Living With An Ostomy In India

Living With An Ostomy In India

Interview with Documentary Director, Anisha Vijayan

My interview with the director of India’s ‘The Secret Bag’ campaign

Last week I interviewed Mumbai based campaigner and documentary director, Anisha Vijayan, about what it is like to live with an ostomy in India. Although Anisha doesn’t have a stoma herself, she has created an initiative called ‘The Secret Bag’ to spread awareness of ostomies in India, a country where relatively few people have heard of the concept.

Anisha’s activism has been inspired by her grandmother, who transformed from someone who did not cope well emotionally when she first had a stoma formed, into a woman who has completely accepted and embraced her ostomy. The ultimate aim of The Secret Bag is to film a documentary which looks at what it is like to live with an ostomy and that will provoke some much needed conversation about the topic within the country.

The practicalities of living with a stoma in India

One thing I was really interested to find out was, if there is no NHS in India, where and how do people get their ostomy supplies? It turns out that often the answer is, with great difficulty. In a country with 300,000 registered ostomates, there are only four cities in which one can buy stoma care equipment. This means that those who cannot afford to have their supplies couriered have to travel for hours just to obtain them. Ostomy supplies can be bought from associations linked to hospitals, which offer these products at subsidised prices but these costs are still more than many can easily afford.

Anisha thinks there is a huge need in India for more stoma clinics, specialist nurses and other provisions for those living with ostomies. To convey the magnitude of the struggle, she told me of an incident where an ostomate had a meeting with a health minister to talk about the above issues. The problem was that the minister had never even heard of an ostomy before.

Shame, stigma and secrecy

It became apparent very early into my conversation with Anisha that one of the main emotions that ostomates in India experience is the feeling of shame. “In India, stigmas come and stay,” Anisha tells me. Anything different to the social norm is perceived as something to be ashamed of and it is for this reason that the majority of ostomates keep their stoma a secret, disclosing it only to their closest family members.

Whilst people showing their stoma bags in public is becoming increasingly common in western countries (I spoke about this in my previous blog), the same cannot be said in India. If an ostomate is wearing a sari, she will ensure that her pouch is completely hidden by the material folds. Anisha even told me that, although specialist stoma-wear companies have tried to branch out to India, there was very little demand because no one wanted to risk being seen in public buying specialist ostomy clothing.

The marriage conundrum

As you might know, arranged marriages (where a spouse is chosen for an individual by their parents/family members) are still common practice in India. Anisha has observed that most people would rather not have an ostomate marry into the family, meaning that many ostomates in India remain single. However, I am sad to say that the perception that people who have health conditions would not make good daughter/son-in-laws can also be an issue in the British Indian community.

Philosophy, faith and family

One thing that Anisha stressed is the importance of family. “Family is always there for them,” she says. In India, it is very uncommon for people to go to therapists so it is often the case that the relatives of ostomates become their counsellors, their support and maybe their carers. Anisha has also seen many people turn to religion or spirituality to help them deal with the psychological impact of having a stoma. This is definitely something I can relate to, even though I live in the UK.

Hitting home

As an ostomate of Indian origin, listening to Anisha made me think about how very different my life might have been if my grandparents hadn’t emigrated. My interview has given me an even deeper appreciation for the NHS and how it facilitates a better quality of life for ostomates here in the UK. I have also realised how fortunate I am to live in a country where society is becoming increasingly accepting of people who differ from the ‘norm’. UK culture has taught me that I should never fear judgement.

Anisha hopes that her documentary will lessen the burden of shame on ostomates in India because, as we all know, no ostomate should ever feel embarrassed.

I now have an even deeper appreciation for the NHS and how it facilitates a better quality of life for ostomates

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To keep up with her campaign and find out more, search ‘The Secret Bag’ on Facebook, Twitter, Instagram and YouTube.

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by Rakhee Patel

Rakhee Patel

About the author

I'm Rakhee, I have had a loop ileostomy and now have an end ileostomy due to Crohn's disease. Happy to share my journey!

