# Bowel Retraining Mayo Clinic



## Dreamcatcher32 (Nov 12, 2013)

Hi Everyone, I'm back from Mayo Clinic in Rochester, MN after doing their 2 week bowel retraining program for Pelvic Floor Dysfunction (tense pelvic floor). While I have to say it didn't 'cure' me I did not expect it to work miracles in 2 weeks time. It did help me quite a bit and I 'understand' what I am doing wrong and the steps I can take to aid myself in helping my problem. About 50% of people with constipation have PFD. So if you're struggling with constipation, be sure to insist you get this checked because most GI docs ignore it. I was diagnosed via Anorectal Manometry.

On Mayo's 2 week bowel retraining program Karen Nehring was my PT and I have no doubt she is the best in her field. She has a calming spirit, incredibly knowledge and positive attitude. She knows what she is doing inside and out and will 'mold' the program to what you need. For the first 4 days I had 3 sessions each day of biofeedback training. This is where they insert a rectal sensor and you first sit on a commode chair (toilet basically) to see how low you can get your numbers. I did really well there so we moved on to a 'regular' chair. Over the course of days I was able to 'flicker' down pretty far. So we tried standing up at that point. It was rough for me so I leaned against a wall first and that helped to get the numbers down for standing. Boy did it feel good each day to drop that pelvic floor and get those muscles relaxed!! On the last day she 'tested' my sensitivity and used a balloon to mimic a large bowel movement. She then had me use 'belly breathing' (diaphragmatic), relaxed me down and I pushed the balloon out in the CORRECT way. This is key. The CORRECT way to push out a bowel movement is pooching your stomach OUT, pretending to pee and relaxing your rectum entirely. The mistake I was making is that I was bearing down with my glutes and rectum itself. That is a no-no, as it actually 'pushes' against the poop and it won't come out as easily. Never ever ever use your glutes or rectum to push. Always relax, belly breathe, and then pooch outward.

The first two days I had done the biofeedback for a week so getting that balloon out was a breeze. The next 3 days were harder but I started to 'understand' it more. She went up to 40cc and I struggled to get that sucker out. She explained the details of my muscles and what my specific issues are and what to work on. What actually helped me the most was having my husband explain a bit further what she meant by 'belly pooching' and relaxing the rectum. He showed me what he does with his stomach and how he 'pretends' to pee when going, in order to relax all those rectal muscles.

I feel all sorts of crazy changes. I felt the most with biofeedback. I believe my anal resting tone went down but not sure. I have my good and bad days but I do notice at times my bowel movements are not as 'strained' and snake-like, they are larger and don't look like I used my rectum to push. They also 'fall out' after belly pooching if the stool is fairly soft. Urges were stronger during this treatment. I was told to not 'force' myself to go when I just have a small urge. They told me to let things 'build' for awhile and go when you absolutely have to. They say this will make the urge 'stronger.' I haven't fully tested it but I have waited a day (skipped going in the morning) and haven't found the urge to be stronger the next day.

A few more tips that they gave me for those with PFD - eat what you want and STOP taking laxatives and anything else you have in your rituals. They say these are unnecessary unless you have not had a bowel movement for 3 days or so. Slowly ween off of them if you are heavily laxative dependent. What makes a person have to 'go' is the amount of stool that sits inside your rectum and the 'stretch' it provides. One must have a relaxed pelvic floor to allow stool into the internal sphincter. This sends signals to the brain that you 'need to go!' I was basically starving myself when I got to Mayo which is 'typical.' They corrected me immediately and said, "You must stop grazing and eat 3 large meals a day." They recommend a warm caffeinated beverage in the morning as well as a large breakfast and plenty of exercise. They also enthused, "Everyone wishes they had the perfect bowel movement every single time but PFD or not - that seldom what happens." Oh! More tips. What goes in and comes out will not be of the same size/proportion. It is entirely dependent upon what you ate. Color has nothing to do with how 'old' things are but more to do with 'what' you ate. IBS or stomach pain/bloating usually does not come from constipation - it comes from stress. Though I have read even more on the subject of PFD and it appears a tense pelvic floor can cause intense stomach discomfort and pain, which is what I have. I try to 'relax' my pelvic floor after meals (sometimes using the sensor) to alleviate some of that pain.

I am ordering the biofeedback u-control device to keep 'tabs' on things down there and continue training. It's actually strangely fun after awhile, to see how low you can get your numbers... like a game.







When it comes to my bladder, I have noticed a difference. I asked her why I have 'constant' urges to pee and she explained these were not 'real' urges. They were simply my muscles relaxing and playing tricks on me. The 'real' way to know if you need to pee is by pressing on your belly. The 'pretend pee' is a great way to tell if you are relaxing your pelvic floor. It went crazy mid-week and I had urges to pee all over the place. Completely freaked me out! I went about 30 times a day. After that, it eased up. Now it is fairly manageable. I don't pee nearly as much and I think I am 'voiding' my bladder completely now. I only go pee every hour or so, which is a lot less for me.

