# Article: biofeedback ineffective for Neurotech fecal incontinence



## CalmWaters

Hey, guys. I found an article with a study of 12 people who have nerve damage and don't feel the urge to use the bathroom. They also had no sphincter strength and was diagnosed with patulous anus. Their pelvic floor was weak too. To summarize, 3 months of biofeedback did absolutely minimal for them, only increasing their strength from 0 to 1.

https://www.ncbi.nlm.nih.gov/m/pubmed/8797647/

I found another article that said sacral nerve stimulation can help neurogenic fecal incontinence. There are other types of stimulation too.

https://www.hindawi.com/journals/grp/2013/563294/

Another article states that damage to the internal sphincter causes weakness in the external sphincter.

https://www.ncbi.nlm.nih.gov/m/pubmed/3410240/

If you find the cause of your problem, you can be able to treat yourself or else your efforts are going to be futile.


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## PokerFace

Nice, luckily no of us has fecal incontincence, I am assuming "feeling no urge to use the bathroom" means they are fully incontinent


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## CalmWaters

We are what doctors diagnose with minor fecal incontinence, the involuntary loss of flatulence. And this does actually relate to us because some of the symptoms could be less severe forms of what they have. So yes, this can definitely help us.


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## PokerFace

It hopefully is just pelvic floor dyssinergia in my case, but I guess we're all different


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## CalmWaters

But are you sure it's just that? Did you get tests to prove them all? I get that we're all different but what if there's a chance if they're all related somehow? Pelvic floor disorders can also be effectively treated by stimulation. The dude from the other post doing tibial nerve stimulation may be onto something!


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## PokerFace

I am close to be 100% sure it is just that. Of course it may have gotten aggravated by something else but the fact that we all never for once leaked actual sh*t may really mean something.
There are people who got surgeries and I can't relate to that. It I can just tell from my perspective


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## Guest

I concur.


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## CalmWaters

I just ordered a TENS device. I'm planning to put the electrodes directly onto the skin area where my sacrum is.another study suggested lower width and higher frequency (31 vs 14Hz) is more effective.


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## Guest

I´m deleting this, wrong topic, sorry.


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## horizonzero

This is the thing I was diagnosed with pelvic floor dyssynergia (anismus) and did biofeedback

I could then get a complete evacuation and then learnt that if I went twice a day I would have no LG or FBO and this was the case for a good while there - almost 2-3 years of freedom.

The problem never went away - If I didn't have those motions it would crop back up again I couldn't let the body run it's natural course, I actively hovered over the toilet and automatically went - no urges.

I recently came across this

https://www.imageupload.co.uk/image/EPJL

It details that Pelvic floor dyssynergia can be caused by intussusception

So I've opted to pay privately to see a colorectal again.


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## CalmWaters

Started using the device today. I set it to 30 microseconds for width, near 70 Hz for frequency and level 6 intensity. I didn't want to electrocute myself so I set it to the point when I could feel it enough not to feel pain. I'm not sure if I'm doing it correctly but I'm just following research articles that were found online.


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## CalmWaters

Okay, I'll admit I went a little overboard, the standard is 200uS and the frequency was 14Hz, but one study calls for short width and and higher frequency. But good news, I felt a little gas and my sphincter reacted to it just now. Back then it didn't used to. It's only been a day! I might be making some progress!


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## Guest

Great CalmWaters, i hope it works, where exactly you put the electrodes? You using 2 or 4?


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## CalmWaters

I'm using 2, directly on the sacral bone above the butt cheeks side by side. I'm also doing sphincter exercises. I just used it again because I'm also studying for finals so I can't sleep today. In the second try, I used 180uS with 20Hz at an intensity of 4.5. I felt a whole lot of tingling but it was the furthest I got without pain. It seemed to work better than the previous test run because I could hold my gas better. Anything gas that was building could be felt, and for the first time in a long time, I could actually hold my gas. This has been a miracle so far. I'm going to do this everyday along with the sphincter exercises. So I guess LG for me has been loss of sensitivity and muscle dystrophy sorta but also because I sometimes have a lot of gas. For the exercises, I do 20 seconds of holding in my sphincter as tough as I can, followed by a 10 second rest for 5 minutes. I repeat this 3 times a day, started on Saturday. I'm still not sure about LG though. It might take at least a week to see some improvement.


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## CalmWaters

Okay, just now, I felt some LG. At least the bubbly feeling came back. That's a start.


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## PokerFace

It is ok to have a weakening effect when you activate an area, it's just part of the process -> fatigue -> resistance -> soreness/weakeness -> build


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## Jonasbonus2

Pete, did you try Sphinkeeper procedure yet? Im getting to the point of thinking that may be one of the only solutions besides nerve simulation or nerve regrowth.


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## Jonasbonus2

Thanks Pete, i appreciate it. Currently on an extremely strict diet with nerve regenerative vitamins and low fodmap/low sulfur. Using probiotics( like florastor) to also tackle the problems. Im hoping, 6-9 months of living like this, that Ill see some major improvement.


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## CalmWaters

I think nerve dysfunction may exacerbate muscle atrophy. It would be better to eat protein to rebuild muscle. Sulfur might be unavoidable if we want to be better.


