Three ways to live with your new body after bowel cancer

We each have our own experience

Learning to live after cancer can be a full time job, can’t it? Staying sane and level headed whilst you get used to so much that’s happened takes a lot of effort.

To caveat before we start, depending on the treatment, surgery, care and needs you have, your life after bowel cancer will vary from another’s. And while I’m writing about bowel cancer, some or all of the following might apply to other cancers.

That said, there are some specifics that we can’t ignore. Bowel cancer will affect a different part of your body than other cancers might, leading to at times tough dietary needs and choices amongst other things. 

So, how can we live with this new body - one that we’re at times grateful for, yet at other times guiltily exasperated about? Here’s three oh so simple ways. 

1.     Focus on what you are capable of now (with new or fewer body parts)

It’s understandable that you feel a sense of loss or even grief. Perhaps without even putting a finger on it, you sense that something’s changed or gone. Maybe a part or a whole organ has indeed been taken away.

In its place you might have scars or additional baggage like a stoma to contend with. There’s no getting away from the fact that you’ll need to adapt to this and that can be a journey in itself.

But when you’re ready – and likely no sooner just because you’re told you should! – you may just be able to sense what you are capable of, even without this organ, or with this new piece of equipment on your body.

Maybe you were told you wouldn’t run again, but you find you can walk in the woods still.

Maybe you weren’t sure if you’d have your favourite tea again, but you enjoy it just as much now.

Maybe you didn’t know if bowel cancer survivors can eat beans, and you’re the lucky one who can. 

Whatever it is, it’s worthwhile acknowledging and celebrating these things you can do. You may discount them as everyday tasks or achievements, but be careful to make note of them especially on difficult days.

And that’s not to say you should ‘stay positive under all circumstances.’ I’m suggesting more of a ‘Huh, I’m OK because I can still do this,’ or ‘I’ve just realised I can do these other things instead.’ There’s already so much pressure to be a certain way after cancer. So learn what you want to celebrate and what makes you happy again and you’re on the right path.

2.     Learn your triggers

You may notice you tire easily. This might be chemo brain or fatigue still lingering around. Or it may be that you need to hydrate more often due to your new plumbing. Either way, make a note of your best and worst times of the day and month (men and women!) and what was happening around them. That way you’ll know when you need to drink more water, or when to try and get more sleep or eat differently - more or less - to suits your needs. This isn’t the most exciting of tasks but your body and mind will thank you for it once you’ve invested the time.

3.     Accept that the pain will change 

Abdominal surgery and scarring is nothing to be sniffed at. The pain can be intense and scary. As your scars heal, the pain can move and shift too, which is disconcerting. You’ll know what feels like your normal pain versus different pain.

I’ve had chats with plenty of bowel cancer survivors who self-medicate and prefer to stay at home to manage their pain because they know a trip to A+E isn’t worth it. Equally, please don’t delay a trip when you need to go.

How do you know the difference? That’s really your call and I can’t tell you. But please know this – the pain will change. As your scars settle, as your body grows back. As you maybe even learn better management techniques – habits, lifestyle changes, medications, exercises or whatever works for you*.

It’s worth mentioning what the pain actually is – scars forming perhaps yes, but this might be pulling on nerves, or growing near or around other vital organs you’re using daily. For example, my own scarring caused havoc with my ovaries and the remaining small bowel, bunging up the latter so that I’m essentially all gas and air. With no rectum to fart (true story) this leads to intense pain in attempting to go to the toilet when the bowel starts moving again. (Side note - telling people you’ve got gas doesn’t really adequately articulate said level of pain so watch how you’re describing it if you do take a trip to the doctors or the hospital.)

*Specific remedies that helped me and others include: multiple peppermint teas, Buscopan, hot water bottle, salt-bath, clear fluids for 48 hours, hunching over a pillow, suitable yoga poses, relaxing activities, soothing music, meditation, sleeping pills, morphine. Please note - this isn’t medical advice and in all instances listen to your doctor on this side of things.

And the Mind? 

And what about emotional pain? I know we said we’re talking about our bodies but that includes our minds, right? Taking 1 and 2 into account should start you off well.

I often think emotional healing is the thing we’re really left with though. I see it as lifelong, to be honest. Not that you have to be an emotional wreck for the rest of your life. Indeed you may have come out of it unscathed and raring to go. But don’t let external proclamations of coping deter you from investigating your inner thoughts and feelings about your cancer experience.

Equally explore your feelings when you’re ready – maybe that’s as it’s happening and into the months after, or perhaps it’s years down the line that it presents itself. Emotional pain can be sneaky too – it masks itself as other things, perhaps anger, or stress or lack of sleep or relationship issues. So stay alert to your feelings even as the years progress.

Eight years down the line for me and I’m quite sure I’m only just getting to know myself better now.

Emily supports people to lead a more gentle life through coaching and therapy. An Ex NHS and charity professional, she uses this and her personal experiences of cancer and other health traumas to share learnings on removing pressure, overwhelm, stress and anxiety from our lives to feel happier, calmer and focused again. Her next course is in October.