~OYC Trailblazers~ Jennylyn’s Ostomy Love Story in the Philippines

My name is Jennylyn Ajes and I’m 32 years old from Laguna, Phillippines. In 2018, I was diagnosed with stage 2b cervical cancer, which means I had a tumor that had grown beyond the cervix and uterus.[1]

During this time, I had undergone chemotherapy, radiation therapy and brachytherapy. I had to do these therapies for 5 months total and none of it was easy. The brachytherapy required internal radiation therapy to get to the source of the cancer and try to wipe it out.

I felt fine for the first 3 months after treatment but I really struggled with my confidence losing most of my hair and eyebrows due to the chemo. Soon thereafter, I again developed pelvic and vaginal pain so my oncologist ordered a CT scan. The scan showed another tumor and this time my doctor gave me the bad news that this was, in fact, now stage 4 cervical cancer, meaning the cancer had spread to the bladder and rectum. I was in such severe pain that I was unable to use the bathroom normally (to poop).

I was devastated that the cancer had spread. Now my oncologist was advising that I needed to do another 6 cycles of chemotherapy and radiation. I didn’t know how I was going to bear it feeling so weak and with my hemoglobin (blood counts) so low. I was only able to get through 1 round of chemo in early 2019. I have since been put on medications and supplements to help me try to raise my hemoglobin.

MY FISTULA DIAGNOSIS

If that wasn’t bad enough, due to all the pressure in the anal region, the internal radiation therapy (brachytherapy) and the cancer itself in such a precarious location, I developed a rectovaginal fistula. I think this is when it all really hit me. Being diagnosed with cancer in the reproductive organs is one thing; you fight through with positivity and tell yourself you’ll beat it. But that RV fistula, that’s another level of shame, stigma and excruciating pain. I had poop leaking from my rectum into my vagina and I felt utterly and completely dehumanized from it.

LIFE WITH AN OSTOMY

I was bedridden for several months and I struggled a lot with infections due to the RV fistula. That’s when my surgeon created ZOE, my stoma, to allow stool to bypass the rectum (and therefore not pass through the vagina). It was a whirlwind because of how much my ostomy changed my life. It made my life so much easier not having to worry about all the leakage and constant pain. You see, giving a person an ostomy, can potentially allow the fistula to heal as there’s no stool passing there and the rectum is able to rest. However, that hasn’t happened for me yet so I continue to wait to have the fistula repaired surgically. But that requires surgery for the tumor also and finishing my rounds of chemo, for which I need to get my hemoglobin levels higher.

As I wait now for surgery during this time of the pandemic, I’ve come to terms with a new way of going to the bathroom and living with my fistula. My ostomy really, truly saved me. I was in so much pain and suffering extraordinarily before Zoe. Zoe has allowed me to do the things I love and thought I could never do again from driving, to being with my friends, to going to the mall and on dates with my boyfriend. I’m able to eat out, drink coffee (which I couldn’t before), go for walks with my dog and even spend precious time with my daughter who really needs her mother. Zoe has even allowed me to feel a resurgence of confidence in that I can feel like a human being again and dress the way I want to as a young woman again.

STOMA STIGMA

My medical team, friends and family all made me feel so loved and cared for and supported me during some of my deepest states of depression. But I will say I have faced extraordinary stigma too being of Filipino descent and having an ostomy and a fistula. In our Asian culture, there is a major taboo against ostomies and that too for a young woman of marriageable age. I was bullied many times as there is not much knowledge or perspective here about what the ostomy is and how it works. To boot, there is very little understanding of what fistulae are and how they can happen.

I wanted to share awareness around the ostomy and how much it helped me given the tumor and fistula, so I started posting and v-logging about it on social media. And that caused an even bigger backlash. People started to say to me, “eww, you poop out of that thing?!” They would even say things like, “If I had that thing on my tummy, I’d rather die than live.” It was all so hurtful to me but I pressed on because I wanted them to know that I’m thankful to my Zoe for saving me.

FINDING LOVE IN THE MIDST OF TRAGEDY

To me, sharing on social media has been so important. I made many friends too this way and met a whole community of ostomates and I even bonded with Tina over our history of RV fistulas. I also started seeing my boyfriend after having met online. He had no idea about my condition but we continued to talk all the time. Finally, when we progressed to video chatting, I told him about my cancer and my ostomy. To my delight, he was fine with it and said it didn’t change the fact that he still liked me for who I am.

Then came the time when we first met in person. I was very nervous to tell him about my RV fistula but knew that honesty is necessary in any strong relationship. So I told him everything; I even told him that I wouldn’t be able to have intercourse until things are better treated and healed. To my surprise, he wasn’t bothered about it at all. I did mention to him that I understood if he wanted to leave and find another woman. But he stood his ground and said, “It’s not about sex. I want you. I want a future with you. I can wait until you’re healed.”

The second time we met, he took me to his home and introduced me to his family. On our way to his home, he shared with me that his mom has an ostomy too and that’s how and why he understands my life and situation. After all that I had experienced with my health deteriorating, my heart was overjoyed realizing that there are people in the world who are good, kind and accepting.

Last month, before he left for work as a seafarer to Mexico, he asked my father for my hand in marriage and my father gave his blessings. Even today, when I ask him if he’s sure he wants to be with me, he says, yes, and that he will return for me in six months’ time.

OWNING MY HEALTH CHALLENGES

Today, as I await surgery and for my fiancé to return, I have hope again. I feel alive again. Even though I was dealt many health challenges, I am rising above them. If there is one piece of advice I would give to my fellow ostomates as well as my cancer and fistula warriors, it would be to ignore what people have to say and to remember you are worthy and are never alone. If society can’t accept you, other people will and God always will.

So, when Tina asked me how I owned my cervical cancer, my RV fistula and my ostomy, I said by always keeping in mind that having an ostomy is not the end of our lives. It’s only the beginning.

[1] https://www.cancerresearchuk.org/about-cancer/cervical-cancer/stages-types-grades/stage-2