I know there are TONS of people out there who have done this program and do nothing but call it a waste of time. That really irritates me. Firstly, you need to continue this at home (buy your own biofeedback device and they equip you with the balloon equipment) for at least 2-3 months and maybe for the rest of your life on and off. No matter if it 'cures' your constipation problem or not, you NEED to do it to relax those pelvic floor muscles. Tense muscles will screw you up in so many ways. Even my right leg is bigger than the other because of it!! So this is beneficial no matter what. It also clearly shows you the 'correct' way to poop and I highly doubt anyone out there with PFD is pooping correctly. If you have PFD or suspect you may have it, I think this bowel retraining program at Mayo Clinic is highly informative and beneficial. I get really tired of seeing people saying, "Uhhh yeah... Mayo Clinic throws around this PFD diagnosis like crazy." and then roll their eyes. Um... excuse me? My estimation is that is EXACTLY the problem you have. I also went to a Neurologist at Mayo who has seen countless people like me come in. Every answer was, "Nope... no nerve problems in the slightest. PELVIC FLOOR. We have seen too many come in here with their colons removed and they STILL can't go because of their pelvic floor. This is all from your tense pelvic floor and you will have to work on it - work on it hard and for a very long time."

Now, they did say that if you have slow transit, it makes things a bit trickier. But USUALLY they can 'fix' the slow transit by fixing the pelvic floor or helping it along. But it really is a "What came first? The chicken or the egg?" scenario. Tough to say.

The only thing I WILL say for Mayo Clinic is that I think it's a bit behind the times in ways. They don't prescribe valium suppositories or any kind of creams to 'relax' the sphincter muscles. I understand, as during training you need to learn to relax those pelvic floor muscles yourself. It is NOT easy and takes intense discipline. They also don't recommend Botox. She did also provide me with some yoga stretches (childs pose) to relax things. And I spend a good 50% of my day trying to drop my pelvic floor.

Do I know what 'lies ahead' for me in the future? No. I don't... I can't say what will happen and I can't really worry about it or let it consume me. (though it's hard) Do I think Mayo has its act together with their bowel retraining program? YES! Cure or no cure it is exactly what those with PFD require.

UPDATE 7/9/2014:

I know a lot of people with pelvic floor problems are finding this post, so I wanted to update them on my situation. I am still hard at work doing the bowel re-training program. I use the sensor as much as ever - 2x per day for 30 min and I also expel the balloon. It has made my hemorrhoids worse, so sometimes I have to take a break from the balloon. I found my own 'regular' balloons for this which is easier to expel than Mayo Clinic's balloons. I also will expel the balloon 2-3x in a row. This usually relaxes the muscles down very well.

I seem to make progress and then have serious set-backs. It is harder for me to 'expel' stool now than it was before. I'm not sure why. If the stool is soft, I usually don't have problems but diarrhea is very hard for me to get out. If things get too soft - I can be in trouble. I don't often have bowel movements in the morning anymore, which can be very frustrating. I have to do something very mentally relaxing/enjoyable and "relax down" my pelvic floor as much as possible. This can be an all-day thing. It is horribly frustrating but I realize it is good practice for my pelvic floor. Doing this after a meal can really kick-off the relaxed muscle coordination to have a BM.

I was having a rough time for a few weeks where I was only 'going' every other or 3rd day. This made the pain in my abdomen horrendous. What helped it was getting valium suppositories and relaxing my pelvic floor down in the evening after a meal. Since then, I relax down after each 'big' meal' and this requires a lot of concentration but has worked. I have also started Baclofen suppositories. I insert one rectally and then vaginally, this is most helpful in relaxing the entire pelvic floor.

I am also avoiding sitting, as I haven't mastered how to relax my pelvic floor in this position just yet. In ways, I feel like things are worse for me. Yet in other ways, they are quite a bit better. I realize I will probably be training for the rest of my life but I try to take it one day at a time. I urge ANYONE who has a tough time getting urges or expelling stool to get their pelvic floor checked. So many GI docs completely overlook it and only give you medications, which hardly work and are not getting to the root of the problem.


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## annie7 (Aug 16, 2002)

yes, these biofeedback PT's are wonderful, aren't they. so glad it helped you!


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## kc99 (Jun 7, 2007)

I realize this is sort of a digression from the main topic, but, I was just wondering, is it typical for neurologists to evaluate and/or treat PFD, when nerve damage is suspected? Or does that only happen rarely (for example, only at Mayo?) And if nerve damage were diagnosed, would that lead to any new treatment options?


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## Dreamcatcher32 (Nov 12, 2013)

kc99 said:


> I realize this is sort of a digression from the main topic, but, I was just wondering, is it typical for neurologists to evaluate and/or treat PFD, when nerve damage is suspected? Or does that only happen rarely (for example, only at Mayo?) And if nerve damage were diagnosed, would that lead to any new treatment options?


Nope, gastro's would determine if there is nerve damage or not. They do this with EMG testing, I believe? But apparently there aren't any super 'solid' tests to determine this. If biofeedback doesn't work, I guess that's when they start testing higher up for colon problems. The nuerologist says very rarely are constipation issues ever nerve-related. They are almost always pelvic floor. I was diagnosed with pudendal nerve irritation 10 years ago on my right side and the neurologist at Mayo waved this off. She said the numbers were 'a bit' over but absolutely nothing to concern myself with. She has only ever seen TRUE pudendal neuralgia a handful of times.

Honestly though, I don't think these types of problems (including PFD) are very well understood. I think some of the problem can come from mental/emotional issues, IBS-type stuff, spastic colon, hormones, colonic inertia, etc. There are probably a million things that play into it and worrying about it seems to only make a person struggle that much more. Even the 'typical' person can struggle with constipation when they go on vacation, family is over, etc. The brain plays a huge roll in bowel function.