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## Jonasbonus2

I agree. However, i think we should try and stick to low sulfur proteins if possible. Obviously, every protein has some degree of sulfur. Red meats being the highest offenders. Perhaps its a better idea to say its better to follow a low thiol and limited red meat diet rather than low sulfur. I think chicken and salmon could be very beneficial to recovery.


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## PokerFace

I loaded up on tons of protein when I did my crazy gym session at the beginning of my journey to cure myself. I was vegan for awhile and at some point I coxuldnt even close the garage without fatigue. I pretty much had beef chicken, rice, vegetables 
Also protein and amminoacids supplies aren't worth a cent


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## CalmWaters

Actin and myosin requires a lot of methionine, which is one of the two sulfur-containing amino acids. If you have foods high in that, you may solve the muscle part of the sphincter but it does not solve the atrophy of the rest of the rectum. The rectum is supposed to have connective tissue as well, 3 of the four layers contain connective tissue. Vitamins, zinc, and copper all help with that but be warned that too much zinc causes iron, copper and calcium deficiency. An overall well balanced diet with enough mixed grains (optional), nuts, meat, vegetables, fruits, and plenty of water will do. Also don't overdose on amino acids, they have a lot of consequences, especially L-tryptophan. Red meat has more iron in it because it is slow twitch muscle, which has a lot of myoglobin and mitochondria.


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## Jonasbonus2

Quick question for Pete if hes still around.

Where do you go to get the sphinkeeper procedure( Im from the US). Im gonna spend a year trying to figure this out naturally but if I cant that may be the option I end up taking. Also, any other suggestions would be appreciated. Im determined to find some kind of solution with just about any means short of an ostomy bag. If you could give any advice about medical procedures or anything at all, that would be greatly appreciated.

Obviously this would be accompanied with major lifestyle changes( that Im already doing) that would give me that 95-100% cure i really need.


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## Jonasbonus2

Thanks for the advice Pete. I know this is going to be a long road to cure. I understand were talking years here. If worst comes to worst, Ill fly out to the UK and get Sphinkeeper procedure done. Its a tough thing to deal with( as you know), but Im optimistic that long term Ill be ok.


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## Guest

Jonasbonus2, I tried pretty much everything you wrote for years, biofeedback, electrostimulation, Kegels, PPH surgery, removal of sigmoid and rectopexy, diets, supplements, vitamins, etc. The only thing that is working to the point that i can do a normal life are exercises, mountain bike, and the ones that PokerFace told us, kettlebell swing and deep squats. For now when i stop exercising the stench and gas incontinence comes back in about 10 days. I stopped exercising almost 10 days ago so the stench must be about to come back, i´m doing this because i want to experiment the tibial nerve stimulation with the configuration that Pete.99 said.


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## Guest

Here is my report of today, my butt itches. Merry Christmas.


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## PokerFace

I think I may have lost a part due to my lack of concentration. So this stuff would be what? Nerve stimulation ? Muscle stimulation? What is this supposed to do?
I'm lost


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## CalmWaters

Here's another side note I have for people who suddenly had the issue without physical defects. Have you guys ever considered that thinking too much about it automatically makes the wrong connection between the sphincter and the mind stronger? I'm took a neuropsychology course and learned that the more you think about a subjects, the easier it is to remain in your long term memory. For us, the insula, temporoparietal junction, and the anterior cingulate cortex might have all these strong and incorrect connections making us always reading into and overemphasizing about our gas issues and sphincter feeling, allowing it to close improperly. That's how some people got off with antidepressants or antipsychotics I guess.


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## Jonasbonus2

Ive personally noticed 0 difference physically from anti depressants and Im on very high doses of them. About to try antibiotics for SIBO and see if that makes any difference long term. Im not super optimistic but Ill give it a try.


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## CalmWaters

Update: after a week of sphincter exercises and TENS on sacral vertebra, the odor is less prominent. I used to always have a fecal smell in my room but now it's almost never present. Sensation has returned to the rectum but may leaky from time, and even when rectum feels pressure. I'd say it's a start for now. Also, I ate lots of meat and kimchi this week, so I'm bound to smell something if I did smell.


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## Guest

Congrats CalmWaters, when i started the exercises of Pokerface i also had fast good results so it´s not a placebo effect or something like that, and i too first noted the change of smell in my room and, tighter anus, farts with more sound, etc. in just a couple of days, that´s why i jumped with the something is shut down at nerve level theory and exercises reactivate and strengthen those nerves, reflexes and muscles.

"Unfortunately" after 12 days of not doing exercises my smell hasn´t returned but i´m desperate for bicycling so i don´t think i will be able to do the tibial and sacral nerve stimulation experiment like i wanted, however i´ll do like you, i´ll add it to the exercises, if my theory is correct the tibial and sacral nerve stimulation will be a good treatment addition, yes, i´ll do both stimulations, one day one, one day the other.


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## CalmWaters

Yes, I think exercise should be a must. Sacral stimulation alone does not increase bloodflow and increase muscle tone. Without exercises, sacral stimulation is less effective, and may take more time alone. Gosh, I want to bike but I don't have a bike and it's cold out. I guess I'll do some running even though I'm afraid to go outside when I don't need to. If I remember correctly, didn't pokerface say running didn't help?


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## Jonasbonus2

I run a lot and can tell you that unless youre on a steep incline, its not gonna help. From experience having run quite a bit, id suggest treadmill running on a high incline if youre gonna do that. Has to be purely uphill. Downhills and flats dont work.


