Endometriosis UK
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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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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

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Wish you all the luck for your reversal surgery.

Take care.

xx

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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.

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

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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.

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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

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you are strong ladies. stay strong :)

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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

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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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Hi did you have your reversal? It would be good to hear how you are doing now? Thanks x

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Hi Emma, thanks for asking. I had my reversal in 2 operations in the end. First one was to convert to an ileostomy (small intestine stoma) to give my colon time to heal and then after about a year I was put back to normal. I haven't looked back since. I still have to be a bit careful with eating to avoid aggravating scar tissue and adhesions but otherwise all is good on the bowel front. Sadly all the trauma from the bowel rupture destroyed any eggs I had left and dropped my AMH to less than 0.002 pmol which means IVF is not an option to me and put me into premature menopause. Donor egg IVF is still an option but with a success rate of only 12% I don't think i can put myself through it financially or mentally, plus I am old lol (40 in november). However, premature menopause seems to have resolved most of my endo pains so i am finally able to have some quality of life. How are you doing? I see you are undergoing IVF and really hope it works for you. Ren x

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Hi Ren, I'm so sorry to hear that you went through all of that. Did you have your ops done by Endo specialists i.e. at a BSGE accredited centre? I could be facing a bowel resection with stoma as i have a large nodule on my sigmoid colon. I won't lie it does scare me but I guess the perception is probably harder than the reality of dealing with it. I have low AMH and my last IVF resulted in 3 eggs with zero fertilisation as the egg quality is probably low due to endo. I'm starting another cycle this weekend to see if they can freeze anything then i have my op in July. I'm also 40 in November! Thanks for getting back to me and it's good that your quality of life is better x

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