# My story - hope it helps someone



## jea7065 (May 18, 2015)

Hello. I've learned so much more than I had known previously in just the past year, a lot due to the folks who share their experiences on this board. I don't
believe I have IBS-C but I don't know of anywhere else that I can discuss these symptoms. I was diagnosed with IBS back in 1991 but I believe it was a misdiagnosis. My main issue is the feeling of an incomplete evacuation. I feel so much for the folks on here who suffer in so much pain, to
the point where I have been hesitating to write anything as my issue pales in comparison.

My normal routine for the past 20+ years was to have two BMs in the AM. I would never feel done after the first one but would feel pretty much done after the second BM. After about 30 minutes, any feeling of fullness would just go away. I always found it a bit strange but was just grateful to feel "free"

Not sure what changed but about a year ago the routine didn't work anymore. I started feeling "not free" after the second BM. So, I just increased my fiber,
thinking that I had been slipping on the dosage or that my body just needed more. Also at this time, I started to have pain in my tailbone. it would only hurt
after I got up from sitting and the pain would then dissipate. I figured there was some connection so I went to my family physician. She ordered an MRI. All
normal. Regarding the bowel habit change, she recommended I see a specialist. Below are the steps I've taken so far.

1) had a colonoscopy which was normal. for the tailbone pain, the colorectal surgeon who did the test said it could be a cyst forming on the tailbone
2) Saw a GI doctor who prescribed Align, which did nothing
3) then he ordered an anal manometry test, which was normal.
4) I had a defocogram which didn't really show any issues.
5) Also tried the foot stool thing which helped the first couple of times but then didn't seem to help anymore
6) After finding this site and googling tail bone pain and incomplete evacuation, I came across pelvic floor dysfunction. This sounded like what I had.
7) Went and had 3 months of PFD therapy, including BioFeedback. Both therapists I saw said my symptoms sound like PFD but the stretches and the therapy they gave me really didn't change anything. Also, the biofeedback showed that I apparently had Paradoxical puborectalis contraction
8) After the therapy, I saw a different colorectal suregon, associated with the PFD therapists office. He prescribed diltiazem cream after doing an exam and another anal manometry test. He had said the one I got before was done very poorly. This one revealed that I had a very high resting rate. Not sure what that means still
9) The ditiazem cream did nothing. After this, he prescribed valium suppositories. These just released a ton of gas but didn't help with the issue at hand
10) After this, the CRS suggested a botox injection to the internal sphincter for the Paradoxical puborectalis contraction. I eventually got that done but really
saw no results.
11) After the botox, I decided to finally reduce my fiber intake and I saw some improvement. Seems as though taking more fiber just made the problem worse, as it was just forcing more bowel movements to happen with muscles that really don't work as they are supposed to.
12) As it stands today, I have good days and OK days. A lot of times the reason I don't feel "empty" turns out to be gas. It sometimes takes hours to pass gas
which was the cause of the full feeling. It's really strange. I stretch twice a day and am trying to avoid foods that cause gas in the first place.
13) Lastly, the CRS recommended doing Kegal exercises in order to fatigue the internal sphincter and help it not contract at the wrong times. However, the PFD therapist specifically said to avoid Kegals if you have PFD so I'm not sure who to listen to.

Thanks for reading if you got this far.


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## jaumeb (Sep 1, 2014)

Impressive list of things that have not work plus some contradictory advice. Thanks for sharing. Sorry you've been through all this. I hope you find something in the forum that works for you.


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## annie7 (Aug 16, 2002)

so sorry for all your problems. you've been through so much and you have tried so many things.

my anal manometry said i had a high resting tone, too. this article kind of explains all that.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2978399/

i've always heard and read that with pfd you want to avoid kegels because you want to relax those muscles and not strengthen them. and that's what my biofeedback PT said, too. however that's an interesting theory that your c/r surgeon came up with. i suppose it could work but i don't think it's something i'd personally want to put to the test. my biofeedback PT wanted me to tire out the muscles, too, but had me doing that by doing the gentle "squeeze and release" exercise a number of times in a row, several times a day. you squeeze just enough to get the release--no harder.

after my first 8 week course of biofeedback i bought a home biofeedback machine and after diligently practicing with it daily for almost a year, i learned to relax my pelvic floor muscles. i was a tough case because i'd had pfd for many years and had a tight muscles memory to unlearn.

good luck with everything. wishing you all the best. take care.


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## jaumeb (Sep 1, 2014)

I also have chronically clenched muscles. Kegels are a bad idea for me. Stretching and yoga would be better. My personal crazy theory is that the underlying problem is a fungal overgrowth.


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## jea7065 (May 18, 2015)

jaumeb said:


> Impressive list of things that have not work plus some contradictory advice. Thanks for sharing. Sorry you've been through all this. I hope you find something in the forum that works for you.


thanks for the response! I wish you well with your issues. Yeah, the contradictory advice was really disappointing. Of course the doctor believes what he says is gospel. I emailed the PT twice after the doctor told me do the Kegals to get her opinion but I sadly never heard back from her. It seems as though after the botox treatment that practice was kind of done with my issue. During the follow up exam from the botox, when I said that there really was no improvement, he said that the botox had done it's job and that the next step would be exploratory surgery that I really don't want to do. I totally understand that he sees folks that are in pain, who can't go at all or have any of many more issues that I've discovered in the past year. I guess it's just my ignorance, thinking that somebody "had" to know what my issue is.


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## jea7065 (May 18, 2015)

annie7 said:


> so sorry for all your problems. you've been through so much and you have tried so many things.
> 
> my anal manometry said i had a high resting tone, too. this article kind of explains all that.
> 
> ...


