It’s been 10 months since I had a new bum installed and it’s been a bumpy ride. I was n’t expecting further surgery and I certainly didn’t expect to still be having daily dressing changes to a Ken Butt wound. Here’s an update on the wound, my latest specialist appointment, my hernia and my mental health.
Specialist Appointment
It’s been almost 8 weeks since my last surgery where the non-healing wound – which had tunnelled to meet a pilonidal sinus – was opened up so that it would have a better chance to heal. In that time I had a Vac working its magic for 3 weeks, a period of overgranulation and the usual 5/6/7-day-a-week dressing change regime.
The appointment is a follow-up to see how things are progressing with the wound and to check everything is on track – I believe it is, albeit very slowly. It will also be an opportunity to discuss options for the parastomal hernia.
The Appointment
This has to be one of the best appointments I’ve had with it lasting around 45 minutes and seeing my surgeon, my surgical care practitioner (wound specialist) and stoma nurse. As I’ve gotten to know them over the year, and longer in the case of my surgeon, it felt like an open conversation where all options were honestly discussed and with the aim of ensuring that going forward I was physically and mentally happy.
I’ve been in regular contact with my surgical care practitioner for some time and she ensured that she would be at my appointment to monitor how the wound was progressing but I think part of her turning up was to compare our mushroom photos! It turns out we both enjoy photographing them so spent time comparing photos whilst my butt was out being redressed.
What I’ve Learned About the Wound
The wound was original a lot deeper than I thought and so the Vac dressing worked wonders although it may have worked too well. The aim of the machine is to bring blood vessels to the surface to promote healing but it appeared to have brought ALL the blood vessels to the surface! This means that the wound bleeds at the slightest touch and doesn’t get a chance to dry out. As a result I’m going to have to get my arse out regularly for an airing.
The surgical care practitioner seems to think that the wound will heal in around 4 weeks but the surgeon thinks a bit longer so I’m expecting it to be fully healed in early 2020.
Here are two of the latest shots of the wound taken in November 8th and 11th. The shot on the 11th illustrates how friable the wound still is and how it bleeds easily on contact.
Latest Wound Photos
Parastomal Hernia
This has been playing on my mind for some time and I have been unable to decide on which way to go – surgery or no surgery. Lately I have been swaying more towards not having surgery done at this time based on simply listing the pros and cons of having it done.
The surgeon took me through the options including the usual mesh fix but also something a bit more complicated (repairing laparoscopically with a synthetic material). He’s only performed 4 or 5 of these and whilst the recovery time is quicker there could be complications with IBD and having a piece of synthetic material inside you.
It was becoming clearer as we were talking that surgery shouldn’t be the first option and other options should be explored first. The main pro of surgery for me would be to reduce the profile of the hernia so if I can do it in other ways that would be more suitable.
Other Bags and Supports
Rather than jumping into having surgery it was agreed that I should try out other bags and supports. I have been using hernia supports on occasion but due to the uncomfortable nature of them and how they can hinder how the bags work I have only used them for exercising.
I have been given some new bags featured a baseplate with holes that allows you to attach a waist strap to it. It’s designed to help keep the bag on if you are experiencing issues but I’m trying it out to see if it helps reduce the profile of the hernia. Later in the week I will try a different brand with a double strap and based on how I get on I may switch from my current bag.
Colostomy Irrigation
Based on the discussions about how I’ve been getting on with the bags such as the output, how I feel when things go wrong or when the stoma decides to become more vocal in public, the subject of irrigation was brought up. I have heard of irrigation but didn’t know what it entailed. Essentially it involves flushing out your bowel regularly (e.g. every 24 hours) so that throughout the day you bowel no longer functions and you don’t have to worry about changing the bag throughout the day and you can even get away with wearing just a stoma cap rather than a bag.
The process of irrigation can take 45-60 minutes every day and according to the stoma nurse once you start irrigating, there’s no returning. It sounds an interesting idea but not sure about the extra effort. It’s something that needs more research and perhaps speaking to people for their experiences with it.
Fitness
Post-surgery in January I was keen to get back up and running again for a while things were going well. I took things easy with walking at first followed by short distances runs but issues with the Ken Butt meant that I stopped running as a precautionary measure. I continued regular walks for commuting and pleasure but after a race in the middle of July I stopped running and haven’t run since (apart from the sneaky sprint for a train!).
Unfortunately more surgery in July and September meant that it was even more imperative not to run in order to not upset the wound healing process. During this time I could have visited the gym to do some forms of exercise but I think due to how I was feeling mentally I decided not to.
