Colin's bowel cancer story (diagnosed at 61, VIC)

I used to eat all of the recommended things for healthy living – fresh fruits and vegetables, protein from a range of high quality sources like meat, seafood and nuts. When it came to things like cheese, chocolate and coffee, I ate them only in moderation.

Due to an ileostomy I received following bowel cancer surgery, I now have to consume a ‘low residue’ (low fibre) diet, consisting of low fibre white bread, mashed vegetables and jelly.

Very occasionally I indulge in a short black coffee, with the inevitable impact of a higher through put.

To help slow the small intestine process in order to reduce output and help fluid absorption, I take several medications.

I also have to manage dehydration and replace needed proteins, salt, fats and fluids that result from taking medications.

It has been a big learning curve, which was driven out of pure necessity and gained through personal inquiry.

Symptoms I experienced included discharge and chest pain.

I underwent a heart –scan and also went to a gastroenterologist who arranged for a colonoscopy the following week.

At 2pm that day the specialist informed me I had cancer.

During the colonoscopy he removed smaller polyps.

I asked for immediate action and we arranged for a bed in hospital so further tests could be conducted.

Although radiation and chemotherapy were discussed, I pushed for radical intervention.

I wanted them to cut the cancer out surgically.
It was discussed and reasonably deduced that surgery could help better understand if the cancer had travelled to other regions or if it was localised to a region.
After being introduced to my colorectal surgeon, further tests were arranged and I stayed in hospital for the weekend, with leave to go to the football for my birthday.

As it turns out, this course of action was the correct decision.

We believe the Ultra-Low Anterior Resection achieved successful removal of the cancer.

This procedure, along with the removal of my rectum and surrounding tissue and lymph nodes, sigmoid and descending colon, supported the previous investigation and hypothesis that the cancer had not metastasised beyond the rectal region.

Following my surgery, I went in for rehabilitation, but they were not well setup for helping with food and recovery issues related to ileostomy.

There was also a knowledge deficit in diet and exercise.

After searching, I found pertinent information on Bowel Cancer Australia’s website on Low Fibre diets and "Colostomy and Ileostomy patients".

I accept that what has happened is what it is.

My family and I have had to deal with many things and we just try to get on with things the best we can.

Obviously, it was not my choice and I would prefer not to have had to be exposed to this illness and its impact on my life impact and theirs.

For family, I do not believe this is a straight forward or as simple as my acceptance and attitude, but we are getting through, by discussing things and supporting one another.

Unfortunately, the question of a Closure Loop Ileostomy has presented a much greater issue and required emotional and psychological toughness.

This impact is due to lack of clear and accessible evidence on the probable outcome and lifestyle impact that undergoing a reversal would have on me.

The idea of 8 - 15 toilet visits a day, perhaps no control of motions, and potentially two years of uncertainty and possible social exclusion and being home bound - these are all concerns.

What information is accessible is patchy at best, and from what I read it does not appear to be highly successful.

With no rectum, I suspect a reversal may be problematic.
Concerns about not being able to go swimming, go to theatre, or sport all because I’d be worried about soiling my clothes or lacking bowel control – these things weigh on me and my family.
As someone who has had to research to find information and support, I believe discussion with others who have to consider or who have experienced a stoma reversal would be most valuable.

I also believe a long term study would be most useful in this area.
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