Mayo Clinic's Biofeedback Program Update

Hi everyone! I apologize for being MIA for the last 6 months! Honestly, I wrote a very long post on May 19th, after I completed the biofeedback program at Mayo Clinic, but somehow the message did not save and everything was lost. I have considered posting about the 2nd week of the program for a long time, but I just can't bring myself to do it right now. In a nutshell, the program was a complete failure for me and I would not  necessarily recommend it to others. Unless changes were made in the last 6 months, the program has many flaws and there is extremely poor communication between the nurses and doctors. I left feeling SIGNIFICANTLY worse than when I started the program. A repeat Anorectal Manometry (ARM) test was performed 2 weeks after completing the program and it proved that my level of dysfunction had significantly worsened. Unfortunately, the nurse I was working with allowed my condition to worsen, from the beginning, without contacting my doctor once! I can go on for days about the flaws in their system, but the two main issues were poor communication and structure. By structure I mean unwillingness to alter the program protocol to fit individual patient needs. Please feel free to message me if you would like to know more about my experience with Mayo Clinic's biofeedback program.

Following the unsuccessful biofeedback program, my condition continued to worsen rather rapidly. I had already been enema dependent, but the enemas stopped working and left me miserable with no other option but surgery. In June 2013 I underwent a slew of testing to figure out some kind of solution. Testing involved multiple Anorectal Manometry (ARM) tests, an MRI Dynamic Proctography test, a Gastric Colonic Transit study, a Colon Manometry study (6+ hrs) plus additional testing for a research study and cardiac imaging for an ongoing pericardial effusion. The Colon Manometry study was by far the most miserable, painful, and invasive procedure, but my colorectal surgeon said I needed the test to determine the next step. The test was performed June 20th and revealed that I had very little colon function. Obviously this was a very scary result, but none of my doctors described exactly what the results meant. Surgery became my only option, it was just a matter of which surgery to choose from. The options were colectomy (complete colon removal), with a permanent end ileostomy or a temporary loop ileostomy. In the end, we collaboratively decided a loop ileostomy would be my best option, with the hope that someday, somehow my colon and pelvic floor would start working "normal" again.