Sacral Nerve Stimulator to Help with Fecal Incontinence

I am considering having a Sacral Nerve Stimulator installed.  For lack of a better term it is a "butt pacemaker."  It is intended to reduce the number of bowel accidents.  You can find info at Mayo Clinic.   Have any of you had this done or considered it.  I would appreciate having your advice or comments.  My surgeon and I will discuss this on June 3, so your early responses will help.  Thank you.

p.s. Recently spent 9 days in hospital after emergency surgery due to scar tissue/heavily inflamed intestine repair.  My takedown was in early 2009.   I hope this doesn't happen to you!

Original Post

No idea...I had two gracillis muscle flaps done for the same reason...they are brutal surgeries and do not come with guraentees...the 1st work for 2yrs and the second didn't survive the 1st week post op...thus the k pouch.

It is one of those problems that has not been studied sufficiently and does not interest the medical world sufficiently. I know of one person from this site who had silicon implants (sort of like 4 tiny pillows put in)  for the same reason but the final result was catastrophic.

Good luck with it...I hope that it works...and please keep us posted.

Sharon

Hi my Mum had a Sacral Nerve Stimulator inserted many years ago at St. Marks Hospital UK and it has been brilliant for her, BUT she does not have any history of IBD, cancer etc hers was only a 'mechanical' issue. Whilst I had my pouch formed at St Marks I am sorry but I do not know if they ever use this with pouches etc. 

Thank you for your note.  I'm glad the device is working well for your mother.  It has been used recently for some people with j-pouches, although not many yet.  My surgeon thinks it is worth trying but my primary care physician is less enthusiastic.  So I am somewhat conflicted because I respect them both.

Sharon,

Thanks for your comments.  I'm sorry that the gracillis muscle flaps procedure didn't work for you.  The sacral nerve stimulator was first developed for bladder incontinence, which is not my problem.  But some people who had that done noticed  definite improvements in their bowel issues...which  definitely IS my problem.    You may have see my prior remarks that my surgeon thinks this is worth testing to see if it will work, and if the test goes well, she will install it.   But my primary care physician is critical of the idea.   They are both good doctors, so I am conflicted.   I lean toward doing it, and yes, I will post my results afterward. 

I got one a couple years ago. My sphincters were damaged after 7 great years with the pouch, about 16 years ago, leaving me extremely incontinent. I had a splinter tightening surgery and also went thru biofeedback, I used meds to thicken and also a cotton ball tucked up just inside the anus. This let me get by with just a couple accidents a week.

The surgery is 2 parts. First you keep a diary of BMs and accidents. I had to go off the cotton ball for the trial, which basically left me in a perpetual state of leakage. The stimulator works best on as solid as possible stool, so I stayed on Metamucil, inmodium, and codeine (and still take them post stimulater).

they implant the leads and hook up an external stimulator for a 2 week trial and you keep another diary. This is a tough 2 weeks because you cannot bend at the waist and cannot shower. But they are looking for a 50% or better improvement. I had a better than 50% so hey did the real implant.

At first I was disappointed because although much improved from my no cotton ball baseline (5-8 accidents/day) my new normal post stim with no cotton ball was still 1-2 accidents/day. So, I went back on the cotton ball. I still have an accident or 2 a week. 

BUT I have come to conclude that the stimulator is really working. Pre stim If I would go to an exercise class or needed to walk more than 20-30 minutes, It practically guaranteed an accident. Post stim, I walked around Washington DC 10 hours/ day, several days in a row with no accidents, I can do an exercise class or an hour on the treadmill or a 5K, no accidents. This stuff was unheard of before. I can pretty much predict my accidents now, based on what I eat (i.e. Too many raw veggies or too much popcorn) or drink (i.e. More than one alcohokic drink, too much coffee without food), forget to take my meds, etc.

SO-even with my extreme issues of severe incintinence with a pouch, it has definately improved my quality Of life. 

Diwnside: I can feel urban my upper left buttcheeks. It gets uncomfortable if I sit too long on a hard surface or lean to my left side. I wore a hole in my fitted sheet where I sleep on my back after a couple years. It like having a rock in your pocket all the time. But I think the upside outweighs it. I carry the remote to shut it off with me everywhere, "just in case" but I go for months without ever needing to take it out of my purse. I can go thru normal airport security, but one in awhile that will turn it off and I have to use the remote to turn it back on. Oddly-if the stimulator is turned off, I sometimes set off store theft alarms! In a few more years, the batteries will likely die and I'll have to have surgery to get a new one put in-hoping he new model will be smaller and rechargeable without repeated surgery every 5-8 years.

I don't generally feel the stimulation -the first year or 2, depending on how I moved or twisted-especially in bed, I could feel a little thing down there, but by now, everythig is pretty settled. So, it's not perfect, but did help and in my case, though not without its downsides, the upsides outweigh the down. 

I had mine done at Mayo Rochester 2-3 years ago. I am pretty sure I am the first pouch patient they ever put a stim in.

