fecal incontinence.

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Iv`e been dealing with passive incontinence for some years now, & have seen several doctors & specialists in the last 4 years. The cause is a forceps delivery that damaged my pelvic floor, but getting older made the damage show up only in the last few years. I saw a bowel control nurse this morning, & what she told me has me in a terrible paic. She told me that everyone has to wear nappies in old age eventually, & that has scared me so much that I`d rather take euthanasia that have the indignity of wearing nappies like a baby. Surely there`s an alternative in this day & age?

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15 Replies

  • Posted

    Oh how awful of her!!!!! There are many alternative options, hopefully one of them suitable for you. I have a damaged bowel and no anal sphincter muscle, 4 yrs ago I had a sacral nerve implant which helps me to recognise when I need to go, therefore less accidents. It's only day surgery and like a small battery and wires put in a pocket in your bum cheek, the wires stimulate the nerves round the bowel, its a bit like a pacemaker but for your bottom, it has helped me a lot.
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    • Posted

      Hi Chris,

      I was reading your response to Chris and i have just told her about myself. You mention that you have a sacral nerve stimulator, i have never found anyone who has even heard of them. I had mine put in 6 years ago but the hospital have wasted years of my life because they were a new clinic where i moved to to retire here in Devon and they really did not know how to deal with it. I have only ever had the first four programmes put is despite me asking for another set to be installed, they insisted i was wrong in my information. I was refered to a very specialist unit in Southampton in february only to find out that i should have had four new programmes put into my stimulator every year until i find one that works, so after five years i have missed out on trying over 20 programmes and now my battery is running out. I have written to complain to my Consultant but been ignored since. Soutampton have put another set of programmes in for me but i have had no improvement at all. Not sure what i am supposed to feel. My anal sphincter just stopped working about 2 years after my hysterectomy so my anus does not fully close up and i cannot squeeze it to stop accidents. It has cost me my job because of the humiliation and smell and being called names by insensitive people. I have tried to form a support group for five years but had no response. The people at my local surgery have never heard of the stimulators ever.You feel so alone. If you have no anal sphinter muscle how do you close up your bottom if you don't mind me asking. I do wish you all the best.

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    • Posted

      Hi Susan, in answer to your question of how I close my anus with no sphinctre ,well I don't !!! I've had accidents all my life, what goes in just falls out!!! It has kept me from doing many things, I've never been able to run!! That would be a disaster!!! I had 4 children by ceaserean section,which is my greatest acheivement ,I think when I was younger I used my pelvic floor to help but as I've aged its got weaker. I'm 63 now and my implant will run out this year and il have to have a new battery put in. I go to Wythenshaw hospital in Manchester every year for new programming settings ,some are OK but some awful
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    • Posted

      I will be 63 on 19th May, the very same day as Victoria Wood, bless her i was so upset about her leaving us so early in life. How utterly amazing you are to have had 4 children. My implant has had no impact at all. Sadly since having my gallbladder removed 20 years ago i get diarrohea every week, got it today badly so unable to leave the house and missed my aquafit class at the local pool, this is my only social life now. I had a hysterectomy 12 years ago and it was about 2 years after that that i realised something was not right whilst on holiday, i had two accidents out of the blue. I have never been given a clue about the cause only nerve damage because of too many surgeries, i have had two C sections years ago obviously. I had an ectopic pregnancy as well. I was fine until about ten years ago and i have had no life since, my hubby is also fedup as we used to travel all over the world and have friends in Canada where i used to live. My life is only within a mile of my home and it does get me down like today, missing my friends. Wearing nappies is not helping my confidence at all and i have been shouted at and called some awful names. I am suprised you have not been offered a colostomy. My implant only lasts until september and i will ask to have it removed, it has sadly only given me 6 years of false hope but it is lovely to hear that it has worked for you. At my local clinic they have never heard of these implants, neither had my GP.

      Best Wishes.

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    • Posted

      My implant has not cured the problem but it helps, I've been on the loo about 8 times today and find it exhausts me for a couple of days, but once my bowel is empty I get a few days grace so to speak, I carry a knicker bag in the car and wipes and I also take codeine tablets, I just have to take risks and go out otherwise I'd be housebound
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    • Posted

      Good morning Chris,

      You are very brave.

      I had a major accident yesterday which is why i sound a bit down. Made a terrible mess all down my legs and into my slippers, the diarrohea was horrendous. I was on the phone being a good friend because the person i was speaking too has just lost her hubby suddenly out of the blue at work, he was 56. She was crying so hard that i could not put the phone down as she is my really good friend so i walked towards the loo as quickly as i could and it was too late. My accidents can be too big for just a change of underwear, i need a long shower and throw my clothes away. It does not happen that often but i cannot predict so live in fear now of going anywhere. We are invited to visit friends in Canada in September for their Ruby wedding anniversary and i will now have to tell her i cannot possible fly abroad. I used to live over there in the 70's, Barbara was my flatmate and we have kept in touch ever since. My hubby is not pleased as he wants to go, he loves travelling.

