I made a life-changing decision and I regret it. There. I’ve said it. I regret having a colostomy bag fitted. I regret electing to have surgery and I’m currently where I am due to my decision. I have to figure out how to accept that and then move on.

Why Do I Regret It?

When I made the decision to have a colostomy bag fitted at the time it felt right. I had been through a tough Crohn’s flare up, the repeated perianal abscesses had caused me to be incontinent and treatments such as Humira injections that had worked in the past were no longer working.

When asked by my specialist about surgery, it was a quick yes without much deliberation. This was unusual as I’m the worst when it comes to decisions. Go left or right? Go here or go there? Do this or do that? All would usually be met with an ‘I don’t know’. But I think due to feeling so ill and fed up with Crohn’s it felt the right decision. Whenever I would speak to people who knew someone who had one, the responses were always positive. This helped me confirm that I was making the correct decision.

When I first met my specialist in hospital whilst recovering from the surgery he said that for someone with Crohn’s Colitis it was unusual for someone to elect for surgery rather than continuing to try different treatments. From that moment onwards, the seeds of doubt and regret were sown.

I had a vision of going in for surgery and embarking on a relatively short recovery and enjoying a new lease of life but instead I was faced with a sea of consequences and problems to deal with.

I’ve blogged about everything that has happened but over the year since having the colostomy bag I haven’t got on well with it. I’m constantly thinking of it, constantly reminded it’s there by the parastomal hernia causing it to protrude, it balloons, I get pancaking, I get occasional leaks, I have embarrassing situations where gas leaks in the company of others, the list goes on. On top of that I’ve had the complications.

I had a taste of the benefits briefly when I managed to start back running again but essentially for the whole of 2019 I was constantly questioning myself over whether I had made the correct decision. And that took its toll on me. My mental health has deteriorated in the last few months and as a result I have started to see a counsellor.

Contemplating where I am right now

What Would Life Have Been Like If I Had Not Had Surgery?

That’s a question I’ve asked many times and I’ll never know the answer but I do wonder if I had tried another treatment such as infusions would the Crohn’s had gone into remission? If it had there would still be the risk of perianal abscesses (which were becoming a yearly occurrence) but I may have got back to some form of normality and would have been able to start planning things again such as holidays. Due to the complications from surgery, and the decision as to whether I have the hernia operated on, I’m currently living day-by-day rather than planning long-term and this is contributing to the mental health issues.

I wonder about how many people actually elect to have this surgery when their hand isn’t forced by something like bowel cancer or a particularly bad case of Crohn’s or Ulcerative Colitis. Should I have elected for the surgery rather than being forced to have it? Having those thoughts all the time aren’t good which is why I have to try and accept that I’ve made a mistake.

Why Am I Doing This?

I’ve tried to remain positive about the future and how I will eventually get there but when ‘there’ feels like a horizon that you can never reach, you start to doubt whether you will ever get there. The counselling sessions have been tough, really tough. When you start analysing the physical challenges you’re facing and discover a whole host of underlying mental issues it does make everything seem so much more difficult.

Part of the process of dealing with everything, in particular the physical issues, is to accept things, to accept that mistakes may have been made and much like when you lose a loved one, you have to grieve for the old you that you lost. The theme has come up a few times in counselling sessions but an emphasis was made in the session this week. It’s a difficult concept for me to grasp as it feels more of a metaphorical loss rather than a physical loss like when you lose someone but I have lost a physical part of me. I’ve had some pretty important parts of me removed.

My decision to remove a part of body to help regain a better life has introduced a new set of problems and exposed more underlying issues. I’m in this situation because of my decisions and no matter how you look at it, part of this process it to accept that I made the decision, it didn’t go to plan and with the hernia issue, I’m faced with another big decision to make.

But What About The Good Things That Have Happened?

There have been a lot of good things that have happened this year. I’ve achieved many things, I’ve visited lots of new places, I’ve met lots of new people, I’ve continued my hobby of photographing races, I’ve managed to run a couple of races and whilst it’s good to focus on all the good that’s happened, I have to address the bad that’s happened.

