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I've been dealing with this for a long time, not sure what to do anymore.

constipation chronic constipation mixed ibs anxiety disability

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#1 emily785

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Posted 04 July 2018 - 12:54 PM

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I'm new to the forums, so forgive me if this gets long. Some backstory, to introduce myself:

 

I'm 23, and I've been dealing with what I think is IBS of some kind since childhood. I've always had trouble pooping, my mom says it was an issue even when I was a baby. I took colace when I was little, but that didn't make my poop normal so much as slightly easier to get out a couple of times a week. I still had strange episodes anyway - I'd have to go NOW, sometimes to the point where I couldn't make it to the bathroom in time, but when I sat down everything would still feel stuck and incomplete. It was and is really embarrassing, mainly because I can't control or sometimes even feel when I leak. I've been wearing pads since long before I started getting a period, but it's the only way I feel "safe" from making messes. It's given me so much anxiety and makes me not want to leave my house and do things when it's really bad. I worry about what's going to happen when I have a job. On the flip side, I sometimes go days without anything at all. It's better than leaking all the time and having to go over and over again, but it's also super uncomfortable when I do finally go. I know this isn't "normal," but it's my normal.

 

I saw a gastroenterologist for the first time when I was around 12, and she gave me a colonoscopy prep kit (which was awful... I hope I never have to do it again until I actually need a colonoscopy) and Miralax to try to help clean me out. The Miralax made me go every single day, but it was still really messy and hard to feel finished. I think I kept up with that for a couple of years (it's hard to remember now), but by the time I was in high school I stopped. I figured I knew my body and would rather put up with my normal than something that made me feel worse. I've seen other doctors for these same issues since then, and they've all said the same exact thing: That must be horrible, but we don't want to do anything too drastic, so just change your diet, exercise more, drink more water, and take colace/Miralax/docusate sodium/etc./etc./etc. and let me know if anything changes.

 

Nothing ever does, at least not permanently. I feel like they don't understand what the root cause of my problems actually are. They just throw softeners at me because they're what works for other people with chronic constipation. Like I said I feel like I know my body pretty well at this point, and I think a major reason why I've had these issues literally forever is because I have cerebral palsy... It obviously makes my visible muscles weaker, but I think it's also affected my stomach muscles, which makes it harder to push. Sometimes I push so hard I shake and give myself headaches. My CP has made me food sensitive as well, and I've always had a "sensitive stomach." The wrong foods, too much food in one sitting, stress and anxiety, not enough activity, having my period, and traveling all wreak havoc on me. My "flares" can last anywhere from a few hours to a few days, sometimes up to a week or more. I can fluctuate between having constipated (but still pushable) poop and "constipated diarrhea" within what feels like minutes sometimes. It's frustrating not knowing how to make myself feel better during one; I mostly just deal with it and hope it fixes itself on its own. Not once has a doctor ever suggested IBS, or that there may be an actual, diagnosable problem. 

 

My family is so used to me being like this that they just brush me off when I wonder if I might have it. They know I hate living like this, but they just take what the doctors say at face value. I've spent so much time stressing and crying about these problems and it feels like no one really listens to me. I wish someone would, if not to give me a cure or solution then to just make me feel validated. I think that's why I decided to start posting here, so I might feel less alone. If you don't have any answers for me that's fine, I'm more than happy to vent and commiserate laugh.png



#2 annie7

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Posted 04 July 2018 - 02:09 PM

hi emily and welcome to the board.

 

i am so sorry for all of your problems. you have really been through a lot.

 

yes, i think you are right that your cerebral palsy is the root of your constipation problems.  constipation is very common in people with cerebral palsy. 

 

i'm wondering if the diarrhea that you get is the result of you being so constipated (impacted) that your body does a sort of self enema (D) in order get some of the stool out.

 

i'm not a doctor but since CP affects the muscles, it could that you have colonic inertia--slow transit constipation.  a sitz marker test (colonic transit study) would diagnose that.  i was dx'd with it.  