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## kc99 (Jun 7, 2007)

Thanks, Dreamcatcher! This was an area that I didn't know a lot about, so that's all helpful info


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## AIRPLANE (Mar 15, 2004)

One problem with the 2-week biofeedback program at Mayo for a lot of people is the cost. I was told it cost around $9,000.00+ a couple of years ago. For a patient that had to fly there, pay for room and board added on, the cost would be pretty steep and not in most people's budgets. Very few insurance plans cover it. I checked all of the insurance plans offered where I work and none of them would cover biofeedback, period. The Dr. even sent a letter of medical necessity to my insurance and they still would not cover it. Otherwise I would have been willing to try it- I doubt it would have been the total answer but it sounded like it might be worth trying. Also, Mayo told me that if I could not do the program then there was nothing else they could do for me. They did not address my bloating or discuss why a previous endoscopy showed an inflamed duodenum which I think could be connected to my issues.


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## Flax (Jan 31, 2013)

Thanks for sharing!







I hope this will continue to help you.

One question: Do you have a link with information on the biofeedback device?


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## annie7 (Aug 16, 2002)

about the home biofeedback machine:

someone who went to rochester mayo for biofeedback early last year gave me this information for ordering the home biofeedback machine. i don't think she ever got around to ordering one, though. turns out mayo had misdiagnosed her. she actually had a rectal prolapse and not pfd. Airplane--you probably remember her and her thread--cactusun, on AGMD....

biofeedback machine: U-Control

Essential Control Systems

phone # 800-537-3779

i looked up their website and found this:

http://www.essentialcontrolsystems.com/

and also this phone # 888-764-3065

recently i called them at both numbers--had to leave a message--and also submitted the e mail form to them on their website. but i never heard back from them . i'm thinking of trying again...

i also found this site that has the U-Control and it says:

"USA Federal law restricts this device to sale by or on the order of a physician or any other practitioner licensed by the law of the state in which he or she practices to use or order the use of this device."

http://www.thoughttechnology.com/ucon.htm

so it sounds to me like (in the usa at least) you can only get one of these through a doctor or other health care practitioner or maybe mayo gives people a special form to use?

so yes, Dreamcatcher---how did you get yours? thanks.


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## Flax (Jan 31, 2013)

Tank you so much for sorting this out for us Annie







I doubt it is easier to get the hands on a home machine in Norway.

It will be interesting to read your answer Dreamcatcher.


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## annie7 (Aug 16, 2002)

oh thank you, Flax--you're more than welcome









i don't know if these companies ship to other countries. maybe your doctor or a motility specialist would know something about getting one of these machines in norway..


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## Dreamcatcher32 (Nov 12, 2013)

AIRPLANE said:


> One problem with the 2-week biofeedback program at Mayo for a lot of people is the cost. I was told it cost around $9,000.00+ a couple of years ago. For a patient that had to fly there, pay for room and board added on, the cost would be pretty steep and not in most people's budgets. Very few insurance plans cover it. I checked all of the insurance plans offered where I work and none of them would cover biofeedback, period. The Dr. even sent a letter of medical necessity to my insurance and they still would not cover it. Otherwise I would have been willing to try it- I doubt it would have been the total answer but it sounded like it might be worth trying. Also, Mayo told me that if I could not do the program then there was nothing else they could do for me. They did not address my bloating or discuss why a previous endoscopy showed an inflamed duodenum which I think could be connected to my issue


Nope it's not an 'answer' but for me but it is helpful for sure. I guess I didn't expect a cure! Just some help in relaxing those muscles. This program DEFINITELY aims at doing that. I understand your frustration with insurance. They said years ago this treatment was not covered but is now being covered more and more. Even my insurance covered it! Extended Stay hotel is only $64 a night and there is a shuttle to and from Mayo.

I bought my biofeedback device, and unigel pads here: http://www.lifematters.com/u_control.asp. You also need to get a special lubricant (uni-something) because others interfere with the sensor. Mayo gives you the rectal sensor to keep and the balloon equipment you'll need for the expulsion. You can easily do the biofeedback stuff at home. You're just trying to get yourself down to that A & B point when the device is turned to '1.' No matter how you cut it, relaxing the pelvic floor is going to help it all the way around. I was able to get down to a C over-time. This relaxation is what allows the poop to 'enter' the part of the rectum that sends the signal to the brain that "Hey! I gotta go!!" Poop was making it's way to my rectum like crazy after only a week of biofeedback. I didn't get more urges but I had a lot more to 'get out.'

I don't think Mayo Clinic has THEE best GI docs, to be honest. I've heard Cleveland Clinic is better. But this biofeedback program is probably as good as it gets for pelvic floor. They also told me to just take laxatives as needed but didn't address the fact that laxatives hardly work for some. Honestly the only other option for pelvic floor probs if they become too severe is an ileostomy and I guess they don't want to go there unless you're throwing up every day or having severe problems. It's a SERIOUS surgery that comes with all sorts of complications. It's interesting they didn't address your other issues. That's a bit disturbing. They didn't address my chronic abdomen bloating and pain either.

I will say again that I don't think all is well understood about pelvic floor problems. I'm sure Mayo and a lot of other places are 'missing' quite a few complex pieces to all of this. I've seen some people go through this program only to have an ileostomy months later. (one of the PT's told me I could have a temporary put in - I think they really understand the deep struggle we go through) I hope I'm not forced into that anytime soon but I know this program has helped my pelvic floor muscles and I know for a FACT I have had spontaneous bowel movements by simply focusing on the relaxation of my pelvic floor. That says something.

Another point to make is that you should take note to relax your pelvic floor through the day. Tense the muscles (all three openings) as much as you can and then release them. Feel the "drop" and try to do this in all positions. If you feel the need to pee - that's a good sign. It's not a real urge, it's a 'pretend' pee that's telling you you're pelvic floor is relaxed. That sensation will ease in time. I do this every day and it's frustrating as hell. But you'll notice once you start to 'drop' that pelvic floor, your colon will start to grumble and respond. It sees a big 'exit' sign.


