My Sidekick Sheba

When I was diagnosed with cervical cancer, I never imagined the journey would include a new sidekick! I finished stage 3B cervical cancer treatment around August or September of 2018. About three months after treatment, I began to experience trouble going number two. It was the worst feeling ever. The times when I could go, it was excruciating, and with plenty of blood. I started to go number two again, but the weirdest thing happened. It was coming from my vagina. I had developed a fistula due to my radiation treatment. 

I went into the hospital immediately and was admitted from December 31, 2018 until January 16th, 2019. During that time, they inserted a nutrition PICC line, checked my stool, inserted a catheter, and prepared me for surgery to remove some of my bowel and colon. My doctor explained that there would be a possibility that I would get a colostomy and he may remove my uterus, but it depended on the damage they saw inside. When I woke up, I was informed that the surgeon had removed my right ovary and fallopian tube, and I had a colostomy bag.

The nurse gave me care instructions and I learned to care for my new sidekick. I went through stages of confusion, anger, fear, and insecurity. After getting used to it, I named it, Sheba, and called her my sidekick. I’m a bit more comfortable with it now, but sometimes I still struggle with public participation because of how active it is. 

I’ve been diagnosed with body dysmorphic disorder since receiving it because of my constant worry about how I look with a shirt bulge or certain things that I now become obsessed with. Although I’ve gone through these struggles, I’ve learned to appreciate having my colostomy bag, as it has saved my life. I feel better knowing I can use the bathroom without getting infected or hurting myself even further. 

I get better each day as I learn and grow. I am living and taking it one day at a time, as I make new goals and step out of my comfort zone. I wouldn’t have it any other way. I am a CERVIVOR!

Kyana Johnson resides in Orangeburg, South Carolina. She is a stage IIIB cervical cancer Cervivor, colostomate, and Marriage and Family Therapy student. Cervivor has always been Kyana’s safe space, information hub, and a great place to come together for a cause greater than us. Cervivor is her inspiration for her advocacy efforts. 

When Cervical Cancer Side Effects Bring Life-Altering Changes

After completing my oncology protocol and hysterectomy for my cervical cancer, I developed a rectovaginal fistula. This meant that due to the radiation I received, my colon and vaginal wall merged. I like to think of it as when you burn two plastic sheets together, they become one. At some point, a tear began to form, and it developed into a fistula. 

How did I find out about the fistula? I can’t pinpoint the exact moment, but if I look back, I do remember a very sharp pain after I sneezed about four weeks after my hysterectomy. Later that week I noticed a different color in my urine and some pain each time I went to the bathroom. I called my doctor and he said he would like to check it out. By the time I went I was passing small clots, I was unaware if it was due to the surgery or an infection. When the doctor ran his tests, and the pelvic exam being the most painful one, he confirmed that a fistula had been formed. It was about one centimeter in diameter. 

Photo from GynecologicSurgery.com

A week after my initial exams, I started passing stool through my vagina. That part of it has been the most horrible part of my life after cervical cancer treatment. I was told to wear diapers during this period, but I didn’t want to, so I started using maxi pads. I would be needing to change them at least 4 times a day. Going to the bathroom was painful and uncomfortable. I was battling pain and infections during the next couple of months until all testing was completed to see the course of action my doctors wanted to take. I started carrying an extra pair of jeans and 2-3 pairs of underwear because of the accidents. Doctors told me not to go to work during this time, but I really didn’t want to stay home. I needed to be doing something to take my mind off it. I made a strategy plan; I parked my car next to the nearest bathroom at my construction site. That way it was easier to get to my emergency bag and I had my brother working close by so I would call him up if I had any accidents that might require extra assistance. I also told two of my male coworkers what was going on with me just in case anything went wrong. 

The most traumatic moment for me was when they had to perform the colon enema test on me. I remember I was that table being pumped full with barium and then just noticed my legs getting wet. I began crying and told the doctor that I was peeing myself. He said, it’s okay and they can clean it up. But I couldn’t stop crying and then I started to panic. He put his hand on my head and told me to breathe, he said he knows how painful this is but he needs to find out what is going on. When it was over, there were nurses in the room cleaning me up, that’s when I noticed that the bed and the floor were covered in my feces and barium, that came out of my vagina. To this day, it has been the worst experience I have ever had. 

I remember changing in the examination room stall crying, feeling embarrassed, and with the desire to hug my brother who was waiting for me. There have been many beautiful things in my life, but that hug, that hug made me feel so safe. The doctor explained the extent of the damaged I had and that my surgeon would recommend getting a colostomy. 

I am grateful for my colostomy, it has made my life less complicated. 

Karla with her brother

Living with a tiny fistula, has changed my life, but has not stopped it. I did try Crossfit for two weeks but had to be checked since I started bleeding a bit, which showed that the fistula had become larger. So, now I stick to low impact activities, like walking and stretching. I have little to no infections and luckily I am off Tramadol and Dexketoprofen, which was the protocol I had for pain management.

My fistula is still here. In my last exam the doctor said it was barely detectable. I am still not sure if it will heal, statistics do not support this idea, so we know that my ostomy is becoming permanent. Which I don’t mind.

Karla Chavez is a Cervivor Ambassador, Cervivor Español Co-Lead and a 2022 Cervivor Champion Award recipient. Karla is a civil engineer in her home country of Honduras and she’s an amigurumi enthusiast.