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Seeking advice on dealing with chronic idiopathic constipation

CIC

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#1 Akiva

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Posted 21 May 2015 - 10:39 PM

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This is my first time posting here, so I'll start with my story.

 

I'm a 47-year-old guy who suffered frequent emotional abuse as a child. It almost did me in. If it were not for several family members and helpful counselors, I wouldn't have survived that trauma or be here today.

 

Seven years ago, I went through an extremely traumatic event that triggered PTSD from my childhood abuse. Overnight, my bowel habits changed. My pelvic muscles wouldn't relax like they used to. Intermittently, I had to strain to have a bowel movement. I could go daily, and I would feel fairly well cleaned out, but I still did not feel that I was evacuating completely. I talked to my doctor about it. He recommended more fiber, water, and exercise and said as long as I could keep going daily, I shouldn't be concerned.

 

Then I developed chronic testicular pain, lower back pain, and sciatic nerve pain three years ago, which the doctors couldn't pinpoint the cause of. I now think it was probably caused by the intermittent straining to go poop, and I feel stupid because I just didn't put two and two together when I was going through all the testing to determine what was causing it. I even went to a urologist who wanted to take out part of my right testicle. I'm glad I didn't go through with that.

 

A year-and-a-half ago, the constipation got much worse. I had to strain harder to go and was feeling super bloated upon waking in the morning. I accidentally discovered that if I filled my bladder really full, it would trigger the reflex to go. But that exacerbated the chronic pelvic pain. The constipation got so bad over the winter holidays in 2013 that I was referred to a gastroenterologist for the first time. I got the standard advice from him: eat more fiber (I'm nearly a vegetarian, so I was already eating tons of fiber); drink more water (I drink at least 8 glasses a day and have a water bottle by my side virtually all of the time); exercise (I already exercise 4-5 days a week). He also recommended a fiber supplement (Metamucil), which I started taking. It did nothing. It only made me feel more bloated and uncomfortable. So then he ordered a colonoscopy, which I had in March 2014. It came back normal, so he recommended Miralax. I would take a capful in the evening and a capful during the day. Unfortunately, it helped very little and made me feel pretty horrible.

 

So in September 2014, my gastroenterologist ordered a colon transit time test, an anorectal manometry test, and a defecography test to gauge my rectal functioning. I thought the tests would show that I had pelvic floor dysfunction because that seemed to make the most sense to me, but they all came back normal (though the manometry showed that my rectal function was "on the weak side of normal"). On my gastroenterologist's recommendation, I started on a magnesium supplement--500mg/day of magnesium citrate. That did help, but I still had to strain and felt like I was not completely evacuating my bowels. By April of this year, the mag citrate stopped working, and the fill-the-bladder trick stopped working as well. I could barely poop, and I was experiencing pain and pressure in my tailbone and rectal area. I was always bloated.

 

Two weeks ago, I was prescribed Linzess (the 145 mcg dose). Initially, it gave me the wicked runs, but at least I was going, so I was happy. But now its effectiveness seems to be wearing off. It takes longer for the drug to kick in, and I feel like I'm carrying around gallons of water in my gut. Yet I'm afraid to stop taking it because I'll be back to the straining, butt and groin pain, more bloating, etc.

 

I am so depressed that I'm not sure what to do. I have been an active person all my life who has worked hard to stay physically healthy, so this constipation has knocked me for a loop. I used to be able to eat and drink anything I wanted; now I eat like a total monk and constantly worry about whether I'm going to be able to #### out what I'm eating. I'm seeing the same counselor that I've been seeing for the last 16 years to help with the mental end of things, but it's still very difficult to deal with. I am so anxious and stressed out because I can't sleep, so I can't concentrate on my work. I have to pop a Xanax before bed every night just to keep my mind from racing, and I have been referred to a psychiatrist, who I'll be seeing in two weeks. I am the sole breadwinner for my family. Fortunately, I have a very flexible work schedule, but it's getting hard to concentrate on my everyday work tasks. I worry that I'll have to take a medical leave to deal with this, which will leave us with zero income.

 

At this point, I'm desperate for advice. If you have any supplements/treatments/medication that you'd recommend, or if you think it'd be worth it to see another gastroenterologist, etc., I'm all ears.

 

Thanks.



