Health Organization for Pudendal Education

Hi
Does anyone have this side effect from opiod meds?
I find that the day after I empty my bowels (sorry for details) I am already feeling build -up in stool. If I dont go then, by day 2 Im feeling so much discomfort from the constipaton that I have to take a lot of stimulant laxative to get it out.. Then I spend several hours with severe diarrhea! The painkiller (methadone) doesn't work so Im dealing with the pain issue as well. Its a constant cylce...Poop all day, build up the next and take laxatives to get it out...the laxatives are making me sick..
This is a fairly new thing. I ve been on the methadone since last July. I decided to titrate down in Nov (i was 40 mg) due to constipation. Now Im at 17.5 mg; the above issue started happening a couple months ago. Pain docs hasnt addressed the issue yet. Pelvic gyn is clueless about it,but says maybe its from tirtrating down. Another guess is that the nerve is making me feel constipataed ,when Im really not by why all of a sudden?
Went to a gastro doc last night.. he gave me a newer med called Linzess to take once daily before breakfast and wants me to go off the strong laxatives and really up the Miralax a lot
But Miralax is not strong enough and takes a long time to work ...its not enough for opiod induced concstipation. A stimulant is needed from all my reasearch

Its my understanding that to fend off opiod constipation you must take a laxative with your medicine-with each dose... to prevent constipation.
With Linzess the once a day dose
would prbl'y induce more build up sooner right?
Linzess is a "bowel regulator" from what I read, so I don't know if its for my situation?
I described to the gastro doc just what described here and the above is his recommedation..

Does this side effect happen to anyone? What can do to stop this? Im sorry to be alway asking questions ..but nothing seems to work.
Help!
PS. Is there another opiod med that is less constipating than methadone? I think my doc finally is seeing that I must get off this drug completely, asap!
I am awaiting a pain pump trial but it will be a while before it happens.
Thx so much
Kathy

So sorry you're still having these unpleasant difficulties, I do sympathise.

Linzess/linaclotide is fairly new, I gather, and there doesn't seem to be much information about it online. But from what I can find out about it, there isn't anything else around that works quite like this particular medication, and it does seem to work very well indeed. The info that I can find says that you need to take it before breakfast, at least half an hour before you eat, without fail, every day. It also says that you should see 'best results for constipation' - whatever that means! - during week two. So don't expect to get instant results with this particular medication. It seems to be clear that you need to keep taking it. Are you on 290 mcg or 145mcg, by the way?

In fact it sounds amazing. In fact if my current difficulties don't clear up (bowels still not right) I might start finding out if it is available over here.

The feeling of incomplete evacuation that you mention immediately after having a bowel movement is very common when someone has chronic constipation. The sensors in the bowel are quite complex, and the feedback system can get confused - and when you add a malfunctioning pudendal nerve into the mixture - well, you can just imagine that there are some sensations arriving at the brain that just aren't correct. Don't worry about it. I know it isn't very nice, but - well, let's hope it settles down.

I really do think that you should take the gastro doc's advice. Yes, Miralax takes a while to work, but it does work. I remember the practice nurse telling me that even in stroke patients where the person is completely paralysed, taking Miralax/Movicol will do the trick. They were very reluctant to give me stimulant laxatives in case I got into the situation that you are in now, needing more and more to get the same effect. I just had to take lots of Movicol, and my goodness it was lots. (Between 3 and 8 a day)

With regard to build-up. I understand your concern with regard to this. Are you actually hungry? Or does food make you feel nauseated? The body is very good at telling us what it needs - we just need to listen carefully. I would suggest that you take care to keep the bulk in your diet to a minimum, and stay well hydrated.

I do think you've done really well to get down to 17.5mg, by the way.

I had to give up any opiate drug years ago. It made things much worse because of the constipation.
I still deal with constipation. What works for me is senna and ground flaxseeds.

Ray

The added senna and miralax seem to help but I am getting off my opiate hopefully the end of the week. Take your time titratring and hope things sort out and maybe you just need to give the new drug some time to work, I hope it kicks in shortly!
Janet

Hi Calluna
Thanks so much for your detailed reply. Thx for explaining why you feel Im getting the weird reaction. and thx so much for trying to find info on Linzess. There is not much out there.
No doc has ever bothered to answer my questions on my opiod constipation and Ive been so scared, confused. I think if pain docs are going to Rx opiates they have an obligation to help us manage the constipation. Sick as we are ,we don't need this guesswork.
I have been eliminating a bit better in the past few days.. but still take the Duclolax. I lowered the dose of it a bit,as it was making me very cramped up and nauseaus.
I also am increasing the Miralax. He said BTW that is very safe! Im doing some natural things like plain aloe juice etc.
I will start the Linzess I think, He has me at the lower dose.
Just scared to take only it and Miralax (even at a high dose)No stimulants in there ...scared of ending up in the ER for blockage..But he wants me to take it as you described and double/triple the MIralax.

