Azizah Azman skips rope, plays badminton, and has even started inline skating – all while living with a stoma. (This, by the way, is an opening on the abdomen that connects to the urinary or the digestive system to allow waste such as urine or faeces to exit the body. If you had surgery to remove part of your large intestine, you might need one.)
If not for the fact that COVID-19 halted almost all events in Singapore, the feisty mum of two (whose children are 8 and 13 now) would have taken part in the Spartan Race as well. That’s a gruelling endurance race where participants navigate obstacles such as climbing up a 4.8m rope, and traversing a wall using only small hand and footholds.
It’s a tough challenge to conquer even at peak fitness but to do it while wearing a stoma bag that’s carrying your internal waste? Azizah can, and will, one day. “I’m a badass,” the 35-year-old customer service officer states matter of factly.
She wasn’t always so positive about living with a hole in her body. But having gone through colon cancer twice – the first time at 29 years of age – Azizah is sanguine about her situation. “I’ve learnt that it’s okay not to be okay.”
The first diagnosis
“I was first diagnosed with colon cancer in July 2015, when I was 29 years old. I was having constipation and diarrhoea quite often. There was blood and mucus in my stools. Sometimes, I would feel excruciating pain in my lower abdomen. I also lost 8kg without dieting or exercising.
I saw a general practitioner (GP) and went to the emergency department (ED) at the hospital thrice, but each time it was passed off as normal diarrhoea or constipation.
By that time half the year was gone and I had already used up 12 days of medical leave. But my manager (bless his heart) was so worried for me, he pushed me to see our in-house GP and got me a referral with a private specialist within a few days.
Immediately after the appointment, the specialist gave me a liquid to drink to clear my bowels for an emergency colonoscopy. Within a few hours, I was in and out of the procedure room, and he broke the news that I had cancer. Within that week, I had a scheduled surgery date for the tumour removal. After that I had eight cycles of chemotherapy, and 20 sessions of radiotherapy.
The relapse happened five years later, in October 2020. I experienced the same symptoms as before, and lost my appetite as well. However each time I walked into the emergency department at the hospital, it was again passed off as diarrhoea.
On the third visit, I requested to be admitted for further tests as I had a nagging feeling that the cancer was back. During this hospital stay, I had a colonoscopy done and yes, my gut feel was right. The cancer had come back.
This time things were more complicated. The tumour was big (about 5cm) and it was close to my reproductive system. I had to go through radiotherapy first to reduce it. As this would be my second time going through radiotherapy, there was a possibility that my colon might rupture. Hence, the doctor gave me the option of stoma surgery first, to decrease the chances of rupture.
After the stoma surgery in November 2020, I went through 28 sessions of radiotherapy and chemo (tablets). This was followed by major surgery which lasted 11 hours, during which the tumour was removed.
My entire reproductive system – uterus, fallopian tubes, and ovaries – was also removed as the tumour was too close to it, and there were concerns that the cancer might spread. After this operation I had another eight cycles of chemo.
Managing home and health
My mum, and my husband Arry, 40, took turns to care for my children. My husband left his stable job with 24 hours notice. He took up a food delivery job, and later become a taxi driver so he could have flexible hours to care for me, and bring me for my chemotherapy and radiotherapy sessions, and doctor appointments.
During my first diagnosis, my son was only 20 months old, and he was fully breastfed. I was devastated that I had to stop breastfeeding him. He lost so much weight. It took a lot of time and effort to switch him to other milk.
My daughter however is a trooper. She was seven (Primary 1) and 12 (Primary 6) during my two cancer bouts. I’m blessed to have a daughter like her, who is responsible, smart, and independent.
She helps with the house chores, cares for her brother, and does her school work without being told. Even then, she broke down a couple of times. I’ve always made it a point to remind her, ‘I’m fighting this cancer for you, your brother, and Baba. I need you to concentrate on your studies so I will be less worried about your studies, okay?’
Living with a stoma
To be honest, I saw it coming. During my first operation, about 20 cm of my colon was already cut. So when my surgeon told me that I would need a stoma after the second tumour removal, I wasn’t surprised, just depressed.
After multiple surgeries, chemotherapy and radiotherapy sessions, the muscles and nerves around my colon and rectal area had become weak. Having a stoma was inevitable. If not, the likelihood of accidents was high because my rectum was not strong enough to “hold” the poop.
After the surgery, I showed my stoma to my children. I explained to them that because of the cancer, and because my colon was too short, I had to poop into a bag. They were shocked initially, but got used to it after a while.
At first I had a retracted stoma, and poop would leak out without my realising it. Hence I had to often check on my stoma because faeces on the skin can cause irritation and create an open wound.
This is painful because you can’t treat it with any random ointment or cream, or even put a dressing on it. It went on for a few months until I requested my doctor to revise my stoma.
