HElp me please.

[kathyd]

Violet,
I get the point .. stop posting regarding this yucky subject! I understand it's not something anyone wants to hear about or talk about online -least of all me...I can assure you. Before I even began writing about this I had l already tried many things, as I do my 'homework 'well.
Some days are better than others etc.

All I'm asking is: does anyone suspect that the use of laxatives each night at bedtime, is THE CAUSE for my constant feeling of urge? After all the job of a laxative is to produce the contractions that begin the process and produce the urge! I am hoping someone may have an answer to this question....that's all

Maybe a new member or someone can relate ,or has been in a similar situation and found a solution and will respond ..as I have gotten to the point where I've tried it all, racked my brain and is it ruining my life more than the pain itself..
They even tried turning down the my pain pump dose , but I was back to being bed-ridden.

About applesauce consistency , Violet what do you do to get that consistency ? I
For me things are always soft, but they vary, based on time of day. Later in the day, when I respond to the urge by trying to "go" yet again, (due to what is prb'ly a spasm ---not a true urge) , I get the peanut butter consistency you mention. I have been told to take Colace ,but don't know what amt is right,
as if hings are too soft,, maybe it may make it harder to get 'results''?
I'm assuming the advice of your Chinese medicine doc helps you with this. (the magnesium etc ) and not the use of Colace.

Violet I have tried some of the natural things you mention, and will try to get more exercise...walking etc, based on my pain levels.
I also use flax on cereals etc. I try to get down as much water, as possible, but know I need to drink more. it's quite filling for me, but I try.

(Tho I am an on an internal opiod drip) doctors have not given me much advice beyond "take Miralax", -- double it up it if needed or" keep upping your Dulcolax" . The latter is a very bad idea! I stopped using it awhile back.

Violet, from what I understand, you are no longer on opiates but still have some issues .The magnesium seems to be enough for you, but may not be for me.
I see my pain doc tomorrow and am praying he can help by telling me what his other opiate patients use. Maybe more magnesium is my answer or possibly prescribed meds, as the over- the -counter ones are a gamble -- with varying results.
I also plan to see a 3rd GI doc-- but here in- the NJ -NYC area, they seem interested mostly in doing procedures, not discussing opiate constipation!
Thus the reason I got no real answers the previous times I went. I pray this next GI has some compassion.

Also for me It's hard to tell when its a real urge or not.. this is the problem, when your pain is caused by" anal spasm". You can't tell what's a real urge and what's spasm.
So you respond by heading to the bathroom, as we are taught never to put off the urge to defecate.

Again sorry to bother you all . I thought this was a place to come for support when we are unsure what to do, or where to turn.
As we know the results of pain meds are bowel issues, at least for some of us.

I don't get much emotional support or advice from my husband; tho he is a good man, this is hard for him to understand as he has no problems of this nature. Thus I turn to the boards. BTW, anyone who doesn't want to read it doesn't have to.
(Sorry Violet, as a moderator I know you are the one who does read this stuff!)

I notice that some of my posts came through twice, as sometimes I get an error msg. so I have to hit "submit" again. So you must be seeing constant posts.
Again sorry to bother you all, just hoping eventually to hit on an 'answer' so that I can live my life without this issue as a concern.
Thx for your suggestion and Thx to NYT and all who have offered their advice to me! NYT, when I can get a ride to our health food store I will try your ideas!
Take care

[esthome]

Hi Kathy

I've read your posts on bowel movements and the urges you get. I have similar symptoms and for me the constant sensation of needing to go or having mild urges but not enough to even attempt, is because I'm not fully emptying. This is because I have a small rectocele and rectal intussecuption. Both are caused by a weak pelvic floor. My guess is that you're not emptying your bowels properly the first time around due to a functional problem. A consultant I saw recently told me that prolapse and pudendal neuropathy often occur together. I constantly question what is causing me to feel what - the prolapse or the nerve. I constantly have heaviness and pressure 24/7 in my rectum which I think could be the nerve but me having urges to go, I think is because my rectum has descended and traps stool.

A proctogram is the gold standard test for diagnosing the intussecuption and rectocele. I was examined by two gynaecologists who both said no prolapse which i can see why as I have no obvious bulge (which is symptom of rectocele) but I knew something wasn't right so went to see a top colorectal consultant. If you want to read more on this, I suggest looking at the Oxford Pelvic floor centre website.

