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What do you call your stoma?

When I first had a stoma, the nurse told me that lots of people name theirs and it helps them to come to terms with it.  I believe I wanted to tell her to f**k off, though I held my tongue.  I just wasn’t ready to have that conversation.

I am comfortable with my stoma now, but at the time I remember being laid in HDU and not wanting to look down. I just didn’t want to see it or deal with it, it was such a huge ordeal to know that my body had changed so much.  I remember laying in the bed and turning my head to the window, counting the slats of the blinds as they checked my wounds and changed my bag.  I couldn’t look…

When I did, I was shocked.  A stoma (when we are talking about an ileostomy or colostomy) is the end of your bowel that is pulled through your abdomen wall and stitched to the skin.  It looks like a red or pink, wet, soft lump with a hole in the middle.  So it is a big shock when you see your insides on the outside for the first time!

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But over time, I got used to it quite quickly, I realised it was my life line, that it had saved my life and it was nothing to fear.  It was part of my body and I started to understand that people name their stomas as part of the idea of coming to terms with their new body.  Naming it can feel like you are welcoming it into your life.

I named my stoma Barack Ostoma… I wanted something funny but also quite grand!  I then had jpouch surgery and so Barack left office, as it were.  After 18 months of chronic pouchitis, I had stoma number two.  I only have one stoma now, it is a permanent ileostomy, but in numbers I have had, it is the second one.  This one is called Babadook, due to the weird creaking, farting noises it sometimes makes and the fact that baba and dooky are terms for poo, so it seemed to make sense.

sam cleasby blogger ostomy ibd woman with a colostomy ileostomy bag stoma

 

So my question is, what, if anything do you call your stoma, and why did you want to name it or why did you choose not to name it.

 

Sam xx

15 replies
  1. Grace Cox
    Grace Cox says:

    I call my urostomy stoma..AGGI..for aggrivation..I kept referring it to her..then just went to Aggi..I tell her off when she plays up and talk to her..on a regular basis..I have no problems with my stoma..and think I’m just grateful to have no pain after 3 years of it..

    Reply
  2. Ruth Cox
    Ruth Cox says:

    Mine started off being called Damien when it was giving me loads of grief and leaking all the time!
    I then decided I needed to call it something nice so I could start to like it / come to terms with it. It’s now called Bud because it’s so wrinkly like the bud of a flower and also because that’s short for Buddy. I’ve also just noticed the link to Budweiser!!!

    Reply
  3. Tanya Mawer
    Tanya Mawer says:

    I used to care for my grandmother who had a colostomy. She called hers Rudolph because he was so red and bulbous like a round nose. I used to bath her and change her bag as and when it needed it (she lived with us). I remember she had a hat pin which we used to prick in the corner of the bag to stop it blowing up with gas and coming away from her stoma. It made our interactions with Rudolph much easier and lighter being able to laugh and joke about him. It has stayed with me since she passed how she dealt with the odd noises, accidents and other issues of having a stoma with humour and that in turn made everyone caring for her much more relaxed about it all.

    Reply
  4. Dawn
    Dawn says:

    Mine is permanent I named mine windy willy because it makes lots of noises,, also it reminded me of a willy. Even now my family ask how’s willy lol

    Reply
  5. Josh
    Josh says:

    Mine isn’t a significant enough part of my body or life to warrant having a name. There also isn’t any medical evidence to suggest that naming your stoma aids coming to terms with it, in fact a lot of people I know who use their “pet name” exclusively/obsessively are the one’s who are still struggling years down the line, so I sometimes think that the opposite might be true. I didn’t give my arsehole a name when I had one of them, why should this be any different?

    Reply
  6. Julie
    Julie says:

    I don’t have one just yet (due in the next few weeks) but he will be called Piglet. Why? ‘Cos he loves to hang out with Pooh! (And I think a Loop Ileostomy looks like a piglet’s snout x)

    Reply
  7. Stuart Taylor
    Stuart Taylor says:

    I have had a colostomy for about 18 months now and knew from day one it was going to be permanent. It came as a result of colorectal cancer and was first formed within about five weeks of my diagnosis though they have fiddled about with it a couple of times since.

    Somehow within 24 hours of the first op (or at least 24 hours of coming round) “it” became known as Sydney.

    My partner claims the original idea the first weekend when my nice mefical team somehow mislaid the instruction I was to be given whatever pain medication I desired. Once i eventually got some relief I think in my morphine enhanced memories I remembered the Scottish folk singer Sydney Devine who was popular when i was young. I had though then he spouted s#i#e so it seemed an appropriate name and it has stuck (and pancaked, and bled, and herniated, etc.)

    I find it it useful when out and about or with people who have yet to be bored with my medical history. Telling the other half I am just checking on Sydney or replying to questions about Sydney’s wellbeing seems easier and spares the blushes of others.

    Personally I think the more we can make light of our stomas the better and a nickname helps.

    I did the same with my tumour and that even raised a smile with my Oncologist and stoma nurses. Might have been helped by being a word play on our current Secretary of State for Health
    🤔

    Reply
  8. Cherie
    Cherie says:

    My first stoma was called Sophie, she was really pretty like a little rose. But she was really temperamental, a right little drama queen! I then had the first of my j pouch surgeries and Stan was born. He looked really angry, a bit like the hulk, so he was named after Stan Lee. Weirdly for a loop Ileostomy he was much better behaved than my first end Ileostomy. I’m now almost 4 years down the line after my final j pouch surgery and I still miss Stan but it is amazing to be able to fart again!

    Reply
  9. Michele
    Michele says:

    My 8 year old permanent stoma is called Lola, we sing ‘Lola she is a stoma, she gives of nasty aroma’ to the tune of Copacabana. It was some light hearted humour in the hospital post surgery. Myself and family have found it useful to have a name for the stoma. I can say just going to change Lola, etc and no one else has a clue what we are talking about. Or my daughter will ask ‘is that Lola making that noise’. Wouldn’t be without Lola, she gave me a new lease of life after 18 years of suffering from ulcerative colitis which was all through my large intestine and started controlling my life!

    Reply
  10. Clare Mee
    Clare Mee says:

    Hi I named mine Tomas because it was an anagram of stoma, my friend said it looked like a tomato so Tommy tomato is what my stoma nurse calls it. I was in hospital with a few others having stomas and we decided to name them together.

    Reply
  11. Katy
    Katy says:

    My son call his simply stevie stoma… not very original but it helps when we say happy birthday to him 🙂 He got his when he was 8 after being diagnosed with UC at 4 years old – he is now 13 and has had 51/2 years trouble free *touch wood*

    Reply

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