# Bowel resction. Sacral nerve stimulator .... Given up on everything else



## exelpet (Aug 17, 2014)

Ok. So im waving the flag. Im done . Im depressed and days like today i dont want to live. Constipation 30year now, ive tried every otc product and diets , recently i have been giving myself enemas , 2 liters of water into my colon then wait to poo. Guess what. Not even that helps. Plain warm water i can retain for about 15 mins or more. Epsom salt enema,stay in there forver . I am so constiped i ever poo pellets or gigantic logs that over flow the toilet if i take suppostries . Today i gave up on the enema bag , im done with it,, i had to insert a microlax and 2 childerens gylceral suppostires , about 2o mins later and digital stimulation , i went , pellets . I take stool softeners with senna about 5 every second night , then enemas when ive had enough , i and distended and bloated . In january i had a tummy tuck with repair of my diastasis recti ( separation of 10cm) , i was sooooo constipated from the codiene i went in thr second week and it was huge and ultimatley was so hard and large and i pushed and strained my muscle repair came undone .

Nothing works . Period.

I see a colorectal surgeon who will do a large bowel resection after the necessary tests . I mentioned a sacal nerve stimulator , so hes sending me to another guy who does these , if it doest work ill have a resection , now im a young fit lady is desperate. Im 62 kilos , i have gained a bit because im so depressed about this , it really does ruin my life , im calling my surgeon tomorrow and begging him to hurry up and talk to this dr who does the SNS I have thrombosed hemmaroids and fissure , i look 5months pregnant , even after my tummy tuck , it sucks , im crying im thats depressed.

In 2012 i saw a gastro who said a low fibre diet and laxatives for the rest of my life. The colonoscopy said i hada long tortourous colon and to follow up with a transit study , i havent had one of those yet. My colorectal surgeon will send me for these soon .

I need help somehow. Id love to get my food intolerances tested but i dont know where to start . Im not one of those people who can have a coffee or milk and go poo. Its a 2 week pattern . I live in pain and uncomfortableness. I wear baggy clothes to hide my tummy , i only eat entrees because im so full from yesterdays meals , i drink water amd bloat so bad , i get stabbing pains in my rectum . My life is so miserable .

For the record im a wife and mother of 2 kids who are 5 and 7 , my 7 year old son suffers constipation with overflow , hes following my footsteps , i am aware and do the right diet , softeners fibre etc, but he get so impacted so easily 

Anyone had a resection , or SNS ???


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## annie7 (Aug 16, 2002)

Hi--so sorry for all your problems and pain. yes, living for so many many years with chronic constipation is very difficult, isn't it.

i've had constipation problems since childhood--for over 50 years. i have slow transit constipation (failed the sitz marker) , pelvic floor dysfunction (failed defecography and anorectal manometry) , as well as rectal hyposensitivity and megarectum. and i also had a long tortourous colon.

about surgery: i have had a partial resection although not a planned one. and unfortunately for me, it was only a partial.

last summer i developed a cecal volvulous. my ascending colon twisted 720 degrees, started swelling and was about to perforate. hubby took me to ER where the surgeon performed an emergency right hemicolectomy--the surgeon removed my ascending colon and half the transverse colon.

so yes, i've had a resection--a partial resection- but it was because of the volvulous and not done in order to help with my colonic inertia problems. when i came to after the surgery and heard that half my colon had been removed, my only thought was i'd wish they'd taken the whole thing out--lol--because none of it works. i still have to take laxatives to go now even though i only have half a colon because my remaining colon is still as slow as it ever was.

here in the usa if surgery is done because of slow transit or colonic inertia, they do a full colectomy with ileorectal anastomosis. taking the entire colon out has, over the years, proven to be more effective than just removing part of it. and of course there are many tests one must go through to see if this surgery will help or not--sitz marker test (colonic transit study), defecography, to make sure there are no pelvic floor problems, small bowel transit tests etc.

once i recovered from my hemi colectomy, i wanted to just get the rest of it taken out as well because i still have to take laxatives to go but because i have pelvic floor dysfunction i do not qualify for a full colectomy--and this has been a huge disappointment to me.

i have read many total colectomy success stories over on the AGMD motility disorders support board. there are a lot of very helpful, supportive people with serious motility disorders on this board. here's the link to one of those success stories if you're interested--there are many others:

http://www.inspire.com/Genie828/journal/6-months-post-total-colectomy-update/

good luck to you. wishing you all the best. take care.


