Today mark’s exactly one year with a stoma and what a rollercoaster of a year it’s been. There’s been ups and downs, set backs and some positives. Overall it hasn’t been a great experience but I’m feeling a lot more positive about the year ahead.
I’ve written about the ups and downs of my stoma in quite some detail so there’s no need to go over it in great detail so here’s a timeline of events.
- January 15th – Had a new bum installed
- January – Surgery caused an infection so Ken Butt was opened slightly causing a wound which needed daily dressing
- January/February/March – Recovery time
- March – Started exercising again.
- April – Started running again and completed parkruns and a 10k trail race
- April – Wound still not healed and a pilonidal sinus starts to cause issues
- May- Continued running
- May – Parastomal Hernia starts to make an appearance
- June – Wound still not healed. Is the pilonidal sinus joined to the wound?
- July – Completed a 14 mile trail race
- July – Exploratory surgery to see what’s happening with the wound
- July – Stop running as a precaution in case it’s causing the wound to not heal
- August – Already wondering at this stage if 2019 is a write off
- August – Feeling noticeably depressed
- September – MRI reveals that wound and pilonidal sinus are joined.
- September – Surgery required to reopen the Ken Butt and create a new wound
- September – VAC fitted to aid healing
- October – VAC removed after 3 weeks
- October – Wound still need daily dressing changes
- November – Meeting with surgeon, wound specialist and stoma nurse. Hernia surgery discussed as well as colostomy irrigation. Wound specialist estimates another 4 weeks before wound is healed.
- November – Feeling extremely low so start counselling
- December – Wound still requiring daily dressing changes.
- January – Admit to myself that I regret having surgery
- January – Start colostomy irrigation. Instantly a success.
- January – Still requiring daily dressing changes. Probably at least another 3-4 weeks left.
- January – Made the decision not to have hernia surgery.
- January – Still seeing a counsellor and mentally I’m seeing improvements.
- January – 6 months since I stopped running.
- January – 1 year anniversary
- February – Back on track? (I can be hopeful, right?)
What a rollercoaster of a year it’s been. Entering 2019 I was hopeful that I would make a steady recovery and get back to doing what I enjoy and for a period I did but through a combination of events everything was put on hold. I had a wound that wouldn’t heal, a parastomal hernia, I wasn’t getting on well with the colostomy bag and my mental health was suffering. It was a tough, tough year.
Enough of the Negatives, What About the Positives?
When you are constantly living with a non-healing wound, multiple surgeries, infections, a hernia, a stoma that you aren’t getting on with, mental health issues and not being able to do the things you enjoy, it’s hard to notice any positives. But I have tried to seek out the positives and there are some.
- Even though I haven’t got on well with the stoma, it has allowed me regain control over when I go to the toilet so that when I’m out I don’t have to be worrying about where the next toilet is.
- I no longer have to worry about the incontinence I was experiencing, particularly when I was in a field photographing a race. Now I don’t even think about pooping.
- I had a taste of what it’s like to run with a colostomy bag and how I can avoid having to queue up to use the toilet before a race. That’s going to be even better with irrigation.
- I’m saving a lot of money on toilet paper!
- I’ve had a good year of getting to know my nurses. I’ll soon be moving and they’ll probably be glad to not have to see my butt anymore but it’s been nice getting to know them all.
- I have gotten to know people who are in similar situations to me which is great when it comes to seeking advice.
Will 2020 Be Different?
Yes! Yes it will!
Despite a tough year, I feel as though this year will be much, much better. I find it fitting that I’ve started the colostomy irrigation at the start of this year, much like I had the stoma in January last year. It’s almost like a second chance. The irrigation has been such a game changer for me despite only doing it for a week. Even though I could have started it not long after surgery last year, I think I needed to go through what I’ve been through first.
Do I Still Regret Having a Stoma?
I think it was required for me to go through the process of whether I regretted have the surgery done and since admitting that I had regretted it, I have reflected on it and am trying to accept that whenI made the decision to have the surgery, I was desperate, I was very ill, and I was suffering at the hands of Crohn’s Disease. I had other options but at the time the surgery was the best option so I have to accept that decision.
Since writing the blog post about the regret, things have improved and I’ve accepted that I’ve made the decision (whether it is right or wrong is perhaps irrelevant). Colostomy Irrigation has made a huge improvement in how I deal with the stoma and has improved my mental health.
Having the stoma was meant to enable me to get my life back on track after the Crohn’s flare up but came with downsides. The irrigation is an even better solution as I’m now not worrying about the Crohn’s Disease and I’m also not worrying about the stoma. I can now see how I can achieve my original aim.
So do I still regret having the stoma? I don’t think I do now and it’s ok to change my decision based on a period of reflection and having a taste of what life can truly be like.
My wound is still yet to heal (see below for latest photo), but I’ve changed how I look at it and rather than trying to attach dates to when it will be healed (after all, nobody can predict how your body will heal a wound) I’ve decided to give myself a reward of purchasing a new pair of trainers which I can use when I can start running again. This change in mindset has helped me become more positive and contributed to me feeling better overall.
Latest Wound Photo
I have decided to try and non-operatively manage my parastomal hernia (although that decision may change) so that once my wound is healed I can get back to running and making plans to start travelling the world again.
Embarking on colostomy irrigation has been a quickly been a game changer for me and I’m really looking forward to reaping the rewards of spending the time each time irrigating.
At the start of 2020 I was unsure what the year may bring but now I’m eagerly looking forward to it.