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## Guest

I don´t remember Pokersaid having said that, in my case running made the problem much worst, even increasing the pain down there, the spotting to the point that it looked and smelled like i fully ###### myself, etc. disgusting and maddening.

At first i didn´t bicycle much when cold, i had to make that habit. Now i only avoid raining. I tried a stationary bicycle and an elliptical machine but it´s not the same at all, you use much more muscles when doing the real thing. Though i think that the elliptical is better than nothing.

Remember that at first you´ll do all the effort with the quads, eventually you´ll improve your body and technique and your glutes will kick in, it takes time but they will kick in, that´s when i think that the pelvic floor and anus starts exercising, like Katy Bowman says, "a strong booty is a strong and healthy pelvic floor". You can find more info about that here

https://www.livestrong.com/article/454976-does-bicycling-work-your-butt-muscles/

EDIT, i forgot to add that i live in mountain zone and i do big uphills that can take me up to half an hour, that for me is a lot of effort. EDIT


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## PokerFace

Exactly. It will only make your whole pelvic floor drop. The best things are the leg press & any kind of abs excercise. Squat, and kettleball. Running onlyt helps uphill (very uphill) and consciously using butt muscles while doing it.
The 100% complete excercise would be horse riding


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## CalmWaters

I found a slide somewhere with data from several articles regarding fecal incontinence. I'm going to assume these refer to the number of times stool is unintentionally released. It says sacral nerve stimulation has the highest result other than sphincteroplasty, gel and fat insertion, and etc. But sacral stimulation requires at least 6 months to be effective in all cases. Other than that, gel and fat insertion does improve quality of life by 85%, but I'm not sure how much the procedure costs. Moreover, gels and fat insertion deteriorate overtime so it's not a cure. Also again, sacral nerve stimulation may not be favorable for certain people with specific defects like spinal cord injury. Still, if people can hold stool, they will be able to hold gas, so I'm hopeful.


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## Jonasbonus2

Pengu, if biofeedback fails( which I expect it to because my condition is particularly bad) for me Im getting SNS. Ill see how well it works for my issue.

All the best and Happy New Years.


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## Guest

So, i restarted exercises and incorporated transcutaneous tibial nerve stimulation and transcutaneous sacral nerve stimulation, i´m doing them everyday, half hour the tibial and half hour the sacral. It works, i thought that with the exercises i couldn´t be better but that electrical stimulation deliver a considerable boost. I ddin´t get good results years back probably because of bad configuration of the device. A little study about transcutaneous sacral nerve stimulation.

https://www.ncbi.nlm...pubmed/23910042

JonasBonus2 by logic the classic sacral nerve stimulation with the implant should be more potent than the transcutaneous sacral nerve stimulation, if you go that path please tell us your results, i wish you the best.


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## Sufferer25

Quick question for all you guys and your ordeals with the stimulation of the tibial and sacral region.

What machine are you using to go about these procedures, the TENS(Model types and maybe what I should be looking for in one)? Or is there another one/more recommended ones.

As part of this can you guys maybe describe or provide exact info on where you might be placing these electrodes in relation to which parts of your body, if that would not be too much a hassle that is (Calmwaters/Mariano)

Thanks


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## Guest

I use Mio Peristim from I-Tech, the old model, i still have the patches from factory, exactly this one

https://www.efisioterapia.net/tienda/graficos/productos/22/Mio-Peristim.jpg

For tibial stimulation i found that in the left foot works better, still i´m going to stimulate through right foot sometimes, you have to play with both foots and positions to find where exactly is your nerve, more or less like this










For the sacral stimulation i put the patches approximately in this position, again, you have to play around to find the best location, in me is exactly when the butt crack starts, with the patches separated about 1 to 2 cm (about half inch, more or less)










More info about transcutenous sacral nerve stimulation here (if the link doesn´t work copy paste it in Google and should show you the access to the page)

https://www.kegel8.co.uk/articles/pelvic-floor-exercise/sacral-nerve-stimulation.html

Still i strongly suggest to do also the exercises of Pokerface and bicycling, horse riding, etc., if you combine that with electrical stimulation there is no way you can´t get good results.


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## Sufferer25

Great thanks for all the information in regards to the stimulation, one last thing if you don't mind me picking your brain too much, but where might one find information as to which setting is best when using one of these devices or just which one might you be using, because i see calmwaters bouncing around a bit in terms of which setting he is using. Thanks again


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## Sufferer25

From the looks of it that link led me to what seems to be an overall good TENS, the kegel8 for men that is. Anyone have any experience using this, downs upsides, objections towards it anything would be helpful!

Also pokerface you're so adamant towards the muscles being the main force of our problems, but have you considered trying the nerve stimulation that seems to be circling as a hot new thing to do at the moment? I havent seen any responses in regards to it from you, but I did see a much older post of yours relating to the muscles in the sacrum in which you declared at the time that you had found "the muscle" you needed to work in that area. Have you given up hope on that being the area or what information might be deterring you from pursuing this with the rest. Don't get me wrong here I believe muscles are the main driving force, but the nerves controlling the muscles could play a factor in it, just curious what you have to say.


