Health Organization for Pudendal Education

H iCalluna
Thx so much for all the thoughtful advice!. Thanks for taking the time. Ive been off the bran for 2 days>
I had seen a list of recommended foods to help manage opiate induced constipation on a website ... so thats what started me on the bran kick... It said that Phsylium seed and various other fibers were too bulky, but recommended bran! So off I went buying whole grain, fibery everything.. (usually I'm a white bread, white rice eater,so the bran kick was new for my system.

I just spoke to good friend who has dealt with lifelong constipation.. she too knew that bran was like "cement in your colon," and agreed with your advice

I am a frightened person after years of dealing with this pain, searchnig high and low for answers and meeting with lots of failure and unfortunatly some bad advice from some docs.
I am quite high-strung by nature.. which doesn't help.. I m married to a guy who is just the opposite,
and he has lost patience with everything after years of taking me to docs... and so that has made me quite upset.. not what my body needs
all not good for the bowel issue or the pain.

I am working with 2 new pain docs currently who have some plans and I am waiting to get moving on this..(things as we know always happen slowly in the medical system)
Meanwhile I coming slowly off the opiod med and the nerve is acting strange... which docs also think could be part of why Im feeling so backed up.

Meanwhile I have been off bran , taking tbls of olive oil (I dont' mind it) and taking my laxative. Miralax is very mild and works too slow, I take at least 2 dose (one each time I take pain meds) I sometimes add more with meals due to the back up..
I also tale Duclolax... and Milk of Magnesia, as the Dulcolax has not been working as fast lately. I usaually take 2 Dulcolax with each pain med dose (so about 4 a day) I take less if I just had a BM...sorry for details... so hard to know what is too much or too little!
Besides the olive ioil what other foods can get things moving? Due to my Painful bladder I avoid some juices and fruts (acidic) but if I have to clear things out. I'll risk a flare
If the blocked feeling continues I may go for an X-ray to take a look at things soon.
Thank again Calluna
Will keep you posted
Best regards
Kathy

Hi Rosemary,
Just wanted to thank you for the hugs and good wishes and advice!
I really appreciate it! The kind response helps!
Wishing you the best!
Kathy

Hello again Kathy

You sound calmer, you know? It is so difficult with all this nasty stuff going on, the pain is hard enough to deal with in the first place, without one's body misbehaving like this and causing such physical inconveniences.

One thing to bear in mind here is that when one has been badly constipated for a while, the gut gets rather overstretched and can lose muscle tone, to a degree. And although it will return to normal again, it will take a little while. Until it does, the blocking-up can keep coming back. So don't worry about it, it doesn't mean that it isn't ever going to go away - it just means that it hasn't gone yet and in the meantime it needs management.

With regard to what you are eating and drinking, it is certainly not going to be necessary to eat or drink anything that would cause a flare for your painful bladder. That's the last thing you need, you've got enough to cope with. Please don't even consider that.

Now, with regard to what you are taking - have you discussed all this with your local pharmacist, by the way? They can be very helpful. Over here, our local pharmacy offers an advice service for just such problems as this. I don't know if such a service is available to you?

I have not found doctors to be very helpful with regard to constipation. Doctors tend to just say, oh take a laxative. I have, however, had so much help and support from the practice nurse. I think that nurses deal with this sort of thing a lot and become much more knowledgeable about exactly what works and what does not. So also I would recommend to you, seeing your practice nurse for support.

Where were we - ah yes, what you are taking.

Milk of magnesia is an osmotic laxative. So is Miralax. Perhaps better to stick to just one medication of this type? I'd think it might be better to simplify things and drop the Milk of Magnesia. Then the dosage is clearer. Miralax is very effective and very safe, they use it long term in stroke wards, I've been told by the practice nurse here and also by my GP.