Thanks for the link Annie and the response. As far as you understand, is there anything that can be done about the high resting rate or is it just the way you are? Also, what "squeeze and release" exercise are you doing and did it help?

In reading about PFD, it seemed as though the biofeedback would be the silver bullet and I had thought that the biofeedback was something that you did over and over again, like you say you are doing, in order to retrain the muscles. But for me it just showed my paradoxical condition. I guess they thought that since the stretches weren't doing anything then that wouldn't help either? I may need to see someone else for another opinion at some time. Yesterday was a classic example of the issue at hand; Two BMs in the morning and then a slight feeling of pressure until about 1:30 when passing gas relieved it instantly.


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## annie7 (Aug 16, 2002)

my biofeedback PT told me that working with biofeedback would help retrain my tight muscle memory so that i would have a lower resting tone. also it is essential to relax your pelvic floor muscles as much as possible many times during the day. constantly focus on them and keep them relaxed--while you are sitting , standing, talking on the phone etc. you have to be consistent and work hard to retrain those muscles.

pfd exercises my PT told me to do:

this is the gently squeeze and release one:

gently squeeze your pelvic floor muscles--the muscles around your anus-and then relax them. squeeze just enough so that you can "get the release" as my pelvic floor PT puts it--- get the relaxed feeling. this helps you identify your pelvic floor muscles and also helps you to relax them.

here are two other exercises she told me to do:

1) slow contractions: contract your pelvic floor muscles for 5 seconds (gently) then relax them for 5 seconds. 10-15 times in row, twice a day. always relax for at least as long as you squeeze.

2) quick contractions: contract your pelvic floor muscles gently for 1 second and then relax for 1 second. again, never hold your breath while doing this.


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## jea7065 (May 18, 2015)

annie7 said:


> my biofeedback PT told me that working with biofeedback would help retrain my tight muscle memory so that i would have a lower resting tone. also it is essential to relax your pelvic floor muscles as much as possible many times during the day. constantly focus on them and keep them relaxed--while you are sitting , standing, talking on the phone etc. you have to be consistent and work hard to retrain those muscles.
> 
> pfd exercises my PT told me to do:
> 
> ...


Thanks again Annie. These exercises sound like Kegals. Per my "plan of care" from the c/r surgeon:

"Kegel exercises are the squeezing and holding of the pelvic floor muscles, especially the sphincter muscles of the
anus, for 10 seconds and then repeat for a total of 10 times and do this twice a day. This will both strengthen weak
muscles and fatigue muscles in spasm."

I have been more mindful of if I am tense and it does seem that by default, escpecially when walking, that I hold both my abdomen and sphincter tight. Must 've been doing this for years. And like you said, thre's a muscle memory there that needs to be retrained.


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## annie7 (Aug 16, 2002)

the exercises i mentioned are all to be done gently. they are not the type of kegels that are done for incontinence problems --the type of kegels that are used to strengthen weak muscles . that's entirely different.

my PT wanted me to gently squeeze them so i could identify them and also so i could "get the release" as she put it--feel what it feels like to have them relax. i didn't have spasms. this was just the treatment program she gave me. one of the nice things about biofeedback is that it isn't cookie-cutter. it's tailored to the specific patient and their particular needs.

and oh yes--it's good to be mindful of what our muscles are doing at all times







it really helps.


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## Patrick ibs c (Mar 5, 2016)

ill try that


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## Patrick ibs c (Mar 5, 2016)

jea7065 said:


> Thanks again Annie. These exercises sound like Kegals. Per my "plan of care" from the c/r surgeon:
> 
> "Kegel exercises are the squeezing and holding of the pelvic floor muscles, especially the sphincter muscles of the
> anus, for 10 seconds and then repeat for a total of 10 times and do this twice a day. This will both strengthen weak
> ...


have you tried putting feet up on a stool to put you in a squat ?


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## kaydee82 (Aug 16, 2014)

Hi all. I've lurked here before, but don't think I've ever posted. I find this site so huge (sad that so many people are suffering) that I have trouble finding my niche. Anyways, I have IBS with incomplete evacuation, paradoxical puborectalis syndrome, rectocele and SIBO. The Fast Tract Diet has been my most successful dietary strategy for my IBS symptoms other than incomplete evacuation. It also completely eliminated my GERD. I had a botox injection for the PR muscle, and it seemed to be working for a few weeks (I was having 12-15 BMs per day, but, hey, better than not moving and being in pain) but now, I'm back to having 2-3 BMs but being in pain and discomfort the rest of the time. I want to ask for another injection. Has anyone done that? I did the biofeedback, diatelzem, and much more with no success. I do yoga, relaxation and try to stay active. I also use a raised platform for defacation, spliting for the rectocele, and tap water irrigation. Let's see, have I missed anything? LOL. I'm beyond frustrated, as I know you all can relate. Thanks.


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## annie7 (Aug 16, 2002)

hi kaydee

so sorry you're having so many problems. you have a lot going on. and yes, it looks like you've been very thorough in trying things. and oh yes it sure is beyond frustrating!

that's good that botox was helping you for a while. oh yes--i agree--having 12-15 BMs a day--to me at least-- would be much better than not moving at all and being in pain.

i never tried botox because my insurance would not pay for it (and my docs didn't think it would help much because of my other problems) but from what i've heard others say and from what i've read, it does wear off after a while, requiring another injection. i definitely think it would be a good idea to ask for another injection since it's been helping you.

good luck with everything. hope you can somehow find some relief.


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## kaydee82 (Aug 16, 2014)

thanks for your support annie7!


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## annie7 (Aug 16, 2002)

oh you're more than welcome









and good luck to you. keep us posted as to how you're doing. take care.


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