The great ‘stoma’ escape & the never ending leak

This morning Winnie (my temperamental stoma) decided she’d had enough of being

My new padding for ileostomy scar lasted the whole of five hours before falling off

My new padding for ileostomy scar lasted the whole of five hours before falling off

covered up and trapped in her bag and decided to make a break for freedom. At the time I was happily soaping up in the shower, desperately trying to avoid the red raw skin which surrounds my ileostomy op scar and mucus fistula bag, but none the less enjoying the refreshing feeling of washing off the night’s grime in a nice warm shower.In my slightly hungover haze (a few glasses of wine at Andy’s neighbour’s) I was blissfully unaware  that as the hot water poured down over my ostomy bag the flange (horrid word) was gradually breaking away from my skin.

Suddenly all I felt was this heavy feeling and then the bag starting to peel away from my skin. Water poured onto my stoma, who out of fright of the weight, warmth and speed of the water, started to shrink inwards in the fashion of a startled turtle popping its head back into its shell, while I scrambled to hold onto the ostomy bag which was rapidly filling with water and becoming heavier and more water-logged with every passing second.

It was the most stressful shower I have ever experienced. Ok, that’s if you don’t count the handful of showers (if you can call them that) I was subjected to in the days following my ileostomy operation, where I was dragged to the assisted bathroom by a poor and unsuspecting student nurse before being pretty much physically forced to strip down to my birthday suit, before being popped on a plastic garden chair and hosed down at arm’s length. This would be the first time someone other than my nurse or surgeon saw my ostomy bag. To say I felt humiliated as the rather young and pretty nurse soaped my back and gave me shower gel for my ‘intimate’ parts while she prattled on about reality tv and student housing in an attempt to put both me and her at ease would be a severe understatement…I think the word traumatised is more fitting. 

Red raw skin halfway through dressing emergency after leak

Red raw skin halfway through dressing emergency after leak

I don’t think I will forget the poor shaking nurse who was made to take on this task on her face day on-the-job. As she helped me remove my hospital gown (that I was still in even though it was days after the operation) and revealed my bony skeleton, which was scarred like a drug addict from the amount of nurses and doctors who had taken my exhausted state as an opportunity to use me as a human pin cushion, I saw her face actually freeze into a transfixed look of horror and disgust. I was actually appalled for her, it was like I’d witnessed the moment that she realised she would have to do this to other people (both older, wrinklier, and with various scars and bits of machinery and stomas hanging out of them) for the rest of her life, and she’d just realised that this wasn’t what she’d signed up for. But her fleeting revulsion aside, she handled the situation miraculously well and she managed to do a really good job in the end washing away days of blood, dirt and god knows what else…and surprisingly she quickly became my favourite nurse and I like to think I became her favourite patient, as we shared stories of student days and nights out in Chester.  

I have to admit that I had a feeling Winnie was going to try to make a bid for freedom today. To date she has had several failed escape attempts, which have been foiled at the last second by myself, who acting like a watchful prison guard has spotted every attempt Winnie has made to scale her prison cell at the very last second almost by chance as my inner warning alarm has triggered and I have checked on my bag just as the adhesive has started to break free. This hasn’t meant that she hasn’t enjoyed a few leaks. In fact over the past couple of days there have been more leaks than I have cared to keep count of. So far I have mostly been lucky and these have happened in the safety of my own home where I have enjoyed the liberty of having my changes and supplies as well as my own clean bathroom to plug the cheeky rascal before things have got out of hand. I like to think that I’m handling it well but to tell you the truth I’m living in constant fear of my first public leak and for that reason I am avoiding white clothing or (I know this is going a bit too far) standing on white carpets for fear of a poo related incident. 

Having a lovely time out with boyfriend unaware of impending leak

Having a lovely time out with boyfriend unaware of impending leak

The reason for these leaks, which seem to come at least twice a day, appears to be that the flange puckers every single time I try to sit down, crouch, cross my legs. You see my skin is now so raw – as my picky body has an allergic reaction to each and every ostomy product going – it looks like I have set fire to it and let it burn off (my stoma nurse says I look like a burn victim) and the bags are simply refusing to stick to the shiny surface. I’ve tried different makes of bags; bags infused with honey, seaweed; bags which are like sink plungers sucking on your skin; small bags; big bags, but nothing will stay on for more than a few hours, or will stay only if I use meters of tape in an attempt to secure the gaps, but either way the poo will gradually make its way through anything I try to put in its way. And if it’s not the bag it’s the wound dressing leaking, or the fistula bag exploding as it fills up with water in the shower. 

To tell you the truth I’m sick of it all. My skin is so itchy from leaks and allergic reactions I must look like a withdrawing crack addict as I lie in bed holding my hands inches from my chest willing myself not to itch. I feel like taping oven mitts to my hands to stop myself having a cheeky scratch, as I know if I start I won’t stop until I’ve scratched away my whole stomach and look like something from Alien. In fact when the nurse was wrapping my wound up in swathes of bandages, leaving me looking like Michelin Man, she commented on the way my feet twitched uncontrollably as my body fought the overwhelming instinct to scratch scratch scratch. 

So if any of you out there have any advice at all please please please comment below. I really need help before I give into the devil sitting on my shoulder who is constantly waving his pitch fork and whispering “come on…itch it…go on, you know you want to!” HELP!!!