Dulcolax is a stimulant laxative. I don't know how long you've been taking it but if you read the small print you'll see that it is intended only for short term use, something like five days. This is because the bowel will get used to the medication and needs increasing doses to have the same effect. So if you've been using it for much longer than five days then maybe have a word with your local pharmacist who should know what to do. (Don't panic about this! It will be ok. It will probably just mean moving to a different stimulant laxative which is easier to deal with - probably senna, you can take that for weeks if needed. But do speak to your pharmacist. )

Miralax - (Movicol over here in the UK) - if you read the instructions in the packet you will see that you can take 1 - 3 per day. And for faecal impaction, up to eight. You mix it up in a jug - it's all in the instructions. That, well, that's more like dynamite! - it really is like having the bowel washed out, you don't want to be far away from a loo that day. I had to do that several times - not on successive days, I hasten to add. Over the weeks that it took to get back to normal again.

Yes, Miralax is gentle. But honestly you don't want anything nasty happening to your poor bowel. It is hurting already as it is a bit overstretched, the bran has settled pretty solid in there probably and it will take a little while for it all to get completely clear. But get clear it certainly will, please reassure yourself on that. Our bodies are very good at healing themselves.

Eat nice little meals that are tasty, just have what you fancy, put some lovely olive oil on your salad and veg, use it in your cooking too, and just be kind to yourself.

It will all be fine, I'm sure.

Sending you a big hug as well.

Hi Calluna
Thx so much for following up and checking in and for your advice. It can be awfully lonely with this rare ailment.
Family is off doing their things, and hubby and I aren't on the greatest terms as he is worn out from having to do the domestic things I can't do currently (like drive the kids to their events etc) And I am so mad at him for not understanding just how bad this pain is.. He is the stoic stiff upper lip type and doesn't respond well to tears.. He's the type of person that can't empathize with something unless he FEELS it , and always insinuates that I am selfish for "dwelling" on the pain. That is so hurtful on top of everything else.
If only he could feel it for a few hours!
He has a wonderful digestive system that is as regular as rain tho he rarely eats fruit, or hardly any veggies... He is a meat,potatoes and pasta and beer guy... So he cant understand how constipation could cause such horrendous pain. things have been up and down in our household for a long time ...not good for my pain for sure
Anyway, getting back to meds!
I finally "emptied out" Friday night.. constantly and then all day yesterday as well! It soon became quite watery (surely due to the osmostic laxatives ...all the Miralax plus the Milk of Magnesia) sorry for the details (Ive lost all modesty it seems!) At least it worked. Dulcolax seems to be needed stimulate as I would need gallons of Miralax to get me going .it works slowly and I become uncomfortable fast .(I have taken alot of Miralax for some time , usually doses with each dose of my methadone, plus more Miralax with meals.
Today,- Sunday- I felt okay but I soon as ate breakfast . the back-up feeling is started again!...Must be just as you described, my poor stretched out gut is responding this way?
I spoke to my compounding pharmacist yesterday, and he suggested Sorbitol, you can find it in sugarless candy and in throat lozenges you suck on for sore throats etc.
I bought the actual Sorbitol laxative..haven't tried it yet.
Couldn't find much info on line about it other than hospitals use it on very ill patients who are on pain meds, as part of their protocol...nothing was mentioned on its use for chronic pain patients who are up and about.. like us.