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## Guest

LIke Pete said, most recommend and i use a frequency of 20 Hz and a pulse duration of 200 μs, intensity i don´t remember but i go up all the way up to high pain threshold about 40 mA, application of 5 seconds, 4 seconds rest, increasing and decreasing (that´s for not suffering the stimulus in all it´s force instantaneously) of 4 seconds and a total treatment duration of 30 minutes.

Same configuration for both transcutaneous tibial and sacral stimulation.


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## PokerFace

Hey Sufferer,
I tend not to exclude anything, but I don't think there is much of a difference with stimulation of certain areas. We are used to call them nerves/muscles because of medicine but they are actually one thing together. It is possible that pulling blood back in the area does account for nerve function too. I can't really see why not. Also if a nerve can be stimulated with electiricity than it may be affected by action/blood flow too? I really see muscles/nerves work together, plus I used not to feel anything down there back in the day, and of course that has to deal with nerves as well. I may buy one of these too, but I don't think that muscle move and nerve stimulation differ that much


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## CalmWaters

Sufferer, I set mine to 200 microseconds, 40-50mA, and 70Hz because I read that a higher frequency and shorter wavelength increases efficacy.


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## Jonasbonus2

I wonder if theres any product that can naturally tighten muscles or nerves and maybe that could be used to reverse the affects of the IAS damage? I know for me, the problem was caused by overly massaging and probably relaxing the internal anal sphincter too much, but if theres a method or product that can unrelax it so to speak than maybe we can figure something out.


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## CalmWaters

If the IAS is damaged, surgery must be performed to fix it.


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## Jonasbonus2

Pelvic MRI, negative. Colonoscopy, negative. Im getting anal Manometry in a couple weeks. Biofeedback after that. SNS is a possibility but only if something abnormal is shown on manometry. Like you said, I think its a complicated issue.


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## Jonasbonus2

Yeah I think with the severity of my problem Ill definitely need SnS. Thats a few months down the road though unfortunately, if I can get it at all. I definitely think its probably the only feasible solution though. Not expecting much from biofeedback but Ill give it a shot.


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## Jonasbonus2

Calm, where are you at with nerve stimulation with Tens?Its been about 2 weeks since you last updated us. Has it continued to work for you thus far?


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## optionsforthefuture

Anyone tried this for pad placement? It should strengthen internal and external anal and urethral sphincter muscles according to this website. But they are trying to sell their products, so their probably bias.

https://www.activlifetech.com.au/electrode-placement-pf


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## CalmWaters

That sounds like complete and utter bs, why should this in any way replace a tens machine pad? It has the same pulses, electrodes, and depends on where you put it. There's no needle or anything, unlike transcutaneous tibial stimulation. But thanks for the suggestion, it's just that shoddy businesses like those really irritate me


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## CalmWaters

For week two, I've noticed I've been able to hold gas better. I still feel bubbles leaking out when I'm nervous. I'm guessing this has to keep going for a month to see any results. Moreover, I'm taking risperdal and mirtazipine for anxiolytic and antipsychotic effects. The downside is that I sleep more. Continuing exercises as well. Doing pushups, squats, sit ups, etc. And trying not to dwell on the matter.


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## optionsforthefuture

Hey calm I wasn't saying their device was any better than any other tens unit out there. It was just the electrode placement which interested me, and I only found their website looking for something a little be more environmentally friendly than the disposable self adhesive electrodes.


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## Guest

I tried the pads from a cheap TENS machine on my MIO PERISTIM (which is TENS, EMS, FES and another thing i don´t remember) and i can say that stimulation was by far more superficial, it barely went through the skin, i can´t say if it was simply because of low quality materials.

Glad that you are doing better.


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## CalmWaters

For one, I feel like I'm really getting muscle back because before, i definitely felt a bigger gap of connective tissue and skin when trying to feel relaxed. Let me clarify, there was sort of a donut shaped ring of muscle trying to close but the hole was just weaker because it was only connective tissue and skin. I feel the hole getting smaller now so it's definitely progress for me.


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## DrumminBass99

So I think I'm in on this. I've had lifelong urinary incontinence issues and didn't realize they could be related. I likely have a weak pelvic floor. I've started doing squats, will pick up some kettlebells and buy one of these machines.


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## Jonasbonus2

Drummin, its a great idea to go the SNS route if you possibly can. I cant really see much risk of harm but the reward could be a cure. Its expensive but this disease is a nightmare and anything that could change it is a positive. Also, THD Sphinkeeper looks promising if anyone here can get it. Thats another option on the table for those of us who need to get this sh** fixed.


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## DrumminBass99

What's a good method for measuring pelvic floor strength?

Before I attempt to tighten my pelvic floor I want to make sure it's actually too weak vs too tight? It *feels* weak but I want to be sure. Preferably doesn't require going to a doctor because getting a pelvic floor exam could realistically take months.


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## PokerFace

You can get kiegl8 for men on amazon... that's what I did but I got the ladies one... still working though ahah


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## DrumminBass99

I've been researching it, but I'm not sure if it has the program for measuring pelvic floor strength. And if it does and it turns out I do have a pelvic floor that's too tight, I may be out $200+ (not sure if returns are available for such a device).


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## Guest

You can still give the device other uses or resell it recovering most of it´s cost. No risk, no pain, no gain.