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## Dreamcatcher32 (Nov 12, 2013)

So sorry to hear of your suffering. I can relate to your situation. Mine became so bad that suppositories and enemas would not work very well and neither did laxatives. I went to Mayo Clinic last year where they diagnosed me with pelvic floor dysfunction. I didn't want to believe that this could have been the cause of my constipation but I had to accept it. My pelvic floor was too tight to get an urge or be able to expel things very well. I can now get an urge but it takes a lot of concentration and relaxation of my pelvic floor. This took months to finally 'click' in my brain. It's tough work. I also do get 'backed up' by certain things at times. They weren't able to help me with my extreme bloating and abdominal pain/cramping. I now take Bentyl before 'big' meals to help with this. They did do a GI Transit study and my stomach is on the slow side of normal so that could also be a cause for my discomfort.

I have heard of many who have been helped greatly by total colectomy. But one has to be sure they do not have pelvic floor dysfunction. If you do, you still won't be able to 'go' even with removing your colon. A tight pelvic floor can slow the intestines and the stomach. An ileostomy would be necessary with PFD. But biofeedback should be tried first and this usually helps almost everyone. Though if you have a severe case (like mine) it may take months or even years. I would go to a large clinic like Mayo Clinic before doing anymore surgery. i would say to go to Cleveland but I think they remove colons without checking the pelvic floor thoroughly. An Anorectal Manometry does not always successfully diagnose it. It didn't for me! I was diagnosed by Mayo's biofeedback nurses. They used a u-control biofeedback device and it showed paradoxical contractions and high resting tone. I still have paradoxical contractions to a degree, but they aren't nearly as bad. My pelvic floor is also a lot looser.

You could also have prolapses or megarectum, getting a defecogram would diagnose anything like that also. Do you have a squatty potty? I've posted a lot of what I hope are 'helpful' tips on these boards, so search around for those. As for your sun, I would recommend fiber gummies for sure and get him on a squatty potty early so he can squat. This will result in a lot fewer problems for him down the road. Good luck!


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## flossy (Dec 8, 2012)

New member: Have you ever tried Fish Oil supplements? I cannot even take them as they make me go like a half dozen times a day. Maybe give them a try.

P.S. Sorry for all your woes. I know how you feel (to a point). Good luck!!!


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## exelpet (Aug 17, 2014)

hi all , thanks for your replies .

I took an epsom salt enema the other day the ones with a 2 litre bag and you insert the nozzle in your rectum , let all the water drain into your bowel and then expel . well an hour later i hadn't expelled anything i strained and pushed and nothing would come out , i knew there was stool in there i could feel it when i used a finger in my vagina and bottom ,yet there was no sensation of my rectum being full and ready to go to the toilet . anyway on micro lax and 2 glycerin suppositories later i went after another 25 mins of hell. i had gas so bad in my left side and bloated , every time i went to pee i would have this mucusy sludgy diaareah ( touché enema bag) that went on for 48 hrs . actually i put my first post up here after that dreadful enema . i will not ever ever use them again . i rung my colorectal surgeon and he said come back in but a sacral nerve stimulator isn't covered under medicare from constipation , only incontinince (sp?) so id be out of pocket thousands.

He is still very reluctant to do the resection as no tests have been done , but i was firm and said lets get this ball rolling , I'm depressed and its taking over my life , i want to start the tests . I really like this surgeon , he honest and caring and listens, I guess he will do the PFD tests too , also a colonoscopy .

there is a criteria of resection and if i fail then is laxative and suppostires for ever or a bag.

honestly i want my colon out , i have suspicions that is a mega colon , and could be why my lower belly is so huge . i know my surgeon in cautious , thats good at least i wont end up rushed or getting the wrong treatment.

a question on the Pelvic floor dysfunction - i thought since ive had 2 kids to full term and the occasional bladder leaks during exercise and also during ovulation , that i would have a weak PF? can you have leaks and still have a tight PF?

what is the test like ?

im in australia , health care can be a bit lacksydaisy


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## exelpet (Aug 17, 2014)

I have a stool to put my feet up on when i poo and i taught my so to do this as well . he won't go with out one now . also he has a refferral to the childrens incontinence clinic at the mater children's to assess his soiling and constipation .


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## annie7 (Aug 16, 2002)

HI---yes it's truly miserable, isn't it, when enemas don't work properly or won't come out. i have that problem too which is why i don't do them any more...i really do understand how you feel. i desperately wanted my colon taken out, too--the total colectomy.

that's good that you have a surgeon who cares and listens, who is cautious and who will help you by getting started with the tests. and yes, your surgeon is right--there is a criteria for resection--i found that out, too...

here are three links that explain pelvic floor dysfunction and the tests--the defecating proctogram is usually the first test they do to diagnose it. it's not a difficult test. and it's a very useful test to have. it diagnoses pfd as well as any other possible outlet problems, such as a rectocele--and all the other 'celes--and rectal prolapse. the first two links also describe the testing. the third link mentions both urinary incontinence and constipation problems (as do the others):

http://www.fascrs.org/patients/conditions/pelvic_floor_dysfunction/

http://my.clevelandclinic.org/disorders/pelvic_disorders/hic_pelvic_floor_dysfunction.aspx

http://www.uchospitals.edu/specialties/pelvic/faq/pelvic-floor-disorders.html

i do hope you can get started on the testing soon....take care..


