[Hyposensitive Guy]

As I've noted on these boards before, I've suffered from chronic constipation for 10 years now, with rectal hyposensitivity (inability to feel the urge to go, even when tested with large volumes of distension) for the last 6. And whatever my original problem was, I think that rectal hyposensitivity is my main problem now... I can't go properly without the urge, but I never get the urge. I don't know why. It sucks!

And I just got told by another doctor that they don't know anything more to try for me, and I'm feeling very dispirited and low. So here I am, venting. All doctors ever want to do is biofeedback (I've gone through biofeedback at four different institutions now, over the past 6 years), and whatever it may have done for my pelvic floor relaxation, it hasn't fixed my hyposensitivity. And every doctor dumps me after that.

This last one seemed more promising than most, in that they at least paid attention to the rectal hyposensitivity. In addition to the biofeedback, they tried a few sessions of repetitive translumbar magnetic stimulation to target my hyposensitivity, which they said seemed to be caused by some neuropathy. That was great that they tried that, but then it didn't work. C'est la vie. They promised me at my last appointment that they'd look into other things to try after that, perhaps other modalities of stimulation treatment, perhaps home stimulation treatment... but now they're saying they have nothing to offer and I should just learn to be happy because at least I do have movements (which I do, incompletely and with difficulty). Well, that's easy for them to say! They're not the ones living with the problem.

But also... I have no idea what to do next! Should I try one of these permanent sacral nerve stimulators? I hate the idea of getting a permanent implant, but maybe there's nothing else to do... Argh. I hate having a problem no one does any work on. I wish there was some way to get doctors to live with my problem, so they were as motivated as me to spend their time trying to fix it. But no one seems to care about rectal hyposensitivity. No one even knows about it. There's no hope for me on the horizon. I hate feeling this hopeless. I hate feeling like there's nothing I can do to help my problems, and the only people I could go to to try to help won't try anything either. Aaaaaargh.

What should I do?

 

[annie7]

i have rectal hyposensitivity too, as well as megarectum, slow colonic transit, abdominal adhesions from a previous surgery and pfd. and oh yes--i hear you and i agree. from what i've read and what i've been told by my gastro docs and colorectal surgeon, RH is hard to treat, which is sad because it's such a difficult thing to deal with.

i've had two anal manometries and i still can't feel that balloon no matter how much it's inflated. and i can't pass it either.

i'm on laxatives--both stimulant and osmotic-- due because of my slow (non existent) colonic transit and the adhesions. stimulant laxatives are the only way i get an urge--although eating a warm, sizeable breakfast with a cup of black coffee helps. and i don't like being on laxatives but it's the only way i can go.

like you, i've had biofeedback for pfd. plus i bought a home biofeedback machine to practice on. it was successful in teaching my rectum and pelvic floor muscles to relax properly but because of all my other problems, it's not the whole solution. being more relaxed down there has helped a bit with getting an urge, too. when i'm tense and nervous, i've noticed i tighten my pelvic floor muscles and then i don't feel an urge at all, even with laxatives.

i have read that the balloon retraining therapy, which some facilities offer as a part of biofeedback training, can help with rectal hyposensitivity and i did try that but it didn't work for me. have you tried it? if you haven't, give it a go. also, home practice with a balloon retraining device can help. that's what they advise at the mayo clinic's biofeedback program. they give you a week of balloon retraining therapy as well as a balloon device to practice on at home (or instructions on how to make one). if i could afford it, i'd go to mayo but my insurance won't cover it.

i've posted this before. it's the most thorough article i've read on RH. it does mention the sacral nerve stimulator as well as some other, related things:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3479250/

you might want to check out the related articles listed to the right as well.

if your RH is due to neuropathy, maybe the sacral nerve stimulator will help...

i suppose you've already tried this but elevating your feet on something like a footstool, shoebox etc while sitting on a toilet can help straighten out the anorectal angle and allow for a more complete evacuation. so can using a squatty potty. it's helped me quite a bit with incomplete evacuation.

good luck. let me know if you find anything that helps..

 

[Hyposensitive Guy]

Thank you for responding. I just feel so hopeless, you know? And I feel this stupid regret, too, like maybe if I'd done something different, I'd be cured by now (I didn't have this rectal hyposensitivity when my chronic constipation started, so perhaps if I'd gone to the right doctors at the right time, whatever caused it to develop wouldn't have happened in the first place!). I have no idea what caused things to shift to hyposensitivity, and I keep wondering, trying to figure it out.

