Confused about Biofeedback Therapy and Test Results!
#334147 - 08/06/08 06:41 PM
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Hi all! I haven't posted in some time. I'd been going through A TON of GI issues, which I presume were primarily stress induced by an incredibly awful job I had. I got so sick I ended up quitting the job. My issues cleared up about 95% within a week! Luckily, I got a new job which is working out wonderfully 
However, during my bout of almost contanst diarrhea, stomach discomfort, bloating, abstention, the whole nine yards...nothing was working. I'd been on Lotronex for about 3 months and IT even stopped having an effect on me.
About 3 weeks ago, my GI had me do a procedure called a manectomy where they inserted a catheter into my rectum. The catheter had a bunch of electronic sensors in it and there was a balloon at the end which was inflated and deflated periodically. The doctor had me do a series of exercises (squeezing, bearing down, etc) and measured my colonic muscle contractions, pressures and whatnot throughout. She also measured my body's responses to the balloon increasing in size and had me poop the balloon. Interestingly, I was unable to poop it until they made it extremely small. I thought that was odd.
The test results indicate I have something called pelvic floor dissynergia - translation, my rectum does not relax as it is supposed to when I try to make a poo-poo. This causes me to retain poo. Hence, some sort of weird constipation. This would also support the fact I was unable to poop the balloon until it was reduced to a very small size.
To add to the conundrum, I apparently can't feel the retained poo (hence I never feel constipated) because the tests also showed that I have a delayed sensorial perception. My colon doesn't feel poo until about double the amount a normal person can sense has built up. My doctor says this is why I have diarrhea. The only thing that can get around the built up poop is watery stuff.
Wow. Right? For years I have had diarrhea, now I'm being told I have a chronic constipation issue? Even though I suffer from loose stools all the time and poop every single day, multiple times a day? I don't get it!
The doctor wants me to try biofeedback therapy. I am really wary and unsure in this diagnosis and treatment. I guess I'm just super dependent on meds. They are the only thing that ever seem to help. He wants me to stop taking Lotronex when I begin the therapy and I'm terrified as I am just now starting to feel better after months of suffering.
Can anyone clue me in on what I am experiencing? Anyone gone through this or have any thoughts? I am really confused.
An afterthought - he did say that this is just one piece of the puzzle. I have something physically abnormal to pin some of my problems on, however, there are other inexplicable causes, such as dietary effects on my gut. Therefore, even if the therapy works, I'm still going to have some residual IBS issues. Gotta stick to my diet, which honestly, I wouldn't abandon for the world!
Thanks!!
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This has to be short, unfortunately, because I'm on my way to work, but I have pelvic floor dysfunction too. In my case, it's caused by Interstitial Cystitis, which is a bladder problem. But the same muscles support both the bladder and your rectum.
I'm currently going through physical therapy for this. My PT does at times use biofeedback machines. The PT has helped my bladder, and as a pleasant byproduct has also helped me relax my colon enough to poop a little better. I still have a long way to go, but believe me when I tell you it is helping.
I'm by no means an expert, but my thought is this - if your problem (or part of your problem) is muscular, no medication in the world is going to help that. You need to retrain your muscles to relax and tighten when appropriate.
I would try the therapy suggested by your doctor. It certainly can't hurt you, and it sounds like it could be very beneficial.
Most therapists work around insurance issues. If your insurance won't cover therapy, or will only cover a few sessions, explain this to the therapist. Most of the work you will be doing on your own at home anyway, they're just there to teach you how to do it.
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IBS-C
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Hi Amanda:
I see a physical therapist for pelvic floor dysfunction as well. I had some tests done by a colon rectal doc and he diagnosed me with non-relaxing anal sphincter. I never did the biofeedback, however, with the physical therapy exercises and changing my diet, I have had great success. I agree with Fen. If this is muscular, you really need a PT. With that said, a good pelvic floor PT is hard to come by. The first one I went to several times really did not have a clue. I then began my own search for someone who knew what she was doing. A womens clinic usually has a specialist in pelvic floor dysfunction. I have one who is unbelievable....I have learned more from her than any GI doc around. Physical therapy is not an overnite fix, but it can work. If you like you can e-mail me at sdmielke@yahoo.com and I would be happy to share what I have learned over the past 8 months. Most importantly, make sure your physical therapist understands your problem and has been trained in this area.
Best of luck.
Sharon
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Thanks to you both for your input!
I am curious about the physical therapy...more like skeptical really.