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## Optimistical

So I've been following these forums for years - been dealing with this for 7 years (unimaginably awful) but recently I've been given some hope 1)reading the success stories from exercise + TSNS 2)I'm getting a trial for the SNS implant in a month.

What's been weighing heavily on my mind is the risks involved in another surgery (Ive had 3 that have caused me SO many additional issues, one being a mucosal prolapse surgery - Delorme and subsequent stricturoplasty - both of which RUINED my life far beyond what I was initially experiencing) But it's okay - I was young and desperate and would do anything to resolve things. You live, you learn - as has been mentioned by many others, surgeries in this area for prolapse etc have notoriously poor prognostic outcomes (something i wish I wouldve known 5 years ago ....) Anyways.

I'm very thankful that FINALLY I've been given the opportunity to have my trial for SNS done. 3 tests precede the actual implant; so far I've had the Anal Manometry done which showed VERY bad PUSH coordination (I couldn't push properly and my sphincter wouldn't relax) The person conducting the test told me this is likely the reason for my incomplete evacuation and also incontinence (he termed it "overflow incontinence for the flatal incontinece) It felt AMAZING to finally have some validation in my neuromuscular dysfunction as I'd been trying to explain that to doctors with no avail for YEARS. It's okay though - I'm seeing that things are finally trending upwards and more discoveries are being made, which is great for anyone who's recently been afflicted with this absolutely life-devastating and debilitating condition.

Nevertheless, after reading Mariano's success with exercise + SNS and now CalmWaters and I think one more individual, I'm starting to wonder if I'm jumping in too quickly and should try the TSNS first. I feel SO lucky and fortunate to be getting the trial and possibly the implant, but the success rate from the woman (*anmegrl)* who orginally posted about getting SNS (also had a push problem) had an 85% improvement with the trial, but 60-70% with the implant -> http://www.ibs group.org/forums/forum/98-leaky-gas-lg-incontinence-odor/ This wasn't in isolation either, from what I gather. She had this improvement with the device + Atarax and I beleive dietary modification.

After reading Pete99's post about the young woman with idiopathic flatal incontinence, I wonder if PTNS is a better option since she had 60% improvement after the intial 12 rounds of treatment with sustained improvement at 3 and 6 months. The study did not say she went in for maintenance treatments. Perhaps PTNS + exercises + at home TSNS would yield even greater results without surgical troubles. I've been thinking about this a lot recently.

I originally bought the Neurotrac TENS device to try stimulation, but the one I ordered doesn't seem to let me configure properly so I am trying to return it.Maybe I just don't understand how to configure it. This one was around $200. Ive been looking into getting the Kegel8 but it's a pretty penny ($400) and I think PTNS would cost around $1200-$1500 out of pocket.

I guess I'm just in limbo and confused as to what to do. I have a few weeks before my trial, so I was thinking i could buy the Kegel8 to see the results, get my trial, see the results. Then do the Kegel8 until a scheduled surgery date.

What do you guys think - should I just wait for my trial and see what it's like before shelling out $400 on a kegel device, or should I try to be conservative and do the TSNS and possibly PTNS?

Appreciate any input - thanks guys!!!


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## Optimistical

here are the links to *anmegrl - *http://www.ibsgroup.org/forums/topic/151271-self-diagnosis-of-odor-source-wo-use-of-a-third-party/

and the study for PTNS and idiopathetic flatal incontinence - https://search.proquest.com/openview/c9cbc84962453e9f2155dd630b41bc20/1?pq-origsite=gscholar&cbl=31377


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## Jonasbonus2

Opti, glad to hear youve found some kind of hope again. If I were you, Id take the SNS trial anyway as it will probably be more affective than TENS. If you combine SNS with excercises, then you will probably be 90-95% better. TENS with excercises, maybe 80-85% better. Keep us updated on your progress.


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## Jonasbonus2

40% who have gotten SNS do achieve perfect continence, so its not out of the realm of possibility to say that it could be a cure for some. But youre absolutely right, thats an optimistic case scenario. Definitely take SNS if at all possible. It seems like its one of the best options for a very difficult to deal with condition.


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## Guest

My "success" is only with exercises and of course with elimination of every food that gives me problems, even the minors one, i started doing transcutaneous tibial and sacral nerve stimulation just to "overkill" the problem, with the exercises i have an excellent tone and functions but the stimulation makes them a little more tighter.

Prior to exercises i was able to stick a finger just with water as a lubricant, no problems, post exercises i have to lubricate with the gel that i also use for the stimulation pads and still i have to be careful otherwise is painful, abysmal difference right? Also the tight area is much longer, in finger measures before exercises was just one phalanx, post exercises 2 phalanx, another massive difference. With the addition of the stimulation is even harder to stick a finger. Also the feces no longer reach the final part of the anus, i almost can´t touch them even when rectum is full.

In Amazon there is a NeuroTrac that is only TENS, my device and others used for incontinence are also EMS so you should check if your model is also EMS, i think.

I can´t advice about what road you need to walk, only you can choose it, our health and personal situations are all incredibly different.


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## Optimistical

Thanks so much for the feedback guys!!! I feel much more confident in proceeding with the treatment.

I tried the exercises pokerface listed for 4 weeks straight (tried twice) with absolutely no improvement - then major life event - then stopped. It's hard to stay consistent and it's easy to get discouraged with the exercises, but I'm definitely glad that they've worked for some people. I was hoping that perhaps combined with the TENS it might be better, but it looks like it's just an added bonus for Mariano's strengthening.

