Endometriosis UK

Colostomy - The Truth

Hi, I am 33. Last April (2011), I received laproscopic surgery for endometriosis. I had a 5cm cyst on my ovary and everything down there was so stuck down that they couldn't even see my fallopian tubes. I was also diagnosed with infiltrating endometriosis, which basically means it is in my bowel too. To cut a long, terrifying story short.... a hole left unstitched in my bowel resulted in my bowel rupturing after I had been sent home from hospital post surgery. My experiences of previous pain with endo paled into insignificance at that point!! Further complications as a result of septicaemia (blood infection) - collapsed lung, intensive care, burst wound etc etc have resulted in a very scarred body and a colostomy bag. I wont lie I was devastated to wake up and find a bag attached to me and it took a tremendous amount of will power to even watch it being changed by the wonderful stoma nurses. However, within a couple of months I realised that it really isn't that bad. The main initial problem was finding the right type of bag that didn't leak and suited my lifestyle requirements. My daily routine, involves a shower without the bag each morning, attach a new bag and off I go.... That is it! I have had to make some adjustments - wear bigger knickers to support the bag when it starts to fill, buy a bigger handbag with a secret compartment to stash spares in (the hospital supplied me with a radar key which means I can use the disabled toilets anywhere for changing) and wear clothing that will allow for some flexibility where the bag sits. I can even go swimming although I was super paranoid! Don't get me wrong it is not perfect and I still have occasional leaks and noises but what I am trying to share is that a colostomy does not have to be the end of the world! I could talk for hours but the blog instructions said to be brief!?!? If you want to ask any questions, I am more than happy to answer them! I am booked in for a reversal next Tuesday, where my gynae is also coming along to assess progress with my endo since the rupture. Fingers crossed my story will finish with children and pain free living - the happy ending that I desire!! I wish you all luck with your journeys and reading others experiences and success stories really inspires me to stay optimistic that there is life after endo! x

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9 replies

    Beks04
    Beks04

    what an inspiration. Thank you for sharing. I wish you all the very best with your reversal surgery and for a quick and problem free recovery. xx

    Anvi
    Anvi

    Wish you all the luck for your reversal surgery.
    Take care.
    xx

    Hilary100
    Hilary100

    Thank you so much for such an honest explanation. I am so impressed by your bravery. Good luck with the reversal and your future hopes.

    gillyjo
    gillyjo

    i wish you every success with the reversal, you have really put things in perspective for me :) x

    Rufio
    Rufio

    Wow, what an inspirational story. To be so positive after such adversity is amazing and your story could help lots of people. I wish you all the best with your surgery and your desires for the future.

    heatherec
    heatherec

    I can not say thank you enough for this blog post. Last Monday i went back to the hospital, even though i am still on zoladex etc and has only been 5 months since my last lap i am now having to have more surgery as like you they think it is in my bowel.

    I had to sign a consent form for the eventuality of a colostomy bag and at 21 that is the thing i am having the worst time coming to terms with. Thank you so much for being so brave and sharing your feelings, it has given me more confidence if that situation were to occur.

    I hope that everything goes well with your reversal and i wish you all the luck in the world.

    x

    StephM
    StephM

    you are strong ladies. stay strong :)

    isax
    isax

    Thank you for sharing your story it reassured me as i was terrified about a possible colostomy after my next planned op.
    Do you know how long on average they make you keep the bag?
    thanks
    isabelle

    Todds78
    Todds78

    Hi Isabelle. How long you have the bag is different for everyone. It depends on how quick you heal and how you are coping mentally. I was told no more than 6 months. However sadly I had severe pain just before my reversal date. My op was canceled as they were concerned about my appendix. An MRI confirmed endo is back and more aggressive than ever. So I am back on the list awaiting open surgery to cut it out. They may be able to reverse me at the same time but they don't know until they open me up. I have had mine for just over a year. Hopefully it won't be too much longer?! I wish you so much luck for your surgery and I hope it goes ahead without any complications. x

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