Ostomy life can take some getting used to, and for some it can take longer to adapt to their ostomy life, which is okay as we all have our own unique experiences of what ostomy life means for us.
I had my first stoma in 2013, it took me a few months to get into a routine and for my stoma to settle, also the process of trial and error to finding what appliances best suited me and my stoma. Once everything settled I found I had a good experience and could go 7-14 days between bag leaks and my skin and stoma still looked great.
So when it came time for my second stoma, which needed to be removed as a tumour grew attached to my stoma and the tumour became necrotic which was affecting the skin around my stoma and it was breaking down.
But I wasn’t worried about this stoma and as I already had gone through the whole ordeal of adapting to stoma life, I didn’t give a second thought to this stoma.
…. I thought it would be the same.
BOY I was wrong.
My stoma this time round was rather small at the skin surface, which was an initial shock as it was around 25mm compared to my 50x70mm stoma before it.
But that wasn’t what went wrong.
Day 3 my stoma had been pulled down under my skin, called a retracted stoma, and as the stoma was pulled down it pulled the stitches with it and it was so painful I cried for weeks.
It was all due to my existing watermelon-sized-tumour was attached to the piece of small bowel that created my stoma and forced it under pressure to be pulled down and retracted.
It was painful. Oh, so painful. It also wouldn’t stop leaking. I was changing my bag every hour and doing 24 or more bag changes a day.
I spent an additional 4 weeks in hospital just trying to find the best appliances to get me home, I was in hospital in Sydney which was 800km from my home. I was isolated and alone and had no support network surrounding me.
I really struggled to adapt to this stoma, even 2.5 years on I am still trying to get used to it and the constant leaks.
But having a problematic stoma, when I had a great stoma and knew the freedom of a good stoma could bring, made me feel rather upset and I found my anxiety had increased tenfold. I feared leaving the house as my stoma would leak. I became housebound and depressed.
It was hard knowing how life was like before and I really resented this stoma. Yes, I know it was keeping me alive and I was grateful for that, but I really hated the diminished quality of life and was regretting the surgery to remove the tumour, knowing full well what it meant to keep it and my original stoma (death would be inevitable). Knowing all this was just hard.
What made it harder were the words of my surgeon, “Talya, you just need to find a way to get used to this fast, there is no other options or no further surgery. You need to find a way to live with this for the rest of your life, leaks are just going to have to get used to”.
I will be honest, I cried a lot during the first 12 months of this new stoma, I still sometimes cry when I have a bad day of constant leaks or if I have an embarrassing leak – I have had a few, including at a wedding – and it does make going out and living my best life that little bit harder.
If it weren’t for my husband or my stoma nurse I wouldn’t have gotten this far. My husband will help me with changes with not needing to be asked, and will even help clean me up after a bad messy leak, and he takes it all in his amazing stride. My stoma nurse has been a constant support, she helps me when I have issues, but she also helped to patiently work with me as we tried to find a solution that lasts as long as it can, which is the solution I have been using for just under 2.5 years.
My stoma sits 5cm or more under my skin, basically I poop out of a hole that looks like a belly button. The site has gotten smaller over time, so I have to dilate it with some strange looking stoma *** that helps to keep the hole open at the skin level. But inflammation and scar tissue adds to the trouble of keeping it open.
Having had experiences of a good and problematic stoma, has me feeling grateful for the time I had where I could live and lead a good life with my stoma and was grateful for that experience. But this newest stoma has given me lessons and experiences I hadn’t imagined, like learning to change my bag on the train, in the car, dealing with public bag leaks – it has all helped me build up a strength inside me I didn’t know I had.
I honestly at the start of this newest stoma couldn’t imagine a life with a problematic stoma and thought my life was surely over, but it wasn’t and it hasn’t been and I have tried to do my best to make light of a difficult stoma and learned to be prepared.
I take 5 changes of supplies with me everywhere I go, I also take a spare change of clothes, including underwear, and have a bag for dirty stuff. It pays to be prepared.
I also have come to realise a new respect for others who have difficult stomas and the troubles that it brings, I am no longer in the mindset that everyone has the same stoma journey and that not all stomas are equal, just like humans, we all are different.
Next time you hear someone mention that they are struggling with their stoma, whether it be due to leaks or a retracted stoma like mine, don’t just say “you must be doing something wrong” or “you need to find a better bag system” as it isn’t as easy as that. Try and be more mindful that people often have tried everything that they can access to make the best of their difficult stoma and don’t make them feel like they have done something wrong…. All they are looking for is someone to say “I get it, it is hard, I am sorry you’re struggling today”. They just want reassurance and love and support.
Not everyone has the same stoma experience and some struggle more than others.
If you do have a difficult stoma, please reach out to your stoma nurse or surgeon if you haven’t already as they were great support to me.
I also can’t recommend highly enough to seek a counsellor support too, I was struggling to come to terms and adapt with my newest stoma but through the help of my counsellor I was able to find a level of acceptance and resilience within myself I didn’t know I had.