Adjusting To Life With An Ostomy

adjusting to life with a stoma

Not everyone finds it easy adjusting to having a stoma whether it was an emergency or planned. But I asked varying ostomates around the world that are in the “Making Ostomies Cool” group how they got their stoma and if they adjusted and how.

When I was 21 I was about to go in for my first surgery; to have my large bowel removed and a jpouch formed, not one mention of the word stoma happened until the day before my surgery when a stoma care nurse started drawing on my stomach. I vividly remember asking her what she was doing and why, she simply said that she was marking me up for a stoma. BOOM! I hit the roof and I said I would kill myself if I had one. Yes I am very ashamed to admit that but I will always hold myself accountable but when I saw the surgeon (who was incredibly arrogant) said that I wasn’t having a temporary stoma formed even though that was the norm. I clearly wouldn’t have adjusted if I had it that time round and even with how that hit me I can’t possibly imagine what it is like to wake up with one as an emergency.

Fast forward to being 28 and so sick that I refused more medication, the way I looked at it my Ulcerative Colitis was supposed to be “cured” whereas now I know it isn’t, I didn’t want more medication. I fought so damn hard to get a permanent ileostomy as I also wanted to know when it was done it was done. I spent 3 weeks looking at google images of stomas till I could look at one without crying. Shock tactics aren’t for everyone but that alongside copious amounts of research and talking to my stoma nurse beforehand (at the request of my surgeon) I felt like I was ready for the operation and life with a bag. In the admissions leading up to my surgery I made a friend for life who has been through the works and has a stoma, my partner in crime talked me through all sorts including letting me watch her clean her stoma. But you know what the only bit I DIDN’T adjust to easily was? The fact it MOVES good grief it took me what felt like forever to not notice that, 15 months on sure I notice it now and then but not nearly as much as I did. I talk about my early days as an ostomate over on my personal blog.

So how did my polls pan out? These were up for only a few hours but I asked first of all –

Did you find it hard adjusting to life with a stoma?

  • No and it was planned – 38
  • No and it was an emergency – 34
  • Yes and it was an emergency – 25
  • Yes and it was planned – 20
  • Birth defect only option – 4
  • No and it was a planned emergency – 4
  • Yes to my first and no to my second – 2

I then asked those who have adjusted what they did to adjust to life with a stoma

  • Support groups online or otherwise – 48
  • Named my stoma – 17
  • Researched it – 16
  • Humour/make jokes/laugh at it and myself – 14
  • Talking about it every chance I get – 12
  • Being able to do my regular work – 7
  • Birth defect no other option – 3
  • Counselling – 2

I always find the answers I receive about adjusting to their “new” life in the poll questions I do interesting as it shows life with a stoma is so individual and varied.