(Out of curiosity, did your own rectal hyposensitivity develop at the same time as your constipation/pelvic floor problems in general, or did it come about later? One odd thing is that mine actually started shortly after the time I first started doing biofeedback. That may just be coincidence. Another thought I've had is that maybe the mechanism triggering my rectal hyposensitivity might be tied to such factors as that this was the first time I started using enemas (as instructed as preparation for the biofeedback sessions). Again, this may all just be coincidence. I just keep trying to find some explanation for what's happened to me.)

I've tried the balloon retraining thing (from the Mayo Clinic, in fact); it unfortunately didn't do much for me sensation-wise (but I do think the Mayo Clinic was the only biofeedback program of the four I went through that did anything useful for my pelvic floor relaxation abilities, which is why I sometimes wish I'd gone there originally instead of wasting time on the other two biofeedback centers I went to first; I might've wiped out my whole constipation thing before any of this hyposensitivity started).

I'm not even sure whether I have neuropathy anymore. Originally, doctors felt they were reliably measuring some neuropathy in me via nerve conduction tests; after I went through the repetitive translumbar magnetic stimulation, they felt those tests results had improved remarkably, to normal levels. But it didn't make any difference to rectal hyposensitivity or chronic constipation, so, I don't know what to make of it. Perhaps there are other nerves they weren't looking at to which the same sort of treatment should be applied? I don't know. I'm not a doctor. It's so frustrating, though, to not have doctors even trying anymore. Even the sacral nerve stimulator was only offered to me by a urologist, rather than any of the neurogastroenterologists I've seen. Bleh.

I'm not sure what I hope to accomplish by writing out my sadness, but thanks for letting me ramble and vent.

[Oh, also: Thanks for the article you posted. I've read it many times before, but as you say, it's the most thorough article on rectal hyposensitivity that's out there. (Obviously, I wish there were more research being done; I wonder if the state of knowledge on rectal hyposensitivity has advanced significantly at all in the two years since that article?). It's also curious to me that it was published by the Korean Society of Neurogastroenterology and Motility, and is basically only cited by a couple other Korean articles, despite being written by English doctors of apparently perfectly normal prestige; I wonder if there's any significance to that?]

 

[annie7]

oh yes, i do understand about that hopeless feeling...and oh yes--please do feel free to ramble and vent. that's what the board is for...i do a lot of that myself lol...

please don't blame yourself for all this, though...don't blame yourself for not going to the right docs at the right time etc...thinking like that just makes things worse, i feel. and how are we to know what to do, when etc....we do what we do...we just do the best we can...

that's great you've been to mayo. they have the best biofeedback program from what i keep hearing. and it sounds like they were very thorough with other tests as well. the neuropathy and everything..

my biofeedback was through the university of michigan hospital. it was quite good --had the balloon retraining as well as the usual---i'm quite satisfied with the help they gave me. and using the U Control daily at home helped even more. i need the daily practice.

i've had constipation problems since childhood. for me i think a big thing contributing to my rectal hyposensitivity was with holding BMs whenever i went to camp. every summer from the ages of 10 through 17 i went to summer camp for two weeks. first girl scout camp, then others. they all had outdoor latrines which were just filthy, smelly, full of bugs and not private either--the two-seater variety. horrible. and the camp schedule didn't allow you much time to go especially in the morning. it always took me a while to go at home and i'm a girlie who needs her privacy--lol--so i just couldn't go at camp--especially with the other girls pounding on the sagging door to the latrine when you "took too long"....what a nightmare...so i held it for the entire two weeks. a lot of girls did, actually..and i think that's what set me up for RH and also pfd...i can only hope camp conditions have improved since then, for the sake of other kids....

i do hope things get better for you...for both of us....take care...

 

[Corydalis Aurea]

Dang you guys! How awful

I can't imagine having to deal with not being able to have an urge...tho' mine are often painful, I don't think at this point I could trade that for what you guys are dealing with...

 

[annie7]

thanks for the sympathy/empathy....sounds like between us, we're one extreme to the other...neither extreme being much fun....oh to be normal!!! sigh....

 

[kals]

I just figure if I get in so much pain, something will happen and whoever is around will call an ambulance, I feel fine these days.