Life with a stoma

I love my stoma.

My stoma itself is fairly innocuous and affects me very little on a day to day basis. I can run, cycle, swim, ski, walk all day up mountains in Scotland, ring heavy bells and play squash (i.e. do pretty much anything I want to). Most of the time I am not aware of my stoma while doing these things or the bag that is stuck to me constantly to catch its output.

However, the main reason that I love my stoma is that it enables me to do all of these exciting activities and to be able to enjoy them in full health and fitness. My stoma is a constant reminder that I no longer have a colon and therefore no longer have to endure the awful symptoms of Crohn’s disease that plagued me for over 15 years. (Although Crohn’s disease cannot be cured, even by surgery, because my Crohn’s disease was only ever active in my colon, rectum and anus (none of which I longer possess), it is unlikely that it will ever become active elsewhere in my digestive tract.)

Another major advantage of having a stoma is the control over going to the toilet that it gives me. Previously, when my Crohn’s disease was at its worst, I would be rushing to the toilet dozens of times a day, with my scarred rectum and anus providing only loose control over the final (often very painful) exit. Going to the toilet was a thoroughly unpleasant experience. Nowadays, I have to empty my bag a few times a day (it takes less time than it does for a normal person to have a poo), and I have complete control and choice over when this happens and I feel absolutely nothing. This allows me to be able to cycle, ski or walk in remotest Scotland all day long and not have to worry about where my nearest toilet is going to be.

I realise that many of the advantages of having a stoma are what most people consider to be part of normal life. However, for more than 15 years I didn’t have that normal life but instead had a chronically ill life (see all of my previous blog posts for further details!), so to be able to experience normality and to revel in it is a wonderful feeling which I will never take for granted.

One of these “normal life” advantages is to be able to eat and drink whatever I like. Yes, my stoma is fairly small, so I have to make sure that a chew everything well, and too much beer causes me to be gassy such that my bag inflates (the bag does have a filter to allow some neutralised gas to escape but it is not that effective). However, compared to the restrictions on my diet when my Crohn’s disease was active (for a number of years I drank practically no alcohol, tea or coffee, and I avoided spicy foods, onions and stringy vegetables, all of which exacerbated my symptoms), it is great to have a smorgasbord of delicacies at my disposal. I also now have a healthy appetite (marathon training helps even more with this) which was sorely lacking when I was ill, such that eating used to be a chore just to try to minimise losing too much weight, whereas now eating is a wholly pleasurable experience. I have put on about 10 kg since I have had my stoma and manage to maintain this at a fairly constant level (compared to the ups and downs I had previously).

The psychological benefits of not being chronically ill should not be underestimated. While I managed to remain positive and active throughout, over the years the continuity of being ill and the slow loss of hope owing to the vanishing number of options that would keep me well, gradually ground me down, eventually to the point that I was backed into a corner, where I lost the will to keep fighting being ill and I had to face surgery (at the time not realising what a transformation this would have on my life). It is a great relief not to have to worry about when I am going to get better and what my next treatment might be, as well as not having to experience the sometimes quite intense pain of a disease ravaged colon. Normality is now being normal, whereas for many years I did not know what this felt like such that normality became redefined as chronic illness.

There are obviously a few (what I feel are pretty minor) downsides to having a stoma but, owing to the huge new lease of life that my stoma has given me, I consider these to be minor inconveniences. First, I have to spend a few minutes a day changing my bag (the adhesive flange very gradually peels away from around my stoma owing to the stoma’s output – putting a new bag on helps to prevent any leaks and keeps the skin around my stoma healthy). I generally change my bag last thing at night before going to bed (when I know that the output of my stoma is likely to be low), so sometimes all I want to do is to crash into bed… If you would like to see what is involved in changing a stoma bag, please take a look at this video (not of me!).

Second (and particularly if I don’t change my bag every day), the skin surrounding my stoma can become excoriated owing to contact with my stool. This can range from being mildly irritating to acutely painful (I can often tell when I’ve eaten spicy food!), but the skin heals quickly with a new bag on (the adhesive flanges on the bags are designed specially to promote healthy skin).

Third (again, particularly when I haven’t changed my bag in a while), my stool can work its way underneath the adhesive flange and leak. I will often feel this before it happens, so can change my bag to prevent it, but if I am away from home then stool may leak into my underwear. (Other than keeping a spare bag at work, I hardly ever carry a spare bag with me, which demonstrates the confidence I have in it not leaking and that this rarely happens.) Even if I do have a leak, it does not compare to the mess I sometimes used to experience and then have to clean up when my Crohn’s disease was active, I had little control over my (rather loose) bowel movements and couldn’t get to a toilet in time.

So, overall, I have many reasons to be thankful for my stoma, and few to complain about (I have little time for hypochondriacs anyway!). Life is great.

Mark

Training diary: back to pounding out the miles, including the longest run of my training – it’s gradually easing off now until the marathon in four weeks. This week: four runs and a total distance of 80.6 km.

Tuesday: 14.4 km in 64 minutes

Thursday: 18.5 km in 80 minutes

Friday: 11.6 km in 50 minutes

Sunday: 36 km in 3 hours

1 Comment

  1. So good to hear that you have a positive outcome to a major surgery, and are ab le to do all those active things you love. Go for it! Good luck with the marathon.

    Like

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