Sadly the nurses at my pelvic doc's practice are of no help..They are not trained in this stuff.They simply take your blood pressure and leave.(I think they are probably just medical assistants, not RNs....There is a Phys Assistant who works there, but in my dealings with her, it is clear she doesn't have the knowledge or the patience to help.
She calls me "complicated" and I find it upsetting to talk to her. I am on the lookout for a new pelvic doc, as my kind and knowledgeable doc 'retired to address her own medical issues, leaving her overwhelmed partner to handle all of us.
Sadly this doc doesn't seem to share the passion for healing pelvic pain patients.. and has been of little help thus far.
Their practice is in a very fashionable Manhattan neighborhood and is very $$$$...Now that my doc is gone, its no longer worth the money so
we NY patients are keeping our eyes open for another doc who knows how to compassionately treat us.
I do have a new pain doc with a plan, but I don't think he is the one to advise me on this bowel issue either; as you said, they simply advise you to take a laxative.
I have dropped halfway off the methadone, the pain doc advised me to stay where I am for now, but with the constipation issue in mind I am thinking of dropping a little more.
Do you think this would help? I usually stay at one level for over a week then drop down a few mgs.. Im now at 20mgs. The pelvic doc thinks the titration down is messing with my bowels as does hubby, but logic tells me the sooner I get off this junk, the bette my bowels will be.

I guess the bran is still in there as you said, but if this cycle of contipation/diarrhea and returning back-up doesn't settle down soon, I will get an X-ray of the colon and intestines done...to check for back -up.
I speak with a wonderful talk therapist who knows about all of this, and she suffers from idiopathic constipation herself..takes lots of Dulcolax; it has saved her from ever becoming impacted.She doesn't think I have true intestinal back-up but who knows.
I think what you said about the conditon of my overworked gut makes sense... so we'll see.
What do you think about the sorbitol?
Thanks again for all your support. Im sorry to go on so! I sure hope you are feeling well.
Your support has been a lifeline for me during this hard time.
Thx again!
Kathy

Goodness Kathy, what a complicated situation. I don't know where to start.

First, I am so glad you are feeling more comfortable. But do be a bit wary, it is actually not very likely at all that you are all clear just like that. What tends to happen is that stuff gets stuck to the sides - cement, remember? - the sides which will have got overstretched - and you'll get the watery stuff going straight past. The sides take a bit of time to regain tone, and also it will take a bit of time to get all the 'cement' clear - we're talking weeks. So don't hold your breath on that. But it is very good that it is starting to move - because that's what's happened. Keep the fluid intake up!

Sorbitol is yet another osmotic laxative. Honestly, when you find one that suits you, stick to it. It isn't usually a good idea to keep mixing them up. And - just a thought - you might find that you get better results if you take whatever you choose at regular intervals so that your gut gets used to it and can re-establish a rhythm - say, morning and evening, or whatever.

I can't actually take sorbitol, I have quite a violent reaction to it. Another one you could consider is lactulose - and that's another one that I can't take, again I have a violent reaction to it. You don't want to know....

Did you ask the pharmacist about the Dulcolax? Or are you taking this under medical supervision anyway? This stuff is for short term use only, over here. Maybe it is different in the US? But then lots of things are, with regard to medication....


I have absolutely no clue as to what you should do with regard to the methadone dosage, Kathy, I wish I had something helpful to say here, but I really don't think I am the person you should be asking. With regard to constipation, I've been there, around the block, and back again - but methadone? not at all.

What I do think, is that you need to get that 'cement' out of your system.

I am so glad to hear that you have a new pain doctor - who has a plan! I hope it is a good plan! And I am even more pleased to hear that you have a good therapist. I was so lucky to be referred to a lovely therapist very early in this journey - she has helped me so much.

I too think, from what you have said, that it is very unlikely that you have intestinal backup. You'd be feeling sick at the very least - you'd be unable to eat anything at all - you'd be having all sorts of horrible symptoms that you haven't mentioned at all... nope. I think that if you keep going, gently, with the laxatives, and keep your fluid intake at a sensible level, and don't even look sideways at a bran muffin then you'll be just fine.

And thankyou for your kind wishes. I am doing better at the moment than I have been since this whole story began. This current combination of meds is working magic for me. I would wish the same for you.

And it is morning here now, and I have a cup of coffee, and am feeling a bit more alive than I was yesterday evening! More to say.

I am just so sorry to hear that your husband is not sympathetic to your pain. It is hard to know what to say, except to offer my sympathy and support right here, for what its worth. What a good thing you've got a helpful therapist to talk to. They are worth their weight in gold at such a time.