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## annie7 (Aug 16, 2002)

thanks for the information, Dreamcatcher.

wishing you all the best.


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## AIRPLANE (Mar 15, 2004)

Dreamcatcher,

Glad that the program has helped- you are lucky that your insurance covered it. I did go speak to a PT there briefly and she had told me that more and more insurance companies were covering it but unfortunately none of the ones I can sign up with will cover it. I think that Mayo should wait and see if a patient's insurance covered it before recommending it and sending them away... especially if it is the only thing they are willing to address. I did ask for the SIBO breath test which they ordered. It supposedly came back negative (said I had no methane, only hydrogen which fits my symptoms) but I have since learned the test is not always reliable. I had been on a gluten free, low carb low sugar diet for several months and that may have had an impact. The test also can be impacted by recent testing procedures, like colonoscopy due to the massive clean out. I had just done the radioactive breakfast transit test and don't know if that could have made any difference. And even that test may have been misleading because I live within a 90 minute driving distance and I had to get up at 3;30 AM and leave by 4:30 AM and that alone can screw up one's evacuation. I had to be at Mayo by 6:30 AM for 3 days to track the test. But I did once get extremely better for about 2 weeks after an antibiotic for a kidney infection many years ago so I'm still suspicious of SIBO plus I think that the inflamed duodenum might be an indication of a bacterial issue. But I think that I chose the wrong Dr.- I chose one whose interest was in pelvic floor issues so shouldn't have been surprised when the young intern pushed the bowel retraining. It had been recommended several years ago where I was scheduled for it but after I got home I found my insurance wouldn't cover it so this happened to me twice. As they say, hindsight is 20-20! I have gone to local pelvic floor PTs but they didn't believe biofeedback worked and they also thought I had problems due to adhesions. They weren't able to help me though.

Also, I did try antidepressants several years ago but they weren't the answer for me. They may have helped with the pain but it did not help the bloating and made me tend more towards constipation. I also gained a lot of weight that I didn't need and I felt like a zombie, even though I was on the very lowest doses of the ones that I tried. I didn't feel that the extra weight was good for my pelvic floor. But some people do feel that they help so it might work for you.

I'm glad that you feel you are getting some good results. If I understand correctly, this has helped not only with evacuating the rectum but it also helps stuff get to the rectum in the first place? That would be good for those of us who, even if we feel like we've fully evacuated, seem to have to make sudden additional trips to the loo in a short period of time. This happens a lot to me, especially since I tend more toward the D side unless I take pain meds or Immodium and go the opposite direction too much.

I've also wondered about the balloon. If things are tight, does the balloon cause pain or soreness at first due to stretching things? Do you have to build it up to a certain size gradually over time? How many times a day do they want you to do it? Can you still do it if the rectum isn't empty or is that no longer an issue?


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## Dreamcatcher32 (Nov 12, 2013)

AIRPLANE said:


> Dreamcatcher,
> 
> Glad that the program has helped- you are lucky that your insurance covered it. I did go speak to a PT there briefly and she had told me that more and more insurance companies were covering it but unfortunately none of the ones I can sign up with will cover it. I think that Mayo should wait and see if a patient's insurance covered it before recommending it and sending them away... especially if it is the only thing they are willing to address. I did ask for the SIBO breath test which they ordered. It supposedly came back negative (said I had no methane, only hydrogen which fits my symptoms) but I have since learned the test is not always reliable. I had been on a gluten free, low carb low sugar diet for several months and that may have had an impact. The test also can be impacted by recent testing procedures, like colonoscopy due to the massive clean out. I had just done the radioactive breakfast transit test and don't know if that could have made any difference. And even that test may have been misleading because I live within a 90 minute driving distance and I had to get up at 3;30 AM and leave by 4:30 AM and that alone can screw up one's evacuation. I had to be at Mayo by 6:30 AM for 3 days to track the test. But I did once get extremely better for about 2 weeks after an antibiotic for a kidney infection many years ago so I'm still suspicious of SIBO plus I think that the inflamed duodenum might be an indication of a bacterial issue. But I think that I chose the wrong Dr.- I chose one whose interest was in pelvic floor issues so shouldn't have been surprised when the young intern pushed the bowel retraining. It had been recommended several years ago where I was scheduled for it but after I got home I found my insurance wouldn't cover it so this happened to me twice. As they say, hindsight is 20-20! I have gone to local pelvic floor PTs but they didn't believe biofeedback worked and they also thought I had problems due to adhesions. They weren't able to help me though.
> 
> ...


I think the reason they didn't do the SIBO test is because of what you stated - it's just not all that reliable. SIBO is also not that common. I also thought I probably had this after a round of antibiotics, funny enough. If it IS in fact what you have, then 'live' cultures of probiotics should help the matter. Also Kefir really helped me out, personally. Did you go to Rochester, MN in Mayo? They had me see a 'fellow' before a regular doctor and they were both quite good. They like to push off interns and fellows on people. You have to request the main doctor specifically. BUT, if they really pushed the pelvic floor then my thinking is that your main problem is this. A lot of people keep saying, "Oh Mayo won't stop saying my problem is pelvic floor!" But I trust them on this point. Did they do an anorectal manometry and were you assessed by one of the biofeedback specialists? The assessment with them told me more than the manometry test did.