I find 2 satchets of Movicol help me no end. It keeps my stool smooth and sausage like and is safe to take long term.

[Violet M]

Kathy, I was just trying to be humorous because even after all these years, it's uncomfortable to talk about such private things on the forum, eh?

You said the Milk of Magnesia worked well for you when you took it once. So it sounds like the magnesium works when you take it even though you are on opioids. I was just suggesting that maybe if you take the magnesium or miralax, whichever you like, on a more regular basis and learn what is the right dose for you there won't be so much up and down between diarrhea and constipation. If you start to feel things are backing up a bit, just take some extra magnesium -- at least that's what I do and it's really very simple. I can't say what's right for you though. Colace never did much for me and in fact seemed to make things worse in some ways so I've never used it much.

Violet

[kathyd]

Hi Esthome,
Thanks so much for all the info. I sent you a pm in answer to your post.
Hope you are feeling well.
Kathy

[kathyd]

Thx Violet,
Sorry if I didn't have a sense of humor. I am usually an easy going gal.
I am just very frustrated as it is such gross subject, and who the heck wants to spend a beautiful summer day reading or writing about it.
Just trying to get my busy life as a mom, back to normal.
Its good to know the Milk of Mag works, but half a cup--- 2oz is to little and 3-4 oz is too much... Maybe 2 an 1/2 plus some Miralax.
All guess-work and we're all different. I use Colace just to keep things soft, It "works," in that sense, but guess that's all it's supposed to do.

My pain doctor yesterday also prescribed Amitiza, as it worked well for me a few years back when my pelvic doc then, put me on it when I was taking Methadone for pain. ((I am no longer on that pain med.)

Meanwhile a member just wrote in this thread, as you prbly noticed, with the same problem as me and found out through a protogram given her by her color--surgeon, the reason for her symptoms.

I too was told I have a rectocele a few years back by my pelvic doc; then a colo-rectal doc examined me and said that if it ever became a problem for me, it would be years away... A few years later an experienced NYC PT examined me for rectocele and laughed, as she said it was so small it was barely there!.
I've asked my current PT about it and she doesn't seem concerned, and says its all anal spasm.
But thx to the kind advice of a poster on this thread with my symptoms, I will find another colo-rectal doc and get a proctogram and see if anything is going on. I had seen a colo-rectal doc about 6mos ago, but she dismissed me as a patient, as soon as I mentioned possible PN!
So hence my frustration.
Anyway, thx for the advice -- estsome, and you, and NYT, and everyone. And sorry if I was cranky.
This too will pass!

[stephanies]

Kathy,

My problems with constipation have been on the rise lately so I appreciate all the information that you and Violet have shared. I have been on 15mg morphine sulfate er, one in the morning and one at night, for many years without major issues. The only change to my meds is the addition of 10 mg. of Doxepin, a tricyclic antidepressant and occasionally .25 mg of Klonopin (about twice a week). I am trying to wean off the tricyclic since it's only use is helping with sleep to see if this helps. I have been always able to easily move my bowels with an enema if need be, but I have noticed the problem is getting so bad that that the enema is only doing a little. I bought some Miralax yesterday to try. For me, a bowel movement of any kind is a huge pain trigger and it not only triggers more rectal pain, but vulvar pain as well and the harder it is to move the bowels, the more pain that comes and persists all day. I had an appointment with a colorectal doctor to discuss a lipoma near my rectal pain as well as have him look for any other possible issues, but his office called to cancel as he was called into surgery. I am rescheduled for late in July. Today is a rough day for me as I miss my old life and am just exhausted from trying to make decisions (Take this med? See this doctor?) related to pain. I hope you are having a good day.

Stephanies

[kathyd]

Hi Stephanie
So sorry you are having a hard time ...I understand how you feel!
I just wrote you a post with some ideas, but this site made me sign-on again when I hit ' submit', and when i did, all the info I'd written was gone! so frustrating... ithappens occasionally with this site.
I will write again soon!
I will try it as a PM..
Hope you have a better week ahead and happy 4th of July.

