POST OP COMPLICATIONS- OSTOMY WAFER ON TOO TIGHT!

Although the surgery seemed to be a quite simple, straightforward procedure, it proved to be anything but that in the upcoming weeks.... 

On July 24th, just one week after surgery, I was rushed to my local hospital by ambulance at 5 o'clock in the morning! The previous day, my homecare nurse (not a WOCN) came by to help with my appliance change. She accidentally brought the wrong size supplies and instead of going back to the office (15 mins away) to get the proper supplies, she proceeded to stretch the opening of a smaller wafer, forcing it to fit around my swollen stoma. Initially, I was worried that it may become too tight and cause problems, but she insisted everything should be fine and that would not cause a blockage. Later on that night I started experiencing severe abdominal pain, similar to pain I had with the blockage on day 3 postop, but significantly worse right around my stoma. I assumed I was just having "normal" postop pain, only being 1 week out, and took 1 pain pill that was prescribed to me after surgery. I had previously been taking Motrin and this was my first time taking prescription pain medicine since surgery.  Around 4am I woke up in excruciating pain! I made my way to the bathroom, to empty my bag, but quickly noticed something was wrong. I sat on the toilet feeling dizzy and nauseous and yelled to my mom for help. She rushed into the bathroom where I was sweating profusely and held on to me, trying figure out what was wrong when I fainted and proceeded to have a seizure. Once I became conscious again, my mom told me what had happened and that she had called 911 and an ambulance was on it's way. I arrived in the Emergency Room around 5:30am and spent hours there with doctors trying to figure out the cause of the pain and seizure. After hours without an answer, I was then admitted and spent the next 24-hrs on morphine in the hospital. The small wafer ended up being the cause of the extreme pain and the seizure was believed to be a reaction to the pain medication and/or dehydration. Although there are no nerve endings in the stoma itself, it was proven that the wafer squeezed too tightly around the base of my stoma (creating a mushroom appearance), closing off my stoma and preventing it from functioning. Following that incident I learned how to change the appliance on my own and trust my gut when I feel something is wrong! 

SURGERY DAY (Loop Ileostomy)

On July 16th, I had surgery at Mayo Clinic (Rochester Methodist Hospital) to create a loop ileostomy! The procedure was a short 45 mins, simply pulling a piece of my small intestine through my abdomen and creating two openings. I stayed in the hospital for 2 days, and then spent an extra day in the hotel before flying home. Having to wear a bag that collects poop, for the next who know's how many months/years, was obviously not an easy decision to make, but given my deteriorating condition, I was left with no other choice. Fortunately, I was lucky enough to meet another girl, around the same age, who went through many GI struggles and lived happily with an ileostomy for a year and a half. I first came across her through YouTube, where I discovered a channel she started , documenting her life with Crohn's, Ulcerative Colitis, and an ileostomy. Her positivity amazed me and we quickly became good friends. She helped me through the many struggles before surgery and continued to support me after surgery.  Seeing my stoma for the first time was a very weird experience. I definitely wasn't angry, more like nervous and excited for the life this new stoma can give me. My family and I were apprehensive, but looking forward to living life without so much pain and discomfort. Although I had seen videos of other people's stomas in the past, it was nothing like looking down and seeing a part of MY intestine hanging out of MY body. Although the surgery seemed to be a simple, straightforward procedure, it proved to be anything but that in the upcoming weeks. Immediately after surgery, my surgeon noticed I had a peristomal hernia and instructed me to wear a 4-inch NuHope belt to prevent the hernia from getting larger. A stoma nurse met with me and taught me how to manage my ostomy both days I was in the hospital. She also set up a homecare nurse to come  and help me with appliance changes in the beginning as well. Surprisingly, I felt pretty good after surgery and was discharged from the hospital on a soft diet and returned to my hotel room. Later that night I experienced extreme abdominal pain and my stoma stopped excreting any output. After speaking with the surgeon on-call and following her instructions, the blockage/obstruction was resolved 8 hrs later.

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.