 

also you mentioned having trouble pushing.  you could have pelvic floor dysfunction.  i was dx'd with that also.   with pfd, the pelvic floor muscles don't coordinate and/or relax properly to allow easy passage of stool. ineffective pelvic floor muscle coordination results in inadequate relaxation of the pelvic floor while attempting to have a BM. the puborectalis muscle tightens and contracts when it is supposed to relax to allow passage of stool.  it could be that your CP is exacerbating this problem. 

 
a defecatory proctogram test will show if you have pfd as well as reveal if you have any other outlet problems. an anal manometry also help  diagnose pelvic floor problems.  
 
biofeedback and physical therapy can be effective in correcting pfd. 
 
one thing--you definitely don't want to strain.  straining is counterproductive and just locks those pelvic floor muscles up all the more. 
 
have you tried  elevating your feet on something like a footstool, shoebox etc while sitting on a toilet.  elevating the feet can help straighten out the anorectal angle and allow for a more complete evacuation. so can using a squatty potty.  you might have to experiment to find the right height. i first used a foot stool, then a large shor box and finally bought a squatty potty.
 
yes, osmotic laxatives like miralax can be very messy. have you tried using stimulant laxatives like dulcolax or senna?   that's whay my gastro docs told me to use since none of the  constipation meds worked for me.  have you tried any of the C meds available--linzess, amitiza or trulance?    
 
please try to find a good gastroenterologis to help you--one who specializes in motility issues.  you definitely need a gastro doc who is more proactive than the ones you've been seeing.   often gastro docs who work at a teaching hospital or motility clinic are more knowledgeable, proactive and up-to-date than regular gastros.
 
you might want to take a look at this thread. it has a lot of good ideas for dealing with chronic C:
 
 
one thing--you are definitely not alone.  there's a lot of us here with C problems.
 
good luck with everything.  wishing you all the best.

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


#3 IBS-C-girl

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Posted 04 July 2018 - 02:24 PM

Emily, Im so sorry to hear that youve been struggling with this since childhood. I just want to give you a big hug. I agree and think that cerebral palsy could be related to the constipation, but I also wonder if you could have ibs as well.

Would this be something a neurologist could help with? I really dont know, but it makes me think that it is more an issue of the nerves in your intestines not receiving signals to contract correctly.

About getting a jobI dont have a job right now either because of my constipation issues. I get constipated diarreah too whenever I use stuff like Miralax! I told that too a doctor once and he said thats impossible. Well I think you and I can both agree its very possible!!! You have friends on here who can definitely commiserate with you, empathize for you, and always listen. Sending all my happy vibes to you.

#4 annie7

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Posted 04 July 2018 - 02:40 PM


Would this be something a neurologist could help with? I really dont know, but it makes me think that it is more an issue of the nerves in your intestines not receiving signals to contract correctly.

 

 

actually there are neurogastroenterologists.  yes, maybe that's the kind of gastro doc you should see. 


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


#5 emily785

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Posted 04 July 2018 - 02:58 PM

 

hi emily and welcome to the board.

 

i am so sorry for all of your problems. you have really been through a lot.

 

yes, i think you are right that your cerebral palsy is the root of your constipation problems.  constipation is very common in people with cerebral palsy. 

 

i'm wondering if the diarrhea that you get is the result of you being so constipated (impacted) that your body does a sort of self enema (D) in order get some of the stool out.

 

i'm not a doctor but since CP affects the muscles, it could that you have colonic inertia--slow transit constipation.  a sitz marker test (colonic transit study) would diagnose that.  i was dx'd with it.  

 

also you mentioned having trouble pushing.  you could have pelvic floor dysfunction.  i was dx'd with that also.   with pfd, the pelvic floor muscles don't coordinate and/or relax properly to allow easy passage of stool. ineffective pelvic floor muscle coordination results in inadequate relaxation of the pelvic floor while attempting to have a BM. the puborectalis muscle tightens and contracts when it is supposed to relax to allow passage of stool.  it could be that your CP is exacerbating this problem. 

 
a defecatory proctogram test will show if you have pfd as well as reveal if you have any other outlet problems. an anal manometry also help  diagnose pelvic floor problems.  
 
biofeedback and physical therapy can be effective in correcting pfd. 
 
one thing--you definitely don't want to strain.  straining is counterproductive and just locks those pelvic floor muscles up all the more. 
 
