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Reply to "Sacral Nerve Stimulator to Help with Fecal Incontinence"

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.

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