And yes, everyone is definitely different in terms of what will or will not work. I'm hopeful for everyone. And ya, I think that if we have the opportunity to try something that's been shown as highly effective as SNS (compared to other treatment modalities) it would be foolish not to give it a try. Hopefully there will be some insight for you JonasBonus on your manometry and you'll get the trial as well.

Pete99, my symptoms are pretty much the same as most of what people listed here, particularly this thread. Both passive and conscious incontinence of flatus and also incomplete evacuation - I am in and out of the washroom every morning for 5 hours successively emptying my bowel. Ive tried it all - candida diet, dietary modifications, charcoal, bismuth, chlorophyll, etc, etc etc. Nothing helped. Surgery made my symptoms WAYYYYYYYYYYYYYY worse though. Before it was mild, now it's really bad.

I have been trying to understand for years how a 20year old developed a mucosal prolapse - but with the manometry done, the guy explained how I had to exert EXTREME intrabdominal pressure to override the paradoxical contraction of my external sphincter when trying to defecate. This likely weakened the pelvic floor making me susceptible to prolapse. Prolapse is most likely not the cause of our problem, but the result of the neurological issue at hand.

Thats good to know the the Neurotrac TENS is one of the best TENS out there - this is the one I bought :https://www.stressnomore.co.uk/neurotrac-tens-unit-9772.html

It's originally designed for pain, but it has 3 customizable programs. However, it only lets me adjust the mA on both sides (up to 6) I'm not sure how to adjust the Hz or uS. How did you program yours?

I will definitely keep everyone posted. Thanks again for giving me some encouragement with SNS. I'll be praying everyday for excellent results. I definitely think that SNS + stronger pelvic floor will yield great results.

Something I've been wondering is - if I have the implant, is using a TENS contraindicated with that (aka will I have no use for it at that point?) If so I should probably just return it.

Thanks again


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## PokerFace

Optimistical, where are you from? There is a kegel 8 for sale on amazon U.K. That should be around 220 American dollars


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## Optimistical

Hi pokerface - I'm in Canada. I bought mine from a North American vendor b/c they had express shipping.

As for Kegel8, The UK sites wont ship for a month or so (unless I want to pay an extra $200, which I might as well just get the one from North America and get the Kegel8 in a day's time) Also Im not even sure if amazon.co.uk will ship this particular product to Canada. Either way, shipping will take waaaay too long. Appreciate the recommendation, though


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## Guest

Oh, i was wrong, for sacral and tibial stimulation TENS is the right one, EMS is for direct action on the muscles... even so i´m having effects with EMS program but i will switch to a TENS program.


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## Guest

Yesterday before bed i used sacral stimulation with one of the tens programs, the configuration was similar to the one of Petes, today my back hurts like $$$$$$ing hell. I´ll stick with EMS.


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## DrumminBass99

Pete.99 said:


> Tight muscle doesn't equal strong muscle. In fact, in most cases pelvic floor weakness comes from muscles being too tight, not too saggy. Especially in young people.
> In worst case scenario electrical stimulation will do nothing for you and for sure it won't make your symptoms worse, so you don't risk anything.
> Give up measuring your pelvic floor tonicity. It's pointless. If you have gas/odour issues your muscles are weak. But, If you really want to know how your pelvic floor muscles function go for a biofeedback session to physiotherapist. And do anal manometry.
> 
> If you want good and relatively cheap device for transcutaneous sacral area stimulation and TPTNS, I recommend you this device. I'm using it myself.
> It also has EMS programs, so if you want to work on your EAS squeeze pressure, you just need to buy anal electrode.
> 
> https://www.tenscare.co.uk/sport-therapy/sports-tens-2


Ah I see, I misunderstood. I managed to get a cheap Kegel8 V from ebay so I can report on that soon.

I will say this: Going down the rabbit hole of learning about pelvic floor hypertonia did help me understand the link between anxiety and pelvic floor dysfunction, and why I likely have this problem.

A lifetime pf experiencing physical symptoms of anxiety (constant tensing of stomach, holding breath constantly, etc) likely did a tony of damage to my pelvic floor. I can already say that fixing those habits has helped me with pelvic inflammation.


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## Guest

i don´t know what i read yesterday but now i realize that the configuration is not like the one you said Pete, still i shouldn´t have any pain, in this page is, program 8. https://www.efisioterapia.net/tienda/mio_peristim-p-1827.html

90Hz, 120µs, and at 50 mA.

When i go tibial nerve i feel it more in the little toes and with more intensity in the big ones. I´m positive that i got more effect with EMS but the configuration of TENS was not optimal.


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## PokerFace

You guys stop this kindergarden thing going on. We're like each other's family. Everyone is free to express their own opinion and we should all respect it. Do you guys really want bullying in here too?


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## Guest

In my case i found out that feces no longer reach the lower canal anus, i can barely touch them with the tip of the finger even when the rectum is full so that´s another thing that the exercises changed, before them the feces were at just about 3 or 2 cm of the outside world. In my case, and i´m guessing in many others, is not normal to feces to advance that much so is a good indication if a treatment is starting to work.

I´m the only one doing bicycle here? I´m convinced that was that what boosted my results with the exercises of Pokerface.


