can't get it right

[kathyd]

Hi folks
I have had trouble managing bowels issues from my pain meds as Ive posted about several times. Im banging my head against the wall trying to figureout what to do and what to take to prevent the constant urge to poop and feeling of stool in the rectal vault

Medicine wise I have a relatively small amount of dilaudid in my pain pump along with some bupivicaine also at a lower dose than previously. I am with a new pain doc who is still getting to know me and my issue.

Ever since starting with pain meds in summer of 2011, my then pelvic gyn told me to" stay ahead "of the constipation from pain meds by taking laxatives proactively. She warned of the possibility of getting impacted if wasn't vigilent with doing all I could to induce regular BM's
At the time she gave me Amita which worked fine.

I am on different pain meds now than I was when she rx'd the Amitza.
I tried Amitiza again this year (several months ago), but had no "output"after the first pill. I realized it may take awhile for the body to get used to a new laxative.
My body is probablyused to my usual laxative regimen (which includes Dulcolax ... and various other over the counter laxatives and softeners and was probably expecting that. After awhile one needs more Dulcolax to induces a bowel movement. I average about 2 pills daily.
I know folks who take more than that, but I don't want to be dependant on that laxative to poop.

Long story short, I "feel' constantly full ( bowel wise) .Even if I emptied a lot on the previous day, or even earlier the same day I feel a strong urge to poop later in the day. I feel like there's something there (like a large amount of stool in the anal vault, even after I recently emptied! It doesn't make sense
Being that my PN pain in the anal area, that urge/pressure is more painful than the average constipation feeling.

I now use a variety of laxitives as I remember the doc saying do "whatever you can to get it out"..
However Im wondering if maybe the laxatives are creating the urge.
I take 1 or 2 Dulcolax at bedtime,, sometimes with Miralax. Sometimes I add Sennakot
If no bowel movement the next Am, (and lately nothing happens till later in day)
I'll use a peri-colace... That has a stimulant in it as does the Dulcolax.
Also I use stool softeners..I take 2 -3 a day.. I add in magnesium...(Im trying everything to avoid having this full bowel pressure , but I think Im overdoing it, and maybe the laxatives are creating the urge?
I will tell you if check the area (sorry for TMI! ) there surely is stool there! of a soft pasty consistancy.
Im thinking maybe the stool is too soft to move rapidly thru the colin on it's own?

The output I have is soft and in small to medium pieces rather than one huge amount. I go almost every day or every other day, but still have this awful need to poop feeling.
I should also add that my body's schedule is off. Because of pain with standing, I lay in bed napping most of the AM. (
I do it to avoid pain which begins when Im on my feet.
This in turn keeps me up later at night though, well after midnight.
So lying in bed in the AM means no bowel movements until I am moving around ..usually.
I feel fine after my first meal of the day...(usually around noon)
But after my lunch and dinner...the pressure to poop feeling starts... which mean more laxative to get it out.
Im beginning to think the laxatives are causing this ..Does this make sense?
By the way I also eat fruit and veggies drink water take walks etc. but I need to do more of all of that. (I have IC bladder issues so I can't tolerate citrus fruits or drinks like coffee to my knowledge. My bladder issues vary.. hus I think the pelvic floor dysfunction is the main culprit here
I am not eating as much as I need and want to, because the urge feeling occurs after meals..
This is bad as I am terribly underweight to begin with.

The bowel affects the bladder.
I seem to have a severe case of Pelvic floor dysfunction.. which may be a big part of my anal pain as well?

I hope to see a gastroenterologist tomorrow, if hubby can drive me.The docs have not been too helpful with this. The Pain doc refers out to gastro doc.The gastro doc doesn't know much about PN or IC, so frustrating.
I don't think my GP doc would be helpful, as with regards to my PN like pain, she calls it "over her head".

