I have been having rectal bleeding on and off for over a week or more even with cuffitis treatments. The odd thing is I am off antibiotics and my pouch is fine. I have no frequency,urgency, leakage, pouch pain etc.
My only symptoms are, as usual, rectal pain when emptying my pouch and now bleeding (more than just a little bit). I also can tell that the ulcer or inflammation is at the very end of my anal canal (not on the exterior but still close to the anal opening).
For the life of me I cannot tell if this is a fissure or cuffitis. I definitely have discomfort when passing stool and it does linger after and as usual my stricture is rearing it's ugly head, but the bleeding lately is really bothering me. If it is a fissure nifedipine is not helping it heal.
To make matters worse, tomorrow I have to have endometrial biopsy with viewing in the uterus (without anesthesia) due to my thickened endometrial stripe that everyone except my gyno seems to be concerned about.
I am going to restart cipro today to see if this helps with the bleeding and try and contact my GI again. My last conversation with Dr.Shen was to try cortifoam (which I have), and then kenolog injections and balloon dilation for the stricture. He then indicated he wanted to scope me in the future even though my current GI can do the injections and dilation
My current surgeon is against balloon dilation and pretty much has wiped me off the board as every time I contact a nurse there I get zero response from them.
He recommended pouch advancement surgery in October and I informed him I was having a SSO at CC and since then has pretty much been non-responsive. He does not take insurance and I cannot even get the nurse to provide a quote for the surgery nor respond with any questions I have regarding my current treatment's impact on the proposed surgery. I take this as NOT being a very good sign and really feel if I need advancement surgery I probably will end up at CC by default if for any other reason.
I spoke with my surgeon's nurse on Friday and she indicated to email all the information to her (as I always do) and they would meet with my surgeon on Monday (only in office one day now) and of course...still no response which is so typical of his office. I honestly believe they are trying to toss me as I am not a jpouch success case.
I am befuddled at this and was wondering if anyone could offer insight as to what their next steps would be. Would you opt for surgery at CC even though it is 9 hours away? After having my original jpouch surgery canceled twice with my current surgeon and knowing all the post op issues I have had, I am just concerned about having another surgery with the response there even though he is highly regarded and I really hope my post op issues are disease related and not surgery related. No test thus far points to any surgical related post op issues.
I know surgeons are busy people, but when you continually get no response, I think the message is they are hoping you go elsewhere. It is very discouraging.