If you need more info about Linzess I can ask the gastro doc. I always wonder if they are speaking from their patient's experience or just repeating what the drug rep taught them!
I hope you can get your issues straightened out too. So frustrating.
What a subject huh!
Thx for the encouragement re' the titration down to 17.5mg of methadone..Funny tho, the pain has been at it's worst this week, so Ive decided to go back to 20mg until my pain doc helps me find other temporary medicine options ...there are many drugs I haven't tried. But he doesn't seem to have any suggestions but the methadone!
I emailed him and assured him that it has not helped very much in 8mos of use.
he has not been timely in his responses, so am hoping to find a more caring determined doc in the NY NJ area.. I can't understand how they just leave you hanging when you ask for help with severe pain.
Thank you again for your timely and detailed answers. Its very helpful and re-assuring ..Best wishes to you!
Thanks to all who responded for your encouragement.
Kathy

I am on 130 mg of Morphine and Percocet a day..

I take up to 8 Colace caps/day, two per meal usually and 2 right before bed. I also eat about 6-8 prunes as a snack, and drink 8 oz of prune juice right before bed. After trying Ducolax, Miralax, and Citrucel (with no relief) I changed things up after researching the internet. I actually found a website where opiate abusers have a forum to help each other. I figured these people take huge amounts of the drug and would know better than anyone on how to deal with constipation... I was right! The prune has been my biggest help IMHO.

Also, I make sure I drink several cups of coffee in the morning (coffee is a proven bowel stimulant). It is an excellent catalyst to get things moving.

Thanks to the above strategy I am able to go the bathroom every morning.. I think that most people would consider that "regular".

Good luck -

Matt

Thanks Thunderman for all your ideas..
I think I have to change things up too, as my body has become used to Dulcolax. Its also upsetting my stomach.
I tried going down one more incremnent on my useless pain med-- methadone but the rectal paain became too severe for me to stand up, so the med must help a tiny bit!

Anyway I take Peri-colace also since it has the stimulant in it as well as the softener.. Im afraid that nothing will 'move' without a stimulant
Going each day in great so your plan is working.. thats great!
I have IC bladder issues as well...maybe nerve driven so I haven't' t been able to drink much coffee in my 6 year ordeal, (some foods and bevs anger my bladder and I feel urgency, frequency and burning) but it may be worth trying decaf coffee to help manage constipation. I love coffee and it used to do the trick back in days before all this stuff started! I do eat prunes too and have risked drinking warm prune juice as it sure helps ..(tho its also a bladder irritant) I have the double whammy of bladder issues and now rectal pain..But the latter is the worst. There is a tea called "smooth move" that seems to be a safe stimulant and helps in combination with other things.

Im so happy your neuro -stimluator test helped. Where were the leads put? I understand that some docs are putting the leads in areas closer to the PN. I had a sacral nerve stim test in October with no change in pain.. it just felt like tapping on top of the pain..but I suspect that it may not have been put in the optimal spot.
So now Im waiting for a pain pump trial with a doc here in NYC. I was all set to do it in March but the doc and his office got their wires crossed and had me signed up for the wrong procedure. Im re-scheduled for May and trying to hang on until then!
Would love to see the doc "lotta nerve" saw as he seems on the ball. He is out in LA.
What type of rectal pain do you have? Mine is throbbing like an incredible toothache in the butt crack...
Do your meds help at all? My pain mgmnt guy insists on the methadone and won't listen to my requests to try something different.. (Im looking for another doc but in NYC pain mgmt for pelvic pain is hard to find.)
I also use 12mg dilaudid rectal suppositories but am starting to suspect they are a big source of my constipation...But they are the only thing that helps in the least.

I read your post about music.very entertaining and nice to hear something different for a change!
Thanks for posting your regimen and good luck with the neuro stimulator!
Kathy

Kathy - sorry to be going back to what we were talking about before! - but I am sure you are right about the Dialaudid suppositories. I have just looked up what these are, this is a trade name for hydromorphone. Yes, they are constipating.

