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Submitted by PatientsEngage on 3 February 2018
Colorectal Cancer Survivor Nita Patel sitting on a chair in a house coat that hides her colostomy bag with her husband

Nila, 80 from Ahmedabad talks about how a mild gastro issue led to a life altering diagnosis of Colorectal Cancer and how she learnt to live with a colostomy bag and a modified lifestyle. And her coping mantras.

Please tell us a bit about your condition

I had Colorectal Cancer and now have a permanent colostomy bag attached to me. I was diagnosed in summer of 2016.

What were the early symptoms?

It all started with sudden onset of diarrhea. This was very surprising because all my life, I have never so much as suffered from a headache or fever. After 2 days of it, I went to see my GP about it. He gave me some meds and it worked. However, 2 days after that the diarrhea returned. This time, I visited a Gastroenterologist who put me on more medications. He also educated me on the need for regular check-ups after the age of 50. Since I have always been healthy, I never saw a doctor or did any check-ups. He suggested a colonoscopy after my diarrhea subsided.

I remember 2 doctors being present for my Colonoscopy and how they had argued over what they saw. One seemed to be adamant there was a suspicious lesion while the other dismissed it. The biopsy revealed a tiny seed-sized anomaly and I was diagnosed with a Stage III Colorectal cancer.

Is there a history of cancer in your family?

No, there is no history of any type of cancer in my family.

What is your present condition?

I am comfortable and continue to do my daily routine around the house. I realize that age is also catching up with me, so I do avoid excessive social engagements, long travel and exertion.

Please describe your experience of managing the tumor.

Soon after diagnosis, I was put on chemo-radiation for 5 weeks. The first 4 weeks went effortlessly; I could walk on my own (often leaving my husband behind) before and after all my appointments. I had no side-effects of the treatment up until the 5th week, when weakness set in. After completion of 5 weeks, my doctor told me everything was cleared!

Around that my nephew, who happens to be a Surgeon in the US was travelling to India. He came to meet me, reviewed my reports and insisted that all of my remnant tumor should be removed. He discussed it with my doctor and soon scheduled a surgery. My doctor was reluctant to operate on me due to my age, I presumed.

Can you tell us a little bit about your stoma and managing with colostomy bag.

Before my surgery, I was told that a stoma (opening from the intestine to the outside) would not be required. However, during surgery, they found the tumor in close proximity to the anal sphincter and anal canal, so a stoma became necessary. I was quite upset initially when I saw the stoma on my left side. During my 20 day post-operative hospital stay, the nurse taught me how to manage the colostomy bag (a bag attached to the opening where the stool can drain into).

When I got home, I hired an Aide/Nurse to come home once a week to change the colostomy bag. He also did my wound dressing at the time. He still continues to come home. He cleans the skin around the ring of the stoma, applies cream, checks for any problems and changes the stoma ring and bag. I have never had any leakage or bad odor issues. During the week, I do clean the bag every night with warm water and tissues.

At home, I prefer to wear a house coat or long maxis. I have stopped wearing sarees for the most part. I have slowly learned to accept and manage the stoma and the bag over the past year.

What diet were you advised?

No specific meal plan was advised. I was never offered a dietitian either. I got back to home-cooked meals after surgery.

  • Spicy and outside foods were not recommended to avoid any diarrhea and food poisoning.
  • Lots of black dates, yogurt, cheese and salads were suggested by my doctor.

Do you have other medical conditions?

I have Hypertension, Diabetes, Acidity and have been operated for Cataracts.

What medications are you on?

I take medications for high BP, diabetes, calcium supplements, and multi-vitamins.

What were some of the challenges you faced and what is your advice to patients who face similar challenges?

My advice to other patients would be:

Avoid stressing. Stay positive through it all!  Worrying about what will or may be is mostly futile.

What kind of specialists do you consult and how often?

I last saw my doctor 10 months ago. I am due to see my doctor next month. Future follow-ups will be as he advises.

What resources are available to you in your city to help you manage the condition?

I live in a big city so had all the resources available to me.

Have you had to make some changes to your lifestyle because of your condition?

Yes, I used to cook all our meals but have now employed a cook. Also a gardener comes to tend to my garden. Earlier I would wake up at 5:30am and do brisk walking daily for 2.5kms. This has now stopped as I have also developed soreness on my right shoulder and back stiffness when standing and walking. Long distance travelling has also come to a halt as car, train or flights are tiresome and bother my back.

Has it been difficult emotionally to cope with your condition?

I have always been a strong willed person, so I got through it quite well. Because of early diagnosis and minimal symptoms, it has been a relatively smooth journey. I do wonder why and how this has happened, but have accepted that life is unpredictable.

How have your family and friends supported you?

My husband has been by my side the entire way. He however has never handled my colostomy bag. My loving daughter has flown down multiple times from the US to be with me. My son-in-law and grandkids check up on me often.

Friends have all been supportive.

Did you see a counselor for support? Were you offered counselling by doctor?

No, was never offered or required a Counselor.

What has kept you going? 

I am a creature of habit and that has kept me going. I have a fixed daily routine from the moment I wake up, and that allows little time for unwanted thoughts.

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