Recent Comments

  • David Chandran

    An eye opener, indeed! I am offering Stoma products at discount to help those having problems getting them.

  • Shubham Shukla

    I have a ileostomy because of intestinal tb The doctor said reversal surgery would be done after tb is completely removed.I want to know about ostomy products in Mumbai the products I buy are expensive.i want to know where can I get them cheaper.

  • Rakhee

    Hi Shubham, on Wednesdays at Sion Hospital they sell ostomy supplies at a very low cost. Please contact me on twitter @RakheeHeadShave or on facebook by searching 'Rakhee is Shaving Her Head' so I can give you the phone number of someone you can call to find out more. Stay strong my friend.

  • Chander

    Pls advise from where stoma bags can be available at discounted rates
    in Gurugram & NCR we are getting it at rs 306 per bag in hospitals

  • Virendra

    Hi,
    I'm an Indian and living with permanent Colostomy last 6 months in UK for work.

    I do think how we make more awareness in India and How can the stoma bags supply easy and affordable.
    And very well said Ma'am! I appreciate your words.

    Thanks to UK NHS team as well.

  • Gururaj

    Hi maam ,

    The point describing The marriage conundrum. This is one thing troubling me since i have under gone permanent colostomy surgery. I have found solutions for every other related problem but this.

    Any thoughts on that.

    Thanks.

  • Rakhee

    Thanks everyone for taking part in the discussion.

    Chander - Please contact me on twitter @RakheeHeadShave or on Facebook by searching 'Rakhee is Shaving Her Head' so I can give you the phone number of someone you can call to find out about discounted ostomy supplies.

    Gururaj - I'm sorry to hear this. I haven't tried to find a marriage partner yet so I have limited insight. I am personally inclined to find someone myself rather than rely on family so that I approach the topic of my health as and when I feel comfortable doing so. I certainly wouldn't share details this personal until I've got to know the person. Perhaps it is my naive optimism but I do believe there are people out there who will accept me (and you too)!

  • Taruna bhatt

    My mother recently undergone surgery n got permanent stoma bag..now she is so much depressed...anyone who have permanent stomach bag plz share ur no so that I can contact him/her....

  • Tushar kumar

    In India colostomy is neither a disability nor a normal condition ...Mean you are screwed ....Govt job they are rejecting by saying you are unfit for work and ostomates are not even qualify for disabled quota ...Terrible condition ....

  • Manikyala rao Tankala

    Mam I was selected for Govt job and I am an ostimate patient since 15 years due to Crohn's disease ...
    Am I eligible for doing govt job in India ???
    I am curious to know your answer as I am going to attend medical test next month...
    Thank you

  • Raj

    Hi friends life is very east with ostomy prepare yrself i have parmanent ostomy taruna ask yr mother nothing to worry

  • MADHUSUDHAN REDDY T

    Yes I agree with gururaj most of the people facing same problem in India (including me)

  • Minal

    I am Minal Kothari, have an Ileostomy for the past 2 6 years. Firstly I'd thank Anisha for giving my number to Rakhee. It was nice speaking to her.
    I would like to answer the queries you'll are facing.
    1. If you want to get materials of the ostomy products at discounted prices contact the concerned company. You can get even from Ostomates India - - Bangalore, you can call & check the prices.
    2. Sion hospital gives colostomy bags to only sion hospital patients once a week on Tuesdays.
    3. Government jobs would be hard to get but private jobs should not be a problem if you're fit.
    4. If at all one wants to get married, speak to the prospective partner and clear out the doubts or else get married to a person with a similar problem.

  • Ruheena

    Hello,Im 27 yers I got permanent colostomy due to cancer in 2012, I m frm hyderabad n I dont know who will marry me frm wer

  • Anoop Tiwari

    Hi Ruheena ,

    My mom is also going through this surgery please let me know if we can talk i am 28 year old

  • Shri

    I’ve done a cancer surgery and doctor offered me a temporary iliostomy .. now the doctor saying it will be permanent colostomy due to the rectal area become narrow and the surgery area become very tight it needs to be dilated which we are doing since three months but no help.
    Anyone can suggest me if it can be done medically ? Please

  • chandan Bj

    Hi all

    This is chandan from Bangalore I have a permanent colostomy I am just 28 years old.