#2 annie7

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Posted 22 May 2015 - 05:26 AM

Hi Akiva.  welcome to the board

 

so sorry you had such a traumatic and abusive  childhood!  what a horrible experience that must have been.  and so sorry it triggered PTSD as well.  i've read that this sort of thing can trigger bowel problems and pelvic floor problems etc. so very sorry.  what a strong person you are to have managed to survive all that.

 

and so sorry you are now suffering with CIC.  i have had constipation problems since childhood (not due to abuse) and know it is a struggle to have to live with it daily.  

 

yes, if i were you, i would definitely find a better gastro doc. often gastro docs who work at a university hospital are more up-to-date and knowledgeable and proactive  about treating  CIC than other gastros.  

 

many of us here on the board have found that more fiber does not help and only makes us worse.  if your colon isn't working properly--if it's moving too slowly or not working properly--then dumping more fiber in there often does not help.

 

you could try the higher dose of linzess--it may help. or try taking it with a stimulant laxative--some people find that combo works better for them than taking linzess by itself. we have a lot of linzess threads here on the board. there are various ways of taking it that affects how it works. one of my gastros works at a university hospital. he has done research studies on linzess and has run clinical trials on it. he told me this and i found it to be true: linzess works on the same receptors that food does.  the closer you take linzess to eating--ie: 20 minutes before breakfast or even right after you eat breakfast--or whatever meal--the quicker it works. (generally speaking that is. like everything, your mileage may vary).  if you are having too much D with it, try taking it an hour before eating or even at bedtime. 

 

another script that can help with C is amitiza.

 

i have pelvic floor dysfunction and some other problems.  after trying everything, my gastros have told me to take whatever i need to go, which for me is a combination of an osmotic laxative (milk of magnesia) and a stimulant (dulcolax)  some of us do need a stimulant to go--tried as a last resort when all else has failed.  biofeedback has helped me somewhat with the pfd but it was not the whole solution due to the other problems.

 

have to tried elevating your feet on a footstool, shoe box or squatty potty etc while on the toilet? elevating the feet helps straighten out the anorectal angle and allows a more complete evacuation. i use a squatty potty.

 

about straining--here's a good u-tube video on how to have a bowel movement without straining.  

 

 

           

 

there are a lot of tips etc on dealing with chronic constipation here on the board.

 

i do hope you can find a better gastro and find some relief.  take care.


these are just my own thoughts. for expert medical advice please contact a health care professional.


#3 flossy

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Posted 22 May 2015 - 11:07 PM

Parts of our stories are the same. 

 

I would try this:

 

http://www.ibsgroup....-can-recommend/



#4 Akiva

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Posted 23 May 2015 - 05:43 AM

Annie, Flossy -- Thanks for your replies.

 

Annie, I've already covered some of the bases that you discuss. My gastro is part of a university hospital, though I don't think he's on the faculty there. To his credit, he is a highly-rated gastro in my area, and we tried to go the natural route with everything before resorting to the Linzess, though I wonder whether biofeedback would be helpful. That is not something we've talked about yet. I'm due to see him in a few weeks, but I'm going to try to get in sooner; I will discuss biofeedback with him. I'm also going to see what I can do about getting into see another gastro.

 

I do use a squatty potty, which seemed to help when I first started using it but doesn't help much anymore. I've used the techniques described in the video, which again helped at first but now are to no avail.

 

Flossy, I will take a look at the supplement you've recommended.

 

At this point, I'm taking things day by day. It's such a difficult time, though, and I'm trying not to lose hope.



#5 Akiva

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Posted 23 May 2015 - 05:49 AM

And I also have to add that one of the most difficult things for me right now is trying to figure out what to eat. I constantly feel bloated, so my appetite is low. I'm already a skinny guy (6'2", 170lbs normally), but I've lost five pounds since I started taking Linzess. I don't want to lose anymore weight (I want to gain it back!), but I don't know what to eat that I will still be able to poop out and that won't make my gut feel horrible. Up to this time, I've been eating lots of fruits and veggies, along with eggs, nuts, and lean meats (chicken and fish) for protein. I also eat a fair amount of whole grains--brown rice, quinoa, and popcorn mostly. I don't eat a lot of processed foods. I rarely eat dairy or gluten-laden foods.



#6 annie7

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Posted 23 May 2015 - 06:33 AM

yes, do give biofeedback a try if it's at all possible--at least go for an evaluation..  a biofeedback/physical therapy PT can evaluate your pelvic floor muscles and rectal function and will be able to tell you if you would benefit from therapy or not. i've read posts from people who passed their ARM's and  defecography tests yet still showed pelvic floor and/or anal issues with the biofeedback machine and who did benefit from biofeedback training. biofeedback training can help with both weak anal function as well as muscles that are too tight.  also discuss your pelvic pain issues with your therapist. he/she  can help with that as well.