Anyway - I've been thinking about what you were saying - you were thinking of reducing your pain medication in order to reduce your constipation problems, but your pain doctor was saying to hold the medication at the current level for a while. Also, your pelvic doc thinks that the titration down has been messing with your bowels. But neither of the doctors know about the bran 'cement'. Have I got that right?

I really do think that you should follow your doctors advice and hold the meds where they are for the time being.

If you reduce the methadone, you will be in more pain, and that will make things much more difficult for you overall, and reduce your quality of life substantially. Not good! And also, there is the 'cement' to be dealt with, as well, and it would be better to have some pain relief running during that particular process, if you follow me.

So, I really do think that you should do what your doctor says and keep the methadone as it is for the moment. And focus on getting your gut back to feeling normal again, which will take a little while.

Once that is all back to normal - or as normal as it can be whilst you are on methadone - then you can start working on reducing the pain meds, together with your doctor. I'm sure he will have something in mind as a replacement. Are you are seeing him again soon? Hopefully you'll be feeling rather better by then.

I hope that you have a better day today.

Hi Kathy,
Also sorry to hear that your husband isn't the best at supporting you at this time. It is often such a hard thing to understand, especially when there is nothing to actually see. My husband has his own rants every now and again, which to be honest he is entitled to, as this situation is difficult for all but I have felt rather let down by him of late too. However he seemed to be in a better frame of mind yesterday, which may have had something to do with the fact that I read him some of the guy's posts on here I could see his face screw up with sympathy and painful empathy. OK, I may have added my own take on some of the problems from stuff I remember but couldn't find anymore but it seemed to work.
I don't usually recommend subterfuge, but it may well be necessary in your case too. A couple of graphic surgical shots thrown in do no harm either, especially if he is a bit squeamish.
At least you have the support here and that of your therapist. Calluna deserves the HOPE helper of the week (month? Year??) medal I think.
BUT as I know she would also say, that is what we are all here for, to help one another out if at all possible. Heaven knows we need it!
Take care,
Helen

Hi Calluna,
First of all I just wanted to thank you so much for your great advice and for being there for me. You really do deserve a medal! Im sorry I brought my issue with husband into the discussion but we had a rough argument and I was feeling quite alone and in pain. Your response when I turned on the computer was wonderful..Thanks for your compassion!
As you folks know family members sometimes can't understand what they can't feel, and after a while they used to seeing you crying or down, and it becomes the "norm" so tho they do care, they retreat sometimes which can makes things even worse for the patient, tho I sure understand the need to get a break.
Friends are are hard to explain all this to, and are quite busy with their own lives.
Thanks again for being there!
About the bowel issue, yes you have it right. I tried getting help awhile back from my pelvic pain gyn but it became obvious she was not going to be of much help so I haven't brought it to her attention lately.The pain mgmt doc is new; I recently switched to a him, as the one I had been seeing was quite rude. My new doc has come up with a new plan, but yes I hadn't mentioned the constipation to him..
So my docs are unaware of the bran cement.. ha ha. ...
My pain doc and I are planning pain pump trial in the near future, with another doc who does the pump. Im waiting to get a new date for the procedure .It was supposed to be done last week, but a snafu came up on their end, and I want to make sure it is done in the optimal way so I re-scheduled. That's why the pain doc suggested I remain at the at current level of methadone.. BTW the methadone didn't ever help much from what I can tell, but I do think I would be even worse if I was off it.. so I agree with you.
Hubby had suggested I go down as he watched me suffer with the constipation cycle.
I do get mini relief from Diluadid supps and I will keep with those as they allow me to stand a bit..
I m also looking into some other suppository combos that have helped folks, as I barely get through each day with the anal pain and the bladder flare. Just making sure I have all the bases covered,etc.