I am afraid to cut back too much on the laxatives as my big fear is becoming impacted (This has never happened and I have no signs of it, according to my pain pump nurse.) But I need to make changes asap.
What do you folks think of my theory that the laxative products are causing this urge?
I know it could also be part of my PN issue.. however I tend to think the meds are more causal, due to the timeing etc.
I am trying to see a PT soon.
I have had much physical therapy in the past 8 years , without much change.
But a well respected PT that knows me well,has some new ideas she want to try in order to address my anal pain issues and the IC issue
However I am waiting to get on her schedule (very busy)
Thx for any thoughts folks you can offer on this bowel issue..I feel like Im banging my head against the wall and don't know who to turn to,
I definitely think Im taking too much laxative, but its scary having the painful urge. I just want it to come normall as it did prior to pain meds.
Thx again ...appreciate any help you can offer!

[stephanies]

I have used enemas from time to time to deal with constipation from meds. Some doctors approve of their occasional or even regular use and some prefer them not to be used too much, but I feel like they can help get rid of the feeling you describe. Because of your rectal pain, if you do try this, I suggest inserting the tip of the enema very slowly and carefully to avoid causing more pain.

[janetm2]

Hi Kathy,
This is a tough one. I was going to suggest Amitiza (after reading realized you tried but maybe not long enough) or Linzess (I think you troed before?). It took awhile to get the linzess working and I hadto keep the other over the counter stuff (Miralax, sool softeners and Senna laxatives at full rate until the linzess started working) and I still take one stool softener AM and one dose Miralax in the evening. Senna would only be needed if something went amiss. I do understand the issues as I did get constapated and was in agony while adjusting. Then the doctor wrote a prescription and the insurance wanted me to switch to Amitiza!! I remembered the pain doc said there was something for constipation due to painkillers so I asked what and hs said Amitiza. Went back to my GP and she said she would just continue free samples of Linzess (insurance may cut a deal for linzess and switch to that from Amitiza so no sense going through adjusting to the Amitiza). The pain doc also said there is a shot they use instead of enema to clear you out (knowing those of us with PN are in enough pain) but did not ask what and hope not to ever need it!! I wish you well ans sympathize as my PN is also anal pain but not as bad as yours or I was pre-surgery. Some flares but I am coping and working at about 3/4 time until I retire.
Janet

[kathyd]

Hi Janet,
Thanks so much for your ideas. I understand so well what you are going through with the laxatives. It's hard when you have to wait for a product like Amtiza or Linzess to work as you're not sure if your body is just getting adjusted, or is it not the right drug..
Then if you need to add in more laxatives in order to go go you wonder if the brain/ to bowel system is getting more confused.
I saw a gastro doctor again yesterday and mentioned my concerns . I told all the things I was using .
He said I was using different laxatives that worked in different ways and at different times, so (as I wondered) my body was getting an urge to go at various times each day.

He said to pick one laxative that has worked before and use only that laxative,
going up on it very gradually to the level that works and stay at that level . I will keep in touch with him etc..

He wants me to use it every night but my thought is , if this successful level empties you completely one day, which is what happens (if it works too well!) and keeps you running to the bathroom
I would think you wouldn't want to use that same amount that night, as your stomach would need to calm down,
so I would guess use one less that night ? Then again I don't want things to have a chance to back up. He didn't mention it but I thought it wise to keep an occasion stool softener in the regimen
These questions I don't think to ask when with the doctor!

BTW I tried that shot only once last year (its called Relistor) . The thing with that is you can't use it if your system already has laxatives in it (at least I couldn't). It worked but made me quite sick briefly, --side effects --from having other laxatives on board. we assumed .
I think it's used every other day instead of laxatives.

Thx for your kind wishes. Im glad things are going well for you!
Thx for responding ...hope things work well for you too.

[janetm2]

Kathy,
I nope this gastro doc can sort things out for you. I am so relieved the Linzess works and I do not have to switch off it to Amitiza. Thanks for the tip on the Relistor I can see how that could make you sick. I got really ill trying to get ready for a colonscopy and realized it was due to them having me take two laxatives with everything else, that was just more than my system can handle. I am hoping to be past all that but you never know. Hang in there and get those questions ready for your next visit. Time for my Miralax!
Janet

[Violet M]

Kathy, have you ever tried colonics? Maybe some occasional colonics would help but of course you would want professional advice on this.

