does anyone have a non working bowl not ibs

my bowl as all most nothing left working i,m on a new med but consultant said this is my last try and recomends a full stoma for life i,m upset and wondered if theres anyone else out there ? i have also struggled with fibro 22yrs , joint problems back & disc , nerve damage to leg etc

i,ve been house bound for last 11 months justed started going to visit my daughters by taxi once fortnight cant manage much more takes me a wk to recover its been hard to get through last flare up on top of other conditions looking forward to finding someone to talk to

23 Replies

  • I dont im sorry xx

    But i do have ulserative colitis and was told once to have a colostomy fitted.

    My reaction was fear, aprehension but then releif.

    To be free of the pain was enough to convince me that it was best. Luckily i never needed it. But i came to terms with it.

    Kerry x

  • thankyou for your reply .

    i understand your illness and can totally relate . my fear of stoma is once they have done it they remove almost everthing thats why they cant get rid of bad bits there would not be enough left to survive on but my hope they come up with something ? like the meds i,m on have only been around a few yrs there not working properly but its another new start i,m hanging by my finger tips at min ? as with everthing else thanks again

  • Hello, I too suffer from UC and find it very painful especially as my medication for fibro sets it off.

  • Hi lucyw

    I would like to pick your brains if possible it is a fine line between

    Illnesses and meds but my bowl condition as become life threatening at times i think you know what comes with it . I am finding it hard to handle thats why i have reached out for someone to talk to for the first time my ot advised me to look at forums but because my case is,nt straight forward its hard to find anyone with any understanding .

    Thanks again for getting back to me

  • Hi Kez

    You go ahead ask away, I have indetermite Colitis which means each time they have performed colonoscopies and gastroscopies which I might add is quite a few times they can't decide if its UC and Crohns. All I know is I suffer from pain, splits, bleeding, cramps and this week been confirmed I am suffering with gall stones. So another operation to remove gall bladder!

    I do not have a stoma but on very bad days would only too happy to have one!

    I work part time and they are ok ish about my problems!


  • Not having good day 2 day not slept at in last 48hrs not been able to eat throwing up tummy back pain fibro flare up etc i do have questions but cant concentrate properly like i said not spoke 2 anyone about it evan the fibro i dont want to know untill then been struggling with it for 22yrs and it keeps on surprising me deal with sypmtons as they arise thankyou for careing will be in touch

  • I'm on 2 sides of this - my cousin has had a stoma due to unmonitored ulcerative colitis (silly sod left it 4 years before going to get any medical advice), and - after a bit of initial upset and adjustment - functions very well with it.

    Also, my OH has a rare genetic disorder that may leave him with one, but they're currently trying to avoid it. He was offered the chance to have an ileo-anal pouch - basically, they remove the colon (bowel) and rectum, make a 'new rectum' out of a piece of small intestine, and then you have a temporary ileostomy whilst that heals, which is then reversed. I don't know if that's an option for you, but it's worth discussing. My OH isn't keen on the idea of a stoma either, but we know it may happen, and we both feel that we'd be okay with it if it does.

    Good luck with whatever road this takes you down. xx

  • thankyou for you reply

    the only option left to me is to remove the lot you know what i mean and put the stoma on other side i did,nt know they could do that

    the other problem i have with it is lookig after it and the other problems you can get. i,ve also been married a long time and my hubands not coming to terms wih it at all

    thanks again its not a nice subject to ralk about

  • I dont know anything about this, wanted to say, feel for you so mch you mst talk about it. get as mucj info. as poss.

    Tulip xx

  • thanks for your reply

    i have,nt come across anyone who as the same combination of illness i have found it makes it difficult to talk about ? everyday it seems i have a struggle of some kind evan if i dont take part in many questions etc i,m still watching thanks again

  • Me! I have UC and fibro!! Meds for fibro start off my UC and so on.....

  • No one wants to have a stoma, but quite honestly, with modern stoma surgery and the amazing products available to care for them, they are pretty much unnoticeable.

    It shouldn't cause any problems with your intimate life, which is what I think upsets people the most.

    Try not to worry too much about it, 'cos I'm sure it won't be anywhere near as bad as you fear!

    Moffy x

  • thanks for your reply

    your right i am scared i have that many different problems with one illness or another finding life hard to cope with .and my husbands struggling with this one more than the others

    thanks for your comments nice t know theres someone out there thanks again

  • no but I don't have any sphincter pressures and had rectal surgery in January... very scary and very very painful.

    I feel for you


  • Hi zeb73

    Thanks for your comment i do know what you mean and i do know how painfull it can be glad they could help you but i do appreciate you gettin in touch on such a taboo subject .


  • Hey Zeb,

    I do feel for you but I'm sure Kez doesn't really need to know how painful your operation was. We are here to support others not scare them.

    Just thought I'd mention it.

    I too have had surgery on my rectal area but everyone is different with pain and how they deal with it.

  • hi zeb can i ask you about your opp. i have problems with the sphincter and this causes bowel incontinence.. i am terribly afraid of a stoma i just could'nt cope with that and i dont think my oh could either.. i can cope with the pain of an opp better than the psychological effects of a stoma i also wonder what new surgery can be done instead of a stoma. sorry peeps not meaning to cause any offence to anyone with a stoma but i just cant deal with it. ty zeb for posting.

  • I apologise for the offence but that was not my implication!



  • Thankyou for careing and getting in touch

  • I know a lot of people with a colostomy and really, you will cope, its not too much problem after you get used to the new routine. So don't worry about it. You'll still be able to get out to your daughters with no probs. We all hate the changes that happen to our bodies, but we have to come to terms with them. I know you will be strong enough to come through. Love and hugs x

  • thankyou

    i am finding lifes like a game of chess you have to be careful which moves you make as it can make things worse or swap one problem for another . theres also being scared of the unknown and in my personal situation what will be done cant be undone and i think everyone on here will agree fibro and other illnesses depending on the individual have a common factor the knock on effect which again is another story . thankyou for your kind reply it means a lot

  • hi,i have a lazy have to do all the work! at first I thought I was always constipated but doc decided it was lazy bowel..i take medication..but obviously you have been diagnosed with something more serious, xx

  • Hi

    Looks like i was born with bowl problems but over time it became worse i have always had to use something to help me now evan that does,nt work please keep talking to your gp ,nurse etc make them understand if it gets worse and if your treatment starts not to work so well good luck

You may also like...