Health Organization for Pudendal Education

Hi NYT,
Thanks so much for thinking of me and copying this info down! I really appreciate it.

I think will try the flax seed mix first as I have them on hand. and need a "regimen due to the opiate meds.
My flax seeds have been there awhile (but have been refrigerated) .. not sure how long you can keep them?
I also have magnesium citrate on hand, but may try the magnesium malate first, as the citrate can be hard on the bladder.The latter (knock on wood) is a bit calmer..thanks, I believe, to my great PT, so Im afraid to start a flare with the citrate. But that regimen sounds good. I just have to make sure I measure th ewater and drink those 8 glasses.

I have a health food store nearby where I can get the Aloe juice and hopefully the other things you mentioned.
I doubt if they carry the unfiltered apple juice but will call them to check. I would think supermarkets would carry this apple juice? I would assume the larger ones would.

Yes I also had a PT who did the "I love you" massage.! My current one works on that area also, but when I mention massage she just says "massage" the left side in a downward motion ( the location of the large intestine I think?)
But your method sounds much more substantial in getting thing moving so will try that too..
Will try on your kind suggestions and let you know results. Thanks so much. I appreciate you all, and your advice so much!
Docs give very little direction. Even my pain pump nurse, who has become like a buddy to me, has no idea what to recommend for to prevent the opiate constipation. This surprises me as she deals with pain pump patients only, and is a great nurse who used to work in the ER.
Anyhow thx again and have a good night!

maximum doctors are prescribe some antancids along with paind medication so please consult with your GP

My PN damage affected my bowels motor function and I have functional issues with the actual evacuation of the bowels. I do a couple of things to battle constipation, I manage to stay away from the stimulants almost entirely, as they are worse than the constipation when your muscles don't work right already. When my bowels get full I am guaranteed a PN flareup. This is what I do:

1. Chocolate no-bake oatmeal cookies, I add a cup of plain Metamucil into the oats in a separate container and mix it up with the oats before adding. They are slightly more crumbly but two of these cookies are your daily fiber, and you don't notice the Metamucil. I limit my daughter to one of these a day but she loves them. If I am having constipation I take two with each meal. The oats also add too, and the cocoa is a natural stimulant. I find this easier on the digestion too than just Metamucil, the reason being is that cooking with is softens the fiber some.

1a. If I cant do this I take psyllium husk capsules, it's basically Metamucil packed in a capsule so you don't have to drink it, I get them at Wall Mart or GNC. 2 caps twice a day.

2. Dried beans, use the dried kidney beans and make chili, the drided beans have way more fiber vs. the canned beans.

3. Fiber gummies, these work too, but you are going to need to figure out how many you need to battle constipation. I am a 6' 2" 250lb guy, I found I need to take 8 of these to work as a lubricant for the bowels. These are my overnight go to instead of stimulants.

4. Lower Enema, this was told to me by my proctologist when my anal dysfunction was first discovered in 2008 before the PN totally appeared. When my PN flares up in the morning this is what I do:

• a. First lubricate the anus with KY, or any hemorrhoid cream you have.
  b. Then take a bulb syringe, the kind for babies noses, and fill it completely with body temp water. I use a dixe cup for this, and I Keep the syringe in a plastic bag.
  c. Insert into the rectum and squeeze, refill, repeat this 2-3 times or until your rectum is full.
  d. MY step, not the doctors, do the potty dance. Trust me, it helps loosen everything.
  e. Go to the bathroom.
  The water will loosen the stool and break it up making it much easier to pass and help prevent hemorrhoids.

This is my entire routine for constipation. n

Carl

Carl, I am trying to envision the potty dance. Love the humor there..... Hey...whatever works.

I think we should add your ideas to our website page on constipation. http://www.pudendalhope.info/node/32 Would you be OK with that?

Violet

Sure, no problem, the reason we post is to help each other.

Hi Carl and All.
Thx for all the informative and funny info.Carl, You have a great sense of humor!
Will try these Ideas when I get back home, as I am on vacation with my family.
I hope you feel better soon Carl, and recover well.
Violet thx for the link about "stomach issues. Sounds great.
I have one brief question.
(I just typed a long post and somehow all info was lost again. So here goes a briefer version.)

I hear much conflicting info. Doctors told me to always match your dose of opiate with a stimulant laxative,--ie take a dose of your medicine make sure you match it ..with a laxative.( for ex - Senna etc) Never get behind, or you could get backed up.
Since I have a pain pump dripping meds into my system 24 hours, I assume I must take this advice. This is the advice Ive followed for a few years since a doc first prescribed pain meds

I also heard that things like psyllium husk- (Metamucil) for ex: can create problems for opiate users --ie make your stool like cement.. unless you literally drink tons of water. Being a small built gal - 5'6'' at 116lbs-- I drink as much as a I can but I get full fast. I will keep trying.

