Leakage/incontinence & trouble emptying after Sphincterotomy

I had my redo in 2015 and have minor random leakage, more so at night. My GI at the Cleveland Clinic told me there is a GI there that does the  sacral nerve stimulator, but i have not set up a visit as i dont know if i want to try something like this. just been living with it for 8 plus years

@Pouchomarx posted:

I had my redo in 2015 and have minor random leakage, more so at night. My GI at the Cleveland Clinic told me there is a GI there that does the  sacral nerve stimulator, but i have not set up a visit as i dont know if i want to try something like this. just been living with it for 8 plus years

I remember you said you had a anal burn, is that gone too???

I have done a lot of research on sacral nerve stimulator.  The research suggested it works on some people and not others.  An initial outpatient procedure is done, and if it shows 50% improvement, then they will do the permanent implant.  I am going to consult with a Colo-Rectal Surgeon about this.  Pouchomarx, I would not rule it out.  Seems to be a relatively safe procedure.

I have leakage at only at night while asleep. It started around Dec 2023, I got a jpouch in 1996, last year when at my “new” gastro, who is now is no longer there, she didn’t mention any change in meds, or any procedures for another year. She said I should do pelvic floor exercises, that was her solution. I have been on a Cipro/Flagyl rotation since 2014, along with azathioprine, Metamucil & loperamide. I think I have pouchitis, but at this point I do not have a contact at Mayo Clinic in Rochester, MN, I’m thinking maybe immune to the antibiotics after all this time? I do have an appt with another new gastro in September.

Besides sacral nereve stimulation, Botox injection is another potential solution.  Botox is used to relax the pelvic floor muscles that are not coordinating properly, which can help alleviate the symptoms of anismus.   Here is a link for more information:

https://www.surgeoncolorectal....ic%20floor%20muscles

Hope that helps. 

@Surya posted:

I have done a lot of research on sacral nerve stimulator.  The research suggested it works on some people and not others.  An initial outpatient procedure is done, and if it shows 50% improvement, then they will do the permanent implant.  I am going to consult with a Colo-Rectal Surgeon about this.  Pouchomarx, I would not rule it out.  Seems to be a relatively safe procedure.

curious how this might affect people with UC? when i had my hernia fixed , Dr Shen was upset they used a mesh to fix it. He stated anyone with an autoimmune issue could cause more issues with putting a foreign material in your body. So far its been several years with no issues but i would think if a mesh could cause issues why wouldnt a stimulator??

Using mesh to repair a hernia in someone with ulcerative colitis or another autoimmune disease can indeed present some challenges. The body’s immune system might recognize the mesh as a foreign object, potentially leading to an inflammatory response or even implant rejection. This reaction can exacerbate autoimmune symptoms or trigger new autoimmune issues.

As for sacral nerve stimulators, they are generally used to treat conditions like overactive bladder or bowel dysfunction. While they can be effective, there are potential complications such as infection, pain, and unwanted stimulation. However, there isn’t strong evidence to suggest that sacral nerve stimulators specifically worsen autoimmune diseases. 

About two years ago, I had Inspire -  a medical device designed to treat obstructive sleep apnea (OSA) – implanted in my chest under the skin. Unlike traditional treatments like CPAP (Continuous Positive Airway Pressure) machines, Inspire works by stimulating the hypoglossal nerve, which controls the tongue and other muscles that keep the airway open. I control the device using a remote.  I turn it on half hour before I go to sleep and turn it off when I get up.

I have had no issues with this implant in my body.  I believe a sacral nerve stimulator would be just like that.

@Surya posted:

Using mesh to repair a hernia in someone with ulcerative colitis or another autoimmune disease can indeed present some challenges. The body’s immune system might recognize the mesh as a foreign object, potentially leading to an inflammatory response or even implant rejection. This reaction can exacerbate autoimmune symptoms or trigger new autoimmune issues.

As for sacral nerve stimulators, they are generally used to treat conditions like overactive bladder or bowel dysfunction. While they can be effective, there are potential complications such as infection, pain, and unwanted stimulation. However, there isn’t strong evidence to suggest that sacral nerve stimulators specifically worsen autoimmune diseases.

About two years ago, I had Inspire -  a medical device designed to treat obstructive sleep apnea (OSA) – implanted in my chest under the skin. Unlike traditional treatments like CPAP (Continuous Positive Airway Pressure) machines, Inspire works by stimulating the hypoglossal nerve, which controls the tongue and other muscles that keep the airway open. I control the device using a remote.  I turn it on half hour before I go to sleep and turn it off when I get up.

I have had no issues with this implant in my body.  I believe a sacral nerve stimulator would be just like that.

GEnius!!!!