Has anbody else lost most of their small instestine to ovarian cancer

I have 3.3 ovarian cancer and I am in remission (yay, after a year of chemo). As part of the surguries I have lost most of my small instestine. I have experienced two serious bowel obstuctions but I cannot be operated on any more. I have to eat very low fibre, low residue food and very small amounts. I have a lot of gut pain and my guru doctor wants to operate to give me a stoma. I am resisting. He says this will enable me to eat solid food and stop the pain but I am scared to have a bag. I realise that my reaction sounds really "bimbo" but I have has so many truely awful operations. Can anybody else give me their experience with a illeectomy stoma please? I'd be very grateful. Thank you so much

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  • Dear Maggy

    There was a really helpful blog/question on this just a few days ago where quite a few members who had ileostomies shared their experiences. I think you would find that forum really helpful, and there was also a web link to iasupport.org/ which members had found helpful.

    I've tried to find the discussion for you but haven't been successful. I'm hoping someone will be able to direct you there - and I'm sure there will be lots of supportive comments for you from women who have had an ileostomy.

    It does sound a very radical op to have but I know if I were in pain I would choose this route. It's something I've added to my game plan should it become necessary which is why I read the thread with such interest. I think there's only fear where there's ignorance so it's good to find out about the operation and about managing the stoma.

    I wish you luck with this. xxx love Annie

  • Dear Maggy. I can empathise about you not wanting another op, but if you're in pain, it must be affecting what you can do. I sit on a NHS Cancer network survivorship group, representing OC patients in my area, and there's a lady in the group who represents col-rectal patients. She is very good at finding support and speaks about support groups for patients who have a stoma. She has been through it all and is a really good, articulate contact. If you wish, I can try to contact her after the New Year.

    In the meantime try to enjoy Christmas. All the best

    Love Wendy xx

  • Hi Wendydee. Thank you so much. Yes, I would very much like to be in contact with this lady. I am really battling at the moment with digestive issues, so much so that I cannot eat solid food at all, just Susagen and liquids (not that I am complaining, I'm very happy to be alive). I am also taking anti-acidic medication as I suffer with acid reflux and this causes ulcers in my gut, anally and orally. Pretty nasty. I think I will have to be brave and have the stoma. What a wuz I am, hey?

  • Hi Maggy,

    When I worked in healthcare I have looked after a quite few people with ileostomies (various reasons for having) and in the majority of cases they said quality of life improved greatly and they had no regrets. It can take a little while to adjust your diet to find what suits you and what causes problems like wind etc, but generally things settle down and the people I've nursed say they have got their old self back. There may be a local stoma nurse who is able to offer advice and support and show you the stoma bags etc. and who you can talk to before surgery- your consultant would know if there is one in your area. I wish you well with whatever you decide.

    Polly xx

  • Hi Maggy

    I have been close as you to the surgeon's knife! I have same grading OC as you, and am nearly at a year of chemo for persistant active OC... in September I went into bowel obstruction, indeed it did not work for 3 weeks. The oncologist put me on steroids and chemo to shrink the tumour which was pushing in on the outside of the bowel. If it had not started working I would have had a colostomy. Always dreaded the thought of this, but after 3 weeks of obstruction I told myself \I could live without the bowel. :-) The oncologist said they would not remove the tumour just bring the bowel out onto the surface.

    When we live with OC with live with a chronic condition which will flare up on and off for the rest of our lives.... we just have to accept and manage them if we are to survive :-) hope this helps x

  • Hi MidwifeGill, that you for your reply. It is really good to hear from somebody else who has had bowel obstructions (and the associated drama). I do try to not moan about my situation and try to be as optimistic as possible but this gut condition is becoming more and more restrictive and difficult to manage by conservative means. I will just have to toughen up and have the stoma (:

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