Uday Kerwar, survivor of stage 4 bladder cancer and currently Chairman of Ostomy Association of India (OAI) talks about his journey with bladder cancer, urostomy bags, its many challenges and plenty of adjustments before it becomes a part of you.
Please tell us a little about yourself.
I am 62 and retired.
Since 2016 I am continuously associated with Ostomy Association of India (OAI), a Charitable Trust providing rehabilitative support to people who have undergone Ostomy (life-saving procedure that allows bodily waste to pass through a surgically created stoma or opening on the abdomen).
When were you diagnosed with bladder cancer?
I was diagnosed in 2001 after my first Cystoscopy (endoscopy of the urinary bladder).
What were your early signs and symptoms?
I noticed blood in my urine in 1999, however, going by my family doctor I simply upped my water content and saw the urine colour go back to normal.
What tests did you have to undergo to detect your bladder cancer? Which type of bladder cancer were you diagnosed with?
I was going through the routine extra water intake for over two years and the urine colour had become normal. However, a persistent backache made me take a sonography and a growth was seen in the bladder.
The urologist suggested a cystoscopy and then a sample was sent to Tata Memorial Hospital (TMH) for analysis whether it was benign or malignant. TMH reported malignancy.
What was your treatment process?
My urologist suggested a 6 week course of medication. The medication was injected into the bladder to prevent recurrence as the growth had been SCRA (synthetic cannabinoid receptor agonists) Doped off during cystoscopy and nothing else was detected within the bladder. It was preventive protocol.
Once again routine set in, but not for long, I started putting on weight. The clothes had to be altered at regular intervals. I starting getting fatigued and one day, even a simple pick up of the morning milk from nearby kiosk had me sweating while climbing to the second floor. So much so that I had to head straight to the washroom.
A CT scan on the same day showed up another growth in the bladder.
A few nights later, I developed breathing issues and had to be rushed to hospital at midnight.
We opted to go to TMH for further treatment. There the Head of Department (HOD), Urology made it clear that it would only be on the operation table that he could check out if the bladder could be saved. After 8.5 hour surgery I was welcomed back as an ostomy patient, back from the brink as the surgeon told me. I was stage 4 with infection having spread to the lymph nodes. My chemotherapy started 6 weeks after surgery.
I was given a 2 year parole.
Did you need a stoma bag? How did you accept and embrace the stoma? What adjustment was required?
After surgery, my wife told me that they could not save my bladder so a bag was placed on the stoma. My logic was simple, face reality or it may bite. I counted my blessings, it could have been much worse.
Of course there are plenty of adjustments to be done before it becomes part of you.
- To begin with, the bag was fixed horizontally and was a challenge when walking those rounds in the hospital straddling not one not two, but three different bags. The problem became worse after discharge as it started leaking even as I reached home (my sister’s house) and had to be replaced by 4 sets of hands who had never done it before.
- Two days later it again leaked and this time the bag was placed vertically thus saved the day.
- Due to a major amputation (my bladder was removed) there were severe leg cramps
- Physical weakness had set in
- The bag would leak at anytime, but mostly it was during the night or early morning and due to incontinence, had to be careful to effect the changeover when the flow had stopped.
The adjustments carry on till date, and with each additional learning I do get myself updated
We were made aware of the consequences – diet restrictions were in place for next 7-8 months, nothing raw, even fruit juices were boiled and cooled. But during chemo there was hardly any taste in the mouth. Side effects were severe, vomiting was a way of life, lost about 24 kgs during chemo.
How common is the ostomy procedure in India?
Reporting cancer or ostomy is not mandatory in India and with ostomy surgeries increasingly being carried out in smaller towns, the issue of ostomy care has grown exponentially over the last few years. Added to this, the fact that it is treated as a closet issue, makes getting an accurate number is easier said than done.
What are the psychological and social impact of a stoma?
While the Stoma creation is a life saving measure; however, it does leave a deep psychological scar on patient when it becomes apparent that there is a visible change in physical appearance and worse, a total loss of natural control. The permanency of use of the appliance (lifetime) is a huge shock followed by a nagging fear of the appliance falling off or of offending others because of malodorous secretions can make ostomates avoid social contact with friends and even their family.
