Hi everyone. So I was diagnosed with Crohn’s in 2007 and started on azathioprine, and then we added Remicade in April of 2014 when I developed a partial obstruction from stenosis in my terminal ileum. My GI hoped it was just inflammation and would respond to the Remicade, but by August I was mostly juicing because I couldn’t pass food through my TI and I ended up in surgery. I had a small bowel resection and three strictureplasties. Since recovering from surgery, and after a little fiddling with the frequency of my infusions, I have mostly enjoyed a lovely 10 year stretch of remission. In fact, I would say I didn’t even feel like I had Crohn’s at all.
Well, all of that came to an abrupt end in the first week of March. This may be completely coincidental timing, but here’s what I attribute it to: a friend wanted some homemade ginger beer and I told her I’d make her some. While attempting to perfect my recipe, I was drinking LOTS of the stuff over several days and by day three I was feeling like I was in a flare. Well that flare had not subsided. I don’t know if it was the fresh ginger juice, the lime juice or what, but I’d been feeling great for years so it’s hard not to think there’s a connection.
Anyway, my doctor ordered tests and neither my CRP or fecal calprotectin were elevated, but I explained that I’ve never shown any elevated inflammatory markers. (I’ve only been with this GI for 3-1/2 years due to an insurance change.) I guess some people don’t. I had a colonoscopy and he noted several ulcerations in my neo-terminal ileum with a tight stenosis at one of the ulcers. We‘re still waiting for biopsy results, so apparently it could be something other than the Crohn’s, though it’s hard to imagine. He hasn’t tested me recently for Infliximab antibodies so I don’t know if I’ll have a medication change. This has been going on for two months and I’m still feeling bad and all I can think about is how much more damage is happening while I wait, and am I going to end up in surgery again.
In the meantime, my doctor’s nurse has recommended that I eat a low residue diet, which I am doing, but I know gut health depends on good microbes and short chain fatty acids, which I’m not getting by cutting out fiber. I don’t know what to eat. I’m so confused. Did I bring this on myself with the ginger beer? I’m sort of despairing because I feel like I’m living 2014 all over again.
I apologize for whining. Thanks for listening — waiting is lonely.
Well, all of that came to an abrupt end in the first week of March. This may be completely coincidental timing, but here’s what I attribute it to: a friend wanted some homemade ginger beer and I told her I’d make her some. While attempting to perfect my recipe, I was drinking LOTS of the stuff over several days and by day three I was feeling like I was in a flare. Well that flare had not subsided. I don’t know if it was the fresh ginger juice, the lime juice or what, but I’d been feeling great for years so it’s hard not to think there’s a connection.
Anyway, my doctor ordered tests and neither my CRP or fecal calprotectin were elevated, but I explained that I’ve never shown any elevated inflammatory markers. (I’ve only been with this GI for 3-1/2 years due to an insurance change.) I guess some people don’t. I had a colonoscopy and he noted several ulcerations in my neo-terminal ileum with a tight stenosis at one of the ulcers. We‘re still waiting for biopsy results, so apparently it could be something other than the Crohn’s, though it’s hard to imagine. He hasn’t tested me recently for Infliximab antibodies so I don’t know if I’ll have a medication change. This has been going on for two months and I’m still feeling bad and all I can think about is how much more damage is happening while I wait, and am I going to end up in surgery again.
In the meantime, my doctor’s nurse has recommended that I eat a low residue diet, which I am doing, but I know gut health depends on good microbes and short chain fatty acids, which I’m not getting by cutting out fiber. I don’t know what to eat. I’m so confused. Did I bring this on myself with the ginger beer? I’m sort of despairing because I feel like I’m living 2014 all over again.
I apologize for whining. Thanks for listening — waiting is lonely.
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Thank you.
He’s also ordered the infliximab-specific labs to be drawn at my infusion tomorrow and ordered an MRE. I guess, in the meantime, I’ll stick with my low-residue diet.
