Binny*, a 57 year old woman from Mumbai shares her experience of living with a stoma bag after a diagnosis of Colorectal Cancer and the lifestyle changes she has to make to live life to the fullest. And practical and useful tips on travel, diet and clothing when living with a stoma.
Please tell us a bit about your condition. Can you describe it?
I am a colorectal cancer survivor. I have had colostomy surgery (called Abdominoperineal Resection) in which a part of my large intestine (colon) was brought to the surface of my abdomen to create an opening called a stoma. Through this opening, stool (waste) passes out into a pouch (stoma bag) attached to my abdomen. This is because the normal passage through the rectum was removed during surgery
When were you diagnosed?
I was diagnosed with Colorectal cancer between 2nd and 3rd stage in July 2017. I was 49 years old at the time.
What were the early symptoms? What made you go to a doctor?
In my case, there were no clear symptoms at first. On 2nd January 2017, I felt a little breathless, so I went to see my family doctor. Since he was not in town, I returned home. Soon after, I fainted, and my son took me to a nearby hospital as advised by our doctor. The attending doctor suggested keeping me under observation in the ICU. After some tests, it was found that my hemoglobin level was only 5, so I was given a blood transfusion. I had a history of post-pregnancy piles that had gone away; and a few episodes of anal abscess. The doctor advised an MRI, which showed that I had a fistula. They suspected Crohn’s disease, which may still be there today in a mild form.
I was then referred to a colorectal specialist at a private hospital, who performed fistula surgery. However, the fistula did not heal properly, and a second MRI showed recurrence. I underwent a second surgery, and a biopsy was done, but it showed no signs of cancer. When the fistula returned again, a third surgery was performed. This time, the biopsy confirmed Mucinous adenocarcinoma (cancer) of ano rectum.
What was your reaction to the diagnosis? How and when did you break it to your family?
I had gone alone for my follow-up visit. I collected my report and waited at the clinic. When my turn came, the doctor asked me to wait, saying he had something important to discuss. As soon as I entered his cabin, he told me that the report showed I had cancer. He himself was shocked. I was speechless and completely numb. Realizing that he had told me too suddenly, the doctor tried to comfort me. My husband was not in town, so the doctor called him and explained the situation. He asked my family to meet him after two days. He also told me to collect some samples from the lab and get further tests done for confirmation. I was in shock — tears started rolling down my face, but somehow, I managed to go to the lab, finish the formalities, and collect the sample. Then I took a cab and went home. When I reached home, my son had just returned from college. I spoke to him about the diagnosis. I was deeply worried about his future because it was his final year of studies. He immediately searched online and told me that in my case, since the cancer could be removed by surgery, the survival rate was high. He stayed positive and strong, giving me a lot of courage and hope when I needed it the most.
What happened next? (specialist referral, course of treatment etc.)
We took second opinion at another private hospital. Then I underwent colonoscopy and PET scan, and decided the date for surgery for August 12th 2017.
Line of treatment was:
- Surgery
- Followed by radiation 26 set along with an oral chemo pill called Capecitabine
- Followed by 6 cycles of chemotherapy
- 21 days gap followed by chemo drug oxaliplatin
What medications are you currently on? Pls mention all allopathic, supplemental, herbal and any alternative medicines and indications of each.
- Atoravastatin 10mg for cholesterol
- Saroglitazar 4mg for my liver
- Mesalamine 2mg for Crohn’s disease
- Thyroxine 100mg for low thyroid
- Telmisartan 40mg for high blood pressure
- Multivitamin
Were there any side-effects of the medicines? If yes, how do you manage them?
- Numbness in hand and feet during chemo. I do feet exercises for it.
- Ulcers in small intestine caused bleeding during chemo.
- Sometimes burning sensation in rectum area.
- Urine incontinence. Doing Kegel exercises for it.
Do you have a family history of this condition? Is it an inherited disorder? Was genetic testing done?
No family history. My oncologist said my condition is not hereditary.
What were some of the challenges you faced
Travelling or going on trips used to be one of my biggest challenges. Finding a suitable washroom while on the move was difficult, and deciding what and when to eat during travel was also a struggle.