This is my problem. Each day I wake with a feeling of "urge " -- right after I eat breakfast it starts. I never feel much relief -unless I've gone to the other extreme and taken too much laxative . Then I'm in bathroom all day. This happened 2 days ago. After that I skipped laxatives for a night. I had to as my poor system needs a rest. Taking these things is making me sick, Im sure. My PT agreed strongly.
I have cut back on laxatives lately. For ex: one night I take my senna (a stimulant in my usual amounts)
If I get results. I either take a much milder laxative the next night or just colace- a softener.
Yet each day I get the 'urge to go ' right after breakfast, I know I've come to 'expect 'it/ I am a worrier who clenches my pelvic floor muscles without even knowing it----this also contributes to my above issues and my pain. But it's the way I am genetically, tho Im trying to be calm as possible.

My question...am I causing this urge feeling by taking stimulant laxatives? Im starting to think so!
Has anyone experienced this?
If so could you pls comment? I really your help I have more to add but must sign off for now .
Thx so much everyone for any advice! I feel lost at times as family doesn't understand this.
It's hard for anyone who hasn't experienced it!
Thx Violet for that link! I will use it.
Kathy

I can totally see where having to go to the bathroom due to too much laxative can cause a flare-up and make pain worse.

You rectum is the part that tells the body you need to have bowel movement, and guess what nerve it uses to do that....

PN you guessed it....

As I read your last post I was thinking more on the fiber gummies, in my experience, they tend to act as a lubricant and a bulk aid without the harshness of fiber. The ones I have tried have chicory root, it is used in a lot of energy bars and other places https://en.wikipedia.org/wiki/Inulin They say take 2 a day but I take 6-8 a day to help with constipation. The are also only 7-8 calories each, so they are not a huge source of calories.

The no-bake cookies are already partially hydrated and softened by the cooking, they won't be as rough on the system. I use a small cookie scoop to make the size consistent.

Either of these can be taken daily or every other day. I you want I can post the recipe.

Thx Blight CP (Carl.)
Yes I have 2 issues---- anal throbbing,,, and urge to "go"--when I probably don't have to
and I see you agree that laxatives can cause the latter. Too much running to the bathroom aggravates the pain, but I also get 'urge' when I know colon is basically empty, but was taught by docs never to ignore ANY urge,so off to the bathroom I go, some days trying to push tiny bits, out or nothing, if Im empty..
Then all this results in increase in anal throbbing, as you said. (throbbing is there anyway, but surely this flares it.)
Im not surprised that the PN controls both things.

What happens is: this urge drives me crazy, ( it's very hard to ignore and hard to know... if I really need to go!)
You see.... we've discovered over the past year that my pain and probly my urge as well, come from the anal area being in spasm..probly due to years of unconsciously clenching.
Also in 2006 I was mistakenly told by an impatient doctor that I had IC. Other docs I saw after him didn't know for sure ---( yes or no )etc , so I quickly started researching, got very scared etc and the clenching probly increased' big time'.

By 2009- 2010 sitting pain and later severe anal throbbing pain developed ..
I had lots of urge/frequency to pee at the time, in 2006 (when all this began) so you can imagine how my clenching increased.
Anyway instead of IC , we think what I really had was a clenched pelvic floor also causing that peeing problem. but it took many years, and a really good Pt to figure it out! Lots of years of fear over IC....Wow!

Thx for ur link on the energy bars etc, hickory root etc. Hope they can help. So nice of you!
Yes when you have time it would be great if you could post recipe you mentioned.. Thx so much!
Anyone else experience that urge feeling I mentioned.
It happens after meal, breakfast etc. Just returned from beach, ate quick lunch and same thing happened. Had to push so hard to get any relief that I am lying down with a pain suppository.
meanwhile pain doctor does not entirely get it.. I have asked him to increase the bacoflen or valium in my anal pain supps as suggested by my compounding pharmacist, who also knows my case well. (my urologist gave him the scoop for me.)

Anyway..my .pain doc never called back on this, and wants me to stick with a plan he came up with, requiring me to hit the bolus button on my pain pump each time my pain goes up..This sends more opiates into my system!
At my current level I only see small help from this , but it will add to constipation, gradually. ( My Pain doc knows Im struggling with this issue but only wants to work with one issue at a time.) Docs are frustratingly like me..meanwhile we suffer for years.

