Hi, first I’d like to introduce myself. I am an american living in Australia, migrated here with my Aussie wife 4 years ago. I am post surgery (J pouch) for 33 years now. It was an experimental procedure and underwent with a forum of students in a huge auditorium style surgical unit at Loma Linda University in Southern California. At the time I was suffering from UC since the age of 19 for a number of years.
One complication after surgery was I was unable to control my bowels to have a bowel movement or empty my pouch so I resorted to this day using an enema (medena catheter and syringe) to empty my pouch. Not convenient but it was needed and has worked for me. However in the past 4 years since I have moved to Australia I been getting reoccurring pouchitis. The doctors I have gone to here are not as experienced with pouches. My current gastroenterologist told me “they do not do many of them (surgically) in Australia”.
They have been fighting it with a combination of flagyl and cipro which seems to be effective. However I have been losing weight and now it’s becoming a real issue where I can’t afford to lose anymore. I’’m just wondering if anyone else out there has had this problem and can give some advice? I am looking to find another Doctor here in Melbourne if anyone on here knows of a good one who might have some experience with this type of problem or with j-pouches in general?
Also of note I have been taking probiotics for years which I still manage to find here (ones that Costco in America sell) and they seem to help but I’ve been upping my Lofenoxal meds and taking up to 9 pills of 2.5mg a day to control my bowel.
Thanks in advance for any help and advice and glad I’m able to have this outlet and would be happy to lend support to anyone out there if I can be of any help!