So I take it the transit test your talking was the 2-3 day GI transit study test? This tests your whole gut, small bowel and colon. It has nothing to do with how much one poops. That's what I was told anyway! Not sure how it works but I guess the markers make their way through, poop or no poop. I was super nervous and hardly pooped at all but apparently my results were normal.

Yes, I definitely felt like it was making things 'get' to the rectum faster. For instance, I ate pizza buffet and 2 days later had a fantastically large bowel movement. I have real trouble with 'urges' to go but there was no holding that sucker back! Now, I tried eating pizza AGAIN after the program had stopped and got constipated by it. Now, this was different pizza and could purely be circumstance but not sure.

If you are tight, the balloon will cause soreness. At least for me it does! My muscles don't want to let anything go. You do build it up gradually over-time. It's actually easier to get out a 30cc than it is a 25cc, for instance. You have to sort of 'drop' the front of your pelvis like your peeing and then relax the back. The entire 2nd week was all balloon expulsion practice. At home, I have to do it 2x a day but I've only been doing it once.

I will say I'm surprised they didn't 'push' me to do this at home for longer or even a life-time. The biofeedback specialist (I should stop calling her a PT as she isn't really...) said to do this 2-3 months. I honestly think it's something I'll always have to 'check in' on. The pelvic floor is highly complex and basically a layer cake of muscles we can't see or get to very easily.


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## annie7 (Aug 16, 2002)

Dreamcatcher--i think you're right about the home use of the biofeedback machine. i do think it's something one has to practice with a lot and "check in" on periodically--especially for those of us with long standing pfd problems. mine started at the age of ten--withholding for two weeks every year at camp due to the filthy outhouses they had there (sadly, a lot of us girls there did this) so i've got years and years of muscle memory to unlearn and retrain.

i'm going to call that company today and see about ordering the home machine. i really would rather not have an ileostomy either---at least not until i've exhausted all other options. you're right --there are so many complications--often serious-- with an ileo.

thanks so much for the information!


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## AIRPLANE (Mar 15, 2004)

Dreamcatcher,

Lots of good info, thanks for the detailed account. Yes- I went to Mayo in Rochester, it's about a 90 minute drive for me. The test I had was the radioactive breakfast one. And I know that I had stuff sitting in my rectum (probably more than usual) due to the fact that I had to get up so early to make the drive there.. I had previously (5 years earlier) had an anal manometry and defecography test. The defecography did show a rectocele on the left side (where I feel the most symptoms) but they said it wasn't significant enough to do anything about it. They did not repeat either of these tests on the second visit. I would have liked an assessment by a PT but it wasn't offered. It would make sense to me to make that standard practice before recommending the biofeedback. I was also offered a one-week treatment for Pelvic Floor Tension Myalgia (where they use ultrasound heat- not sure what else) but my insurance wouldn't cover that either because it was still coded as biofeedback. I wish they would/could change the way they code this therapy so more insurance would cover it- like code it as muscle therapy or something. That's ultimately what turns me off so much about this, I think. Being sent away with a treatment that you later find you can only do if you are independently wealthy or you've won the lottery, in many cases. And I would think that Mayo is aware of this problem but they don't seem to mention it before sending you home. Just doesn't seem ethical, I guess.

Annie- let us know if you can get that machine. I haven't really looked for one online, maybe I will start searching to see if I come across one in case your info doesn't pan out.


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## annie7 (Aug 16, 2002)

Airplane--yes it is a shame mayo isn't more flexible in how they code all this. my biofeedback PT coded it as "muscle spasms". she said in her experience (19 years) that's what seemed to work best with these hard to please insurance companies. and thankfully it worked although my insurance did hem and haw a bit before approving it.

and yes i'll keep you posted on ordering the machine. i plan to do it today. it's a lot of money for me, being retired etc, but i think it will be worth it. like i said, i'm going to try everything and anything, exhaust all options.

i think i'll also get the SIBO test set up like one of my gastros wants me to do. although i'm not at all sure that's my problem and i know the tests aren't very accurate ( 60 % or something) . and i already know my insurance won't pay for rifaximin. still it's worth a try. do you know if those SIBO antibiotics cause yeast infections? antibiotics always give me those and once i get one it is always so hard to eradicate. thanks.


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## annie7 (Aug 16, 2002)

update--i just ordered the U-Control. first i called 1-888-255-9757 and talked to Tom because i wanted to make sure i was ordering everything i needed. and then i need the ordering online from their website.

per Tom's instructions i ordered:

the u-control home continence trainer ($334.00)

as well as the unigel electrode pads 100ct ($35.00)

and the rectal sensor ($50.00)

shipping was $33.00

Tom said they currently did not have the rectal sensors in stock so he would have to order those direct from the manufacturer who normally ships them fedex requiring a signature. signing for the sensors could definitely be a problem for me since i'm often not home so he said he would try to have them send it without a signature required so fingers crossed this works--don't want to have to sign for it and then have to chase it down with fedex. the u-control and electrodes are in stock and they don't require a signature on delivery.

not sure how long it will take to get it--i forgot to ask that.

thanks again, dreamcatcher


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## Dreamcatcher32 (Nov 12, 2013)

annie7 said:


> Dreamcatcher--i think you're right about the home use of the biofeedback machine. i do think it's something one has to practice with a lot and "check in" on periodically--especially for those of us with long standing pfd problems. mine started at the age of ten--withholding for two weeks every year at camp due to the filthy outhouses they had there (sadly, a lot of us girls there did this) so i've got years and years of muscle memory to unlearn and retrain.
> 
> i'm going to call that company today and see about ordering the home machine. i really would rather not have an ileostomy either---at least not until i've exhausted all other options. you're right --there are so many complications--often serious-- with an ileo.
> 
> thanks so much for the information!





annie7 said:


> update--i just ordered the U-Control. first i called 1-888-255-9757 and talked to Tom because i wanted to make sure i was ordering everything i needed. and then i need the ordering online from their website.
> 
> per Tom's instructions i ordered:
> 
> ...


