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IBS-C Diagnosis becomes Rectal Hyposensitivity - any advice?

Rectal Hyposensitivity constipation ibs-c anorectal manometry

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#1 CellularPeptideCake

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Posted 30 September 2014 - 12:08 AM

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I have been diagnosed with IBS-C for a little more than a year and, like many of you, it has run my life into the ground.  I am constantly so bloated and uncomfortable that I can't so much as read a whole page of a book without starting over three or four times, let alone hold a conversation.  I feel like I am disappearing.

 

Tests:

1. Hydrogen Breath Test - (Normal)

2. CT Scan (Huge amount of stool, but normal)

3. Colonoscopy (Normal)

4. Gastric Empty/Enteric Motility Scan, performed twice (Normal)

5. Anorectal Manometry (Normal muscle control, but virtually no sensation at all in Rectum)

 

Medications:

1. Miralax, of course

2. Hyoscyamine

2. Xifaxan

3. Linzess

3. Amitiza

4. Sertraline

5. Enteragam

 

I got the results of the anorectal manometry last week and I am more hopeless than ever.  My doctors (including the heads of GE at several major hospitals) say that since my muscle functioning is normal there are no treatments available.  They all suggest treating my hyposensitivity with motility-enhancing drugs and have otherwise given up.  I don't understand how increased motility will help me if it simply speeds stool toward a dead rectum.  One of them has prescribed daily enemas, but even when they are successful I don't feel fully evacuated and it doesn't relieve my bloating and distention.  The most I've gotten out of a 2-quart enema is a series of small movements with the consistency of silt.

 

Has anyone had any experience coming back from Rectal Hyposensitivity and its associated symptoms?  I feel like I'm losing my mind.  This all started so suddenly for me I can't comprehend why my rectum would, one day, stop sensing stool.  The idea that there is no treatment is truly terrifying to me and I don't know if I could live like this.

 




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#2 annie7

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Posted 30 September 2014 - 04:44 AM

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HI i have had chronic constipation for over 50 years. i have been dx'd with slow transit constipation, pelvic floor dysfunction, a rectocele, megarectum and yes, rectal hyposensitivity. my gastro docs and surgeon all have told me to take whatever i need to go which for me is a regimen of stimulant laxatives (dulcolax) and an osmotic--milk of mag. otherwise i have no urge at all and cannot go. so at least i am getting an urge and can have a BM on this regimen. some days the laxatives work better than others. and of course i first tried everything else before resorting to stimulants.

and yes, rectal hyposensitivity is a difficult and frustrating thing to deal with. we had a recent thread on here discussing that. here's the link in case you haven't already seen it:

http://www.ibsgroup....yposensitivity/

as mentioned in this thread, the only thing i've read that might help is the balloon expulsion training. my gastro doc also advised i try this. and i did but unfortunately it did not help me. but really--you should try it. don't let my experience discourage you. if you're as desperate as i am, it's worth a try. and it has helped some people.

http://www.ncbi.nlm....?report=classic


good luck. wishing you all the best.

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


#3 balancedgrub

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Posted 02 October 2014 - 10:46 PM

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Your situation is the same as mine...

 

I just make sure I put time aside everyday to sit on the toilet with my rectum relaxed. I also do excersise which really helps me feel the need to go but still have to push a lot just to have a bowel movement, but it helps.

 

I'm also on Resolor (prucalopride) which helps the stool move far enough down the rectum, so that when I push I can pass something. You could try that I now have a bowel movement everyday or every other day. 

:)



#4 annie7

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Posted 03 October 2014 - 04:53 AM

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i do wish resolor was available here in the usa.

the only way someone here can get it is if their doc is willing to write a script for it. then we can order it from a foreign online pharmacy that has it, like canandadrugs.com. you must have a script to get it from canada drugs. getting the script can be hard. i've tried. many doctors are, understandably, unwilling to write a script for a med that is not us fda approved and comes from a foreign online pharm.

fingers crossed resolor becomes available in the usa soon....
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these are just my own thoughts. for expert medical advice please contact a health care professional.


#5 balancedgrub

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Posted 04 October 2014 - 10:52 AM

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I think it's is because it's a relatively new drug. Give it some time and it will become approved. :)



#6 annie7

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Posted 05 October 2014 - 08:04 AM

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oh yes, time...

i've been following resolor since i first read the clinical trials on it in 2007. in 2010 movetis, the european pharma who developed it, introduced resolor in the UK and not too long after that began marketing it in other countries as well. just not here...sad.png  here in the usa, it's progress seems to have been stalled.

patience is a virtue.smile.png

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


#7 Hyposensitive Guy

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Posted 10 February 2015 - 04:08 AM

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Has anyone had any experience coming back from Rectal Hyposensitivity and its associated symptoms?  I feel like I'm losing my mind.  This all started so suddenly for me I can't comprehend why my rectum would, one day, stop sensing stool.  The idea that there is no treatment is truly terrifying to me and I don't know if I could live like this.

This encapsulates so well how I feel about this situation as well. Apparently, rectal hyposensitivity is not a completely anomalous condition, if so many of us have it. I wish there was more work being done on figuring out how to fix it. The most depressing, hopelessness-inducing thing is when your doctors give up on you.



#8 annie7

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Posted 10 February 2015 - 05:41 AM

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oh yes-- i do  agree. i don't have any idea how much research is being done on this or if there is no longer much research being done simply because, realistically speaking, there is nothing that can be done--i just don't know...

 

i am grateful to my gastro docs and surgeons for their understanding. even if there is nothing they can do to help me, at least they all have told me they understand how difficult it is living with it. like one of my gastros said, "it's a curse."


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


#9 twonK

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Posted 10 February 2015 - 10:54 AM

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I can empathise here, I have "nothing wrong" (even transit time is normal) and my GI just randomly throws meds my way whenever I show up.  Some people have had success with PFD treatment, maybe you could look into that?


Meds: Provigil, Lexapro, Wellbutrin, others

Current: IBS-C, OCD, Refractory Depression for 20+ years

Fixed: Hydronephrosis, Bilateral compartment syndrome


#10 annie7

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Posted 10 February 2015 - 12:14 PM

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oh I've already done biofeedback for pfd--two 8 week sessions plus I even bought a home biofeedback machine which I've been using daily for a year now. and it has helped my pelvic floor muscle tightness, like it's supposed to do. it's helped teach me to relax those tight muscles.but it has done nothing for my rectal hyposensitivity. 

 

balloon retraining therapy can help with RH. I tried that as well but I couldn't feel the balloon--let alone push it out--even when it was inflated to the max. I also have megarectum which compounds the problem.  you could shoot a cannon off in there and I wouldn't feel a thing lol..  


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






Also tagged with one or more of these keywords: Rectal Hyposensitivity, constipation, ibs-c, anorectal manometry


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