JJA thanks for your input. I have had a j pouch for 25 years. The last couple of years FI has gotten worse esp with exercise and minor leakage in the day - which has lead to skin issues , hemmerehoid/skin tags and fissures - so I am now pretty over it and frustrated. Question- can you see the implanted unit? Where is it placed? I had my first surgery at mayo but would like to stay home if I do this. How did you find doctors trained and educated with this issue and procedure??

thanks!!

You can't see the implant, but of course, there are scars. The implant is in my upper left butt cheek-like if you are wearing jeans with pockets its in the area between the top of the pocket and the waistband. I can feel it through my skin/clothes, but you can't see it, there is not a bulge or anything. The scars are a circular, smaller than a dime scar on upper right butt cheek where the external cord for the trial came out and a lateral, 2-2.5" straight scar on upper left butt cheek where actual implant was inserted. 

My rochester Mayo GI referred me to a Rochester Mayo surgeon who did the implant-Dr. Chua. They more commonly used by urologists for urinary incontience, so the Medtronic rep told me that if I needed the programming adjusted, I might be able to have a local urologist do that, but I haven't needed to change my programming at all. I don't know the best way to find a local, educated doc since there are few who treat FI anyway, and way fewer who have ever some a SNS implant on someone with a pouch. And I have never seen the surgeon again since I got the implant. I guess I would see if your GI could refer you to someone? Or it looks like Medtronic has a "find a doctor" based on your zip code at the bottom of their page: http://www.medtronic.com/us-en...terstim-therapy.html 

I went to Rochester to have the consult with the surgeon, and once I got things sorted with my insurance, I had to go back 2 times-once for the trial surgery and then 2 weeks later for the real thing. Each was was "same day surgery" but they wanted me to stay over night in a hotel each time just in case, so I was close in case there were any issues in the first 24 hours. (I live about 100miles away in Wisconsin)-I had  o issues.

Best of luck!

Dear Journey,  my sacral trial didn't work but I'm glad to have tried.  I definitely think it's worth the fuss and incovenience to try.  In May I had a FENIX implant but it has not helped either.  If anything my incontinence is worse.   Due to the expense and small market for the device, Johnson and Johnson recently stopped support for the FENIX although I hear that may change.  FENIX is a magnetic titanium artificial sphincter.  The charge to Medicare was about $48,000.  While I am increasingly discouraged about my issue, I am lucky to have a wonderful surgeon and related medical support team here in Portland, Oregon. Other than this problem I am in good health, socially and professionally active, and according to my family, upbeat and non-complaining.  I avoid complaining to them because I want them to not fuss or worry too much.  So it is nice to have this outlet to occasionally vent and to seek advice, and hopefully to be of some help to my JPouch friends.  If you proceed with the sacral test, please let us know how it goes. I hope it is successful!

Thank you @TCM. I'm sorry that both of the implants have not been helpful to you, but you seem to have such a positive attitude! I hope you are able to continue to participate in life so actively and another solution will work for you. I'll keep you all posted if I do the sacral test. I'm trying a few other things first, but I'm considering it down the road!

I am currently in the middle of 2 week trial for the Medtronic Interstim Neuromodulator. Trying to decide if I’ll move forward with second surgery when the actual Interstim will be implanted. The lead is in place, but currently using the external “disposable” device worn on belt.  I am wondering if anyone else has proceeded with this device, and if so your success?  I was reading above that it is necessary for stool to not be more formed for the Interstim to work, which mine is not. I have had improvement, definitely reduced frequency with the device but disappointed still having leakage. Due to previous pouch prolapse, it was recommended to not allow stool to be solid because then I strain to empty, so this may be a conflict. Anyone who has this, are there other considerations you’d like to share?  I know that there are others who have had success with device and jpouch per one of the Medtronic reps I was able to speak with although my rep has limited experience. Struggling for clarity- the standard is 50% improvement, which my frequency is, but really wanted leakage to be fixed too and trying to decided if worth having this implanted and dealing with the risks and uncomfortableness. Appreciate any insight!

ljz

LJZ,

I tried it but it didn't work for me...but it sure seems like a good device for those who do have success with it.  My surgeon warned me that leakage would still be an issue but not as frequent.   I'm still battling very frequent leakage via my j-pouch and am considering reverting to an ileostomy after nearly 10 years with my j-p.  I wish I could tell you the stimulator worked for me but we knew going into that the odds for success (for me) weren't strong but worth trying.  I've heard from others that the discomfort of the stimulator eases over time.   Best of luck to you!

Thanks! Luckily no discomfort for me! Keep thinking, as I’m sure you do, that once in awhile I’d like to be in the good %, the % that achieved success. Sorry you are still struggling! One thing that did help me, and not enough that I am not still looking for improvement, was using fleet enema bottle with just plain warm water to rinse out pouch after BM. It often gives me several hours where I feel pouch is actually empty and I don’t have  to worry about leakage going out for awhile. Lube the insert part first. I don’t do every day though on vacation I did!😄 might give it a try.

ljz

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