What I Fought to Stay Alive For: Finding Motivation As a Longterm Ostomate

by Rakhee Patel

What I Fought To Stay Alive For

Prior to surgery I was extremely underweight, so much so that my surgeon warned if I didn’t gain weight I’d have to spend two weeks in hospital being fed through a tube.

My appetite was far too poor for me to even consider getting my calories via solid food so I calculated that I’d need to drink five or six bottles of Fortisip a day to get to my goal weight. Even these were not easy for me to get down, so some days it would get to midnight and I still wouldn’t have finished five bottles, never mind six!

Exhausted, nauseous and in pain, I would set my alarm for 1am, let myself sleep for an hour and get back up to finish a final bottle or two of the not-particularly-pleasant-tasting high calorie drink… such was my level of determination to stay out of a hospital bed.

My health is now greatly improved and has been comfortably stable for a couple of years…

However, I’m finding it difficult to muster the same level of motivation that I talk about above, and my discipline has plummeted to the point where I haven’t met a deadline in over six months!

They say that life changing experiences like serious illness can drastically change a person’s outlook on life, and it has. Yesterday I was in complete awe upon seeing a blossoming tree merely because I’m still alive to see it, but after spending the majority of my life simply trying to survive, where do I find my motivation now?

There are moments when I’m consumed with an anti-climactic blend of emotions that combine a lack of inspiration with laziness.

It could be whilst completing a mundane task or it could even be during a special occasion but when this feeling hits, I ask myself “Is this what I fought to stay alive for?” Every cell in my body responds with a resounding ‘no’ and this single thought really is my saving grace.

I also ask this question when I need to make a decision - whether it’s a substantial one like which direction I want my career to go in, or a small one like how I should spend the evening. When I bring this all-important question into the equation, the answer comes instantly.

This question reminds me of the stories and people that gave me hope when my situation looked most bleak; I’m pretty sure the Oprah Winfreys and J.K. Rowlings of this world didn’t sit back and relax once their need for survival and safety was met.

What’s necessary is a change of motivators.

Previously I was driven by fear… fear of being in hospital, fear of losing my independence, fear of remaining too ill to lead a ‘normal’ life.

Now I must start thinking less about what I don’t want and more about why I stayed alive, because I cannot accept that I simply got lucky. I am particularly aware of the fact that I have limited time available to me and asking, “Is this what I fought to stay alive for?” helps me choose exactly how I want to invest my equally limited energy. The ability to wake up for a 1am alarm is not really something I need anymore but the memory of how much discipline, determination and work it took to do this and every other thing I did in the fight for my health, drives me to ensure that I use the good health I’ve been given on things that are worthy of it… and nothing else.

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

  • Valerie

    Brave girl, keep going, you are an amazing example of courage and hope. x

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