Glad you got it Annie! Tom is very helpful. The site says you can have a year of help from a PT through their web-site. Sorry to hear the rectal sensor will take awhile. That's frustrating. You will also need the HR Lubricating Jelly packets as anything else will interfere with the sensor. Make sure to lube the ENTIRE sensor that goes into the rectum and place it so that the 'handle' of the bar is between the cheaks and not sitting cross-ways uncomfortably. I was told the sensor, once all the way in, hits all those muscles we have conscious control of. Those are the ones that need to 'open' during a bowel movement. I did it 'right' this morning and opened those suckers up - felt proud. Didn't have a 'snake' poo! lol. I hardly felt it 'drop out' too and this has been the case since the therapy (this is what you want!!). It's a very strange feeling, as I am used to feeling everything since things were clenched down there. Also, if you have incomplete bowel movements do not worry about it. It is better to have incomplete ones and NOT strain from your rectum.

You can try holding the sensor in and 'bearing down' to know if you are doing it correctly. It's not totally accurate but those numbers should drop down. Mine stay the same which is good enough for now. Need to keep working at it. I was also told you can try to relax, belly breathe and then 'pooch' the sensor out while on the toilet but it is incredibly difficult since it's rock-hard.

I have had many with ileo's tell me to 'live' with the constipation and never ever get one done. They have suffered like crazy with it. Others have told me that it's saved their lives. I guess it all depends on the 'state' we get to. I am also putting off using laxatives as much as possible so I don't burn them out. I try to eat foods to 'track' how I am doing - carrots, beets, kale, etc. If I notice I am really behind transit-wyse, only then will I take something to help.


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## Dreamcatcher32 (Nov 12, 2013)

AIRPLANE said:


> Dreamcatcher,
> 
> Lots of good info, thanks for the detailed account. Yes- I went to Mayo in Rochester, it's about a 90 minute drive for me. The test I had was the radioactive breakfast one. And I know that I had stuff sitting in my rectum (probably more than usual) due to the fact that I had to get up so early to make the drive there.. I had previously (5 years earlier) had an anal manometry and defecography test. The defecography did show a rectocele on the left side (where I feel the most symptoms) but they said it wasn't significant enough to do anything about it. They did not repeat either of these tests on the second visit. I would have liked an assessment by a PT but it wasn't offered. It would make sense to me to make that standard practice before recommending the biofeedback. I was also offered a one-week treatment for Pelvic Floor Tension Myalgia (where they use ultrasound heat- not sure what else) but my insurance wouldn't cover that either because it was still coded as biofeedback. I wish they would/could change the way they code this therapy so more insurance would cover it- like code it as muscle therapy or something. That's ultimately what turns me off so much about this, I think. Being sent away with a treatment that you later find you can only do if you are independently wealthy or you've won the lottery, in many cases. And I would think that Mayo is aware of this problem but they don't seem to mention it before sending you home. Just doesn't seem ethical, I guess.
> 
> Annie- let us know if you can get that machine. I haven't really looked for one online, maybe I will start searching to see if I come across one in case your info doesn't pan out.


I have learned you really have to take matters into your own hands at Mayo sometimes. Schedule an appiontment with a PT and have them assess you. But honestly, I can give you a lot of info you'll need - just message me. That's interesting that they offered ultrasounds heat for the myalgia. I also have this! It has gotten better since therapy. It baffles me they can do so much for the bladder but not the bowel. Prob because they have found bladder problems shorten life-spans and bowel ones generally won't. The rectocele is probably not a big problem if it was small. I have heard bad things about surgery for these.

I agree, I think the insurance situation is awful. Did they send in a letter of recommendation to your insurance company? They offered this if I needed it. Honestly I am a bit disturbed by how easily Mayo is willing to 'throw up' their hands at times. But at least they don't do what other GI docs do - simply throw laxatives and miralax at you. Their program IS designed to aid in the pelvic floor problems. If I were you, I would look into yoga (especially child's pose), sitting in a squatting position for 30 min a day and taking sitz baths, along with regular baths and practice 'dropping' that pelvic floor at all times. You can feel if it's dropped by tensing it and then relaxing. You really have to learn to be your own doctor in these situations.  Oh yeah - also look into a 'keyhole' cushion to help you drop the pelvic floor more easily when sitting.

Also - try some liquid (pills don't work) magnesium citrate but DO NOT give yourself diarrhea. Avoid it at all costs. Your muscles need to learn to manage larger stool and pushing needs to come from 'pooching' your belly only. If that doesn't work - dulcolax suppository time. (enemas won't work very well, the water 'stays inside' those who have PFD)


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## annie7 (Aug 16, 2002)

Dreamcatcher--thanks for the tips re using the U-control.  i asked Tom about the special lubricant you mentioned but he said they didn't stock anything like that and that any lubricant would work.


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## annie7 (Aug 16, 2002)

ps--good for you on your success today! congratulations! so glad it's working for you and helping so much.

no i never strain with my rectum any more. i learned years ago that straining like that doesn't help. it just locks everything up. i've been doing the belly breathing and pouching thing for quite a few years now--ever since i started reading about pfd etc here on the board. there's been a lot of helpful information posted on here.

and i use my trusty shoebox to elevate my feet







.


