@trishanna It's always good to have someone to communicate with who knows what this condition means....on so many levels. Please do go forward with your plan to see a Urogynocologist. I had considered doing that but since I also had to address the colostomy, decided to seek a highly qualified colorectal surgeon. This man is the 3rd surgeon I've seen since this all began last August. If you refer to my original posts, I've outlined in detail all the incidents that led me to search out someone who I felt confident could find and treat my particular complicated situation. Like you, it's become a circuitous route of 'before we work on this problem we must address that problem, but before we address that problem, we must address yet another problem" and so on. I certainly sympathize with your frustration and anger at finding your self in this place and being forced to wait to begin chemo has to be devastating! I don't have answers to how to better seek out my own fistula location but I am anxious that the day I do the bowel prep before the colostomy reversal, the fistula will again open up. If that happens, this surgery will be cancelled and the search will continue.

My prolapse surgery was 8/20/20, I believe, and my post-surgical visit was 9/10 with the colostomy following on 9/13/20. I was in the hospital for 4 days following that and had home care nurses visiting for 6 weeks afterward. They helped with instruction as to the colostomy care and changing, fitting of the proper "appliance", etc. The woman who had been assigned to me was our angel. I don't know that my husband, my other angel, who did all the ostomy care for the first several weeks, could have managed without her. I had several ER visits in the following weeks, once for urinary retention, once for the ostomy leaking bloody stool, once for blood clot leading to taking Eliquis for 3 months....I finally sought out a different surgeon who did a digital exam in office and later EUA in hospital, neither of which showed the fistula. He seemed unsure as how best to deal with me and even suggested at my very first visit that I might be better served by going to a teaching hospital or larger, such as Mayo. From there I found the surgeon who I hope will be able to answer my quest to be done with the colostomy. I still have the nagging feeling that there will be a reason not to go through with the surgery or that it will be done and major problems arise afterward.....this may be because I have had nearly 6 weeks to think and stew over it, unlike the other surgeries, which were done as ASAP situations.

As far as healing goes, everyone I dealt with were concerned with the healing process. The in hospital treatment was extensive with before dawn blood draws, temperature checks, IV antibiotics, daily doctor visits and post op visits as well as oral antibiotics after discharge from the hospital. The actual healing of my rectum seemed to go as expected after the prolapse surgery and the homecare nurse inspected the ostomy opening at every visit. Home care must be requested by your doctor and because I had a difficult recovery after the ostomy with nausea (antibiotics cause this in me) and being unable to eat, causing weakness, etc. etc. etc. it was ordered. I don't know if just having a new colostomy would have warranted this or not. There was no cost involved for me, even for the ostomy supplies which they provided!!! I could hardly believe I was so fortunate to receive care like that for 6 weeks!

I hope you can get some answers to your plight. I think your decision to see the Urogynocologist is very smart. These days we must become proactive in our care and in order to do that, gain as much knowledge as we can by our own research. That being said, not everyone's situations will have the outcome that yours or mine might and the route they took may not fit your situation. We need to sift through all those online posts and try to find the ones that make the most sense to us. I live in a small resort community and we are a couple of hours from my current surgeon/medical complex. I have always thought that 'it isn't because a hospital is a much bigger building than my local hospital, but rather, it's the staff who work there that make it work. I can't say enough about the nursing staff at my local hospital-I felt the most cared for there than at either of the other two places, even the large complex I as now going to.

I'm wishing you the best of luck. Please don't hesitate to reach out and let me know your progress. I care! I'll listen and will answer you back.