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## Optimistical

Mariano's results are so inspiring, it's crazy. But for me, I saw no improvement with Pokerfacer's exercises over the course of 4 weeks of doing almost everyday (1 day off each week) so I guess I'm left confused as to what will or will not work.

Anmegrl's final result ( http://www.ibsgroup....-a-third-party/) that she posted was 60-70 % improvement with SNS (interstim implant) and that was the improvement she got WITH using Atarax. She said that Atarax gave her about a 50% improvement on its own, so that would suggest SNS only added 20-30% improvement on top of that. I've tried to message her but she has not been active on this forum since 2015. Perhaps after tweaking the settings, she acheived a much greater outcome and thus stopped coming on here. I don't know why she suddenly stopped providing updates.

The study that Pete shared (https://search.proqu...holar&cbl=31377) showed that a young women with flatus incontinence showed 60% improvement with the 12 treatments of Percuntaneous Tibial Nerve Stimulation in office; her improvement remained consistent at 3months and 6-months post-treatment. She was not on Atarax or any meds as far as the abstract indicates. So her results sound more favourable than anmegrl's since it was 60% without meds.

But everyone is different.

The thing is PTNS will be an out-of-pocket fee for me whereas SNS implant is covered. PTNS won't be extremely expensive (unless maintenance is required) 12 sessions is around $1500 I believe, something like that. It's just ... I've already wasted so much money dealing with this issue, and I don't really want to waste any more if there's a better option out there.

It's hard to know...I wish there were more cases of people getting the implant posted here...But what can you do.

I think I'm going to get the Kegel 8 Ultra 20 for women...(i'm a woman btw lol) That way I can probably have other uses for it in the event I do get the SNS. I contacted Medtronic and they said that TENS devices are not contraindicated with SNS implant so long as the stimulation is not done near the implant/lead wire. So it's possible to use it for muscle strengthening, etc in the event I get the implant.

I think for anyone here that can't afford the SNS implant...Invest in a good TENS device and also get the 12-week treatment of PTNS which will be around 1500 dollars..Then just do maintenance with the machine. Probably the lowest-cost, highest-outcome resolution.


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## PokerFace

Hey optimistical when you get the kiegel8 make sure to share how much you score with your squeeze. I scored 3 myself which was very sad lol


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## Guest

Optimistical, i will forever insist in the influence of mountain bike on my results, i don´t know if you read this study but still i will put it again for new readers, resting pressure, squeeze pressure and volume of sphincter values are much higher in professional bikers. We don´t need to go pro, just do enough bicycle to recover normal functionality. The study says it´s because vibration but i don´t think so, when you do bycicle you realize how your gluteous and other muscles related to pelvic floor start to work.

https://www.ncbi.nlm.nih.gov/pubmed/17427020


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## DrumminBass99

Has anyone else outside of Anmegrl tried detecting leaky gas with an automatic air purifier? Just bought one for this purpose.


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## Optimistical

MarianoZab said:


> Optimistical, i will forever insist in the influence of mountain bike on my results, i don´t know if you read this study but still i will put it again for new readers, resting pressure, squeeze pressure and volume of sphincter values are much higher in professional bikers. We don´t need to go pro, just do enough bicycle to recover normal functionality. The study says it´s because vibration but i don´t think so, when you do bycicle you realize how your gluteous and other muscles related to pelvic floor start to work.
> 
> https://www.ncbi.nlm.nih.gov/pubmed/17427020


I can understand that the mountain biking seems to be instrumental in your progress...Right now it's winter where I'm from...Not sure if I can mountain bike...

Is there an exercise machine that mimics mountain biking? Like a "spinning class" or the exercise bike?

Also, are you planning to simply forego the SNS implant now that you've had this kind of progress? (I read that you now have insurance coverage)

As for mountain biking, what's a good low-cost mountain bike?


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## Optimistical

DrumminBass99 said:


> Has anyone else outside of Anmegrl tried detecting leaky gas with an automatic air purifier? Just bought one for this purpose.


I haven't tried that yet, but I think I should do it for my SNS trial

What one did you buy? Is it expensive? Has it been working for you? thanks


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## Optimistical

PokerFace said:


> Hey optimistical when you get the kiegel8 make sure to share how much you score with your squeeze. I scored 3 myself which was very sad lol


IPokerface, f I get the Kegel8 I will for sure let you know

Btw - just out of curiousity, I was wondering if you were planning on getting PTNS done? It's non-surgical and not too expensive and has been shown to drastically improve flatal incontinence


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## Candide

MarianoZab said:


> Optimistical, i will forever insist in the influence of mountain bike on my results, i don´t know if you read this study but still i will put it again for new readers, resting pressure, squeeze pressure and volume of sphincter values are much higher in professional bikers. We don´t need to go pro, just do enough bicycle to recover normal functionality. The study says it´s because vibration but i don´t think so, when you do bycicle you realize how your gluteous and other muscles related to pelvic floor start to work.
> 
> https://www.ncbi.nlm.nih.gov/pubmed/17427020


https://link.springer.com/article/10.1007%2Fs00508-006-0741-8

The full article costs 42.29 EUR, a shame. If anyone is ever willing to pay the price, please share it with us in the resources thread. It would be greatly appreciated! Maybe I'll buy it myself one day.