      Feeling ok this morning, got to go to work all afternoon. I work as a volunteer in the Hospice Shop in our village. i sort all the books. I thoroughly enjoy it and we are a lovely team and have a laugh which right now i need today. I will be hearing tales from the holiday the other three volunteers have just returned from. They were so inspired by that programme about the The Real Marigold Hotel based in Jaipur India that the three of them booked a three week holiday of a lifetime. They are all 73 and always wanted to see The Targ Mahal and they love curry. I thought they were amazing and are a real pleasure to work with every Thursday. Thankfully i do not like curry but would love to enjoy the culture of India.

      Hope you have a good day.

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    • Posted

      I'd love to go to India but I'd not cope with my bowel so it's out of the question!!! It sounds like your fear is preventing you from getting out and about more than your bowel !!! I fight the fear every day, otherwise it would controly life. It's surprising what a packet of wipes,a plastic bag,a bottle of perfume and a change of clothes in a bag can do for a tempory clean up you know, xxx
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    • Posted

      You are so lovely to try and support me. The problem is some of my accidents are catastophic and a packet of wipes etc would not be sufficient. Like yesreday i had to throw away my jeans and slippers, yes slippers, the diarrohea was torrential and went quickly down my legs and the backs of my slippers. The Doctor calls it surge diarrohea, i have no control whatsoever. It has got worse the last two years. I never used to have a problem with aniexty at all, but the more huge accidents i have in public  places the more it has affected my confidence. A few months ago it happened in my local Debenhams store as the cafe loos were closed for 30 minutes for maintenance. I had a three mile walk home as i was in no condition to get on the bus or get a taxi home, the stench was awful, i kept crossing over the road constantly every time there was someone on my side of the pavement, i went about five more times walking home, it is the worst accident i have had. Immodium is having no affect at all.

      Been ok today and thankfully did my full shift at the Hospice where i volunteer. I work with some super nice people and we have a laugh.

      I suspect the consultant will mention a colostomy on my next visit, it is just getting round to the idea.

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    • Posted

      There is another operation where they insert a kind of balloon and you have a remote control to deflate it for using the loo and inflate it to close over your opening. I too have had some awful accidents too and although I've felt so dreadful and panicky at the time I've realised most people don't notice and those that do I take no notice of and don't care what they think of me, good luck when you go back to see the doc
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  • Posted

    Hi Catherine,

    run clinics everywhere. They are monthly here in Devon and they supplyI am in similar situation to yourself, i have a damged never supply to my anal spincter i believe cased by my hyterectomy surgery. My anal spinter never closes properly so poo literally falls out and i have accidents. I have had a sacral nerve stimulator put in to supposedly stimulate the sacral nerve to work properly but sadly it has not worked for me but it can be successful for others. I had to give up my job because of the humiliation of accidents and being called some awful names by insensitive people. I have tried to start a support group for the last five years but have had no response, i assume because people do not talk about these problems. But they are a problem just like any other heath issue. I find the Bowel and Bladder foundation very supportive and they my pads. I was referred to a very specialist incontinence clinic at Southampton run by Dr Sophia Pilkington and they have specailly trained staff to dicuss any issues, they are superb. Yes i am devastated about the issue as i am now retired and cannot find the courage to go on holiday with my hubby, he has been holidaying alone for the past 10 years. I cannot cope with the accidents and the smell, it destroys your confidence to go anywhere. I feel am embarassment to my husband who has been very good i must admit but does wish we could have a holiday together. Try the Bladder and Bowel Foundation first, your GP has to refer you. Good luck.

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  • Posted

    Hi Catherine,

    I am in similar situation to yourself, i have a damged never supply to my anal spincter i believe cased by my hyterectomy surgery. My anal spinter never closes properly so poo literally falls out and i have accidents. I have had a sacral nerve stimulator put in to supposedly stimulate the sacral nerve to work properly but sadly it has not worked for me but it can be successful for others. I had to give up my job because of the humiliation of accidents and being called some awful names by insensitive people. I have tried to start a support group for the last five years but have had no response, i assume because people do not talk about these problems. But they are a problem just like any other heath issue. I find the Bowel and Bladder foundation very supportive and they my pads. I was referred to a very specialist incontinence clinic at Southampton run by Dr Sophia Pilkington and they have specailly trained staff to dicuss any issues, they are superb. Yes i am devastated about the issue as i am now retired and cannot find the courage to go on holiday with my hubby, he has been holidaying alone for the past 10 years. Try the Bladder and Bowel Foundation, your GP will have to refer you. Good luck.

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    • Posted

      Iv`e seen this gadget advertised on youtube, it`s called the kegel 8 20, & it uses pads put on the sacral area of the back instead of using an uncomfortable probe. I`m thinking of getting one because it`s supposed to help wake up nerves to the bowel & bladder, making them function better as well as strengthening pelvic floors. I`m using a machine now, but I don`t think that it`s strong enough.
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  • Posted

    Hi Catherine, chrishappy is right about there being multiple solutions to Fecal Incontinence. It's also referred to as Accidental Bowel Leakage (ABL) and ABLinfo.org has a list of all the most recent treatment options. She lists 12 depending on your severity.

    Dr. Heidi Brown is a well known Urogynecologist who published a study finding 1 in 5 women over the age of 45 experiences bowel leakage at least once a year. It's definitely not just a condition for older people and it's more common than you think. Don't feel discouraged because there are options! Wishing you the best!

     

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  • Posted

    thanks for the support. Iv`e been reading some of the horror stories about fecal incontinence, & it puts my problem into perspective. 
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