Thanks, Scott. This doctor isn’t new to me and is supposedly very experienced.
The short answer is the symptoms I can feel haven’t worsened; I’ve greatly improved. But the doctor has been hesitant to prescribe antibiotics so I have only had them 2-3 times since 2013.
I was treated in 2013 for pouchitis for the first time following an endoscopy. I had a second treatment in 2014 based on reported symptoms, no scope. In 2016 I complained of symptoms, had an endoscopy and was told it wasn’t pouchitis, no treatment. More tests due to suspected crohns, but was ruled out after a small bowel series and diet improved symptoms. This year everything looks and feels better, with the exception of chronic pouch inflammation and some new pouch ulceration.
By 2013 I had suffered untreated for 13 years, found this doctor and within 24 hours on antibiotics I felt amazing. Just prior to that treatment, the symptoms finally brought me to my knees. I’ve never been in that bad of shape since, but it’s certainly been lingering with little treatment to the point it’s definitely affecting quality of life. I think I’ve gotten used to symptoms as though that’s just how it is, especially after continually receiving little treatment.
It is confusing since I know I respond well to antibiotics. I think the ulceration is what has her concerned at this point and she’s not necessarily convinced it’s chronic pouchitis.