Sacral Nerve Pacemaker for Bowel Incontinence - any experience??

[Blazing88]

Just looking for some reassurance/advice/experience really.

1st pregnancy, 4th degree tear/episiotomy, caused bowel problems (think can't control urgency, get about 10 secs warning). Anyway, just to poor/appalling aftercare, nothing was done, and I was pregnant again before really seeking further advice. Was never warned that 2nd pg could cause even more damage.

Fast forward 2 years later, and basically I am housebound in the mornings as I have no control over my bowels.

I have had to pack in work, as I simply can't be in a job where I'm not by a toilet etc. Now working from home. I have two small children and when I get the urge have to simply abandon them to rush to the toilet.

So yes, it's having an impact on my life.

Finally saw a surgeon yesterday, Been having all sorts of tests over the last 10 months.

Surgeon said 2 options :

1. Have bowel surgery, they cut open between vagina and bowel and cut out the damaged section of bowel. Resew it all back together. Recovery is hard, think episiotomy but 10x worse (said surgeon!) as area is so infection prone they don't now sew you back up, they let the wound heal itself.

1. Fit a pacemaker into my bowel (well, think it's more my back). Recovery much better but have it for life and have to have the battery back changed every 5-7 yrs (so GA every time)

I've also been told to consider stopping at just 2 children as another pregnancy could obviously cause even more damage. But basically, once i've gone ahead with surgery, definitely do not get pregnant!

I'm really overwhelmed with all this. I know I have a problem, but opting for surgery is just so major.

Anyone offer any experiences of this?

Anyone?

Sorry can't help as sounds awful but do have similar problems myself (not as bad and no kids to blame) - I'd do some serious research before you decide what to do. I mostly manage my condition with various drugs but accidents do happen. My consultant did mention the pacemaker thing so I have checked it out and its reversible is the good news but I am leaving things as they are at the minute as have other stuff going on.

Good luck whatever you decide!

I haven't even been offered drugs :( It was an initial hour long meeting with the consultant.He's calling me back in 6 weeks to run more ultrasounds etc.

Thanks for replying though :)

I've been offered a Spinal Cord Stimulator for back pain. I'm not going to have one but in your position I would try that as option number one. It's considered 'minimally invasive' so not a big deal to have fitted and they do a trial period anyway to see if it helps before implanting it permanently. I don't imagine it would be a cure but might be helpful.

I have in the past nursed patients having perineal resection surgery for cancer of the rectum. I've not heard of it for any other reason. I would be asking for a second and third opinion before even considering something so major. There might be a third option, of course, which would be a colostomy. I know that sounds awful but possible better than your current situation.

Sorry not to be much help and good luck. There might be other forums where you will get people with more experiences to share.

Would it clear up with a temporary colostomy? This has come up for me too and still avoiding it but not as bad as you sorry! That would maybe give the area time to heal? Not sure about this as never had kids so not sure of cause here (I was just born faulty). The drugs are just to regulate what happens (from blockages to leakage and everything inbetween) although to be honest some of the drugs which I need also cause incontinence (chicken and egg situation).

Crap isn't it! (no pun intended ha!)

I just feel, like you, I'm trying to avoid it. Surgeon says no chance of healing. Basically, the 2nd pregnancy did most of the damage (not the birth, the actual pregnancy, weight on the pelvic floor area etc)

In all honesty, another big problem I have is no family to support if I had surgery - so how on earth would I cope with two small children? Can't afford to put them in nursery as we're living off one normal wage (and a very small input from me) as it is. My mum (lives miles away) has pretty much said, you'll have to wait until the kids are at school.

Oh dear on that basis the surgery sounds like less "down" time but a bit scary. I would get a second opinion and also google it to death. Ignore the scary stuff and try to find other women with the same problem - there will be a thread somewhere, there always is. I was born dysfunctional apparently but you sound like you could get fixed. Has physio been mentioned or tried? The damage to pelvic floor is surely pretty common after children? Its worth a shot.

Can OH get time off to look after you if you have something done? Even holidays if he has to?

Physio was pointless :( Just didn't work. Too much damage apparently.

I agree, I think there must be someone else out there wondering the same. The guy I've seen is apparently 'the man' for this, held in quite some awe. I did trust him completely so would feel safe in his hands so to speak.

Just surgery seems such a big step. I'm probably just in denial!

Sorry to here you're struggling too. OH probably will have to, just take it unpaid. he's been in a new job for the last 2 months so not much entitlement yet.

Oh dear don't know what else to suggest then.

Good luck whatever you do ... let me know how it goes?

Blazing, I have the same issue with incontinence as you, like a 20 second window to get to the toilet coupled with what is probably IBS so stools most likely loose. Anyway, to cut a long story short, all this has come about since the birth of my daughter 6 years ago. 3rd degree tear, so not as bad as yours, and docs have done various tests and tell me there is nothing wrong with my back passage/reason why this is happening to me (strangely this wasn't a problem prior to childbirth!)
So I have a date next month to consider sacral nerve thingy. Apparently they do a 2 wk trial first to see if it is worth fitting it permanently. I have tried physio, bio feedback etc etc with no joy. My life now isn't great, and to a certain extent I try not to let this beat me, but my daily life revolves around not eating/taking 8 imodium if I need to leave the house.
It really is rubbish and I know a friend with a stoma bag who lives a better quality of life than me.
The surgery you mention wouldn't help me and it does sound pretty drastic, I'd give the sacral nerve therapy a try first. I feel your pain. Only this last week I had to drag my poor bewildered daughter off the bus several stops early to rush to a Mcdonalds toilet, then we walked over a mile to her swimming lesson.
It's just rubbish. I wouldn't wish this on my worst enemy.

Blazing I have a sacral nerve stimulator although its for my bladder. I have had both good and bad responses. It certainly isn't a quick fix! I had to have stage 1 repeated twice as as for whatever reason the pacemaker stopped working and needed to be replaced. Once stage 1 was repeated I got some really good results and was really pleased that I had undergone the surgery (it is painful). Unfortunately I am again having problems after having a car accident and just waiting for an X ray to see if the wires have moved.
I see a consultant at UCLH London.