Here’s Winnie – meet my temperamental stoma

Yesterday me and Winnie celebrated our 10-week anniversary. But, because all I remember about the day the surgeons ripped my once flat stoma open and tore my poor and battle worn colon out, is being dopey and drugged up and feeling the sort of pain and soreness that you would expect a person to feel when a major organ has been ripped out of their body, I tend to think of the day after the op as the first real day me and Winnie spent together.

So true!!!

So true!!!

A lot has happened since I woke up groggy from the massive dose of anesthetic and realised that my worst fear had finally come true – my once flat stomach had been torn apart and a giant pink stoma was now erupting from the surface. Me and Winnie have been on a lot of adventures together, faced horrible challenges, snuggled up in sweat pants with hot coco when we’ve not been feeling well, and have had some God awful ‘I hate you so much’ fallings out.

I’ve struggled to accept her need to constantly make embarrassing farmyard noises in totally inappropriate situations, while she has put up with my inability to stay away from foods that make her sick (I promise you not matter how much you hate it, I will always eat loads of spinach, even though you spit it out whole). I’ve put up with her non-stop attention seeking and ability to fill-up faster than the speed of life, while she has struggled to keep up with my stubbornness and inability to put my feet up and just rest.

We go together like Brie and Bacon

We go together like Brie and Bacon

We have had our highs and lows. Ok, more lows than highs at the moment, but just like any long-lasting relationship at first you have to learn to put up with each other. After living for 25-years with my colon, I now have had to get used to life without one of my major organs and accept Winnie as an alternative to using my arse to go to the loo ๐Ÿ™‚ it has been a major learning curve, but one I have got used to and accepted a lot quicker than I ever thought I would.

Now that 10 weeks have passed I thought it was about time that I showed you Winnie. I mean I’ve been telling you all about her, praising her and bitching about her for the past two months, and I, very rudely, have never introduced you to her. Now to everyone who said they wouldn’t read my blog if there was anything gross in it, I apologise, but even though she sometimes (well a lot of the time) does gross things, Winnie is NOT gross…she is totally natural, and I would still be seriously ill without her. So here she is. My surgeon and stoma nurse say she is perfectly formed, and she is ๐Ÿ™‚ n.t I’m sorry about all the scars and how yucky they look, but if I wait for them to heal without showing you Winnie we could be waiting for years!

So here you can see Winne, Oscar (who is poking out of my stomach and causing me all sorts of problems at the moment) is the one who looks a little like a second belly button or ย thumb print, and Felicity the fistula. You can also see my very itchy scar from the operation, surrounding my almost non-existent belly button, which has been swamped by the itchy rashes caused by plasters, adhesives and dressings. I thought I would always hate this scar, and at the moment I do, but I know that I will grow to accept it in the end โ€“ well hopefully.

Winnie the very temperamental stoma, released for good behaviour for a minute or two

Winnie the very temperamental stoma, released for good behaviour for a minute or two

Winnie is pink, problematic, has a split personality disorder, and is 25mm big (which is a hell of a lot smaller than she was when she first came into this world). We have days where we hate each other, but you know what she has saved my life, and she is a small price to pay for a life without the crippling pain of Crohn’s Disease.

I didn’t show you Winnie before because I was scared to. It sounds silly now but I have been dreading this post, and even though I wouldn’t want to admit it I was putting it off. But now I have show you her I can’t understand why I was making such a big ho ha about it. So, say hi to Winnie world!

As you all know, before I was forced to have my emergency ileostomy op I was scared, well shitless, about the idea of having anyone go near me with a sharp knife to slit open my poor skin – I won’t go into how terrified I was about the idea of having a stoma, or we could be here all night! I guess I never thought I would be sat here showing the whole world a picture of her, I didn’t think I would even be able to look at her.ย 

And here she is looking very sore from the hot weather :( I'm sorry Winnie - not her best look

And here she is looking very sore from the hot weather ๐Ÿ˜ฆ I’m sorry Winnie – not her best look

Despite the fact I had narrowly avoided having the surgery many times before, in the days before my operation 10-weeks-ago I may have accepted the idea of having an ileostomy bag but, I have to admit, I was still bloody terrified about having a stoma. After drawing those little x-marks-the-spot marks on my then flat and untouched stomach, and chatting to me about sizes of bags, accessories and all the other fun things that as a fashion mad lady I would usually love to hear and chat about (not in this situation tho), my lovely stoma nurse Maria gave me a pre-ostomy reading and prep pack.