  • Madhu

    Hi friends I am Madhu from Hyderabad(India)I have permanent ileostomy and I am searching for ostomy friends to share our thoughts,pain and get support each and everyone and will create our own group, let me know if interested

  • Preksha

    Hey, am 25 yr old, having ilestomy since 2months , I am also looking for ostomy friends.

  • Missal Dhawan

    I m with this colostomy bag from last 10 year....
    I m married and fully enjoying my life.....
    there is no problem for a Govt. Job due to colostomy......
    Colostomy patient is under 60% handicap category according to govt. rules.....

  • Bhupal

    Dear all , can you people tell me if any of you have expertise to do counseling of my nephew who has gone for colostomy and had permanent stoma he is operated 15 days before is completely not accepting it he was given this treatment due to colorectal cancer , pls help or give number so I can talk or we can arrange for him to talk , kindly help , regards

  • Kritika

    Hi All,

    I have an iloestomy since 20 years now, I have a question related to disability quota to Mishal Dhawan who mentioned that we are protected in “60% category” as per Indian government rule. Can you let me know the “category” of the disability for colostomy you marked in the form which is to be downloaded from swavlambancard.gov.in?

  • Uday

    I have permanent clostomy I want to know if I will get reservation on government jobs as Kritika is saying. Further I am also finding it difficult to get married

  • Sonia dube

    Hi
    I hv had colostomy reversal but I still have issues with my bowel .. I would be glad to hear from people like me .. thankyou for spreading awareness

  • Chandan

    Hi this is chandan with permanent ileostomy . Request anyone to create what'sap group so that it will be helpful for each other.

  • Shakuntala garg

    I had a urostomy resentaly and looking after the life afyer i discharge from hospital
    I am a female from bathinda punjab

  • Sreekanth Reddy Y

    Is there any whats app group or Facebook support group for Indians who had stoma surgery??

  • Sonia dube

    I have created a group on telegram named ostindia u can join if you want to

  • Anirudh B Balotiaa

    My father recently had surgery for colorectal cancer and has now a permanent stoma bag.

    From where I can procure it here in Bangalore, preferably in and around Electronic-City Phase-2.

    Any leads or help is greatly appreciated.

  • Dipankar

    Dear Mam I was detected colorectal cancer on 2019 and got operated and now I had a permanent stoma ,Mam where can I get my ostomy supply in discounted rates.

  • Sangeetha Ganesh

    Hi! My mom is a n ileostomy patient for almost 42 years now. She is 75 now and active too. Its sheer willpower and determination not to be bogged down by such difficulties?
    Yes getting her bag and phlange has been cumbersome. We are from chennai. She is currently getting it from Mumbai. But they also have to import it.
    Isn't it high time it is manufactured in India itself. Shouldn't we start a campaign for it? Kindly advise.
    And also if there's anyplace in chennai itself where we can get it at discounted rates?

  • Rajiv Kumar

    I have some single piece urostomy bags In case any one is finding it difficult to procure pl contact me with your mobile number.
    Am located in Gurgaon.

  • Anu

    Hi,
    I am from bangalore and need colestomy bags at discounted price. Also want to join a wattsapp group for queries and help.

    Thanks

  • Rini

    Hello, am 46 years old, have recently undergone permanent Colostomy and feeling very down and depressed. Also, my bag has been changed a couple of times now and I have seen that after the bag change, the stool takes time to collect in the pouch, giving me anxious moments. This time, it is more than a day now and still no collection is there. At the hospital, there was no stool for 6 days and enema had to be given. I would like to know whether the stool collection delay is normal immediately after bag change. Also, would like to connect with similar patients to boost morale. Thanks and Regards, Rini

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