For this year’s Ostomy Awareness Day, I want to bring ashine a light on one of the issues that I think is important when discussing stomas : Each individual has a unique story and a unique experience of stoma life.
When thinking of stomas, most people think of a colostomy. It’s the standard default that gets mentioned in the media or in films and TV, usually if there’s a joke about someone with a bag. There’s so much stereotyping and lack of knowledge around ostomies, but thankfully it’s starting to change as more people share their stories. No matter what the general advice or theorising is, every experience of having a stoma (or ‘ostomy’) is unique.
The Reasons For Having A Stoma
The typical thought here is that most people with a stoma have Crohn’s or ulcerative colitis, some form of IBD that means they’ve had to have a bag. There’s actually a multitude of reasons someone might have a stoma, including, but not limited to, the likes of trauma to the bowel, neoplasia, cancer of the bowel/bladder/rectum, damage from mesh surgery, diverticulitis, and so on. Damage or obstruction in the bowel or around it might mean a stoma is required.
For some people it’s a decision they have to make, for others there is no decision, a stoma is the only path left to take. You might get a few days or months to start to come to terms with what’s going to happen, or you might just wake up after surgery with one. Stomas don’t discriminate, they could happen to anyone of any shape, religion, race or job title. They can be formed on everyone from babies to the elderly. There’s not one ‘type’ of person with a stoma.
In some cases the story of what caused the need for an ostomy is more straightforward. Something specific has caused damage and a stoma has been made. In other cases it’s a bit more complex. I have a stoma because of a surgery that did damage (something I’ve never discussed in this blog), but I then had to have my large bowel removed because it was causing problems, at which point it was found my bowel had died and had no peristalsis. There wasn’t a choice in having a stoma, I would have eventually died without it.
Whatever the reasons, there’s an emotional impact. It’s not always easy to accept needing something like this, perhaps all the more so if it’s going to be permanent. Some people may have come to the end of their ropes with their bowel problems and be extremely grateful that their bags have given them their lives back, but for others the bag is a constant reminder of the trauma they’ve faced.
I personally have found there to be a sense of pressure here, that I need to be accepting of, and grateful for, my stoma. Moreover, it’s though I can’t feel self-conscious or depressed or averse to it because I’ve had it for a couple of years, even though it doesn’t feel like it. But there should be no pressure and no rush, we all go at our own speed.
Different Types Of Stomas
The term stoma basically refers to an artificial opening. There are three broad types of the digestive and urinary stomas.
While a colostomy is the most commonly heard of stoma, it’s not the only type.
With the bowel, there’s a colostomy or ileostomy, and you can sometimes, but not always, tell which is which by which side of the body it’s on.
A colostomy is made from the large bowel, usually towards the end and so it’s often on the person’s left side. An ileostomy is made from the small bowel, so it’s usually on the person’s right as the ileum is brought through to the surface of the abdomen. I have an ileostomy.
A stoma may be temporary, with the view to ‘reverse’ it at a later day by reattaching the bowel, or it may be permanent. A loop ileostomy, for example, is the form of temporary ostomy that many people have where the rest of the large colon is still there, ready to hopefully be reattached one day. I have no large bowel (and ‘end ileostomy’) and ongoing damage means mine won’t be reversed, a fact that’s not easy to think about.
There’s a third type of stoma, this one relating to the urinary system rather than the digestive system. A urostomy (also referred to as a Bricker bladder or ileal conduit) is a diversion for urine where the bladder and/or urethra aren’t viable options, such as because of obstruction, damage or extensive surgery. It provides another route out of the body for urine in the same way a colostomy or ileostomy provides a route out for digestive matter. If there’s a traffic jam through town, you take the by-pass. You get the idea.
It’s worth noting that I didn’t have a clue about stomas before I had mine. I didn’t know the different types, the varied reasons people might have them, the problems you could get with them. I learned as I went along. Were it not for me having a stoma, I probably wouldn’t be any the wiser right now.
A Unique Stoma Experience
Now that the basics are covered, it’s on to stoma life. The point I really want to make here is not just that the types of stoma and the reasons for having one are different for everyone, but that the experience of living with one is different for everyone too.
The pamphlets and online resources might try to paint a fairly universal, positive picture. These are life-saving procedures and people can mostly eat, dress, live, exercise, work and travel as they wish after recovery.
It’s true that many people get on very well with a stoma with no notable problems. They find they can get back to a life they didn’t have before because of the bowel problems they had. However, it’s not smooth sailing for everyone.
There are problems that can arise with stomas, from skin issues and leaks, to blockages, ruptures and twisted bowels. There are challenges with food and nutritional intake and resulting deficiencies for some people, and problems with hernias for others. Even the seemingly smaller things can have a considerable life impact, like not being able to wear the same clothes or not being able to lift heavy things again, or the effects on socialising, relationships and sex lives. It’s fantastic that many people get on with no major problems with their stoma, but unfortunately there are those plagued with issues.
It can impact our sense of self, our self-confidence, our body image and our mental health. For some it might be a small knock, for others it might be catastrophic.
Some people have just the stoma, experience minimal problems with it and are otherwise very healthy, whereas others may have a range of other chronic illnesses or chronic pain conditions to deal with alongside theirs. The mix of stoma plus other issues will have an impact on every area of life.
There’s also the matter of how we deal with things. Our personalities, support systems, financial position and living situation all play into how we experience, manage and cope with our health.
My journey has been a bit rocky. I’ve had a lot of problems with my stoma because my insides like to dance to music I can’t hear, and the twists have landed me in emergency department countless times, as well as sending me for an emergency surgery. Bowel twists have not been my friend. I have ongoing issues with these and consequently with reduced absorption and deficiencies, while being at a high risk of hernia because of numerous abdominal surgeries and connective tissue disease. I’ve also got other conditions and autoimmune problems that markedly affect my daily experiences.
Toxic Positive Pressures
I used to be all for thinking positively, and I still am to some degree. But I don’t like positive pressure, which can be toxic even in small amounts. Where we’re told by perhaps well-meaning friends, strangers, medical professionals and stoma nurses that we can live ‘normally’ with a stoma. Where we’re told that someone knows someone else with a stoma who’s now travelling the world, working two jobs, skydiving every weekend, having a family and so on. Hearing all of this while we’re stuck at home in pain, poorly with other illnesses, having lost our friends and jobs and whatever else, is not helpful.
It’s just important to remember that the journey is different for everyone. The experience is not necessarily linear in trajectory and it’s not one that can be predicted.
The Need For Recognising Uniqueness
Stomas can be classed as invisible conditions, and life with such hidden illnesses and disabilities isn’t easy. Add in lack of awareness, misconceptions and stigma, and it’s no wonder many people struggle with the mental side of stoma life. Nobody should be judged for how they experience a stoma or how they manage and cope with it, often alongside other chronic conditions.
It’s not a one size fits all approach. I think the uniqueness of the stoma journey needs to be kept at the forefront when having conversations about stomas, as well as when they’re portrayed in the media, and when information booklets and online articles for new ostomates are developed.
Whether you’re new to having a stoma or you’ve had one for decades, please know that you’re not alone if you find yourself struggling or not matching up to the lofty expectations forced upon you by toxic positivity. Just keep going at your own pace and please reach out if you need support.
Stoma life is different for each and every person. Each story is unique.
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