To me the issues are so related they are like one. Im thinking if we could relax that anal sphincter we could hopefully remove the pain pump.
Its been of some help,
I function, but family has no idea of how much pain Im still in, as I continue daily activities. etc.
I rest a lot tho.
I have been able to do more things in past 6mos activity wise... and bounce back faster. I attribute this to my physical therapist and her work and the things Ive learned from her knowledge.

Thanks again Carl...so kind of you! I will check that link and hope I can try your ideas soon.. so much better than taking stimulants.
If anyone has this urge feeling I described from laxatives, pls post! Should decrease my laxative intake, more. I know its hard to say as we're all different. Just for thoughts as many of us on this site take opiate meds for pain, etc.
For now I am away from home and have to go with what I have on hand.. The Good thing here is I will be walking alot..Exercise helps move things along!
Thanks Carl, and all!

Kathy,

I don't have any opiates in my pump yet but probably will be soon, my first refill is next week. I just asked my pain psychiatrist last Monday about pump opiates. He told me that the pump does not have the effect on the bowels like the oral opiates do. He said that the bolus is the preferred pain relief method to use and he does not care if I max it out all the time, it is better to do that then to take oral opiates. This corroborates my own research into this that only a very small amount of opiates get into the blood from the pump.

I totally get your "couple of bits" comment, right there with you, I cant tell if the rectum is full or has a pebble in it. One of the tricks I found is the lower enema, it makes it so the your bowel is actually full of something to push against. This helps push everything out in one go, you don't have to strain and spasm. This helps the pelvic floor a lot. If I am unsure if the bowel is empty I do an enema then also. You get used to doing them after a while, the only part that takes time for me is to get the water to body temp, check with your wrist just like with baby formula.

Have you looked for a PT place that does internal pelvic PT? I know that helps me a lot keeping the pelvic floor balanced and not in tension. From my experience, it is not fun, but after a few sessions you will feel a huge difference in the pelvic tension. The basically do trigger point work on the obterator and other pelvic muscles. They can also mobilize the sacrum and coccyx that can get torqued out of place form too much tension.

Thanks Blight, for all your advice.
It makes me feel better to hear your doc confirm that the opiates ( i just have one opiate and a very low amt of bupivicaine in pump) really don't seem to constipate that much ( at least compared to oral meds).
I knew that was the whole idea but some doctor and nurse put the idea into my head to still stay on top of constipation prevention right after I got the pump.
I think I got into a bad habit of taking laxatives.. over time.
My current pain pump doc just said.. take a couple colace each day-- but admitted he knew very little about these issues and referred me out to a GI doc.... who advised Miralax. This is a good drug, and I hear of folks with good results from it. BTW Miralax can be doubled and tripled safely according to my doctor.
The only bad thing about Mirlax is that it takes a day or 2 to "work" and then its pattern is established.
That's bad for me as I have this awful urge feeling if don't go daily... again probly from too much laxative use.
By the way I do have a good PT whom I've been seeing since the fall ,,with a few breaks when she had some medical/personal issues..
but Ive had a several months of PT. She is the best PT I've seen,...shes says my issues are from anal spasms and over- active central nervous system from years of worrying that I had IC ..PN etc, and researching the internet, constantly!
She notes my pelvic floor, now mostly peri/anal area is in spasm.. She says Im doing well,making progress and anal area looks good.
I notice improvement with bladder symptoms (knock on wood!) but the anal area still throbbs horribly..Hope she is able to to help me there..
Whenever I have to sit or perch as life requires ,to live normally, I suffer with terrible anal pain.

Based on what your doc said, I feel more confident about hitting the bolus without more constipation..(I have only been using it about once a day! My doc wants me to hit it whenever i feel pain and even use the max amount per day, but since he didn't seem to understand the bowel issues, I was reluctant to do that. Hitting bolus just once didn't help much, obviously!
Thx for your info!
How are your doing with the pain pump...what meds do you have? Is it helping yet?

One more word or two about laxatives.. Milk of magnesia works well, but in careful doses...For me 4 oz is too much, and keeps me running.
2 oz. is too little and does nothing.. Maybe 3 oz? Will see.. this med can be like a bomb...old fashioned remedy but it works.
Also I mentioned before that my Doc gave me Movantik - a drug designed to reverse the constipating effects of opiates,without reducing their analgesic effect..appparently. Its very new..so there's not much info available online.
My pain doc handed it to me and said to try it tho he was basing all his advice on what the drug rep had told him,as my doc admitted he was new to it.
Im using it since May, and will continue, but will keep my eyes open for any reviews on it.
Thanks again and have a good night. I will write more about your ideas on enemas but off to bed for now!