During conversations with my counsellor she said it was good to recognise the positive things that have happened since surgery but it was also crucial to recognise the negative things that have happened and that may involve visiting dark places. Having being there this year I questioned why I should intentionally go back there but visiting it again may be required in order to accept what’s happened and move on. It’s not a nice place to be, both for me and others that know me, but focusing on just good things, you’re not addressing the negatives.

2020?

Right now, I’ve entered 2020 still seeing the nurse daily (click below if you want to see the current status of the wound (taken NYE) – it’s almost there!), I’m seeing the stoma nurse on January 8th to give colostomy irrigation a try (a decision which, whilst not permanent, is one I’m very worried about and how it will affect me mentally), and whilst crap at decision making I feel as though I want to set the wheels in motion for hernia surgery.

Latest Wound Photo

So 2020 isn’t starting great and I have no idea how the year will look. I hate that feeling. I want to be able to book another USA road trip with confidence, I want to be able to start booking races again, I want to be able to start revisiting the races I used to enjoy, I want to start running ultra marathons again. But if embark on hernia surgery then who knows what 2020 will look like. Most of 2018 was a right-off, as was 2019, and I’m starting 2020 not knowing what it will bring – good or bad. By trying to accept the decision I made to have this life-changing surgery I’m hoping it will allow me to deal with things going forward.

What’s Next?

Just getting it out there is one thing, actually accepting, and truly accepting my decision, is going to be another thing. I’ve no idea how to truly accept a decision like this. This isn’t a mistake you can’t learn from but to move forward it’s something that I need to do.

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Diagnosed with IBD in 2002, I have experienced the usual ups and downs of having a chronic disease and tried numerous medications but the time finally came in 2018 to elect to have surgery to improve my life. I had the surgery in 2019 and this is my journey having a 'New Bum'.

This post has 6 Comments

6
  1. Hi Robert
    I can completely understand that feeling of absolute regret in relation to surgery.
    I had my ileostomy 35 years ago and it’s been fine, five years ago I had a hysterectomy that went badly wrong and has been life changing for me, the feeling of regret is sometimes overwhelming. I now have 3 bags and something called an enterocutaneous fistula.
    I’m going to read your blog tomorrow .
    Hope you find acceptance so you can move on .

    1. Sorry about the issues you’ve been having 🙁 You’re right that the feeling of regret can be overwhelming. It’s hard to know how to get out of feeling that regret.

  2. Hi Robert
    I feel so sorry that you’ve had to go through all this. I had a colostomy last May, but it was due to anal cancer, so I didn’t really have a choice. Prior to the operation I had a horrible perianal abscess and fistula which hopefully have gone now. I really feel for you, it must be so difficult thinking that you’ve maybe made the wrong decision, but you’ve had so many setbacks I’m not surprised you’re feeling this way. However, it’s not the end of the journey, things may get very much better for you in time. This might the worst of it. I also want to say that I haven’t found counselling works for me, the small amount I had made me depressed. But I know it works for many people, and that’s purely my own personal opinion. You sound like a terrific person, I do hope you can get your positivity back. I just want to say that I hope things improve for you, mentally as well as physically, and 2020 turns out to be a good year for you after all. Keep going, I’m thinking of you X

    1. Thanks Rosie. I’m all too familar with the abscesses 🙁 I’m hoping that this is the worst of it but having more decisions to make this year doesn’t help. I’ve tried to keep a brave face throughout the year but towards the end of the year it was finally taking its toll.

      I totally get what you mean about the counselling and am feeling a similar way. I’m going to keep at it but the jury’s out as to whether it’s helping me or not.

  3. Hi Robert , I’ve been irragating, for 6 year, so if you need any advice or help , please give me a shout , i ll help you as much as I can 🙂

  4. Hi, Rob!

    I found your older blog post first, so only came across this one after sending my message. I’m so sorry to hear about the issues you’ve been having. I just hope that things will be better for you this year. It’s understandable to feel what you’ve written above…it’s such a long, zig-zaggy journey sometimes. Grieve as much as you need to.

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