Saturday 3rd October is Ostomy Awareness Day and to coincide with this, ColostomyUK is launching a new campaign called #StomaAware. The aim of the campaign is not just to make people StomaAware on that day, but to make people in the UK #StomaAware every day of the year.
The Importance of Being StomaAware
I’ve always been open about having a stoma and during a Crohn’s flare up in 2018 when I was contemplating having surgery I was regularly discussing with friends, relatives and work colleagues about whether I would elect to have a stoma or not. Bringing this up prior to having surgery helped in making people aware that I was going to be having a stoma ‘fitted’. Sometimes people would be aware of what a stoma was, other times I’d describe what the surgery would involve and how it would work.
By sharing this information, people would be comfortable asking me questions about how things are with the stoma and associated issues. It was a good talking point and the more that I shared, the more that people became #StomaAware.
Where I work, we’re a small team and I felt it was important to share with my team what the surgery would involve and what life would be like with a stoma. By sharing that information they wouldn’t wonder why I was heading to the toilet with a poo bag and supplies once or twice a day or why complications meant I was seeing a nurse daily for dressing changes. I’d like to think that I’d by sharing my journey with them they’d be more aware of what a stoma is and what it’s like to have one.
When I decided to irrigate, this was information that I shared before embarking on it and again when I started. Many people, myself included, weren’t aware of the colostomy irrigation process so describing how it worked, the reason for doing it, and potential issues helped when my stoma decided to have a mind of it’s own.
Irrigating has been such a good decision for me and whilst it’s eliminated some of the issues I had been experiencing prior to starting it, it also introduced a few new issues such as random wind. The source of the wind can be one of many things such as the irrigation itself or diet but on occasions I suffer from wind that can either be silent, or not! And when it’s not silent, it can potentially be embarrassing so when I’m sitting with a work colleague having lunch and the stoma decides to be vocal or when I’m in close proximity trying to help them solve a problem and it decides to toot, it really helps that they are #StomaAware.
Even Though I’m Confident About My Stoma, There Are Times When I’m Not
Random stoma toots in front of people that know that I have one is fine, but standing in a queue or sitting in a train carriage or other occasions where it’s quiet can be uncomfortable. There are times when I can anticipate when it’s going to make a noise but there are other times when I’m just as surprised as anyone in the vicinity.
Most of the time I don’t worry about it making a noise but if it does it once whilst I’m in a quiet area then I do start to get anxious about it happening multiple times. So far I’ve never noticed any react to a ‘stoma fart’ but I’m sure it’s audible enough to be heard and I presume they would think that I just didn’t have any manners rather than not being able to control the wind.
I’m not sure that there’s an easy way for someone to know that the noise is coming from a stoma rather than the usual exit as a fart is a fart, but the more that people are #StomaAware, the better chance there is that they’d understand that it’s something out of your control.
#StomaAware Day Run
I’ve been back running since May 2020 and I’m currently following a training plan that will allow me to run ultra distance races like I used to enjoy before have a colostomy. Today’s training session was a 21 mile long run which I had been eager to attack all week.
I’ve been irrigating since January and for the past month or so I’ve been managing to irrigate every two days rather than every day and on the whole it’s been going well and there haven’t been any issues. Based on my training plan for the following week and which days/times I’ll be running I’ll make an irrigation schedule. For today’s long run I decided not to irrigate before and part of the reason for that was on a few occasions I have had bad abdominal pain after an irrigation and I didn’t want to chance having it whilst running. In case I needed a bag change I took some spare supplies but I obviously didn’t think I would need it as the supplies consisted of a colostomy bag, a black bag and a single dry wipe.
Around mile 8/9 I was feeling something stirring in the bag but just presumed it was the hernia. At mile 11 I felt a warm sensation and when I stopped to check it out the bag had leaked and there was a considerable amount of poop. Obviously the sensation I was feeling a few miles previously was the bag starting to leak. The single dry wipe was not going to clean up the mess but I did the best that I could and carried on with the rest of the run.
The rest of the run would be heading through Newport and populated areas but for 6.5 miles I didn’t see a single bin so had to carry the black bag with me. So frustrating as I’m sure dog walkers using sections of the same route would need to put their waste somewhere.
By mile 17 the second bag was also leaking and with no other spare supplies left and 4 miles to run home I had to accept that poop, and associated smell, was going to keep seeping through my clothes. Conscious of the poop on my running clothes and the smell I made sure I gave people a wide berth and hoped that nobody noticed.
I could have easily called it a day at mile 11 but was determined to complete the training run and by sharing my experience I hope to make people more #StomaAware.
