Faecal Incontinence

I have never met anyone else who has a stimulator. Welcome to the club.I had mine in June 2010 and am waiting to see the consultant in October i hope to discuss having it removed as the battery is almost out. I was very fortunate to have private health care as a perk of my hubbys job so had long discussions with my consultant in Bristol an hours drive away. Sadly since we retired here to Devon in 2010 just a month after my op i am now on the NHS and rarely see any consultant and if she is there i barely get two minutes of her time. I have complained twice this past two years. I had to give up working due to the embarrassment when accidents were quite severe and i had to go home. I have suffered from diarrhoea since having my gallbladder removed 25 years ago. I have bile malapsorbtion. No one has any idea why my anal sphincter just stopped funtioning properly, it just seemed to happen suddenly on holiday 8 years ago. I have had much abdominal surgery with an ectopic pregnancy, two C sections for my son and daughters birth and a hysterectomy in 1999. They think it may be just adhesions and slightly lower pelvic floor that has stretched the sacral nerve and extra pressure from carrying extra weight at the front. It has ruined my life for me. I had my last accident on public transport two years ago when i went on a daytrip to the Eden Project. I checked that the coach would have a loo but when we boarded we were told that it was out of use. I still went on the trip and was fine all day until the journey home. I made a mess on the seat 28 miles from home, the smell was deadful.  People moved forward into empty seats but two ladies just shouted at me and called me disgusting. Then others started and it got nasty, i just cried so much but no one cared and the shouting got worse. I have never travelled on public transport since that day. I had one on a train three years ago. I have lost my 95 year old mum this year who lived in west yorkshire so have been going up there every two months. My accidents are not often but always catastrophic when i have surges of diarrhoea. I have watched my diet for 20 years and was on the Fodmap all last year but it was so limiting and challenging. Ok if you live alone but difficult when my hubby cannot cook. I do find five snacks a day better than three meals. We had plans to visit our daughter in Australia and to visit friends in Canada where i used to live but i have not been out of Devon since we moved here five years ago. I am devastated and i think secretly my hubby is also fedup of going on holiday alone. He has just returned from a walking holiday in Croatia. That would me my worst nightmare, a walking holday. He is area secretary for the Devon Ramblers and i am more than happy for him to have these holidays. I understand that they have now changed from putting the stimulators in the buttocks area as it is too invasive and too expensive. They now stimulate the sacral nerve through the tibial nerve in the ankle. I intend to ask my consultant, i have not seen her since april when i had rectal fillers inserted to try to make the anal orofice smaller and less slack. Sadly i have not noticed any difference at all. The stimulator sadly has not worked for me either. My confidence is non existent sometimes and anxiety levels have increased greatly this year. I thought i was coping ok the first few years but would love to have a life outside of where i live. I have a voluntary job at the local hospice and they are just lovely and i do aquafit at my local pool three times a week, i just do not eat anything for two hours before i go and only have one cup of tea at the hospice even though i do five hours. Wearing a nappy does nothing for my confidence. You cannot hide the smell whatever happens. I take Immodium and Cholestryamine sachets which work some days and not others so it makes you live in fear of the next accident. I have certainly been more down this years than previous years so i am sorry to sound misreable. I find the holiday season difficult to get through listening to everyones tales of where they have just been. I try to be positive until the next accident knocks your confidence all over again. I have not seen my son  at his home since he moved to London 6 years ago, he comes here to see me. He wants to take me for afternoon tea at the Dorchester near where he works and i hope someday he will. I try to think of others who are worse off than myself, i have a friend with advanced MS and has carers living with her now. My friend Lesley only retired in May and her hubby was diagnosed with Altzeimers last week, he is only 63. She is almost housebound as she has to take him with her everywhere until she can organise some support. They had planned to sell up and travel for five years as they have no children.

My friend June was refused rectal surgery for a prolapse last year, she had the repair surgery ten years ago but it has relapsed so they are reluctant to do it again in case they damage her nerve supply she was told. She is very self conscious at work about her problem and has to work for another five years as she is on her own and we all now have to wait so many more years to get our pensions.

Take care and i sincerely hope you have more success with your stimulator.

Regards Susan

have you had vaginal delivery? the surgeons that I went to in Germany specialize in pelvic floor damage from vaginal delivery and episiotomy; their surgeries really helped

I have been trying to get a support group going for about five years and have had no response at all. I understand that it is not an easy subject to talk about and i never mentioned this to anyone for a few years, not even my hubby of 36 years.  I have suffered from frequent diarrohea since having my gall bladder removed over 20 years ago but coped because i had a normal tight anal spincter at that time. On holiday 15 years ago i had a couple of accidents in my underwear which totally astonished me at the time. I tried for years to hide the issue and was just lucky i did not have more accidents, it was just luck. Then my luck ran out and i started to have messy accidents with the diarrhoea. I stopped travelling on public transport years ago as i am too anxious. The anxiety does not help but i do not know how to not be anxious over a dreadful problem. No one has really told me what the cause is, just that they think the sacral nerve has been damaged by adhesions possibly as i have had five surgeries, two C sections, one ectopic preganacy and a hysterectmoy 19 years ago. My consultant says i have just been unlucky. I have had my stimulator 6 years next month but the first hospital where we used to live waisted four years of my life not installing four new programmes each year. They said i had misunderstood and there are ONLY the basic four programmes. I was referred to a specialist bowel unit over in Southampton this last february as i was certain the other place were wrong. I was right and have missed out on trying at least another 20 programmes but my battery is now running out later this year. I am so angry and have written to complain about the previous consultant but not had any response. My stimulator is supposed to be working fully but nothing is any different. Have not really met anyone who has one and the local clinic where i collect my pads have no patients with one insitu. Wearing pads is not helping my confidence as you still cannot hide the smell. Immodium has no affect on my diarohea so now i take some sachets you mix with water to basically mop up liquid in my bowel to make the stools more formed. Sometimes it works, sometimes not. My confidence i must admit has got worse this last two years since the incident on a coach trip when i had a major accident as the onboard toilet was out of action. I got shouted at and called awful names by two ladies in particular.

Do you mind if i ask how old you are, i will be 63 this Thursday coming. It would be lovely to go out for a meal but i dare not do this sort of thing now. It the strolling arounf afterwards that is the problem as i live on the coast in a beautiful part of Devon so we naturally have walks along the beach here. Having visotos is such a stressful situation. My son moved to London 7 years ago and i have never visited him once, he does understand why. Now he has a partner it makes me more anxious as she does not know yet. My daughter is a Doctor so does understand my situation but her boyfriend has no idea, he is lovely but i am so embarrassed to tell him.  My hubby has been holidaying alone for 8 years now though he tends to go with The Ramblers, he is off to the French Alps and Switzerland next month for three weeks so i am happy about that. I do want want to ruin his retirement..

How long have you had your issues?? How do you cope day to day??

It has been mentioned that i may be offered a colostomy soon.

Not had a good day today, had an accident whilst out shopping at the supermarket, so embarrassing. I just ran back to my car and sobbed all the way home.