 

are you still taking linzess? for some of us, it does cause bloating and a feeling of carrying around a lot of fluid in the gut, since it adds fluid to the gut..  that was my biggest problem with it.

 

as for diet--well we're all different. through much trail-and-error i have found that a diet lower in fiber works best for me.  i also eat a moderate FODMAP diet. which helps reduce gas and the bloating cause by gas.  i started low FODMAP, like they advise, but then gradually, one at a time, started adding in the higher FODMAP foods to see if they bothered me or not. 

 

some of us find that certain grains bother us. food high in starch, like rice, can be constipating for some.  there is a lot more info on all this on the diet board. 

 

and there's a possibility that you could have SIBO. that can  cause bloating, as well as constipation (or diarrhea) and also nausea. a good gastro doc can have you tested for that.


these are just my own thoughts. for expert medical advice please contact a health care professional.


#7 Akiva

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Posted 23 May 2015 - 01:00 PM

Annie, I stopped taking Linzess two days ago. It made me feel (and I still feel) full of fluid and am nauseous. I've not been able to eat much over the last two days. I had to take Dulcolax to have a bowel movement yesterday, which pretty much emptied out my bowels and then some. I'm not sure what to take now. I think I'm going to go back on the Miralax/magneseum and see how that works.

 

I will have my gastro check into SIBO.



#8 annie7

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Posted 23 May 2015 - 02:15 PM

so sorry you feel so miserable.  hope the miralax/magnesium helps and hope you feel better soon.


these are just my own thoughts. for expert medical advice please contact a health care professional.


#9 1kimmi4

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Posted 24 May 2015 - 06:03 PM

Hi I'm new here.. I have CIC have failed therapy with Amatiza, probiotics and like the rest of you have adverse affects with fiber(bloating fullness gas). Four weeks ago I was started on linzess 290mcg and had no results. I did experience palpitations really bad, typical fullness but stayed on the med for three weeks then my gi doc stopped it. I am continuing to experience headaches and have just found out that my liver function tests are extremely elevated.. Having an abdominal ultrasound this week.. Wondering if anyone else has had any of these symptoms? I am unable to find much info on really adverse side effects. Thanks for your feedback !

#10 annie7

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Posted 24 May 2015 - 06:40 PM

Hi Kimmi

 

so sorry for all your problems and side effects with linzess.  the only side effects i had with linzess were pain, bloating, gas and that gurgling, fluid-filled feeling.

 

i have read some posts from other people who've said that linzess gave them bad headaches--some so bad they quit taking it. and one other post on another board from an older man who said it gave him heart palpitations so his doctor had him discontinue it.

 

in case you haven't already seen this, here is a pdf file from the linzess website with the full prescribing information and listing all the side effects that were shown in the clinical trials, etc as well as lots of other information regarding this med:

 

                                      http://pi.actavis.co...p=pi&language=E

 

there is a phone number listed either in this section or somewhere else on the linzess website--can't remember where-- that your doctor can call to report adverse side effects not mentioned in the pdf file.  hopefully he will call this number to report it and maybe they will be able to give him some feedback.  or you could call them. that's what i would do. i do know of people who have called this number and gotten answers to their questions about linzess. 

 

 

hope your ultrasound comes out ok and that your headaches go away soon and that your liver problem resolves.  good luck with everything.


these are just my own thoughts. for expert medical advice please contact a health care professional.


#11 1kimmi4

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Posted 25 May 2015 - 10:54 AM

Thanks Annie I have called Forrest about the palpitations and plan to call them back about the headaches and my elevated lft's. The left upper quadrant pain/ fullness continues to be pretty intense too. Hope if others are having same symptoms my post may help if my symptoms are in fact related to the linzess I will post again when I find out something. Thanks!

#12 annie7

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Posted 25 May 2015 - 11:16 AM

oh good--glad to hear that  you called them and plan to call them back--they need to know about all this. 

 

I do hope your upper left quadrant pain begins to subside...mine did when I quit taking it.  but we're all different. fingers crossed for you......

 

and yes, I do think your post will help others.  thanks for keeping us updated!  good luck.


these are just my own thoughts. for expert medical advice please contact a health care professional.






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