Colostomy bag?

Posted , 5 users are following.

Has anyone had a colostomy bag fitted through having severe IBS-D?

And if you were given the choice, would you take one?

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8 Replies

  • Posted

    I had to have part of my bowel removed because I have crohns and was fitted temporarily with an ileostomy,which is a bag that is sited on your stomach. I was in severe pain and if this was the only option to take away the pain then yes I would choose it. It will take time to get used to the bag, I was never very confident going out but I only had it for 4 months .Its not very attractive you need to consider your sex life etc .There is lots of help available if you have a good stoma nurse. I know a lot of people lead a full and active life with a bag but it would be my final option. 
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    • Posted

      Hi penny05672! smile

      You say, you had it for four months? Does that mean you have managed to get control of things now or? Why was it only temporary? Sorry if that's too personal.. Hope you're okay!

      I've heard both bad and good stories so it always makes you unsure. It is my last resort and if it means being able to have my life back and not be pretty much house bound or constantly near a bathroom , I'd happily give up lots of things.

      Did you find things easier with it, even with not being too confident about it?

      Sorry if I'm prying!! Hope you are okay! smile

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    • Posted

      I'm pretty good now thanks. I was diagnosed with irritable bowel from the age of about 12. always at the doctors. I was really bad when I had my second child but it wasn't until I was 50  that they diagnosed crohns and had emergency surgery which took 5 hours. They removed 4 separate sections from my bowel and the bag was to give it time to all heal. I had to change the bag every day at least as I have sensitive skin and the site can get very sore.You use an adhesive to stick the bag to the small hole in your stomach and sometimes a belt for added security. It did get better and I'm sure I would have been more confident in the end but I'm glad that I had the reversal and am relitifly pain free with medication. I don't know what options you have tried.i have had good results with hypnotherapy. Do you know what sets it off, have you done an exclusion diet. There is an IBS nurse specialist at my local NHS hospital. 
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  • Posted

    Thank God lve not had that choice, and l guess many have bags due to cancer, life saving. l do know a few women whove had urostomy bags after bladder removal, due to intersticial cystitus, not life threatening, but can cause severe pain, physical and mental torment, lifestyle restriction,s to a massive extent, Not everyone gets it that bad, and most respond to meds, but for those who dont and have endured suffering and just an awful existence for many years, re one young women took her own life, her sister had same condition and chose urostomy then founded support group to raise awareness and help others, but some  have chosen to have it done, not an easy choice and surgery can be difficult and long time recovering, some have leakage  probs but do get help from nurses. The two women l know of havent regretted it years later, but some are very wary of having relationships after, still their quality of life is better. But it is last resort when nothing helps or can be forseen helping in future, and years of your life are passing with suffering and no quality of life.  /A very personal choice,

     

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    • Posted

      Oh my god Lynne that is terrible! But really good on her sister for doing that! It's so sad to hear things like that and I know a lot of us are in positions where we just haven't a clue what to do anymore!

      Have heard there's a lot of bad but a lot of good too! I guess it's every individual persons way of coping with them. But it's good there's groups that people can talk about these, like support groups.

      Yeah.. After the horrific pains and constant toilet trips and hospital visitors, have to say is happily give up what little confidence have left and relationships etc. to be able to be healthy and happy again.

      Think these days as well, it's a bit easier to fit in and find others in similar situations too.

      Thanks for your comments Lynne! Wishing you all the best smile

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    • Posted

      Your welcome, hope yuo make the right choice for you, you,ll have a battle on still, my friend had to fight to get it done, in her 50s, after ten years of suffering, she went private initially to get right consultant.  The woman l mentioned was called Annette, lovely person, only in her 30s she started Wee ray of hope group,  for support advice info, the group later taken over by c.o.b  group, A big decision for you, best wishes.

       

       

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  • Posted

    LoLo,

    my nephew had a bag for several months, removed and he has done quite well with strict diet. If you need more specifics, I will ask his mother as she did the heavy lifting for him...and may know more pre and post surgeries...ann

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  • Posted

    LoLo,

    sent you a pm with a link to a most recent study...hope it can be helpful.

     

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