[kathyd]

HI Stephanie,
So sorry for what your are dealing with.
I hate all the decisions --which doctor next, or which medicine to take tonight to reverse the effect of the opoid which ironically is
not helping as much as it should ( altho it helping some.)
I have a more knowledgable pain doctor than I has originally, and a great PT, who I've made some progress with in various areas,--still a ways to go, and not sure how much is due to my pain pump ( with only a moderate dosage of meds) and what else is due to PT.. I think for now both things are important.
the pain pump meds are a part of the constipation, thus we haven' been able to up the dose too far etc, I stopped using a pain suppository which we thought was responsible for my constipation issue and now use a mild combo suppof valium and baclofen, but the issuse remains so It may be a combo of the pump and my anal spasm etc. ) It is as bothersome as the anal rectal pain.
My Pt is working on it. There are no guarantees, but I'm praying her work is able to relax the spasms in my clenched pelvic floor,and relieve the pain and hopefully the bowel issues, probably caused partly by the anal spasm..

Do you live in the NY -NJ area? Somehow I thought remember you also saw Drs. Coady and/or Harris for pelvic pain?, unless i have you confused with someone else? ..
BTW do the meds mention help your pain? Do you see a PT? If you are in my area and are interested in PT, I can PM you and tell you more about mine. I have gained back all the weight I lost in my years of the pelvic floors issues; I attribute that to her work, and what I learned from her etc.
She has not been too helpful tho with alleviating my varying issues with constipation,thus the reason I posted here.I thought PTs were usually versed in that but guess that is not what she is trained in. She does do a clockwise massage starting on the lower right side of your belly and going up and around in a ' U' shape. working your way down to the colon area on your left side.This massage is done gently, but firmly is supposed to help get things moving. It's easier if someone does if for you, but still worth trying yourself.

Have you asked your pain doc for a recommendation of a med to take for your opiate constipation? I started taking Amitiza as rx'd by my pain doc; it has not worked too well yet, but don't know if you have to wait awhile for it to get into your system. It's a strong med, usually taken 2 times daily with food and a glass of water, (very important to ward off any side effects). This is also something your GI doc could try. I am waiting to hear from my pain doc to get some answers about it. Another med to try might be Linzess --a bowel regulator,
It helped a friend of mine, who is on a few opiates for her pelvic pain. I may switch to it, but will see what my doctor says.
By the way what is a lipoma?
I wish you much luck with the surgery and that all goes well!

If you are in the NY area is your GI doc someone whom you'd recommend? My son and I both need to see one. (If you'd prefer to PM me regarding that, that's fine). All these docs seem so booked schedule wise.
I hate seeing so many doctors! I always tell my hubby also that is God helps me and relieves this pain, it will be great not having to see doctors anymore.. and just have a normal life!
About that are you able to get out and about. I only drive locally, for past several months, whenever possible. I try to go shopping for something fun, that takes my mind off everything. I find the pain diminishes and I end up staying out longer than planned,
It makes me feel myself again,and it is something also recommended by my Pt and docs..
It hurts to drive but I have a cushion set -up (hubby and I have both come with a couple differnt ideas, whichI use.We use a vinyl toilet set with covered with a toilet seat "Roho" cushion and raised up by another cushion or something underneath with an opening for the anal area

About your sleep issue, you mentioned a drug you take that I am not familiar with. I take Clonepin nightly at bedtime. I was rx'd 0.5 mg . I only take half the pill ( and sometimes 3/4 of the pill at bedtime and it works great for sleep. Maybe that would help you, so that you could wean off the tri-cyclic?
Off to bed now.
Take care and hope you feel better,
Kathy

[kathyd]

Hi,
Has anyone taken Amitza for constipation from pain meds>. Does it need to time to get into your system, or is it supposed to work fairly quickly?
I started it last week and haven't seen much results for the most part.. am waiting to hear from my doc about it.
Thanks for any info.

[jpequeno]

I've also had these issues in the past. I was on oxytocin for several years and had to use laxatives daily. I never seemed to get the dosage right so I was also.having leakage and some accidents or the inability to go. Also, I was having more BM's so this caused flare ups of rectal pain and the 'foreign item' pain.

Eventually my oxytocin dose was at the top limit and my Dr. was unable to increase it. I was getting almost no relief from the oxytocin so we switched to BUTRANS pain patches. First I was weaned off the oxytocin slowly and felt no differently until the last couple of pills. I was surprised at how little releaf i was getting.

The BUTRANS have worked wonderfully compared to the oxycontin and have been on the same dosage for a couple of years. I do still have some breaklthrough pain and i have ketamine cream for that. They also cause no chronic constipation so I'm not having as many rectal issues.

The only issue with the patches is itching on the patch but my husband did some research and found that a nasal spray with a steroid could be used under the patch and also on top of the patch as needed.