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## annie7 (Aug 16, 2002)

just got the e-mail notice from Tom that the U control and unigel electrodes have been shipped priority mail with delivery confirmation (love that tracking) and the rectal sensor is being shipped from the manufacturer via fedex no signature required. so that's good....


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## AIRPLANE (Mar 15, 2004)

Annie,

That's great news- though too bad the one unit is so expensive. Hope it comes with good instructions and either an email address (did I read earlier that there is help available?) or phone # for questions. It'd be a shame to get everything and end up not using it. Would be nice to go to a PT for help but none of the ones in my area seem to think that biofeedback is of any help and with my job I can't afford to take the time off anyway. I'm not sure if I'll order anything right away but will be interested to hear what you think once everything finally arrives.

About the Rifaximin. I do have the Dr. Pimentel book on SIBO, 'A New IBS Solution' which talks about it in depth. From what I understand, the two antibiotics he recommends the most (Rifaximin or Neomycin, sometimes both) don't seem to cause things like yeast infections because they stay pretty much in the GI tract and aren't absorbed like other antibiotics. The main problem seems to be- as with other antibiotics- is that the bacteria can become resistant to them so if they work, they may only work once and/or briefly so if you need treatment for SIBO again they may be useless. The mystery with SIBO seems to be figuring out how to keep it away. Like if it was caused by adhesions, for example, then the cause of the SIBO would still be there and it would likely return. If it started due to an infection or illness then maybe it'd be more effective long term. Some people take things like Erythromycin afterwards to ensure that the small intestine empties properly to avoid recurrence but the question is how long would you stay on that if it worked.


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## Dreamcatcher32 (Nov 12, 2013)

Update on this situation. I got my biofeedback device today and have it set where it should be - continuous x1 and am quite happy to see that my numbers at ultimate relaxation are a C & D. I was able to get down to a B in certain positions - laying down flat on my back and standing up with legs about a foot apart. I felt 'tummy grumbles' while using it. I also noticed very relaxed and slow low diaphragmatic or belly breathing lowered me down to those B points.

I thought my numbers had gone up since therapy but this is not the case. It also may explain why I don't get the 'constant' urge to pee all the time. Before this therapy, I had non-stop 'pretend' pees going on. I think these have gone way down. I still pee as much as ever (about every hour) and drink about 64 oz of water a day. But I'm glad to (almost) be rid of those annoying little urges that made me feel like I was going to wet myself non-stop! I was also having 'leaks' in the morning for awhile there when trying to relax down - those are gone.

I will say that one of the other biofeedback specialists said that getting down to a "C" is VERY good! After practicing with the device I do not feel 'tense' in my pelvic floor. I often feel this way and it drives me bonkers. So nice not to have that right now. Whew.


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## annie7 (Aug 16, 2002)

Airplane--thanks so much for the SIBO info! i'm allergic to neomycin. and insurance won't pay for rifaximin although there's always ordering from inhouse pharmacy i guess. . yes it is hard to treat SIBO isn't it. it keeps coming back..it seems like an ongoing life long battle. and i have reservations about taking antibiotics long term like that. think i'll discuss it with my gastro first.

the U Control does come with "free unlimited support with a biofeedback therapist"--just call or e-mail, like it says on the website. so that sounds helpful.

Dreamcatcher--so glad to hear you got your U Control and it is helping you--that's great!


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## Dreamcatcher32 (Nov 12, 2013)

annie7 said:


> Dreamcatcher--thanks for the tips re using the U-control. i asked Tom about the special lubricant you mentioned but he said they didn't stock anything like that and that any lubricant would work. sure do hope he's right about that!


Hi Annie, the lubricant can be found on amazon and it's very cheap there. Just ordered some for myself!


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## Dreamcatcher32 (Nov 12, 2013)

annie7 said:


> Airplane--thanks so much for the SIBO info! i'm allergic to neomycin. and insurance won't pay for rifaximin although there's always ordering from inhouse pharmacy i guess. . yes it is hard to treat SIBO isn't it. it keeps coming back..it seems like an ongoing life long battle. and i have reservations about taking antibiotics long term like that. think i'll discuss it with my gastro first.
> 
> the U Control does come with "free unlimited support with a biofeedback therapist"--just call or e-mail, like it says on the website. so that sounds helpful.
> 
> Dreamcatcher--so glad to hear you got your U Control and it is helping you--that's great!


Wondering if you got your device yet and how it is going for you? Had a great #2 this morning and I attribute it to using the biofeedback device yesterday! Though I did end up 'straining' wrong on the toilet. I have yet to master the belly breathing and pooching. My toilet is quite low with my squatty potty. Glad to hear you've mastered this and kept it up! I have a good example then. It's a real struggle for me.


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## annie7 (Aug 16, 2002)

no i didn't get it get yet.i imagine it'll be a few days or so--maybe a week. i just ordered it yesterday.

yes i saw that lubricant on amazon too. i'm just going to use whatever lubricant is recommended in the manufacturer's instructions that come with the U control and also with the rectal sensor. if they say to order a special one then i will but Tom said that wasn't necessary. thanks.









glad you had a good bm today!


