Faecal Incontinence

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I have had persistent diarrohea since having my gallbladder removed 20 years ago. Now i have developed a weak anal spincter for no known reason it seems and am now having acciendts which are utterly ruining my life and i had to give up a job i loved. Tried medication, diet, sacral nerve stimulator, spincter bulking with no improvement though my anxiety levels are now very high which is not helping the problem at all. I am becoming housebound and desperate. Have not had a holiday for 10 years and my hubby is fed up of waiting.

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  • Posted

    Hi, so sorry to hear of your terrible situation healthwise. I can understand your anxiety as although I have come close to having accidents, I haven't had one yet, but the anxiety that causes me is awful, so you must feel very anxious. (I have colitis, ibs-d, & bile acid malabsorption). The only things I can think of to help you are: have you seen a gastroenterologist to see if any meds can help eg loperamide? Have you had sehcat test to see if you have bile acid malabsorption? (it is still possible to have this condition even after gallbladder removal & it causes chronic diarrhea). The test involves swallowing a safe radioactive tracer capsule that mimics bile acid & 2 scans a week apart. Have you seen a colorectal surgeon/specialist to see if they can help you? hope this helps, & take care.
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    • Posted

      Thankyou for your response. have been on loperimide for years but sometimes helps. Been under Colourectal Surgeon for five years, had sacral nerve stimulator in 6 years ago but no sign of any improvement. Had rectal bulking agent last month but no improvement so far. Had many accidents in public but now too afraid to go out anywhere. The more my anxiety takes over the more problems i have with diarrhoea. Not seen my son in london or my daughter in bristol for years but only keep in touch by phone, i am getting so unhappy. We had just retired and had plans to travel so my husband still holidays alone every year. No one knows why my sphincter has become paralysed, i think nerve damage occurred after my hysterectomy.  Susan
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  • Posted

    Do think about asking for the sehcat test though, it could be the cause of your chronic diarrhea. nothing to lose by having it done. take care.
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    • Posted

      At the moment whilst i have the sacral nerve stimulator inside me, they are similar to pacemakers, but it means i cannot have any kind of scans until the device is removed next year when the battery life has expired. I am now also taking cholyestramine which is a bile acid sequestrant, again sometimes it works, sometimes not. My anxiety is definitley making matters worse as i am so scared of embarrassing my family anymore. I have been worse since my son and daughter now have partners who no nothing of my condition. The whole issue is a nightmare.   Susan
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  • Posted

    Susan,

    May I make a suggestion.

    Have no idea where you live.

    Go and see Anthony Dixon Bristol privately.

    Let him give you an opinion and pay to see him.

    Then may be you can get an NHS referral.

    It sounds as though you have a form of rectal prolapse but not complete.

    There is an operation called Ventro rectopexy.

    I am not a doctor but it may well be worth researching, look on the OXFORD Manor farm website, which is informative for info.

    The team there are Mr. Lindsey and Mr. Cunningham.

    At Bristol is Mr. Dixon

    There may be other centres of excellence for bowel problems however I have found these two to be the most helpful.,

    All of us women have different symptoms.

    These operations are not without risk.

    Good luck,

    Sandra 

     

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    • Posted

      I have already been seen by a Consultant at Bristol, he did examine me for a rectal prolapse before putting a a sacral nerve stimulator five years ago which sadly has not worked. I have had constant diarrohea since having my gallbladder removed 20 years ago and now my anxiety is making things much worse.  Susan
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  • Posted

    Susan,

    You need help.

    Have Bristol or Oxford offered you any assistance.

    Stay strong an determined.

    Coukd all this be prolapse related.

    The funding within the NHS is stretched and many patients are not getting the help they need.

    Has Ventro rectopexy operation  been mentioned?

    Your gall bladder may be an incidental they may have just focussed on this.

    Who did you see at Bristol?