The hardest thing about wearing a stoma bag
The most challenging thing is when my husband is changing my entire stoma set but poop keeps coming out of it. It’s a real struggle because he has to constantly wipe and clean and restart the process. It is a hassle, but you have to do whatever it takes to avoid infection.
Another challenge is the cost of all the equipment needed. Healthcare is expensive and a month’s supply can vary from $200 to $400.
There is also limited information available locally regarding anything about stoma. I had to research about it and the information came mainly from European or American creators. At that time I really struggled to find anything to help me out.
Battling stoma insecurity
My first few months with the stoma overlapped with the school holidays. But I didn’t spend much time with my kids because I was cooped up in my room, still insecure about my stoma. I didn’t attend social events because I was afraid there might be leakage, and I had no confidence in myself to cope with that.
In addition I was still insecure about the way I looked. I gained about 15kg because I developed a phobia of being active. I was afraid that I might injure myself. As a result, my old clothes didn’t fit me anymore.
Besides this, I have to wear a belt 24/7. This is because I have flabby skin folds – yay motherhood! – and the belt ensures that my stoma equipment stays in place.
(See also: Telling my Children that I have Cancer)
I felt unattractive, especially towards my husband, but he always reassured me, telling me that he loves me just like before, and that he still finds me attractive.
It got better once I got my stoma repositioned, and there wasn’t any more leakage. I bought new clothes to treat myself. My confidence gradually grew as I psyched myself up, telling myself that I need to suck it up and face the world. I recently returned to the workforce after being on hospitalisation leave for over a year.
Since my stoma is permanent, I named my stoma ‘Stomy’. Sometimes when I’m in a quiet room or having conversation, it likes to fart. There’s a sound, but thanks to the filter on the stoma bag, though, there is no smell. Instead of being ashamed or embarrassed, I will just say, ‘Sorry, that’s my stoma, it has a mind on if its own.’
Life with a stoma
Other than having to cater to my stoma bag, my daily schedule is normal, with chores and self-care.
I need to empty my stoma bag several times a day. Usually, I will empty my bag when its about one-third full, to avoid any leaks. At the same time, I need to keep a lookout for abnormalities, check on the colour and texture of the stool, and whether there is any broken skin. I also check on the stoma colouring; is it bright red/pink (normal) or pale blue/black (visit the emergency department). I change my stoma set every five to seven days.
When I am out, before emptying my stoma, I need to scout for the toilet. I usually would use the one for the handicapped, as it is generally clean and spacious, with a sink (in case of accidents). Sometimes I get dirty looks for using this toilet, as my condition is not visible.
I carry a haversack everywhere I go. Apart from my personal belongings, it holds a set of clothes, two sets of stoma supplies, wet wipes, and tissues.
Generally, I can eat anything I want, in moderation. I love spicy food, but I have had to tone down or I will suffer the consequences – diarrhoea the entire day, gassiness, and bloating. Imagine being in a meeting, passing gas every 10 minutes… It’s not fun.
Dealing with stoma bag accidents
The maximum time that I dare to stay out is two to three hours. The first thing that I do when I arrive at any place is to look for a toilet for the handicapped in case I need to empty the stoma bag. If there isn’t one, I will cut short my activity and go home early. As a last resort, I will use a normal cubicle.
One time, when my husband dropped me off for my doctor’s appointment, my dress and part of my stoma bag got hooked onto the side door of the car. I didn’t realise it until I looked down. My stoma bag was on the ground! I picked it up and ran to the toilet. Luckily, I bring an extra set of clothes everywhere I go.
Since that incident, I developed the habit of holding onto the stoma bag, just in case. Recently though I tried a new stoma bag called the Sensura Mio. This has a two-piece snap clasp which is very secure and tight. It gives me better peace of mind knowing that the stoma bag will not suddenly fall off.
Living a full life with a stoma bag
The most significant change in my life recently is that I started rollerblading with my family. In an effort to become more active, I also fit in small games of badminton and skipping rope. I used to do the Spartan Race every year, but it was cancelled because of COVID-19.
I’ve learnt that I’m a badass. I will always persevere and push through every obstacle, for my children and my husband. I’ve also learnt that it’s okay not to be okay. Learn to manage your feelings and express yourself. Choose what you’re comfortable with, and work with it.
Advice for stoma bag wearers
It will be a struggle at first but once you get the hang of it, things get better. You’ll need a good support system to help you. This can be your parents, significant other, children, friends, or a social worker. Surround yourself with positive people.
Knowledge is power, so read up as much you can about living with a stoma. Videos on YouTube helped me.
You can also reach out to the Ostomy Association of Singapore, which is made up of volunteers and ostomates, for support. Finally there’s Coloplast , an ostomy products vendor. Coloplast has a care program that includes two free home visits to provide advise and support on stoma care.”
All images: Azizah Azman