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## annie7 (Aug 16, 2002)

got my U Control and the rectal sensor in the mail/fedex today. and thanks to my wonderful husband for going out in the snow to get me the battery for it--lol---i was able to try it. it's a neat little device! thanks, dreamcatcher, for telling us about it and where to get it.

at first i was a bit tight but then i was able to get the sensor down to a B and sometimes even an A , both lying down and sitting on the potty. so that was encouraging. i finished up with biofeedback in june 2013 (well my surgery kind of interrupted it) and went back to be checked and finaled out by the PT the end of august. back then i had the sensor down to a 2 ----their biofeedback system was a little different than this one. so i guess i haven't backslid which is good. i do my stretches and squeeze and release exercises daily. and the drop downs.

i'm glad i have the U Control to practice with to keep in shape especially since i have another anorectal manometry scheduled later on. i'm going to "study" for the test--lol... i really failed the balloon part the first time i took the test. i couldn't even feel it even when inflated to the max. and i couldn't push it out. in addition of having pfd the test said i also had "significant rectal hyposensitivity" and megarectum. i'm not sure biofeedback and PT helps much with all this although of course it helps with the muscle tightness. i plan to ask the gastro more about all that when i see him in march.


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## annie7 (Aug 16, 2002)

Dreamcatcher--forgot to ask---what threshold value do you set the U Control at? thanks.


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## Dreamcatcher32 (Nov 12, 2013)

Annie, sounds like you're doing good on the sensor! Try to work on getting down to an A or B at the '1' level. That is the 'best' place to get down to! The squeeze releases are really helpful. I have trouble remembering to 'drop down' my pelvic floor throughout the day. But I just have to remember it constantly! I was told we want to 'live at A."

Sorry to hear you couldn't feel the balloon or push it out very well. When they do the anorectal manometry they put the ballon up rather high, so it's not the easiest to feel. I am VERY sensitive back there so I felt absolutely everything and I also had an extreme 'spasm' - which the docs couldn't explain. It was horrid pain! I also shot the balloon out way too fast apparently. It's funny that they say the balloon is supposed to make you feel like you have to poop. I didn't find that to be the case AT ALL when I started. I have an easier time with it practicing at home, though. Once it's in there, I get the sensation where I want to 'get it out!!' Of course the biofeedback therapists put the balloon lower down towards your anal area - more nerves.

My squeeze pressures were out of this world - which shows why their bowel retraining program is pretty much perfect for me. I've learned from it how to properly get that balloon out. Though it still 'pops' out which is annoying - I am supposed to 'glide' it out. Sounds like you need more training with that balloon to regain some 'sensitivity' and feeling back there. I would suggest manual stimulation - using a gloved finger each day. I also heard that one can use anal beads (I know its doesn't sound like the most fun experience) to regain sensitivity.

I wish you luck on your anorectal manometry! It's such a super easy test, I'm sure it'll go great.


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## annie7 (Aug 16, 2002)

thanks!


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## ibsnow (Nov 25, 2013)

Hi. I was wondering what is the correct technique for a weak pelvic floor muscle. I know this sounds selly but I rather have a strong tense pelvic floor muscle....

I am using glycerin suppositories to avoid any STRAINING AT ALL ! I just sit there and let it happen and for 30 seconds each time while squatting on the floor, this makes a compelte bowel movement.

Ive gone this extreme because I think my case is pretty advanced in terms of weak pelvic floor very close to a colostomy.

I tried the pushing belly out this is still straining in my opinion (or maybe its not but I wont risk that as it also puts pressure on the PFD).

By the way, why do we have to have ileostomy? I've heard colostomies would be good too...and they are rather more manageable (from the people ive talked to) than ileostomies.

Do you have any advice for very weak pelvic floor(with internal prolapse maybe)? Is the technique always the same?


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## annie7 (Aug 16, 2002)

hi--i'm a little confused when you say that you have a weak pelvic floor and that you also have a tense pelvic floor--do you mean you have both at the same time?

have you tried biofeedback and physical therapy? that can help with both conditions. if your pelvic floor muscles are too weak to hold stool in and you have incontinence, your therapist will train you in strengthening your muscles as well as in how to coordinate them to get stool out when you're on the toilet. if your pelvic floor muscles are too tight and/or they don't coordinate properly to allow for easy passage of stool, then your therapist will help you learn to relax those muscles and better coordinate them to push out stool. this kind of therapy helps a lot of people.

have you been tested to see if you have an internal prolapse? if you do, your doctor can tell you how to best manage it.

about colostomies and ileostomies--from what i've read, they can perform a colostomy as long as your colon is working ok--ie no slow transit or colonic inertia--and your problems are just with the pelvic floor---when it is not working properly and fails to respond to treatment like biofeedback etc. if you have colonic inertia and the colon is not working properly and neither is the pelvic floor (or there are other severe outlet problems) then they can do an ileostomy--bypassing that problematic colon.

and yes i've heard the same thing--that colostomies are a bit easier to manage than an ileo.

as far as the best technique for dealing with pelvic floor dysfunction and moving stool out while on the toilet--Dreamcatcher explained it well. so does this video on how to have a bowel movement without straining:






also many people find that elevating the feet while sitting on the toilet by using a step stool or squatty potty etc helps a lot. i use a shoe box. it helps straighten out the anorectal angle and allows for a more complete evacuation.

good luck to you...wishing you all the best.


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## NJMA (May 28, 2013)

hello,

I also wrote to you on Inspire. I lost my device from the Mayo clinic pelvic floor biofeedback. It sounds to me like you had better therapist than I did. Anyway, I would like to buy the device again but can't find the telephone number at the mayo clinic for the pelvic floor biofeedback to call and ask them to order another. I don't know the name of the company either. Do you happen to know the number at Mayo or the company that makes the device and the name of the device?

I never thought bout valium suppositories to relax but it does make sense to me. I am willing togive it a try again.

thanks (maxalex on inspire and NJMA here!!!!


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## rewinj (Apr 19, 2012)

Bumping this thread for all the great info it contains.


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