Unfortunately, even as life-saving it is, stoma creation, in reality disables a patient for life.
What are the early complications or common side effects of having a stoma?
Complications:
- The urinary diversion surgery is a highly complex abdominal operation with a majority of patients being on the older side with cancer and other comorbidities. The most commonly reported complications of are gastrointestinal disorders & infections.
- Signs of a urinary tract infection (dark, cloudy, strong-smelling urine).
- In case of Neo-Bladder any left-over urine after self-catheterization or lack of sufficient fluid intake can lead to Urine Infection or formation of Stones.
- Fizzy drinks and Alcohol not recommended.
- Back pain, nausea or vomiting, fever, loss of appetite, skin irritation around your stoma (inspect skin with each pouch change)
- Recurrent leaks of pouching system seal
- Excessive bleeding stoma (a small amount of bleeding is normal)
- stoma can start to get longer (prolapses)
- Skin discolouration: a warty, discoloration of the skin around stoma, urine crystals on or around stoma.
- B-12 deficiency symptoms
- Sexual dysfunction (male & Female) cases have been reported in Neo-Bladder cases of Ca.Bladder
- For Neo-Bladder patients, using a catheter can be quite intimidating at first, but could get used to it over time.
Does it affect your appearance? Is there a change of wardrobe required?
Not really.
What are the dietary tips and guidelines to prevent complications in stoma bag?
Healthy drinking habits can prevent many of the problems associated with the bladder.
What’s good: De-caffeinated tea & coffee, water, diluted juices, herbal tea, and non-acidic fresh juices.
What’s not good: caffeinated tea & coffee, green tea, hot chocolate, colas & fizzy drinks, caffeinated energy drinks and acidic fresh juices.
Are there unpleasant noise and smell of wearing a stoma that could restrict social interactions?
Not really. The urine that collects in the bag has to be emptied in the nearest washroom. As long as the bag is regularly emptied there is no issue there
The urine is rather concentrated and comes with mucous, so keeping an odor eliminator spray is about the only accessory needed apart from supplies.
Did you have to bathe differently or adjust your travel habits with a stoma?
Bathe yes, but it’s something you can quickly get used to. Now you get bath aprons, so this too becomes normal.
Travel habits did not change much. Of course to safeguard stoma I avoid packed buses/trains.
Travel has not been affected. I travel internationally as well no issues there. Just need to carry my medical papers.
What advice would you give someone who has recently started using the ostomy bag?
Stay upbeat, never feel shy about your bag. It’s going to be a part of you for life like say Glasses. There is life beyond ostomy, a life equally if not more fulfilling.
We are sure you will overcome all odds, should you need, we are always there to help.
Stay tuned in, stay connected join the community.
You are the Chairman of the Ostomy Association of India? Could you tell us about the organisation, its objectives and mission?
OAI is a community of support and resilience. More than words, I feel walking you through what we tell our Patient members can help you know us better,
“ There are various reasons for having surgery, but a common bond among Ostomates is the ability to persevere in the face of life’s obstacles. With knowledge, experience, and support you can begin to gain confidence in this “new normal” life, discover your resilience, and not just live – but thrive.It is natural to have hesitations or concerns about adapting to life with an ostomy, but please know that many negative perceptions surrounding ostomy surgery are based on myth, rather than on truth and real life experiences.We are here to help everyone living with an ostomy discover the facts - - and their inner strength. It is important for you to have trusted information. From surgery specific answers to many basic questions to information and tips about living with your ostomy, and profiles of people who have returned to a full and productive life after surgery, all this information will be shared with you.
As an organisation, Ostomy Association of India (OAI) was formedin 1975 and is a pioneer in serving Ostomates across the Indian Subcontinent.
We are a self-help group of people who have all undergone diversional surgery of the Gastro-Intestinal and Genito-Urinary tract. As a not-for-profit association, OAI is totally reliant on the support of Donors, members, friends, volunteers and a very dedicated staff team.
As a national non-profit organization OAI promotes quality of life for people with ostomies through information, support, advocacy, and collaboration.