This was just two days before the surgery, so there was no backing out. The slot was booked, the surgeons prepped, and my bowel was rapidly disintigrating…so, really there was no backing out of it. So I opened the pre-op pack and started devouring the literature in an attempt to get myself ready for my new arrival. All the shiny coated booklets where filled with images of happy smily people drinking coffee and taking bike rides in the sun and they were eating all the time! I mean, what’s with all the eating? Nearly every page was filled with images of either shiny-grey-haired pensioners laughing over orange juice and croissants, or smiling families tucking into picnics on sunny lawns…all the booklets seemed to be telling me is YOU CAN EAT ANYTHING WITH AN ILEOSTOMY!! And that really wasn’t the reassuring message I needed….it all seemed really over-glossy and fake, I needed something real, a picture of someone who was just, well like me.

My stomach the night before my operation - wish i had never taken this it makes me feel sad to look at

My stomach the night before my operation – wish i had never taken this it makes me feel sad to look at

What I needed was maybe an extract from someone’s blog, the real truth about how someone my age would feel after such a major operation, you know WHARTS AND ALL! I think if I could have read something honest, someone who said they had also felt really frightened, and that it hadn’t been all plain sailing with their ostomy but that it had been worth it in the end, that would have been a great help… so if you’re reading this and you’re from one of the pharmaceutical companies please, please, please think about putting in some honest stories from young people, instead of just filling those brochures with fake, plastered on smiles which wouldn’t look out-of-place in a pension or life insurance commercial.

Me with all my gadgets - my utility belt :)

Me with all my gadgets – my utility belt ๐Ÿ™‚

Anyway, anyway, anyway, inside this pack there was a fake stoma and a bag, so that you could basically give-it-a-go, sort of try it on before you buy kind of thing. It wasn’t an enjoyable experience but I attached the fake squigy foam stoma to my marker x, filled up the bag with water from the communal tap on the ward, and attached it to my stomach. Then, according to the booklet, I was meant to walk around with the bag attached to me for a couple of hours to get used to the feeling of wearing it all the time, but it was just too heavy and uncomfortable, and the first time I emptied it, it made me feel so emotional that I started to cry as the water gushed from my stomach. So I took it off…I just didn’t want to have to deal with it until after the operation, when I guess I wouldn’t have a choice.

Cutting all my new manuka honey bags :) thanks Charter :)

Cutting all my new manuka honey bags ๐Ÿ™‚ thanks Charter ๐Ÿ™‚

What was worse than that was I had realised that I didn’t think I would be able to deal with touching and changing my stoma myself. I was really worried that I wouldn’t be capable of it, that for the rest of my life a nurse or a friend would have to deal with her. This was because when I was reading the literature I couldn’t look at the picture of the stoma…to me it looked pink, gross and slimy. A bit like a willy or worm sticking grossly out of someone’s stomach..and this one was a perfectly formed, no stitches, no poop, no blood stoma, so how was I going to be able to deal with mine post surgery? I did, but that is a different story, for now I want to tell you that I put my hand over that horrible picture and wouldn’t look at it even when my nurses tried to get me to.

I even took a picture (see above) of my stomach the night before the operation. I guess it was a souvenir picture so that I could always remember what my stomach looked like before the scars and the stoma. You know, something to show the grandkids and all that. I wish I had never taken it, and have deleted it off my phone, as I was spending too much time looking at it and feeling sad.

But now, as I show you this picture I know that I am 100% fine about having a stoma. I feel fine about the idea of having Winnie for the rest of my life. I mean, if that means a life without the crippling pain of Crohns, the constant toilet visits and the inability to follow my dreams, or even nip to the shops for fear of having an accident, having a little pink lump on my stomach that occasionally farts in public is a small price to pay.

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5 thoughts on “Here’s Winnie – meet my temperamental stoma

  1. Thanks for this! I’m in my early 30s and have had 2 lots of surgery before, but they’ve always joined me back up. However I may be looking at having a stoma this time round, and like you am terrified! However, I really appreciate your honesty and that it’s been worth it!

  2. Wow! Thank u what a great blog, my dad has had his Stoma (tomato) since 1984, when I was 7, I don’t really remember what it was like for him before the operation, but I can’t imagine it was very nice! Apart from the odd ‘fart’ and the time when he lost to much weight due to an unrelated illness, which made him lob sided! U wouldn’t know, my friends got used to him sitting there with his jean button undone.
    I am very proud of him, and he is my hero. I can’t wait to show him this blog!!! Thanks again and much love to u and Winnie!
    Maria x

  3. You are an inspiration xXx congratulations on your journey so far and I wish you well on your life long journey to come ๐Ÿ™‚

  4. This is a really interesting story and I think you are really brave for dealing with this the way you are doing. I wish you all the best

  5. Pingback: Show off your tummy for IBD #GetYourBellyOut showing Colitis Who’s BOSS | The big stoma bucket list

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