It’s been over 17 weeks since my surgery and it’s been a while since I posted an update. Here’s how I’ve been getting on.
How I’m Getting On with the Bag
As I’d hoped I’ve been getting on extremely well with the bag and I don’t have any issues with it at all. In the early days I would encounter rather a lot of ballooning but that seems to have subsided a lot with no changes to diet. I’m finding that I have to change it twice a day (first thing in the morning and once during the day) and apart from smells occasionally leaking due to a crease or two, I never notice any odours.
Here’s What I’ve Learnt
In the 4 months that we’ve been together, I’ve gotten to know the ins and outs of My New Bum, both positive and negative. Here’s what I’ve learnt:-
- I need the services of, on average, two bags a day.
- I have chosen not to worry about what I eat or drink and I haven’t had many issues as a result.
- Plenty of wind dissipates from my stoma throughout the day but actual noisy farts seem few and far between.
- I’ve had just one accident which was due to me trying out a new bag and then jumping on a treadmill for some interval sprints and hill work. The combination didn’t work well but thankfully there wasn’t much in the bag.
- I appear to have a lot of pancaking. I know that adjusting diet and fluid intake can help alleviate this but it’s not too much of an issue at the moment.
Issues
One issue I do have is the fact that the area around the stoma does protrude which means that the bag is more noticeable beneath clothes. I’m presuming that this is due to position of the bowel but I have found that I can press it in but it quickly pops back out. When I asked my specialist I was told that the bowel needs to pass through the layer of fat in the abdomen and when it does it’s not easy to predict the final shape so unfortunately, I’m left with more of a protrusion that I’d like.
View Protrusion
It doesn’t cause me any issues in terms of how bags are applied and how well they remain in place but I can’t help be drawn to it each time I see it.
Ongoing Ken Butt Issues
I’ve already mentioned the issues with my Ken Butt but I’ll recap. Shortly after surgery I had an infection which meant that an incision needed to be made at the base of the AP Resection to allow for drainage. This meant that I would need daily dressing changes by a nurse until it was healed. The wound was sizeable so would take time to heal but these things aren’t easy to predict so I didn’t know how long it would take. In addition to this there was another issue at the opposite end of the Ken Butt.
Rewind maybe 15 or 20 years and I developed a pilonidal sinus that didn’t really cause too many issues and it was decided to leave it. Very occasionally it would bleed but didn’t cause any discomfort and never became infected. During the surgery and the AP Resection, it would appear that the sinus has come worse and is now a lot deeper. I’m not sure if it was there immediately after surgery as neither myself nor any nurses spotted it but it didn’t take long before it became infected not once, not twice but thrice and subsequently became the most troublesome of the two wounds. 17 weeks post-surgery the sinus remain at 5cm deep and has consistently been that depth.
Whilst the bottom would is still healing it still continues to bleed and the pilonidal sinus either oozes exudate or full on bleeds over clothes and furniture. As you can imagine this is both literally a pain in the arse but also a potentially embarrassing issue to deal with depending on where I am when it decides to bleed.
View Bloody Output
It’s been difficult to deal with both in terms of the inconvenience of having it dressed on an almost daily basis and also the uncertainty of not knowing how long it will take to heal and if it doesn’t heal what the options are.
So, What Are the Options?
Well, after meeting with my specialist, or my specialist’s junior, it would appear that all I can do is continue to have daily dressings for as long as it takes, however long that may be. Yep, I just have to put up with the inconvenience for however long it takes and should it not heal then the alternatives to trying to fix the issue aren’t favourable. I could have exploratory surgery and have it cut open again but that would mean that I could be going through a similar amount of healing time again with no guarantee that it would be resolved.
The other alternative, which appears to be the something that would be most suitable, would be to hope that the sinus heals enough so that it no longer leaks and is no longer susceptible to infections and then if a would still remains simply live with it. I have lived with a much, much small sinus in the past so providing it doesn’t leak, that seems like the most likely outcome. Unless something miraculous happens and the sinus completely heals!
The Immediate Future
For the foreseeable future it looks like I will continue to be a familiar face at my GP surgery and I am going to have to continue to reward my very lovely team of nurses that have had to put up with seeing my butt on a daily basis for over 4 months!
I honestly don’t believe that the sinus will fully heal (from what I’ve read I don’t think they ever do) so I’ve revised my expectations that I’m going to have to ride this out until the sinus has healed enough that I can put up with it. It’s not ideal but I don’t think I could go through with more surgery.
How Am I Getting On With Running
I’m running, so that’s a good sign but I’m not as far forward with my running that I’d like to be in. I’m currently running once or twice a week with no big distances or speed but that is to be expected. Unfortunately, ongoing issues with the Ken Butt mean that at times I don’t feel up to running, don’t feel well, or am cautious about causing issues by running. I’m still keeping fit by walking many miles a day so that’s going to be helping regain my fitness levels but I did hope that 4 months after surgery I’d be a bit farther forward.
That said, I have achieved some milestones. I’ve run a tough 10K trail race, I’ve managed 24 minutes at parkrun and I’ve managed an 8 mile run. Based on the surgery I’ve had, I’d say those were milestones to be proud of.
Last year during my Crohn’s flare up I was feeling disappointed that I was missing numerous races and having to cancel some big races that I had paid for and I was hoping that I would be able to compete in those same races this year but as times passes on it looks I’ll have to postpone them again until next year. I’m slowly accepting the set back again and adjusting my expectations accordingly. I realise it’s going to take me a while to get back to running frequently again and I’m accepting that I don’t need to beat myself up if there are times where I don’t feel up to running.
Any Regrets?
I think 4 months is a decent amount of time to determine how well I’ve been getting on with a stoma and whether or not I have any regrets. The short answer is no. I have zero regrets.
Ignoring the Ken Butt issues, I’ve been getting on great with the stoma, the process of changing a bag takes just a couple of minutes and when I’m away from a toilet for a long time (e.g. photographing a long race), I don’t have to worry about going to toilet – in fact, when I spent photographing a 12 hour long race recently, I didn’t need to change the bag for the entire race.
I’m sure that there will be issues with the stoma in the future but providing the Crohn’s Disease doesn’t rear its head again, I think we’re going to get along great.
