Has anyone on this group gotten a Sacral Nerve Stimulation implanted?

@janspons, I'm bringing @p95 @januaryjane @jimdiehl who may have information or experience about sacral nerve stimulation for fecal incontinence to share with you.

Jan, I hope things go well with your new specialist. It must be exhausting to get up 2 to 5 times a night to deal with incontinence.

I explored sacral nerve stimulation implantation last year and exchanged texts with a Johns Hopkins surgeon in Baltimore who does this. She told me to concentrate first on pelvic floor therapy which I did. In the meantime, my primary care physician recommended I change to a low residue diet eating several smaller means a day instead of a large mean. That action has reduced, but not entirely eliminated, fecal incontinence I would experience ending in a completely liquid, uncontrollable fecal expulsion. At this point I am not sure I will consult with this surgeon. If helpful, I may be able to go through my DayTimer notes to find the name and contact information for the surgeon that I exchanged texts with.

I did have SNS about a year and a half ago at Mayo Rochester through the colorectal surgery department. I was very happy with the surgeon that placed it and the care I received before and after. I had colonic inertia and had recently developed fecal incontinence without any warning occurring maybe once a week or less, but with no notice. I was offered the trial though CR Surgery which was done for constipation and fecal incontinence, It did help the fecal incontinencei buy not the colonic inertia. Because of the severe constipation, I have a loop ileostomy. I also had urinary retention which it helped completely, so we left the SNS in. I would definitely try it from my experience. Personally, I think I would prefer CR surgery to perform it (but I am a retired SIIC nurse).. . I'm not sure if GI does it at Mayo. I live in Florida and I still would still fly to Rochester! Ive been to JH, but prefer Mayo at least as far as clinics go,

@slangston Thank you for your thoughts & experience with this. It was brought up to me, then I had a virtual appt with a new Dr at Mayo and she thought I should pelvic floor therapy first and if it doesn't seem like it will work, then meet with a colorectal surgeon and possibly end up going back to an ileostomy bag. I would really like to avoid that, but I have had the nightime incontinence for over 2 years now, and sometimes 2-4 times per night. That is something I don't want to live with for the rest of my life, I am 65. They tell me my sphincter muscles are weak due to crohns or whatever. What I don't understand why it started so randomly. I sleep pretty hard when I sleep, so I just don't wake up, and waking up 2-4 or 5 times per night, I always feel fatigued. Hope you are doing well, and again thank you.

My fecal incontinence started abruptly before my ileostomy kind of out of nowhere. The. pelvic floor therapy at Mayo Rochester is supposed to be VERY good. It is a two week program. The only reason I was not a candidate is because I had PFT many times from different therapists over the years and it did not help. If PFT doesn't help, I would think SNS would, and is covered by Medicare.
I have more tests in Rochester next week to determine if a colectomy is something that would work for me. I have a loop ileostomy which I don';t like and want an end ileostomy if I have to wear a pouch. I was thinking I would ask if a J-Pouch would work for me when I have my video follow up appointments with GI and CR, but I don't want to have fecal incontinence again. I would think the SNS I have would prevent that. It would be nice not to have a pouch!
Back to you,...I would definitely do the PFT at Mayo Rochester. Not sure where you live, but I would still do it at that location. even having to stay in an extended stay hotel.

What does PFT STAND FOR

@quiteachiver75 pelvic floor therapy

@slangston I am in MN, about 4-5 hrs away. That is where I have doctored for my IBD since getting my jpouch in 1996, only the Dr I had retired 3 yrs ago unfortunately & am on my 3rd one since.

YES I HAVE AND AM NOT HAPPY WITH IT I FIND ITS UNRELIABLE AND CONSIDERING HAVING IT REMOVED

@quiteachiver75 Pelvic Floor Therapy!