In September 2017, I went into hospital for my second operation of the year. The operation was to reverse my mucus fistula and ileostomy from my emergency operation in May.
The operation didn’t go to plan and I woke up with a looped ileostomy, although my mucus fistula was gone, I was a little disappointed that the reversal didn’t take place. But it was for a reason so I was cool with it, I spent just over 2 weeks in hospital so it was a quick turn around unlike my first stint.
As the months went on, I was getting stronger and was working to get back into work, but I also still had this desire for my reversal in the back of my mind, it was there slowly chipping away. It was something that I couldn’t really get out of my mind, how hard I tried it was always there.
So, after returning to work, well I thought so but obstacles were being put in the way to make the return far from easy, I ended up being made redundant. I believe my stoma was an underlying factor but I had gone through so much I just wanted to move on, but still I felt these stoma shenanigans was going to be my downfall which was to turn out a blessing in disguise. This helped me work on creating my support group ‘stoma heroes’.
I eventually started work in my current job and they have been nothing other than supportive and fully understand my position about a reversal despite it meaning having more time off. Possible problems were continuing to play on my mind in regard to the reversal process particularly after my last two operations where things didn’t go to plan. These issues were at the forefront of my decision-making process (negativity), so I was battling my own emotions and feelings which was hard.
Do I need to have it done?
NO is the answer, so why?
The hard part about it is that I don’t really need to have the reversal but as my consultant explained it would be better for my body to be back to some sort of normal, what ever that was supposed to be. I don’t struggle with skin issues, my equipment is working fantastically well, so I do question as to why I want to do it, and it’s not easy. After seeing and reading what people go through with Crohn’s and Ulcerative Colitis, if I had one of those issues there would be no questions asked, I would be staying as is.
Some days I have laid on my bed, sat on the sofa and at times been day dreaming as to what to do, I would ask people but not really get a definitive response. Ultimately it was down to me, which is fair enough I guess but it wasn’t helping me at all. So, I had to start to get to the bottom of the issue and deal with it. I was keeping emotions away from others, I was struggling.
The what ifs
The what ifs kept coming into play, what if it didn’t work out, what if I was to be fully opened again. If it doesn’t work, what then? If the last 2 years has taught me anything it is that I’m stronger than I think, in fact WE all are. I’ve been through it twice now, so know what to expect. Always fighting against the negative.
But putting a positive aspect to it, I guess I’ve recovered twice from two operations stronger each time, if I end up with a stoma permanently so what? I know how to live with one, I know what to expect and how things will be. So, I’m forever fighting the negatives and trying to change it to a positive outlook.
In January 2019, I met with my consultant to talk about the reversal issue as the jungle drums in my head were beating ever louder. I became a hunter gatherer of information, I searched for people who’d had the procedure done but most had theirs done due to Crohn’s or UC and in many cases, it didn’t seem that it would be great choice to have it done. All I could find was the negative side, I just needed to find those people who had reversal from having diverticulitis and find some positivity.
The more I looked the more information that I was finding out, the notion of a reversal was changing, lucky old me found a few people who had the diverticulitis disease and had been reversed in a positive way.
This seemed to be the turning point of my decision, the decision was made to have the operation done, I know everyone is different and as ostomates all our journeys are an individual thing, but it had taken until October 2019 for me.
I had a routine colonoscopy done by my consultant in the lead up to the decision, whilst looking at the TV screen insides of my bowels I could see that it looked quite healthy and the joins from my previous operations were good, but from my perspective anyway, From the professional point of view it seemed all was good, I guess this made me feel a little more at ease with the choices that were to be made.
I sent an email to my consultant to fact find and help me, I asked about how much bowel had been removed, how long would the operation take and would the operation require me to be opened again. Obviously, the information I received back was just what I wanted to hear, the operation would ordinarily be through the stoma site and having 40 cm bowel removed I should be normal-ish.
Let’s do this
So with this in mind I have decided to go with it and I requested to be put onto the waiting list for the procedure. Now my mind is at ease and I don’t need to over think the issue anymore, the waiting time is 6 months but I can live with that.
I would say that Barry, my stoma, has become a very important part of my everyday routine in my life over the last 2.5 years. I have met and spoke to some pretty inspirational people; I have done things that I wouldn’t have dreamed of 3 years ago. Trio Healthcare have helped me in so many ways and I can’t thank them enough for their help and support, from my random Twitter video (stretchy) a year ago to being a great source of support. I have learnt so much, I’ve changed so much as a person, my empathy towards others has grown and it’s given me a purpose to help others who do struggle.
I started Stoma Heroes support group in 2018, a year later it has evolved into a charity so it’s been an eventful year and doesn’t show signs of slowing down!
I will update you all with my progress once I have a date, I will see if my emotions and feelings will have changed going forward.
Like everything in life, time will only tell.
Published: 20th December 2019