Mariano, I've been out of the loop after coming back here. I've read your condition has been improving, which is great! How long have you been cycling now?


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## Guest

Optimiscal, i tried an elliptical trainer, it does something but not even close to real mountain biking, i don´t know about a proper replacement for that and i don´t think there is, mountain biking is a unique activity, one minute you are climbing with your eyes coming out of your sockets pedaling seated, standing, etc, and the other you are going down recovering and having a rush of adrenaline, endorphines, etc. You can´t have that with any indoor exercise. Remember that everything is part of a system, i think that the exercises of Poker "woke up" something in my body, specially the kettlebell swing which performed correctly is a brutal exercise for all the core, gluteous, etc. I don´t have any need of other treatments for now, i´m doing the transcutaneous stimulation just to attempt an overkill of the problem. My bike cost me about 600 dollars, in USA the 2018 is about 500 dollars, i don´t know in Canada. I personally wouldn´t start with anything cheaper, i really enjoy mine, awesome frame geometry, hydraulic brakes which are a dream even when they are entry level, 29 wheel size that makes it more comfortable,etc.


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## Guest

Candide, i don´t think the full article would give us much more information useful to us, the summary and conclusion shared to general public are clear and conclusive.

Yes, i´m every day better which amazes even me, but what worries me is long therm results, what will happen when the body stops improving? What will happen if i quit the exercises for any reason? Last time i stopped exercising i lasted, if my memory serves me right, like 12 days without the bad smell and gas incontinence coming back, i wanted to see how long it would take the symptoms to comeback but i was going very depressed so i resumed everything.

Been cycling for real like 2 years and some months, from 0, but real improvements started like 6 months ago, i´m gluten free a little more than a year so i´m guessing that´s related, i have BIG problems with gluten. By the way, i was thinking about what Pure.Melodrama said, i´m sure that my gluten problem didn´t caused me this stinky problem but surely made it easier for me to suffer it, and now that i quit gluten my body heals and strengthen better.


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## PokerFace

Optimistical, I haven't really thought about that. I'm doing kinda good lately and as for now my main problem is managing to stop gas from escaping when it builds up. I am prone to believe I am used to any kind of wrong movement to stop it because at some point I had this anal fissure causing me pain even with gas, so I would totally alter the correct way of squeezing. I think I had so much gas at some point my body thought it was a good idea to just let it go at all times. I also have hard time when I am somewhere closed with other people and fear of having gas built up, which of course does occur. Then if I go somewhere to intentionally release it most of the times none of it comes out. It is really insane and at his point I think my physical part of the problem is fixed (muscles) but my brain-related part still fails at doing the right thing. Also I have days I seem to work perfect and I can squeeze everything in.


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## Guest

Poker, i don´t remember if you eliminated the foods that gives you problems? I did that and now i barely fart 4 or 5 times a day and thanks to exercising i have no problem holding them in if i need to, besides the smell is much less offensive, even if i eat a lot. Have you tried bicycling for real? Probably won´t affect your fissure.


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## Candide

Mariano, the conclusion of the article states that cycling may result in anal fissures.


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## Guest

Candide, yes, may result, or may not, i think that is worth trying, besides you can easily tell if bicycling affects you negatively and stop doing it.


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## Optimistical

Makes sense Pokerface....Neuromodulation (PTNS) will possibly help with that. Or biofeedback, but most people don't see much change with it.


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## Guest

Don´t worry Pengu, indeed is very hard to keep track of the information we share, heck, in my case i even have problems with dates of events and all that, i guess depression is starting to hit me harder specially now that i no longer smell bad and i´m not gas incontinent, thinking in all the years that have passed with this ain´t easy.

Years ago i had internal hems with a minor mucosal prolapse, i fixed that with PPH surgery, didn´t solve a single symptom.

Then the doctors find out about strangulated sigmoid and internal prolapse, in one surgery i got the sigmoid removed and a rectopexy to fix the prolapse. At first i thought everything was going fine but as the weeks passed and the organism started to acomodate, the post op inflamation started to decrease, i continued with my normal diet, etc. i realized that the smell and gas incontinence didn´t improved, in fact they got a little worse as with the strangulated sigmoid gone more fresh feces could reach the anus constantly.

In resume, my smell problem and gas incontinence were not caused by the internal rectal prolapse and a lot of people here solved all types of prolapses hoping to stop the bad smell without success. But still, i think that solving the prolapse will make any other treatment, surgery, etc. easier, will give you better chances.


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## Guest

With the strangulated sigmoid, well, you can imagine, it degenerated to the point i was almost fully blocked, vomiting 6 and even more times a day, even half of glass of water made me puke, defecating just a little once every weak or more, etc. so as you can imagine it was deadly condition so for me that was a must.

About rectopexy... in my case i don´t think it was necessary, surely made things easier but i don´t think it was a must, i did it only because the strangulated sigmoid had to be fixed and my doc said that with the rectopexy the connection, recovery, and post motility would be better. I wasn´t expecting much about rectopexy, even my doctor said before hand that my problem with the smell was likely related to weakness (he always insisted on that). The other thing that he diagnosed me was pelvic descent grade iii.

I have to say, my surgeon is a fucking genius, almost everything he said happened or is happening. i didn´t believe him when he told me about weakness but months of exercises and a good diet prove him correct, again.


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