When Tatum Angel was diagnosed with Interstitial Cystitis (IC) – a rare chronic illness that causes pain and pressure on the bladder – she was distraught.
Not only was there no cure for the painful and incapacitating illness, there were also no awareness or support structures to help those affected.
Now after living with IC for two years and taking the brave step of having her bladder removed, Ms Angel wants to share her story to create awareness about the illness that she says is often misdiagnosed.
Ms Angel, 27, who lives in Flamingo Vlei with her husband and three children, describes IC as an “overactive bladder” where the pressure placed on it is so painful “it feels like there’s a brick on your tummy”.
“After my last pregnancy two years ago, I went to my doctor for, what I thought, was a bladder infection. My urine was checked and it was clean. Then I went to the gynaecologist but they couldn’t find anything wrong. The pain progressed because with IC your bladder gets chronically inflamed and it also gets smaller all the time,” said Ms Angel.
What ensued over the next few months can only be described as a living nightmare for Ms Angel as she underwent numerous tests to find out what the problem was.
Several bladder scopes, a diagnostic laparoscopy and removing adhesions are only some of the surgeries the petite woman had to endure.
She said when doctors could not get to the bottom of her symptoms they suggested she get psychiatric help but she refused.
Ms Angel also did her own research to try and get to the bottom of her symptoms and had come across the term IC during her investigations. So when she was diagnosed with the illness in July 2014, she was not too surprised.
“I was shocked and disappointed because I knew there was no cure. I felt like I was coming to the end of the road and I was only 25. I didn’t feel like a normal 25- year-old. At that age many are making plans to do things like travel but I couldn’t even play with my kids because I was in pain,” she said.
Ms Angel said besides the physical pain, the lack of knowledge surrounding IC was another unbearable agony. She eventually connected with other women overseas who suffered from IC and she read their blogs.
“It gave me insight and made me feel less like an alien because I felt so alone. It was definitely a comfort.”
Last October Ms Angel decided to undergo surgery to have her bladder removed. Before this, she says, she was going to the bathroom about forty times a day and this was followed by extreme pressure, pain, urgency and irritation on the bladder.
She had to fly to Pretoria for the operation done by one of only a few urologists in the country who is able to do the surgery.
“The doctor was great. He actually had a tear in his eye when he met me. He told me I was so young and he was reluctant to do the surgery but because he could see I was in so much pain he wanted to give me my life back,” she said.
She said her decision to go through with the surgery was not well received by friends and family.
“They told me I was removing an organ and that I may still be stuck with the pain. But I thought this is my body, my pain, my choice,” she said.
The surgery included removing the bladder then using part of the large intestine to create a reservoir. The appendix was used to create a stoma through Ms Angel’s belly where she self-catherises. She experienced a bout of depression after the surgery because such a natural part of her life such as urinating (the normal way) was gone.
But Ms Angel was determined to beat the illness and speaks candidly about adapting to the new way of going to the loo.
She inserts a catheter longer than a 30cm ruler into her belly button to drain the urine from the bladder that was created. She uses a syringe and saline solution to suck out whatever has been left behind.
She says sometimes there is leakage so she wears an Alterna mini clip to prevent leaks and bacteria but says pads and plasters are also effective. She keeps the catheter, syringe and saline solution in a separate bag that she carries to the toilet. It took Ms Angel a while to get used to the new way of relieving herself.
“I didn’t want to relieve myself in front of my husband but you have got to learn to grow with it,” she said.
Ms Angel has created a Facebook page dedicated to IC, chronic illness and bladder removal. She also created a closed page for those who want to share certain things but don’t feel comfortable sharing it with everyone.
“I was encouraged to share what I was going through but I was reluctant because I didn’t have the energy and time but I thought maybe I should help others.
“I want to help bring more awareness to conduct more research so we can find a cure and know women who are in pain have support,” she said.