Decaff coffee - well, the thing that helps is the caffeine, with regard to this...

However! - one thing that is worth knowing. With your Miralax - or rather, half an hour after you take it, have a hot drink. It helps the gastrocolic reflex into action. So maybe if you want to have decaff coffee, have it then. Or have tea. Or indeed, hot water with lemon. Just as effective.


Now - please, could I urge you - do follow your doctor's advice - do start the Linzess. Straight away, tomorrow morning. This is what is going to see you through, long term.

Also, could I suggest that you start taking senna? Just simple senna tablets. Yes, this is a stimulant laxative, but if you are going to stop taking Dulcolax, you will need something to take its place for a while. Yes, you have Linzess, long term, but in the short term you will be more comfortable with something else as well, besides Miralax.

Could I ask - how much Miralax are you taking each day, at the moment?

I do hope that some of this is helpful.

Well, it is morning here now - and I just wanted to add - Matt, what an absolutely brilliant idea to go to a forum like that other one! Except I just have this image of all those people queuing up in the supermarket to buy packets of prunes...

I would just say though - beware, because going to the bathroom every morning does not necessarily mean that all is ok.

Before I had my pelvic reconstruction surgery with all the mesh, the surgery that started the PN - at that point I had POP. I was taking psyllium fibre supplements, as I had been advised. And I was going to the bathroom three times a day regular as clockwork, until one day everything came to a halt, and I had horrible abdominal pain and bloating. Off to the emergency room, turned out that the bowel was completely blocked and gut had come to a halt. Xray showed large bowel to be 'grossly distended', to my utter horror and disbelief. Yes, three times a day, but not enough throughput, if you follow me, and things had gradually been backing up. It took weeks and weeks of large doses of Miralax/Movicol to get back to anything resembling normality, before surgery to deal with the POP.

So just a cautionary tale really. Regular does not necessarily mean ok. Also, beware of supplementing with fibre. I've been there, it can be very bad, it can solidify into a sort of cement in the gut...

Mind you, I can't imagine prunes doing that!

I have looked up Colace - this is sodium docusate, it is a stool softener which works in the same way as Miralax/Movicol. And prunes work by increasing bulk and also by acting as a mild irritant. I have also looked up Peri-colace, this has senna in it as well as the docusate. You all probably know this already....

There does seem to be a lot more choice with regard to over the counter laxatives in America than there is over here. I have no idea why!

Hi Calluna,
Just wanted to say thx for all the research you did on laxatives.. I sure appreciate it. Its nice to have an online friend on the other side of the big pond!
Yes we sure do have a lot of laxative choices here in the US. The aisle in the pharmacy is overwhelming. But with everything I've learned, I avoid the fiber stuff and go for the Stimulants and softeners. Peri-colace seems to be a pretty good product for me containing the stool softener and the senna (the stimulant) My research said that patients taking opiates should take a stimulant laxative along with their dose of pain meds. The only problem there is sometimes if one has had the "runs" all morning, you don't want to take more of the product when your stomach hasn't settled down ywt. Thats always a dilemma for me as I don't want the gut slowing down and starting to backup cause you've skipped a dose of laxative..
Wow what a subject!
Oh about the Miralax, I may be overdoing it but I take at least a dose and half (it's dosed by filling the cap on the bottle to the fill line) or even 2 doses with each dose of methadone. (so that's 2 X daily at least) Then I sometimes add a dose or 2 or with dinner and/or lunch, esp if I feel a bit backed-up. Gastro doc says its safe, and better to up the dose on Miralax and lower the dose of Dulcolax!
I do need the Dulcolax tho, as even before all of this PN stuff I was mildly constipation prone, so it takes more to 'move' me.
The Peri-colace is a little less aggressive so that's another one I use alot lately.. There is also Senne-a kot S...the same idea as Peri-colace but for some reason the Peri-colace agrees better with me and you have to take less pills for the same effect.

Thx for the advice on the Linzess. It sounds like think this is a good product. I didn't know much about it. The gastro doc handed me a bottles of samples, so I just wasn't if sure if he was just giving out the latest thing the drug reps dropped off. But he did advise so guess you are right!
I am very jaded these days when it comes to trusting docs.
Thx so much for researching it.. I will give it a try. Do they have it in the UK, yet?
Have a good weekend and Thx again.Kathy