Violet

[kathyd]

Hi violet
Im must admit Im not sure what colonics is. My concern is does is cause weight loss? It seems like folks do cleanses to help lose a few lbs.
My family is a rarity in today's world-- we have to eat a lot to maintain weight
I am very thin, ( I weigh in the 90s's due to this illness)
But my normally healthy weight is about 117 at the most.. its genetic--- we aren't short but small built and small boned on both my mom and dad sides of the family..
(fast matabolism) My youngest child age 14 never stops eating,but is still the thinnest kid in her group of friends.

In fact my Mom at 86 now weighs over 125 lbs for the first time in her life,because she is sedentary.

What is colonics? Is a colon cleanse product that makes you empty completely like when you are prepping for a colonoscopy?

Thx for your reply!
Kathy

[Violet M]

Colonics is a procedure where you have the colon irrigated. If you did it on a regular basis you probably would lose weight but obviously you wouldn't want to do it for that reason and especially not on a regular basis but just to get cleaned out initially and then use . I remember a previous PN patient who had to resort to them. I'm not sure what all the risks would be -- definitely something you would want to research first.

Have you tried a basic home enema yourself yet? I know other PN patients have done them successfully before.

Violet

[kathyd]

Tux Violet for ur suggestion, re: colonics.
I Injured my finger recently m so havent' been able to type much lately.
I avoided the colonics for the reasons you mentioned: Weight loss....which is prbly why many people do colonics.
Im unique in being so underweight in today's world. Im not big on detox stuff as I need to eatthe foods that others must avoid in order to maintain my weight and hopefully gain. Detox to me seems to +weight loss. I am under 100lbs so can't afford to lose a lbs.

I notice that Laxatives will eventually seem to clean me out well, but the stool builds right back up again..odd , but prblu part of mu disease.
I have a very low dose of opoids in pain pump -tiny, compared to other folks and those who take oral opiods of course. So it shouldnt be too comstiptimg.
Prior to pump I was on methadone..also constipating , very much so, so my body has become used to having to take laxatives which I hate!

I do use dilaidid rectal supps for pain(have for over 2 years) but have been to ues less of them as Ive added in Baclofen/valium supps which seem to help a little and Im glad they are non opiate..
But the bowel issue persists on and off.... feast or famine.... doc had me on one strong laxative.... even that does now does not work the next day,, and have to resort to adding a laxative supps.. which then caused diahrrea and loss of water...I ve tired glycerine supps in the past ...they're pretty harmless but usually don' t work for me
Gastro doc wants me back on a system of nightly senna pills and daily laxative supp ..hate putting more supps into my painful area!

I did try enema once ..but same prbml,--hurt badly due to all my pain being in that spot..It was miserable and I had to stope.
Also my mom was big on enemas when I was a toddler (as was her mom --whose generation (of 100 years ago) was into that stuff--hmeopathy, colomics accordiing to my mom) So I have some yucky memories of being given enemas as a very young child so thats prbly is also why they are something I want to avoid.
Thx for ur suggestions ... would appreicate anyone's advice for natural ways to get that stool out from anyone with my issues. It just sits on the nerve area and i feel like it must come out ...the pressure is too much.
I will try the magnesium you mentioned Violet,
With my IC issues I had a flare once from calcium citrate, so when I saw the word "citrate", I got nervous..Does that have anythng to do wit Vit C?...that is a no no for Ic'ers..
Thx...all so complicated!

[bikelover]

Hello Kathy, have you tried Natural Calm?
http://www.amazon.com/Natural-Calm-Rasp ... tural+calm

I would swear by this product, not only it allows me to do the 2 when I'm occasionally constipated. It also helps with the stress and be well...more calmed and relax.

Normally, a daily bowl of papaya does the trick for me. I use Natural Calm when things get more tough..
Another thing I do is try to make dinners small. And another thing you could try is having 5 smaller meals instead of 3.