Six months have flown by. I’ve learned a lot in that time but feel as though there’s so much more to learn. My journey with a stoma has been an interesting one – it’s been rewarding, a huge learning curve and I feel as though I’ve got a long way to go before being an ostomate-master, if I ever will become one!

Ken Butt Update

Six months post-surgery and I truly believed that I would no longer be needing to visit a nurse on a daily basis to have dressings changed but here I am. The small wound created by the surgeons shortly after surgery when they removed some stitches was healing well and visibly looks tiny but when probed is still 1.5cm deep and is currently leaking a lot of blood and exudate. The larger sinus at the other end of the Ken Butt is no better and is also leaking blood and exudate. It’s been fluctuating in size depending on how it’s been probed but is still 5cm in depth.

The Output from the Wounds During the Latest Infection
The tiniest of the wounds seems to produce the most output!

Around two weeks ago the wounds were healing well but recently the amount of exudate and blood began to increase to a point where it was causing issues with staining clothes (never good for your confidence!). Initially I wasn’t sure what the reason was for the increase in leakages and at the time I wasn’t feeling ill. I had increased the number of times I was running and was worried that it may be contributing to the issues. After a few days a swab was taken to be tested for an infection and after a week or so of increased output I started to feel feverish.

Despite experiencing this before, things felt a bit different, especially as I was feeling physically exhausted. Signs had pointed to an infection but I was convincing myself that I had overdone it with the running. Eventually the results came through and showed a slight infection and a GP review resulted in me being prescribed antibiotics. Based on how I felt when the results came through (a lot worse), I’m sure that if I had the swab taken later there would have been more than a slight infection.

Almost My First Major Accident

Even though after six months I still don’t know when my stoma is going to decide to poop, at night it’s generally well behaved. There are times when enough wind to inflate a balloon gets released during the night but poop wise I’ve been lucky…until recently.

I had gone to sleep around 2230 and the bag was fairly empty. Even though I had needed to change the bag a few times in the day, I wasn’t concerned about there being any issues throughout the night. Most nights are fine and if there is any output during the night I usually manage without a change or perhaps once a week or less I need to change it.

Around 0130 or so I woke up and the bag had almost entirely come loose. There was so much poop that it had broken through the seal between the bag and the skin and it was essentially hanging on by a thread! Luckily, no thankfully I was sleeping on my back so the poop hadn’t come into contact with anything. I’m not sure how I’d awoken but was glad I did. This was easily the closest I’d come to a full accident.

Hernia Update

It’s still there. It’s still around the size of half a tennis ball. I have to permanently wear a support belt. I don’t think anything is going to be done about it. ?‍♂️

I’ll be raising the issue when I next see my specialist in September but my understanding is that unless the hernia is causing pain or blockages, surgery won’t be performed.

And…My First Major Accident

Wake up at 2am.

Me: Is that a smell?
Bag: Yep, that’s me!
Me: Are you full?
Bag: Nah, we got space left in there.
Me: Is your seal around the top unstuck?
Bag: We’re good!
Me: I’d best get up to change you anyway.
Bag: Ha! You forgot to check the seal around the bottom! ???

A Vocal Stoma

When you have a stoma, wind still needs to exit your intestines just like if you didn’t have one. The difference with having a stoma is that, for the most part, the wind exits in, perhaps, a more dignified manner (it hasn’t got that valley of butt cheek to amplify the sound).

So, if I’m going to break wind, I can generally feel it about to happen and then a second or two later I hear a little rustle in the bag and the wind has exited the building.

However, sometimes, the wind can decide that it’s going to leave more vocally and you have no idea when this is going to happen. It’s very random and other than to try some strategic coughing (which NEVER works) all I can do is to let it escape. Thankfully, if everything is good with the bag, there’s no associated smell. To those in the vicinity who don’t know about they bag they are probably waiting to smell something.

Whilst performing some on-site training with a client I was sat next to her when it started to pipe up! I ploughed on but as soon as the first fart passes, your concentration starts to wane. By the third fart I needed to let her know where the sound was emanating from. Of course she was completely fine about it but it’s one of those situations where you don’t want to announce it in advance because there really isn’t a need to but on the flipside you are hoping that nothing goes wrong whilst with someone who doesn’t know. I’m already confident enough to announce it if required and over time these incidents will be less of a concern.

Running Update

Due to issues, largely with the Ken Butt and the issues such as infections, I’m not as far forward with my running as I would have liked but over time I have come to accept that. Whilst the running has been up and down, I have made big strides in improving my 5k and 10k times, running the 13 miles home from my office in Cardiff to my home in Newport and completing two tough 10k trail races including running in my club vest again.

It’s so easy to just look at the days when I find it a struggle to get out there but collectively there have been so many good days. And it’s very easy to forget how far I’ve progressed in a short period. And then there’s the positive response from my running friends who have been supportive through the tough times finally seeing me back running, and ‘racing’.

The Next 6 Months

I thought the Ken Butt would be completely sorted after 6 months but here we are. The nurses in my GP surgery are probably secretly glad that I’m still there as I’m still periodically rewarding them with chocolate from Hotel Chocolat.

Even as recently as a couple of weeks ago I thought July may have been my last month there but I’ve already got daily appointments booked up throughout August. I wonder if there is a record for the most daily appointments within a year at my surgery? ?

I’m here all week! And the next, and the next!

I’m hoping that the current Ken Butt infection will be the last one I have to experience and I can get on with working through my quickly-filling running calendar. Most of the races are not booked until October onwards so I’m hoping that is long enough to get everything sorted.

My next appointment with my specialist is early in September and even though I believe I know the answer, I’m going to see what the long term forecast is going to be for the hernia. Ken Butt aside, it’s the only thing related to my stoma that I wish I didn’t have to deal with. Having to wear a hernia belt for exercise I can live with but having to wear it on a permanent basis is not something I had envisaged having to do.

My body has already adapted to having a New Bum and now associates poop sensations with the stoma and not the now long departed old bum.

One strange thing about the hernia is that without a support belt I get a feeling that I need to go to the toilet. My body has already adapted to having a New Bum and now associates poop sensations with the stoma and not the now long departed old bum.

Long term, at least the stoma itself is functioning as it should, which is the main measuring stick in this whole process. Everything else are just the challenges that need to be dealt with.

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Diagnosed with IBD in 2002, I have experienced the usual ups and downs of having a chronic disease and tried numerous medications but the time finally came in 2018 to elect to have surgery to improve my life. I had the surgery in 2019 and this is my journey having a 'New Bum'.

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