Recently I have started visiting the gym again to try and boost myself and to maintain fitness levels for when I get back up and running.
Despite the couple of months this year where I was running again, it does feel like I stopped back in April 2018. When you’re out of action for that length of time you do have doubt about whether you’ll want to return.
One takeaway from my specialist appointment was to speak with someone at the gym to get an exercise plan set up to build up my core to try and prevent the parastomal hernia from getting bigger.
Not one to waste time I headed straight to the gym after my appointment to get something set up. Initially they seemed apprehensive about the hernia/bag combination and wanted a doctor’s note but after reassurance that it’s not a big deal and I’ve already been doing exercises with the hernia a session was set up for the weekend where they could take me through some exercises. I probably could have figured out what to do but may as well make the most of my membership and the person I spoke to was keen to use me as a use case for what exercises to give someone with a parastomal hernia.
Output Issues
I’m not one to analyse the things I consume to see if there’s anything that affects the output into the bag but after some accidents and near misses recently you wonder if you should be. But I don’t want to go through the hassle of figuring those things out and then adjusting things to try and get into a routine – I just want to live a normal life and not have to have those worries. That said, I do understand that you can make those adjustments in order to live a normal life.
Based on this discussion with my stoma nurse she introduced me to colostomy irrigation. The result of irrigation sounds interesting, the actual effort out into irrigation not so interesting. This will definitely require some thought.
Mental Health
2019 has been all about the stoma and everything related to it but 2018 was all about the Crohn’s flareup and the prednisolone and Humira treatments which didn’t work and prior to 2018 there were the random perianal abscesses. Collectively they don’t help your mental health. And whilst there was just a sliver of light at the end of the tunnel, I needed to try and do something.
Throughout 2019 I hadn’t felt great and the horizon of hope and ending to the medical complications I was experiencing was always moving further and further away so the hope of getting back to normal was always just out of reach. I needed to try and address the situation and I knew that the options were essentially medication and/or counselling so I opted to pay to see a councillor privately.
This was a big step for me as it’s so easy not to address situations but to ignore them and try and battle through it but I was concerned that this approach would just make things worse.
I have had one session with a councillor and it proved to be a tough one – I made good use of the box of tissues in the room. The whole experience was new to me and it quickly became apparent that their role is to encourage you to share and through this process figure out answers rather than give you advice. I’m not sure how this approach will work as when asked what I want from these sessions, I’m not sure how to answer. That said, I am still committed to trying a more sessions.
Making Time For Myself
Over the year, seeing the nurse on a daily basis has been a chore, but manageable. Seeing the district nurse on the weekend is more than a chore, it’s a pain in the Ken Butt. The nurses see all sorts of patients, some of which need to be seen at specific times and they also have emergency appointments which could come in after they have started their shift.
Subsequently, they can’t give you a time when they will visit or even a window so you need to stay in and wait. This means that you are unable to plan days away and if you like walking early in the day you have to get up at the crack of dawn to squeeze in a walk before getting back for around 9am. I’m an early riser so this isn’t an issue but when the days start to get shorter this means that the walks also get shorter.
It reached a point where I couldn’t keep seeing the nurse either both days on the weekend so I would reduce it to one and on the day they didn’t come dress the wound myself. I would then use that day to head out on a longer walk or travel to photograph a race. This would help keep me sane and I could manage to change it myself.
After the last surgery and the complications from overgranulation I needed to switch back to visits from the district nurse but now that is under control I have managed changing the dressing myself.
All of this could have been very different had I mentioned it to my surgical care practitioner earlier. She said as I was an early riser I could have arrange for a night nurse to visit me around 6am before they were due to finish. This would have been ideal for me and would have saved me hours of waiting each week.
What’s Next?
In the short term I’m going to experiment with different bags and hernia support options to see if they help reduce the profile of the hernia. I’ll also work through exercises to try and strengthen the abdominal muscles which won’t help reduce the hernia but may help prevent it from getting worse.
Regarding colostomy irrigation, I need to do more research and try to speak to someone who irrigates to see how they get on and how it fits into their lifestyle.
Hi Robert, I’m not sure what’s happened regarding twitter but I’ve had to follow you again and can’t dm you! I’m 6 weeks post op and have just been put on antibiotics for a pilonidal sinus in tail end… I was looking for some advice or an idea of what to expect if possible?
Hi Craig, not sure what happened with Twitter. How big is your sinus? I had one for many years prior to surgery and surgery made it worse. 9 months post-surgery things were opened up again and it was sorted out. Have they indicated that they think antibiotics would sort it?