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11 thoughts on “The great ‘stoma’ escape & the never ending leak

  1. Hi there,
    Sorry to hear things are rough, I won’t bore you with my tramatic story of years of crohns treatments, surgeries, complications, etc but I will give you some tips I’ve come across. Last year I had mst of my colon removed in July and in September I suffered a prolapse, twice – to me it was a horror story. Viewing a stoma is one thing having more than 7 inches of your intestine come pushing out is quite another. Anyway with tht surgery my bags would no longer stay and, like you, I grew one ikii sore after another. Finally I tried a convex bag with a super tight ostomy belt. The belt saved me I wore it 24/7 even during showers. It allowed my skin to heal, with minor upsets, and allowed me some peace in lessening the out of house leaks/explosions. If you need more info I’m happy to share my advice on best bags/stoma adhesive/ powder/etc. we could private message or IM. I has a ake down in January and am attempting to regain life extremely grateful to have my life and body (for the time being). Thinking if you!- SS

    • Hi. Thanks for the message. God it really sounds like you’ve been through the mill with this one! That must have been terrifying and exhausting. Dealing with a Stoma is enough without complications like that.
      Yes please do 🙂 I need all the help I can get x

  2. I’m so sorry you’ve been dealing with the skin irritation and itching. I’ve been dealing with some of that lately and it really, really does suck. I switched the type of bag I’m using and it seems to be doing better. My skin is still red but not nearly as weepy; therefore I’m not having nearly the issues keeping my bag on. I don’t think I have any suggestions other than what you are probably already doing (using stoma powder, nystatin powder (antimicrobial powder) & barrier film along with changing my bag about every 3 days). Summer temps & humidity probably don’t help either. Hopefully it will start behaving soon! Good luck and hang in there!

    • Yeh I think the hot weather is really not helping 😦 it’s going down a bit now but the new bags keep coming off at the bottom 😦
      Haven’t tried the powder yet, who is your delivery service?

  3. Heya, sorry to hear you’ve been having so many problems with it. My ileostomy has also been driving me insane with itching! I am also allergic to many of the products available and am yet to find one that actually cooperates with me:’)! So far I think the best think I have been told to try is to take antihistamine tablets or apply a small amount of antihistamine cream around the stoma….for me the cream does work but you do have to keep putting it on quite regularly because the relief doesn’t last probably more than a couple of hours or so – but that’s enough time to get to sleep or be comfortable for a while usually:/! Have to be careful not to put too much on though because inevitably the bag will just come un stuck and fall off…do you put a seal (or doughnut) around your stoma before putting the flange part of the bag to the skin?? Although I still have difficulties on occasions I do find that when I have a seal around the stoma before the bag goes on, I definitely have less leaks than when I don’t have one on.
    I hope I may of been of some Helmand that things soon settle down, Good luck!x

  4. Heya, sorry to hear you’ve been having so many problems with it. My ileostomy has also been driving me insane with itching! I too am allergic to many of the products available and am yet to find one that actually cooperates with me:’)! So far I think the best thing for itching I have been told to try is to take antihistamine tablets or apply a small amount of antihistamine cream around the stoma….for me the cream does work but you do have to keep putting it on quite regularly because the relief doesn’t last probably more than a couple of hours or so – but that’s enough time to get to sleep or be comfortable for a while usually:/! Have to be careful not to put too much on though because inevitably the bag will just come un stuck and fall off…do you put a seal (or doughnut) around your stoma before putting the flange part of the bag to the skin?? Although I still have difficulties on occasions I do find that when I have a seal around the stoma before the bag goes on, I definitely have less leaks than when I don’t have one on.
    I hope things soon settle down, and good luck!x

    • Hi thanks for this advice.. I know it’s exhausting isn’t it! I’ve changed bags and it’s getting a little better. I’m lactose intolerant and can’t seem to find a antihistamine that isn’t lactose coated 😦 but I’m still looking.
      Good luck to you to.. If I find a long term solution i will let you know 🙂 please share any more tips you stumble across ! Good luck to you too xx

      • I’m lactose intolerant too and I had one prescribed for the go I think that doesn’t seem to cause me any problems…you should ask your gp to see if they can advise you of one that’ll work for you. Thankyou, please do!x

  5. I don’t know whether this will help but I was given fucibet creme by the GP as I had really irritated skin underneath the bag. It did the trick nicely in calming the skin down and kinda helping in relieving the itch. Apart from that the only thing I could suggest that you’ve probably used is those dansac seal things as they worked really well for me in making sure the bag around the stoma is really well stuck down and limits the poo creeping. Also, just wondered whether you have checked out the website comfizz – they do special underwear for ostomy wearers and one of their ‘advantages’ is that it helps the bag to stay stuck to the skin by holding it securely.
    On another note just wanted to say i had the exact same problem with shower water getting into my fistula bag.. the number of times I used to have to get out the shower to empty the bag and get back in, nightmare!
    I hope that this may help but even so I really hope things start to settle down soon for you!

    • Hi thanks for all the advice – yes I love my comfizz underwear but I find it a little uncomfortable to wear all day 😦 But you’re right the vest and knickers help to keep the bag on when nothing else will!
      just wish some of the underwear was more pretty and sexy, most of it is really dowdy looking or really tacky prints.
      Oh the shower thing is ridiculous lol I share your pain 🙂

  6. Pingback: I can’t fart! – five things you might not know about having an ostomy this #worldostomyday | The big stoma bucket list

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