Recolonnected

Two months ago the section of small intestine poking out of my abdomen was pushed back inside and sealed in a way that meant that it was game time for my colon.

Even after explaining to people exactly what a stoma is and how the surgery to remove my tumour unfolded, and even after drawing diagrams on napkins and myself, I have the feeling that people still don't understand exactly what went on. 

When living with a loop ileostomy, as I did, nothing is turned off or stopped - things are just by-passed. The diagram to the right is one that best shows the surgical outcome. As you can see, everything is still connected and working. This cut section of small intestine is pulled up through my abdomen and sutured in place. As intestinal contents, or poo, move through my small intestine they reach the hole and are collected by a bag stuck on my belly and over the hole.

This meant that waste could not continue on to the colon, which needed a break after the operation to remove my greedy tumour.

The loop ileostomy was able to be reversed after my leak healed, chemotherapy finished, and the blood clots in my lungs dissolved. And this happened two months ago.

Using your bot bot again after 9 months of not using it is a very interesting experience, for several reasons:

1. My colon is a lot shorter than it was the last time I needed it
2. I no longer have a sigmoid or rectum, meaning I've lost a couple sets of traffic lights telling poo when to stop or slow down
3. I now have a new pouch near my anus called a J pouch - that acts like a reservoir, or holding tank
4. I had extensive radiation and chemotherapy to the area, meaning the tissues will be affected for years
5. The muscles around my colon got lazy

In day to day terms, this means:

1. I go to the toilet several times a day
2. Often there is disagreement between me and my colon about when it should empty (the colon tends to win)
3. 'Gas' is my new friend
4. I do pelvic floor and clenching exercises several times a day to build up strength
5. I'm extremely sensitive to chili, brussel sprouts and sugar
6. I often need to wear extra protection

But as I approach 1 year since my tumour was removed, I'm not unhappy with this list. As someone in an online support group once told me 'at least you're still here to feel these things'.

Treatment pie

I'm fairly open about my cancer and its treatment, but one aspect of my treatment that I have tended to keep to myself is the nutritional and psychological changes I have made as a result of getting cancer. I've hinted a few times at providing a list of 'What to do' but I am uncomfortable doing this.

The aim of this blog

I mainly use this blog to communicate the science of colorectal cancer and treatment (despite the fact that posts related to the heart side of things attract the highest number of views). This is the void in cancer communication that I am hoping to fill.

Why patients do the things we do

I'm into evidence-based treatments and the use of science as a tool for knowing things. Cancer hasn't changed this, but having stage three bowel cancer did force me to look at a wider range of therapies than I had considered in the past. And I deviated from my normal decision-making framework and adopted therapies that don't lend themselves to being evaluated clinically. I called these choices Leaps of Faith, in the sense that it was my faith in the treatment that mattered. This faith stemmed from my need to tackle many different parts of my life simultaneously. It was me vs my tumour, and the stakes were high.

No two pies are the same

Given the personal and individual nature of dealing with cancer, I have never dumped my therapeutic choices onto others. I have a concept of a cancer treatment pie - where each slice is a different therapy, way of thinking or tool. Each person needs to bake their own pie and for this reason I'm not going to use the blog to promote the lifestyle choices or therapies that made up my pie.

What I can say is that there is very good, and generalizable, evidence that the following increase your risk of colorectal cancer (above and beyond age that is):

• Smoking
• Drinking alcohol
• Processed meats or a diet high in meat
• A diet high in animal fats

For more information see what Bowel Cancer Australia has to say about preventing colorectal cancer.

Had surgery? Be heard.

I offered to help recruit research participants for a new study being done into the information needs of people having surgery for colorectal cancer.

This project aims to explore patients’ experience of a subtotal or segmental colorectal cancer resection, and to identify their information needs. The project will study the longer term outcomes of the two different surgical options. If a need is identified, patient information leaflets will be developed from the findings for use in clinic.

This research project will focus on what patients have to say about the experience and outcomes of surgery in their own words. We will cover topics such as what you knew about colorectal cancer before you were diagnosed, what you knew about the surgery before you had it, your experience since having surgery, and what you would most liked to have known prior to the surgery, and how you would have liked to receive this information.

You can choose whether you would prefer to have an individual interview at a time and place that is convenient to you, or be part of a focus group discussion with 8-12 people who have undergone a similar surgery to you. 

If you want to take part please contact Emma Steel on  (03) 8344 0768 or emma.steel@unimelb.edu.au

Bowel cancer awareness week

It's here, my (new) favourite week of the year. Me and the people in my support group have been doing media across the country (news, breakfast TV, lifestyle magazines). We are sort of addicted to talking about bowel cancer, the cheap and easy screening kits available from most pharmacies, and pointing out to people that you don't need to be old, overweight and male to get this cancer.

I featured in a story by Tracy Vo on Channel 9 News:

Bowel Cancer Australia are doing cool stuff this week, including leading the 'Join the bowel movement' campaign and flash mobs in Brisbane. I went to their recent awareness week media launch in Sydney and was blown away with the quality and creativity of their public engagement strategies.

My Holy Grail

Some people increase risk-taking behavior after cancer treatment and start living life fast and hard. Some go back to exactly how they lived before their diagnosis. Some go Zen, move to the country, grow their own veggies and make their own toilet paper.

How you live after cancer is important because there is some evidence to show that certain parameters (that you're able to control) can affect the chance of cancer coming back. Factors like exercise, nutrition and well being.

I began looking at my pre-diagnosis lifestyle in an attempt to find my Holy Grail. What factor was it that allowed a cancer to grow inside my 28 year old body? My thinking was that once I determined that factor, all I had to do was change that and everything would be okay, for ever.

I then realised that there was no single factor, cancer isn't about single factors. Cancer is about multiple factors and complicated genetics, immunology and physiology. Trying to find my Holy Grail was more about control: controlling my disease, controlling my future, and wanting to eventually die on my terms - not my cancer's.

Mainstream medicine has never blamed me for my cancer, alternative and complimentary medical thought often does. For example 'You didn't love yourself enough', 'You didn't eat enough citrus', or 'You led a stressful life'.

I don't think I gave myself cancer, I just think that what ever I was doing for those 28 years didn't prevent cancer. I don't have a known genetic disease and cancer is not common in my family. If my cancer came from exposure to a carcinogen then that is fine, but my body systems still failed to catch and remove the cancer and so may need some help in that department in the future.

One of the challenges for me is that I was reasonably 'healthy' before cancer

I was an extremely low consumer of meat (I averaged around 2-3 serves of animal a month). I drank between 1 and 3 liters of green tea per day. I ate nuts and seeds and wholemeal and wholegrain products. I cycled or ran most days and my BMI was perfect. I was doing a job that I loved and was passionate about.

But not everything I did was healthy

For several years before my cancer and I drank (like most of other Australians). I had a massive sweet tooth. Running my own business became a stressful experience. I went through a period of not valuing relationships with friends and lovers. I didn't spend time with myself, or just hang out with Ben.

I don't think going to Beijing mega clubs and drinking excessive amounts gives everyone cancer, it just didn't work for me. I had 28 years of living one way, and I got cancer. It's rather straight forward.

I don't need Dr Phil to stare me down and ask "How'd that work for you?" because I know the answer. It didn't.

My next article will detail what I have changed about my lifestyle and diet and why I think these changes are healthy ones.