    Sandra

     

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    • Posted

      Hi Sandra,

      i say a Mr Durdy at Bristol Spire before my hubby retired and we still have private health Insurance. He  put in my Sacral Nerve Stimulator which i was told had a 80 to 90% success rate. Sadly nothing has improved for me at all. My rectal sphinter has become weak and cannot hold back diarrohea at all. I have had various ops in the past, 2 x C sections with my children, an ectopic pregnancy and a hystectomy in 1999 so i suppose there will be a lot of adhesions and the sacral nerve has somehow stopped working. I can barely feel anything in my sphincter and i can barely squeeze my sphincter. I can feel faeces coming out but cannot stop it is the best way to explain, so if i am out it causes an accident. Am now under Miss Patricia Boorman at Exeter, she is the Consultant in Colorectal Surgery, very nice but do not see her very much, usually her Reg and sadly my private health package has finished now we are retired, it was a perk of my hubbys job, i used to get 45 mins appointments, nothing like that on NHS, lucky to get 5 mins. I appreciate the diarrohea is a constant problem. The more accidents you have the more your confidence disappears.

      Regards Susan

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  • Posted

    Susan,

    I BELIEVE there may be till operations availablle for you.

    I am no doctor however so much has changed in the last 5 years with technology and so forth. 

    I am 59yrs old.

    Had caesaren section with problems after.  Adhesions IBS after for years.

    Everything got better with pain issues then perenial not NOW. I was in loads of discomfort when I had my monthly period. After menapause relief. All better.

    Years of not great but all got better. Then difficult forceps delivery nearly killed me, and then an easy perfect delivery 3rd time round.

    Since 2004, had 10 yeasr of back pain early morning.

    However this goes once mobile and I manage.

    Yes and they found some lumps in my pelvis and everyone thought the back pain was due to these lumps but I think not and luckily I said no to surgery and just had monitoring for 10 years these tumours have remained stable.

    However there is always a may be something has changed.

    To fast forward.

    Taken me 4 years going round in circles seeing doctors.

    I have prolapse in 3 departments.

    Been offered uterine hysterectomy and anterior repair, 

    suspension  surgery holding womb and bladder in place.

    However no centainties that my bowel will be better.

    I have some faecal incontinence not bad but some, my anal muscles are not good.  At times I just go in my pants. Not often but it happens, and things are getting worse.

    Ventral Recopexy costs £5,000 done at Bristol or Oxford.

    Cheaper than the london hospitals.

    I have no idea if this can help you but every year technology is getting better.

    You cant holiday in your situation or enjoy your life.

    You are in a very disabilating situation.

    Your uterus has gone, however may be there is a way of supporting your bowel and bladder to help you with this operation.

    Susan I believe there may be hope for you.

    You can try NHS referral for these centres.

    Or the private route which I recommend if you can afford.

    All the best

    Sandra

     

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  • Posted

    Susan, I know exactly where you are coming from, I too suffer incontinence, but my anxiety and stress levels are far worse. I like you can't visit my child, have not been to anyones house for over 7 years and I mean anyone!. I have 4 other children who can'y go park with Mummy as she is scared she will have another accident, it has ruled my life for 20 years and I am only 40. I have at least one panic attack a day, I only leave to go work 3 times a week, A 5 MINUTE Journey is hell for me, my husband has to drive me there and I panic soon as we hit a traffic light, or a tiny traffic jam, this can reduce me to get out of the car in sheer panic and have almost been killed by moving traffic. I totally sympathise and know people mean well when they suggest surgery or wear a pad, what use that will be on a train, or in a car full of people, I will never know. I feel I have wasted 20 years of my life to this condition and nothing will improve the sheer panic and terror I feel at leaving the house, big hugs to you.
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    • Posted

      Hi,

      You do not say what has caused your dreadful condition, do you mind if i ask. I have been told that it is just bad luck, possible because i have so much abdominal surgery with 2 ceasaerians for my children, one ectopic pregnancy and then a hyterectomy 18 years ago. I am really scared of more surgery if this is a possible reason for my problem. The nerve supply to my rectal sphinter does not work so poo literally drops out, i assume you must be the same. I am totally devastated now by my problem and my hubby is fed up of going on holidays alone. He is in Slovenia at the moment on a walking holiday with the Ramblers. We were on holiday in Weymouth ten years ago when i suddenly started having accidents and realised i could not feel things in my rectum. At first i was investigated for MS and motor neurone disease and had all sorts of investigations to my bowel which is healthy. Nothing has been revealed any clues at all. Do you know what has caused your problems. I have tried to set up a support group here in the southwest where i live as i am told constantly that it is a common problem, but in a year i have had no one contact me at all. I feel so alone with this. My kids have left home and live in Bristol and london but i have never been to see them ever. Thankyou so much for contacting me. Haveyou not been offered a colostomy, i suspect i will be offered one. I have a sacral nerve stimulator in at the moment, had it five years but it has not worked. Had rectal fillers put in to strengthen my rectum three months ago but cannot tell any difference at all. What treatments have you had? You are so young to have such a devastating problem.