I guess it is because I have always believed my gut dysfunction is something that operates without my voluntary input or control. It's like any other system in our bodies (i.e. nervous system, cardiovascular, etc) where we don't have the ability to regulate its activity. In essence, I can't control my pooper muscles any more than I can control whether my heart beats.
So, with that in mind, how is it possible to "retrain" my muscles if what they are doing is involuntary to begin with? It's just baffling and seems impossible to me. Again, being totally skeptical here I know. I just find it so hard to believe it's possible to do so.
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Hi Amanda,
Yes, some of the muscles are involuntary, however, if your doc is saying you are not relaxing the muscles, he probably means the external anal sphincter which is a voluntary muscle which can be retrained. There is an internal anal sphincter which is involuntary. I think you will find through physical therapy (which can take several months) when you start learning to relax the muscles your bowel movements will get better which in turn will help the IBS symptoms. Do a google search on "pelvic floor dysfunction" and "constipation and pelvic floor dysfunction". You will be surprised with all of the issues a person can have due to problems with the pelvic floor.
Be thankful your doc had the insight to recommend PT....many don't and try to fix it with meds. The only thing that I would question my doc about would be getting off the meds right away. PT is not an overnite fix....it takes some work and dedication.
Have you tried the hypno CDs yet??? I felt they really went hand in hand with the physical therapy.
Believe me, I am a huge skeptic and I thought I was just dealing with bowel/abdominal issues when I found out how much the pelvic floor comes into play. If you could find a specialist in your area, maybe you could just go in for a consult and they could explain how it all works together.
Best of luck Amanda.
Sharon
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What my PT has shown me is that my pelvic floor muscles tense up in response to pain. Having both bowel and bladder problems, my pelvic region is nearly always in pain, and thus nearly always tensed up. I walked around for years that way without even realizing it. I think a lot of it too is from being bloated - I was subconsciously trying to "suck it in" all of the time. Now what we're working on is a conscious relaxing of those muscles. She uses biofeedback machines to show me what muscles are actually engaged when I feel as though I'm relaxed, when I do a Kegel, etc.
My PT is also a big advocate in hypnotherapy, meditation, yoga, anything that will help me relax because tension is such a big part of the problem. I think I'm going to finally break down and buy the IBS hypnotherapy CD's...
I agree with sharond - a lot of PT's without specialized training will simply have you do Kegel exercises to "strengthen" the area, but without a full understanding/visualization of the muscles, all you will be doing is making the region more tense.
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IBS-C
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Hi there!
Since it's been quite some time since you posted this I'm not sure if you'll see this or if you'll find it helpful as I don't know how far you've come with the biofeedback et.c. I'd email you if I had your address but I don't so I'll try posting here.
I underwent biofeedback training for the pelvic floor last fall to see if it would help me regain control of my sphincter. In my case it helped some but not enough, but anyway. I have nerve damage because of my childhood paralysis condition. They found that I had too high a muscle tone when I was supposed to be relaxing but that I couldn't increase the tone enough voluntarily to hold BM in. So our problems probably have some differences and some similarities.
I'm curious to see how the biofeedback is working out for you. I also want to tell you there is a procedure that can be tried for this condition if biofeedback doesn't help. This is something they suggested I'd try but in the end the surgeon and I decided together that it would probably not have helped enough for me since my problem was originally in the spinal cord rather than in the peripheral nerves. You may remember my writing about this procedure before. What they do is they put in electrodes through the skin in your back and put them close to one of the nerve roots in the sacrum. Then they connect the electrodes to a device you carry around you waist. The electrodes will then stimulate the nerve root and may help correct different disorders in the pelvic floor, such as incontinence or the type of problem you have. They don't know exactly how it works, just that it does work sometimes. There are a lot of things going on down there with different types of interactions between nerves and muscles. You'd be asked to try this for maybe 1-3 weeks and then evaluate if it has helped. If it hasn't they will simply remove the electrodes and if it did help they will connect the electrodes (they might have to change electrodes if they didn't put permanent ones in at the test phase) to a pacemaker that they put under the skin at the back of the hip. It is a minor surgery done either when you're awake or with you sleeping, but in either way you should be able to leave the hospital the next day at the latest. You'd have to be careful not to bend your back too much the first few months though since the electrodes need some time to "stick". After that you'd be able to do most things apart from extreme back bends and things like that. Anyway, just thought I'd mention it so you can bring it up with your doctor if you're interested in it. But of course I hope biofeedback will help for you.
/Ulrika
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