Thanks so much for your advice. Tho I don't eat bran anymore I assume its okay to eat some things (like cereal) containing minimal fiber, as I am a very thin gal and need to eat a wide variety to keep the weight on. (the danged IC diet caused much weight loss, but didn't help much)

Thank so much for your support! I so appreciate your kindness. I am very glad for you that you are feeling better than ever..That's wonderful to hear!
Hugs to you!
Kathy

Hi Helen
Thx so much for your support too. Im sorry your husband wasn' t in a great frame of mind this either.
I like your idea of gathering info to show him..
My hubby is stubborn and will read things when he feels like it... so what I"ve done lately is copy the info I want him to read and email it to him at work where he is aleady at his desk and can read in peace..
It seems to work.
Once he gets home he "turns off" so I find it's hard to get him to listen or plan our next strategy as he just wants to veg out... Since the docs are so disinterested in figuring out our cases, I feel like it is my job to find answers to get my life back, and get so upset with hubby when his sense of urgency doesn't match mine.
If one isn't feeling it they can't understand the true "torture" this is when pain is not managed well enough. Its hard to focus on anything no matter how important, when pain is so unrelenting
My hubby is a good man, but after 6 years of a zillion docs appmts, PT, travel to faraway practitioners etc and doing the domestic stuff when I can't , the once sweet tempered man I married is not always there!
I feel like I need to get well so I can relieve him. I can't wait for the day that I can drive my kids to all their events and do all the shopping on my own (my dream!) and give him a break.
Do whatever it takes to get his attention, you deserve it ..a little subterfuge is okay at times right?
Thanks to all for your undertstanding and support. I appreciate I times like this more than I can say.
I am here for anyone who needs support .
Blessing to you all and thx
Kathy

Hi Kathy

Well, I am glad to have helped a little bit! If I can suggest - print off the Comparative Pain Scale from the Home Page info. It is very good to have this to show people, from my experience, they take it more seriously then when we say 5 or 6 or 7 or whatever.

I am reminded of the lady who was in the bed opposite me after one of my surgeries. I know I've told this story before, so please forgive me if you've read it here before. This lady was sitting up in bed leafing through a glossy magazine and chatting to her visitors, when the ward doctor arrived at her bedside, to say, I hear that you are having some problems with pain, Mrs X, could you tell me on a scale of 1 to 10 how bad it is? She looked up from her magazine, said 10! - and carried on chatting to her visitors. Terribly rude, really. So - well, yes. She was given some paracetamol - which I think is acetaminophen on your side of the Atlantic.

It is perhaps easier for me to manage this condition than it is for many other people, because my husband has lived for many years with pain himself because of cancer many years ago. So he does understand what I am going through, and he has been entirely helpful and supportive. I know just how lucky I am, believe me. But I've had my low points too. I come on here and get all grumpy sometimes, as you may have noticed.

And - ahem - maybe tell the docs about the bowel issue! Just a teeny little mention... I hope you are back on the road to normal now. To be honest though - with regard to cereal - you're talking here to somebody who is rather biased on the subject. I don't touch grains myself, not in any shape or form. But we all have to make our own minds up about what is or is not healthy to eat, so I will refrain from getting started on that particular subject. However i will just give this link....

Seriously though - if it works for you, and keeps your gut comfortable, and you can maintain a normal weight and your bloods are healthy, then that's about all that anyone could ask. And if that's the case, then you've found what works for you, and you should stick with it.

I do hope that all goes well with the pain pump. This was suggested to me, as a last resort if we couldn't get any useful help from medication. It is such a lifechanging thing, after all - I am so glad that I am not going to have to face that decision. At least, I hope that I won't have to, because we never know what the future may bring, after all.

Have you tried all the usual neuropathic pain meds, then, Kathy? Gabapentin, pregabalin, duloxetine? And I suppose that we need to add topiramate to the list now too.

Wishing you (and Helen!) what I've got right this minute - which is zero pain.