My ostomy journey started in May 2018 when I was 57 years old. I am a high school teacher and I was in class when I was overcome with back pain and nausea. I barely made it to the bathroom, leaving a wake of shocked students in my path. I knew something was wrong so I went to urgent care. They diagnosed a kidney stone but wanted me to go to the hospital for further testing. I received a CT scan, x rays, bloodwork, etc. I tested positive for a UTI and they saw some fibroids, but everything else was clear. They prescribed antibiotics and suggested I follow up with my PCP and gynecologist, which I did. My PCP saw evidence of a lingering UTI and offered to prescribe more antibiotics.
This experience is more common than you would think and one reason many women have more dire outcomes when diagnosed with bladder cancer. My gynecologist scheduled an ultrasound at the beginning of July. Around 8 am the following day, the doctor called. They found a mass and wanted me to see an urologist immediately. In fact, they called me later that day to make sure I followed through. The urologist performed a cystoscopy the following week.
Naively, I went to the appointment alone. I do not remember him saying it was cancer. I do remember the look he and the nurse gave each other and the doctor apologizing for giving me such bad news. They scheduled a TURBT, a transurethral resection of a bladder tumor. This is typically an outpatient procedure. I was in the hospital for four days. The tumor was large and the doctor could not get all of it. Scans indicated it had spread outside the bladder but pathology was inconclusive. This is when I first heard I might need to have my bladder removed. Two days after I left the hospital, I returned for a second TURBT. The outcome was the same so we decided I would be referred to Dana Farber/Brigham and Women’s Hospital in Boston.
At this point in time, I was still dealing with the cancer diagnosis. The week I was diagnosed, my son and daughter-in-law shared the news that we were going to have our first grandchild. Would I be here for his birth? I was scared but I had a great support system. Cancer, while frightening, is something most, if not all, are familiar with. My own family was affected by it. Some of my friends are survivors. People rallied around me. I could relate to their experiences and had hope. Dana Farber is an amazing institution. I was being cared for by the best in the world. We were still trying to determine the stage of my cancer. All scans were inconclusive. My new urologist, an oncology urologist surgeon, would perform yet a third TURBT. While we waited for the pathology, we prepared for chemo and radiation. Ironically, if we received good news and the tumor had not spread outside of the bladder, I would need to have my bladder removed. If the tumor has spread, there is no cure and we would look at chemo, radiation, and palliative care (not to be confused with hospice care). Both choices were devastating to me. I met with my medical oncologist who shared the news that the cancer had not spread. I would not need chemo (which was scheduled to start the next week!) and my oncology urologist would be in charge of my care.
Having a radical cystectomy is life-saving surgery. By having my bladder removed, I could also ensure my cancer is removed. The thought of having a urostomy horrified me. When first discussed, I actually asked what would happen if I did not have the surgery. I would not survive. Unlike my cancer diagnosis, I had no reference about having an ostomy. I had honestly never heard of it. The idea of having a bag of urine hanging off my belly devastated me. I fought to keep my bladder so we tried a course of BCG treatment. BCG, or Bacillus Calmette-Guerin, is the treatment used for bladder cancer. It is placed in the bladder and held for 2 hours. Once a week, for 6 weeks, I received a dose. 6 weeks later, I had another cystoscopy where several new tumors were discovered.
The time had come to decide life or death.
I decided I wanted to live so we scheduled my radical cystectomy for January 25, 2019. My preference was for a neobladder but, because of the location of the tumor, I was not a candidate. I would need an ileal conduit. I could not talk about it without crying. I thought I was going to be a freak. I offered my husband a divorce. Unlike with my cancer diagnosis, I did not feel I had anyone I could turn to. I could not have been more wrong. The first group that helped me was the Bladder Cancer Advocacy Network or BCAN. My Dana Farber oncology urologist told me about the organization during my first visit. To be honest, it took me a long time to even be ready to visit the site. My daughter did and encouraged me to visit. They were both right. It is such a valuable resource. I signed up for their Survivor to Survivor program. I was able to speak to someone who had the same diagnosis and surgery I was going to face. Members shared advice and support. They actually have a document of recommended supplies to have on hand for after your surgery. For the first time, I had an idea of what to expect and was able to take some control.
Another particularly helpful resource was the Brigham and Women’s Hospital Pre-habilitation class. I was able to handle ostomy supplies and learned what pre and post surgery would entail. While I was still scared (this is major surgery) I was getting a handle on things and decided I would take control. I went into surgery with a sense of calm. Right from the start, I decided I would be the one to change my pouch. Except for when I am working with my ostomy nurses, no one else has changed my bag.
Don’t get me wrong; things were not easy. A radical cystectomy is considered one of the most complex cancer surgeries. They remove and rearrange several body parts. I was able to participate in an ERAS, Enhanced Recovery After Surgery, program at Brigham and Womens. No bowel prep and they give you a high carbohydrate drink prior to surgery to keep your bowels active. Narcotics and fluids are limited during surgery. You walk as soon as possible. They also allow regular food by day two. As a result, hospital stays are shorter. My stay, in spite of needing a transfusion, was only 4 days. I was walking the day after surgery. I was weak but, with each lap around the nurses station, I was able to lengthen my walk. Anemia continued to be a problem for me when I returned home and I did require an iron infusion. After that, things improved steadily. Pain was not an issue. They did not do a spinal for anesthesia. All of my pain was managed by Tylenol.
I had a few issues after my surgery: I needed a blood transfusion and an iron infusion, and the skin around the staples became infected. That was the source of the most pain I experienced and a harbinger of the skin issues I would continue to experience. It actually took me over a year working with the BWH ostomy nurses to find a combination of equipment that would allow my skin to heal and remain healthy. I cannot say enough about finding an ostomy nurse to help you, especially at the beginning.
I was worried about experiencing giant floods while leaking. Most of my leaks occurred at the beginning and mostly at night. I was advised to buy waterproof mattress pads, which have been a Godsend. I would wake up with a wet nightgown, not a complete flood. Usually, one side of the flange or faceplate would have come loose and the urine would leak from there. More frequently, leaks occurred due to user error. I would forget to close the cap at the bottom or the tube would disconnect from the night bag. After more practice and by experimenting with equipment, I was able to find what worked for me. I was worried about returning to work and having a blowout there. I am a teacher and I envisioned standing in front of my class and having a flood of urine drench my clothes. This has never happened. In two and a half years, I have had one small leak at work. I keep supplies and a change of clothes at school and was able to change my bag and clothes and return to class in about 15 minutes.
I do make sure to stay hydrated. I have more UTIs than I did before, one of which went septic. I try to be more aware of what is going on with my body. I change my bag every 3 days. Any more time between changes leads to irritated skin around my stoma. I am careful about what I lift because I am afraid of getting a hernia.
All of the horrible things I imagined happening never materialized. I honestly did not believe people who described things as becoming normal. I don’t know how else to say it. Having an ostomy is really not a big deal. I just go to the bathroom differently than I used to. I don’t have to sit on gross toilets. I can sleep through the night because I use a night bag. I often use my night bag in other ways as well, like long car trips and long movies. I was one of the only people in the last Avengers movie who was able to sit through the whole movie! Hikes in the woods….no problem. I wear all of the same clothes I did before. I even wear 2 piece bathing suits. I can do everything I did before: I teach full-time, hike, paddleboard, swim, bike, etc. I walk at least 4 miles a day. My friends tell me all the time they forget I have an ostomy. Sometimes, I do too. Most importantly, I am cancer-free.