have you tried  elevating your feet on something like a footstool, shoebox etc while sitting on a toilet.  elevating the feet can help straighten out the anorectal angle and allow for a more complete evacuation. so can using a squatty potty.  you might have to experiment to find the right height. i first used a foot stool, then a large shor box and finally bought a squatty potty.
 
yes, osmotic laxatives like miralax can be very messy. have you tried using stimulant laxatives like dulcolax or senna?   that's whay my gastro docs told me to use since none of the  constipation meds worked for me.  have you tried any of the C meds available--linzess, amitiza or trulance?    
 
please try to find a good gastroenterologis to help you--one who specializes in motility issues.  you definitely need a gastro doc who is more proactive than the ones you've been seeing.   often gastro docs who work at a teaching hospital or motility clinic are more knowledgeable, proactive and up-to-date than regular gastros.
 
you might want to take a look at this thread. it has a lot of good ideas for dealing with chronic C:
 
 
one thing--you are definitely not alone.  there's a lot of us here with C problems.
 
good luck with everything.  wishing you all the best.

 

 

Thanks for the kind reply, Annie! I'm glad someone understands a bit of where I'm coming from. Every time I've seen a gastroenterologist it's been at a great teaching hospital, which is why it bothers me that their responses to my concerns have been so one-size-fits-all. Back in the day my pediatrician mentioned to my parents that my trouble pooping (like just about every other issue I have) has to do more with my CP than anything else, but I don't think they really took it seriously. To clarify, I seem to get "constipated diarrhea" (where it's way too soft but still hard to push) more than actual diarrhea. If I eat too much or too fast it's definitely diarrhea, but other than that I'm constipated almost all the time.

 

I think I'm in the middle of something right now, funnily enough. I don't think I'm impacted, because I feel fine other than not being able to finish, but it's been a rough few days. I ate a lot of food at a party over the weekend which caused some diarrhea the next day, and since then it's still been watery/mucus-y, but it's a lot harder to get out and leaks a lot. I don't think my anxiety about when it's going to end and if it's going to get worse is helping at all, but (no pun intended) I feel stuck. I want this to end ASAP so I'm not miserable and anxious on vacation next week (even though like I said, traveling does tend to make things worse). I've tried going back to eating the way I normally do - normal portions, nothing that I know triggers me, etc. - but it hasn't seemed to make anything better yet.



#6 annie7

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Posted 04 July 2018 - 03:26 PM

oh dear--i'm so sorry that you've gone to great teaching hospitals and haven't gotten any help--just the one-size-fits-all stuff. that's terrible!   is it at all possible for you to go to the mayo clinic or the cleveland clinic or someplace like that--a motility center.  it's really a shame--a disgrace, really-- that nobody takes you seriously. 

 

what you're going through right now sounds miserable.  it's hard having constipated diarrhea, where you can't get everything out.  i hated that feeling of having stool stuck in my rectum or higher up  and not being able to get it out.  would a glycerin or bisacodyl suppository help you at all?  or an enema? would stimulant laxatives help?

 

and yes, you're right--anxiety always makes things worse.  which doesn't help with the anxiety, either.  and traveling always made things worse for me. 

 

i wish i had some answers for you.   and i really wish you could find good doctor--one that would take you seriously.   


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


#7 Summerkrae

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Posted 05 July 2018 - 08:16 AM

Emily, I am so sorry to hear of your issues. You have gone through a lot. I have had chronic constipation for a long time and would suggest doing an all natural fixed to try to get yourself back into shape. Eat two prunes in the morning with breakfast. I like orange Essence prunes (Kroger) they are delicious. Also try to use 1 teaspoon of fiber in your breakfast drink or shake

Then at lunch I eat two or three apricots with your lunch. Eat two more prunes after supper. For a snack in the evening perhaps have a few strawberries red raspberries, blueberries or pineapple chunks. Then at bedtime drink a small 5.5 ounce can of Prune juice or half a can save the other half for tomorrow This should get you going naturally without much straining. Before I started doing this about a week ago I had taken 17 mg of MiraLAX every morning for the last 10 years. The MiraLAX or poly ethylene glycol did help me to have great bowel movements every day but it seems like I would get sick feeling in the morning after I took it and lack of energy. No I decided to stop. I hope this helps you. Good luck





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