If you’ve been following me for a while, you’ll know I live with an ileostomy – a type of stoma formed from the small bowel – after losing my colon to Crohn’s disease.
Read more about my stoma and my journey here.
Now having a major organ removed isn’t exactly easy. Nor is it straightforward. The surgeries performed to create stomas aren’t quick or without their complexities. But hopefully the reward – living without pain, disease or tumours in the colon – is worth it. But living with a stoma.. its a tricky business.
For me, it’s been a love/hate relationship. I’ve had mine for 6 years now and it’s been my only way of life – my roundabout way of saying I had it made a permanent fixture – since 2019. And yes, I still have moments of hating it even though I decided to make it permanent and I also advocated for the original surgery in the first place.
So why am I telling you this, six years on from having one?
Because what I see is a lot of fear and anxiety over needing to have a stoma. ‘Fear’ is a big thing and it can lead to the second, that goes without much disagreement. Preoperative care and support are lacking, let’s just put that out there. But what else is not there is the celebration of the mundane things to love about having a stoma.
So let me share mine with you.
Preface: it can go without saying but I feel I must put this in here, I would be a different person if I hadn’t had my stoma surgeries. Life is significantly less painful, more joyful and freer since having one. Yes, it’s an adjustment and an adaptation to you and your lifestyle but it truly saves a lot of folks.
Number one: no colon = no colonic Crohn’s disease. My colonic Crohn’s disease was discovered early on but it would always simmer down on medication. It did not like being on no medication and it did not like being operated on. You can read about my first IBD surgery here.
Number two: no colon = no colonoscopies! YAY! No more scopes up the butt, no more dreaded moviprep or bowel prep for scopes. I was over the dang moon when I learnt this! I’d had an emergency scope a day prior to agreeing to surgery and I can tell you I was super chuffed to not be doing that again!
Number three: No more butt burn. Inflammed colon, rectum and anus from Crohn’s disease flares are not fun. The aftermath is a very sore bum. There would also be alot of spasms, discomfort and pain from the BMs that would accompany a flare-up.
Number four: MRI scans involve less prep. For ileostomies, the output is porridge-like and can be quite loose. SB MRI scans require prep to allow for contrast to be seen, but also have a slight laxative effect. And what goes in, must come out. Giving full prep to an ileostomate is dangerous for several reasons – it pulls much-needed fluid from the bowel; resulting in dehydration in those with ileostomies. The prep can lead to the output being very loose and can burn and damage the peristomal skin.
Number five: Organising supplies. I’ve just spent an hour or so going through my supplies, organising what I have to use in my stoma drawer – I’ll show you a little way down this post – and what I have in stock. I also get a list ready for what I need on my next order and set a reminder to order when I will run to my ‘low stock alert’ level. I really like organising things, it helps me feel calm, I feel more in control and I get to understand the products I used alot better. It’s also a good thing to get into the habit of so you can stock rotate – find out why this is important here.
Number six: Knowing my anatomy. Surgery = anatomy changes. A stoma is a very obvious anatomy change – removal of an organ and bringing part of it to the surface to form an opening on the abdomen – but there is alot that goes on beyond the skin. Without a colon, there’s more space inside for the rest of the bowel to move, and mine certainly does that! It is what has led to several episodes of twisted bowel and some subsequently hospital admissions, as well as more recently, obstructions. Knowing what my body feels like ‘normally’ to me, helps me describe issues I am having with my medical team.
‘Number seven: Eating all the spicy food I couldn’t before and also not having a raging hangover from a night out. Freedom to eat is what I love the most about my stoma. It makes me feel very normal and I am a huge foodie. I can enjoy most of the food I could not tolerate with my colon intact, so I can indulge without too many ramifications. I can also have more than one drink without feeling sick or getting diarrhoea.
So much of the time, the conversations about stomas revolves around problems or how much of a negative impact it has or will have on a patient’s life. I can fully appreciate that nothing is perfect and nor is anything a bed of roses all of the time. Stomas do come with some quite serious medical problems if there are complications or neglect or just bad luck. But I have alot of love for mine because life has been very different since it and I’ve honestly enjoyed my life so much more since then. I still have IBD, there is no cure and it will always be there but I’ve felt freedom from what I know now was ‘holding me back’ – my colon.
And yes, some days I do wish I could go back and never have any of this but would I really want that? Food for thought.
Until next time,
Do you have any questions or queries? Or just want to share your own experiences? You can leave me a reply here or leave comments via my social media accounts – on Twitter, find my blog page on Facebook and over on Instagram