What changes have you made to your lifestyle because of this condition?
My food habits have changed. I’m now very conscious about what I eat. I focus on including enough protein, vegetables, and fruits in my diet.
Since most people with stomas are prone to hernias from weak muscle lining, and urine incontinence, I do kegel exercises every day. I plan my travels well in advance and do a colon irrigation or enema that gives me relief for 12 hours. I avoid staying and eating at hotels, often carry my own meals that I make beforehand. I stay informed about issues related to ostomy, trying to contribute and support fellow ostomates whenever I can.
How did you mentally/emotionally cope with it all? Pls mention any specific times and issues that were difficult.
I started diverting my thoughts and keeping myself busy. I resumed giving tuition classes in June 2018 after a few months. I joined the Ostomy Association and began writing blogs on ostomy-related issues, sharing them with the community. I also conduct webinars for the ostomy community and continue to do so. Additionally, I started a support group to help fellow ostomates like me. You can contact us at ostomyindia.com . Email id is ostomyindia@gmail.com
How has your family supported you? Who has been your biggest support/companion through it all?
My husband and son were my biggest support.
When did you break the news to your friends and distant relatives? How did they take it?
I have not discussed my issues with my friends and distant relatives.
Since it was very difficult for my husband to cope with the situation, I decided to disclose everything to my sister-in-law. She was the only person who could emotionally handle him, and she stood by us like a pillar of strength. Her support helped me realize one thing — if I break down, my family will collapse. I knew I had to stay strong, not only for myself but for everyone around me.
I also made a promise to myself: I never wanted society to look at me as a “cancer patient” with sympathy. I wanted to be surrounded by positive people, not pity. That mindset gave me tremendous inner strength.
After surgery, life was not easy. Managing the stoma was challenging — bag leakage, smell, frequent bag changes, and the constant fear of embarrassment. But even then, I never wanted to depend on anyone.
I kept telling myself again and again:
“I am normal.”
“This is a phase.”
“This will pass.”
With time, I joined the ostomates community. That was when I realised how much taboo is attached to ostomy — people being told not to visit temples, not to pray, not to socialise, and to keep themselves away from others because of fear and embarrassment. It was heartbreaking to see that so many were suffering silently.
What is your present condition?
I’m slowly getting back to my life, taking small steps and trying to do things the way I used to.
What is your advice to patients who face similar challenges?
A stoma bag should never stop you from living life to the fullest. Your life may not be the same as before, but that doesn’t mean it’s worse. Stay strong, take small steps, and gradually find your way back to normalcy.
My advice for travelling:
- Change the stoma bag right before leaving, so you don’t have to change it for the next 4-5 days.
- Always carry extra bag and cleaning supplies. Make sure to cut your bag beforehand since scissors are not allowed on flights.
- Learn to keep track of your stoma output's timing and signs (like subtle bloating, or a feeling of pressure) for predicting your and planning your daily activities.
- Learn to change your bag on your own.
- Wear the peristomal hernia belt esp since it helps while walking.
- Watch your diet. Eat simple to digest foods like plain khichidi. Carry home-made meals or snacks like protein bars/laddoos/shakes.
- Don’t overeat. Avoid raw salads.
- Eat your meals on time.
- Choose to stay at accommodations that have a kitchen so you can prepare your own meals.
- Break long car, train or air journeys by staying overnight.
My advice on what to wear:
- Wear comfortable loose clothing
- If you wear sarees- wear long blouses, put the pleats on the side and pin up properly.
- Try ready-to-wear sarees that are easy to wrap around.
My advice on diet:
- Avoid foul-smelling and gas-producing foods.
- Avoid foods that can get stuck in the pouch if not chewed properly like corn and ground nuts.
- Chew your food properly so it is digested and absorbed in the absence of your large or small intestine. Undigested food may also lead to cramping and emergency room visits if it obstructs the colon.
What are you worried about for the future?
Yes, I feel worried about the possibility of the illness returning and about growing old. The thought of becoming dependent on others gives me chills.
