all this seems to have been a good thing for helping all this sink in.
I've always had a relatively "sensitive" stomach, but nothing really troubling until 9 years ago when I started having episodes where bloating would build up over a couple of hours to the point that I would have to vomit to release the pressure. Typically, this would resolve on its own overnight and just leave me a bit spent the next day. This has happened an average of four times a year on average.
I went to the ER about 7 years ago during one particularly painful bout where I was experiencing pain at the site of a small benign umbilical hernia that I'd had for 15 years. The surgeon on call suggested that I have it repaired with the theory that it was "tethering" the intestine and causing an occasional kink. I did the surgery, which initially appeared to help for a year, but then symptoms returned.
I went back to occasional bouts of the bloating/vomiting with no other day-to-day symptoms of Crohn's. In fact, no one even ever mentioned Crohn's until my primary referred me to a gastroenterologist about 2 years ago. About 1.5 years ago I was hospitalized 3 days with a particularly acute partial obstruction that ultimately resolved with no more than hydration and observation.
Following that, I had a workup that involved an MRI, colonoscopy, and a second opinion with the Crohn's gurus at Brigham in the summer of 2013. I did a brief trial of budesonide, but no other treatment besides stress-management and a bit of dietary stuff. My last episode was 5 months ago, but a repeat MRI this month showed expanded SB inflammation and a slight impression of the beginnings of a fistula formation. On the theory that it's better to knock out the inflammation before developing scar tissue (fibrostenosis) or a fistula, I've started the ball rolling on medication with Remicade.
I'm feeling a bit better about starting medication, but have been struggling with some real bouts of freaking out about the immunosuppression and cancer. I've got a little distance on it now, but at times it's felt a little like I'm poisoning myself to save my gut.
I don't really know what to expect from here, but just writing all this seems to have been a good thing for helping all this sink in.
