Hola All-
I hope each of you had a joyous and loving holiday season. I'm extremely blessed to have had a house full of kids returning home from school and their respective homes far and wide. A truly wonderful gift! One four-legged grandchild, but no bi-pedal models yet!
I'm getting ready to make my second visit to the Cleveland Clinic in about 10 days and would appreciate any perspective that you may be able to offer me before I make the drive from the Wild and Wooly North. I'm about 30 months post colectomy and 27 months post take-down and am still a long way from where I had hoped I would be at this point. I've had persistent cramping, diarrhea, urgency, discomfort and general listlessness since my surgery. I have also had 6-8 obstruction episodes, including 3 ER visits and one hospitalization with NG tube. Major YUCK!
About a year post-surgery, my surgeon threw up his his hands and referred me back to my GI to take a stab at getting things under control. A year later, my GI hoisted the white flag and I now find myself out where my UC was originally diagnosed in 1980, the Cleveland Clinic. My first modern trip there was last October. They tested for bacterial overgrowth, did a contrast study, a pouchoscopy and 2 or 3 other tests. The upshot was to have me do a course of Cipro and a super expensive second antibiotic, the name of which escapes me at the moment, which were quite effective but had no lasting effect once the regimen was complete. They then prescribed Cipro and Flagyl, with the same results- good effect, but recurrance of symptoms as soon as I stopprd taking them. I'm currently on a lower dose of Cipro alone, with mediocre results.
Anyway, to get to the gist, the docs have talked around the diagnosis of "chronic pouchitis", which they all sort of mysteriously describe as "difficult to treat", and I expect that they will officially hang that label on my lower tract next week. So, my questions are (and I reserve the right to add to the list!) What experiences have any of you had with this particular bogeyman? I understand that it often entails a perpetual cycle of varying and recurring antibiotics. Thoughts and experiences regarding side effects? Do any of you have dietary suggestions based on your experiences? On my first visit, I saw a doc named Emily Carey, whom I liked very much. She is currently on maternity leave, and I will be seeing a doc named Jessica Philpott. Have any of you had experience with her? I believe that she works closely with Dr. Shen, so that offers me encouragement. What do you think were the most important questions for you to ask your docs?
I know I seem to be sort of adrift, but any wisdom and experience that you think might be helpful, I would greatly appreciate.
Many thanks in advance for the help!
Be Well!
Trevor
I hope each of you had a joyous and loving holiday season. I'm extremely blessed to have had a house full of kids returning home from school and their respective homes far and wide. A truly wonderful gift! One four-legged grandchild, but no bi-pedal models yet!
I'm getting ready to make my second visit to the Cleveland Clinic in about 10 days and would appreciate any perspective that you may be able to offer me before I make the drive from the Wild and Wooly North. I'm about 30 months post colectomy and 27 months post take-down and am still a long way from where I had hoped I would be at this point. I've had persistent cramping, diarrhea, urgency, discomfort and general listlessness since my surgery. I have also had 6-8 obstruction episodes, including 3 ER visits and one hospitalization with NG tube. Major YUCK!
About a year post-surgery, my surgeon threw up his his hands and referred me back to my GI to take a stab at getting things under control. A year later, my GI hoisted the white flag and I now find myself out where my UC was originally diagnosed in 1980, the Cleveland Clinic. My first modern trip there was last October. They tested for bacterial overgrowth, did a contrast study, a pouchoscopy and 2 or 3 other tests. The upshot was to have me do a course of Cipro and a super expensive second antibiotic, the name of which escapes me at the moment, which were quite effective but had no lasting effect once the regimen was complete. They then prescribed Cipro and Flagyl, with the same results- good effect, but recurrance of symptoms as soon as I stopprd taking them. I'm currently on a lower dose of Cipro alone, with mediocre results.
Anyway, to get to the gist, the docs have talked around the diagnosis of "chronic pouchitis", which they all sort of mysteriously describe as "difficult to treat", and I expect that they will officially hang that label on my lower tract next week. So, my questions are (and I reserve the right to add to the list!) What experiences have any of you had with this particular bogeyman? I understand that it often entails a perpetual cycle of varying and recurring antibiotics. Thoughts and experiences regarding side effects? Do any of you have dietary suggestions based on your experiences? On my first visit, I saw a doc named Emily Carey, whom I liked very much. She is currently on maternity leave, and I will be seeing a doc named Jessica Philpott. Have any of you had experience with her? I believe that she works closely with Dr. Shen, so that offers me encouragement. What do you think were the most important questions for you to ask your docs?
I know I seem to be sort of adrift, but any wisdom and experience that you think might be helpful, I would greatly appreciate.
Many thanks in advance for the help!
Be Well!
Trevor