Nav’s story: Recovering from stoma surgery

05 November, 2019

“Those information packs that tell you what you should do to have a healthy bowel and limit the risks of bowel cancer – I do ALL of that! I am super active, healthy, I have been a vegetarian for a few years and had recently become a vegan. I eat lots of fruit and vegetables. I go to the gym, play football, and go running. I work as a Police Officer and am often out and about in my job. You can imagine my shock at 38 years old being told I have bowel cancer. The next few weeks I was in a daze…

I was told because of where the tumour was I would need a stoma, possibly a permanent one. I had no idea what a stoma was. My mind was already all over the place with the diagnosis, the possibility the cancer may have spread to my liver (thank god it had not), being told I will need chemotherapy or radiotherapy. I have had long hair my whole life. I had made the decision in my head it was all to be shaved off as I could not bear the thought of clumps of my long hair falling out in my hands. I had made so many decisions in my head during those sleepless nights after the colonoscopy. I even planned my own funeral. That C word, I couldn’t even say the word.

One of the hardest things for me was the impact it was having on my family and in particular my twin sister, Preeti. She had encouraged me to go to the doctors for my symptoms as I had been bleeding and then going to the toilet more frequently. I stupidly had ignored them as it wasn’t so bad to begin with. She said she had read up a little on what it could be but stopped as she knew it could be bad. Yeah, I won’t have cancer so I thought, I don’t have any other symptoms. I mean I could still run 12-15km on a weekend with her, and still out-run her. I came into the world with my twin, how would she cope without me? She’s my soulmate.

Telling my family was one of the hardest things I have had to do, I had my better half with me every step of the way. Telling friends too, so many people to tell, ‘But you are so healthy Nav’, it was a shock for everyone. Cancer affects us all. My parents kept the news to themselves. It’s a cultural thing, you don’t want to tell people bad news. I could see that my parents hadn’t slept in days and I asked them if they had told their brothers or sisters but they did not want to. So I told them they needed to tell family so they could share the burden and get support. They need people to talk too, it isn’t just me going through this, and we are going through this together.

After my parents told their brothers and sisters I could see some instant relief in their faces. It’s so important to use people for support, you can’t take on cancer by yourself. Apart from my brother Jassi, who took on skin cancer alone in 2018. He was worried about how my parents would handle the C word and didn’t tell anyone. He took on and beat cancer. What a hero. He’s actually turned his life around, stopped smoking, lost around ten stone in weight through healthy eating and exercise. He’s an inspiration, if you put your mind to something you can do it.

So, pooing in a bag that’s attached to my stomach… ‘No, no, no, I don’t want that’ I told my consultant. Like I had a choice. How can I do my job if I have to poo in a bag? I love being a Detective and I like being out and about in my job. I don’t want to spend the rest of my career sat behind a desk. How can I play football? I stopped playing competitively a few years ago but love the weekly kick about some of us ‘vets’ still have. How will I be able go for a run with a bag? How can I have intimate moments? Will it look unattractive? My life is never going to be the same, so ‘no, I don’t want a bag’.

The next day I met with my stoma nurse, Tracey. Along with my consultant, Bubby, and my Colorectal Nurse Sarah, are the 3 medical professionals that really stood out for me. I can’t thank them enough for getting me through a seriously tough few weeks. Tracey went through every detail with me, from how my insides worked and how things would change with a colostomy bag. I walked into the appointment feeling so anxious about how my life would  change with a stoma. I walked out thinking I can still be me and do all the things I love doing. That one chat with Tracey completely changed my outlook on life with a stoma and the possibility of a ‘bag for life’. I felt like okay, I can do this!

I have met with Tracey, and Rose (my other stoma nurse) a few times since and she will go through not only my output and how my bowel is a functioning, but everyday things like what kind of underwear is best to wear for support, what exercises I should be doing for my core, importantly about rest, and also about intimacy. Getting back to a normal as I could life, because having a stoma is normal, I just go to the toilet differently to regular people. Science is amazing. My insides are on my outside. I did not know that something like this could be possible. It’s weird but at the same time so interesting.

Since having a stoma I have learnt that a lot of people don’t know what it is. Well nor did I at the start of this year! The few people I know who know what a stoma is, it’s usually through friends or family that have one. I’ve learnt a lot this year and through groups like Colostomy UK and the internet, it’s made life with a stoma a lot smoother than I thought it would be. Things took a lot of getting used to but I feel like I’m at a stage where I can easily do this. In the beginning I was just trying to manage things myself, I’m quite independent. So managing my stoma I think took quite some time. Getting extra information after explaining to my nurses how I was feeling  has helped me with managing my output and, so importantly, be at a stage where I can be more active.

Exercise has always been very important in my life and six months post-surgery I felt comfortable about starting to get active again.

I started slowly with walking, having lunchtime meet ups with friends helped getting some steps in. Then I tried some gentle yoga and I am now back in the gym, running with Preeti, I can even manage a bit of a kick about. My body is still recovering so I cannot run as fast as I could before the operation and I cannot lift as much, but I’m getting there. I’m not measuring myself on speed or weight or distance. Something is better than nothing. It’s important not to overdo it, and listen to what my body is telling me. It’s very important to support your stoma and surrounding area. I always wear a support when I exercise. The physical benefits of exercise are so important, and it’s also good for your mental health.

I’ve been told I look great for someone who has had major surgery and Cancer. I strongly believe that looking after my body prior to the operation (I carried on exercising until a couple of weeks before my operation) and starting on light exercise when I could had helped with my recovery.

I am continuing to build my strength in preparation for a reversal operation. Whenever that is I want my body to be strong and ready. Due to how low the tumour was a reversal may not be successful. Having had a stoma for 6 months, living with a bag for life is something I know I can do, and still live an active life. Still do my job. If you’d have asked me six months ago I would not have thought I would think like this.

I’m very fortunate to have strong and supportive family and friends around me, I couldn’t have got through this year without them. I’m fortunate to be in a job with supportive managers who have looked after me. It has made me think about all those people that may struggle with work, and lack of support. It’s so important that there are organisations out there to look after people, give them the information and support they need.

Healthy body, healthy mind.”