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  • Posted

    Hi Susan

    Thanks for such a quck reply, I too have had all the tests going, sigmoisoscopys etc, however there is no cause for mine, I just literally need to go straight away, no warning, they think I may have sensory processing issues, which causes certain senses to be more sensitive, wish it was my fingers or something rather than my bowel though. I feel a useless wife and Mother, even thought my husnabd and older children reassure me they are not bothered if yet another day out is cancelled, I have missed funerals, big celebrations all because I am scared to go out and anything happen in front of anyone. I get such dark thoughts and hate the way it makes me feel, as awful as it sounds to other people I would rather have a wheelchair as this is a disabilty that is catered for and understood, and I know thats a truly awful thing to say, but its honestly how this condition has made me, I am bitter about it, so many things that people take for granted, like a walk to the shops, or a parents evening, childs assembly, all these cause huge anxiety and panic and for every one I manage to attend, there are 50 occasions that are not attended, I am sure you understand.

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  • Posted

    Hallo Susan. I know you posted over 2 months ago so hope you have already found a solution to your problem. I note you have mentioned diet. Have you tried cutting out all dairy products? Cheese,yoghurt,butter,milk. I had this problem for about 6 months and also had my gall bladder removed about 15 years ago which led to very loose motions. Also suffered from minor gripey pains and wind every time I ate something. Consulted a doc who said if I was still alive after 6 months it wasnt serious!!!!!      So I decided to cut out various items from diet and lo and behold I have lactose intolerance and have probably been like it a long time,if not all my life The faecal soiling was just the last straw. After cutting out all dairy I am fine and it is very noticeable that if I happen to eat something with milk or milk products in I have some soiling. So having to inspect all packaging now for milk products...luckily milk is a known allergen and the products are usually in dark type which helps.    I find I dont have any stomach pain or upsets now,also no wind or runny motions,and feel so much better, I am now hooked on soya milk which is fortunate. It all takes some time to get used to a new regime but worth it in the end.  A side effect I also noted was no more sore perineum or anus.This may be something you have as well?       If i have to eat out or on holiday and milk is unavoidable I take Lactase capsules with me and take 1-3 before the meal. You have to work out this dose for yourself,and it doesnt always work well,so not suitable as a cure,just an aid.  Dont know where you are but you can get Lactase at health food shops in UK . Got mine at Holland and Barrett but I expect other places stock them.        I would be very interested to hear if you have already found your own solution.   
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    • Posted

      Hi marina,

      have tried all sorts with the diet over the last twenty years and have been using lactose free milk since it came out and is thankfully available everywhere now. My problems are more with fruit and veg. I have some nerve damage to my anal spinter so if i have loose stools i have accidnets and this has now made me too afraid to go on holidays or even day trips after i was shouted at by poeple on a coach trip three years ago. The coach company assured me that all their coaches had loos but on this occasion it was out of order and i sadly stank the coach out as we were 40 miles from home and i cannot clench my buttocks anymore, my sphinter does not close tightly anymore since i had a hysterectomy ten years ago. My life is now non-existent, it has cost me my job and my social life, hopefully not my marriage, my hubby is used to going on holiday alone now. At the moment i have been put on the FODMAP Diet which is very challenging. Cannot take to soya milk at all but do like soya yoghurts.Sorry to sound so miserable but i am having a difficult time being more housebound.

      Regards Susan

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    • Posted

      Hallo Susan...I feel like a complete heel,blathering on about diet when you are obviously past that stage. I am so sorry that you are like this...it must be awful for you.     I know you have seen lots of consultants and are probably fed up being told this,but it is true that things do move on, so keep pestering your doc. I expect you have done lots of research on the web,so dont give up m'dear.   I hate to mention colostomy but I have a friend who has a permanent colostomy and you would never know. She said its not as bad as people think and its controllable. She is just 60.  I do so hope something turns up for you. Big hug to you xx
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    • Posted

      Thankyou for your kind comments, much appreciated. Being diagnosed just as i retired and had big travel plans, it has been devastating. My hubby goes everywhere on his own. I am finding the holiday season difficult to deal with i must admit and try to keep busy locally as much as i can.
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