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## annie7 (Aug 16, 2002)

so sorry about your son's problems. that's so hard, especially at such a young age. it's good you are taking him to the doctors. they will be able to help him.


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## Dreamcatcher32 (Nov 12, 2013)

exelpet said:


> hi all , thanks for your replies .
> 
> I took an epsom salt enema the other day the ones with a 2 litre bag and you insert the nozzle in your rectum , let all the water drain into your bowel and then expel . well an hour later i hadn't expelled anything i strained and pushed and nothing would come out , i knew there was stool in there i could feel it when i used a finger in my vagina and bottom ,yet there was no sensation of my rectum being full and ready to go to the toilet . anyway on micro lax and 2 glycerin suppositories later i went after another 25 mins of hell. i had gas so bad in my left side and bloated , every time i went to pee i would have this mucusy sludgy diaareah ( touché enema bag) that went on for 48 hrs . actually i put my first post up here after that dreadful enema . i will not ever ever use them again . i rung my colorectal surgeon and he said come back in but a sacral nerve stimulator isn't covered under medicare from constipation , only incontinince (sp?) so id be out of pocket thousands.
> 
> ...


Yes, you can still have a tense pelvic floor with leaking. I had/have the same thing. Some say that a tense pelvic floor is actually a weak pelvic floor. It's a very 'touchy' thing. I know at Mayo Clinic's bowel retraining program, they see all types of issues. Most have a tough time passing stool or getting an urge to use the restroom. Some don't go for weeks and they end up passing stool the size of a fist. Now how is THAT not going to cause dysfunction? When you're used to having hard stool that is tough to pass, you eventually start tensing your pelvic floor, versus relaxing it. It can sometimes be a 'part' of the problem or the whole picture. I definitely wouldn't have any kind of surgery until you have a defecogram or are accessed by a pelvic floor specialist. Even if your defecogram is normal, I would still see a pelvic floor specialist who deals in dyssynergia or anismus. Some with PFD have an easy time 'going' but are generally have a tense pelvic floor every day all day, so they can't get an urge to have a BM. If you have PFD, then you aren't necessarily stuck forever with laxatives or a bag. If you get biofeedback this will definitely make things better, though they still might not be 100%. I'm 8 months in and though I now can have a BM when standing or sitting, it's still a struggle. Some days I'm so tense that I literally have to relax down for hours. It's irritating. But I've had this for YEARS and I know it's going to take years to 'reverse' the tension. I will say, biofeedback is one of those things where if your case is severe enough, you have to do it every single day. And you have to be sure you're at the SAME relaxed state without the sensor in. This is hard to gauge and many give up and say "It didn't work!" It is extremely difficult to master and takes incredible patience.

Many people with these issues get to the point where they start playing doctor and trying to diagnose themselves. It really is impossible without proper testing. Just because your belly is bloated doesn't mean you have megacolon or megarectum or anything else as severe as you imagine. Bloating can come from muscle spasm, gas, ovarian cysts, etc. I have extreme bloating and pain from my PFD alone.

I also want to mention that if you have PFD, a sacral nerve simulator will make things worse. This was told to me by a neurologist at Mayo. Since you do have chronic constipation, be sure you are emptying your bowel properly. There is actually a good video on this done by an Australian physical therapist. Looks like she may well have a practice over there?


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## Dreamcatcher32 (Nov 12, 2013)

I also want to note that my Defecogram (or Defecography) recently came back 'normal.' I had this done at a near-by clinic. I still have pelvic floor dyssynergia and I know this because I can't have a BM without standing still and 'relaxing down' my pelvic floor. I also have to push in the right way (if I push at all) when having a BM or things get rough. I'm going to be accessed again at Mayo Clinic shortly and their standards are far higher than others. So it will be interesting to hear what they have to say. This is why I say it's important to get your pelvic floor looked at by an actual womens urology clinic that deals with biofeedback for constipation/dyssynergia. My Anorectal Manometry also came back normal but my doctor at Mayo noticed incredibly high squeeze pressures despite that. I'm so glad I went to Mayo, as Cleveland would have probably just told me to have my colon removed, which could have actually worsened the problem.


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## balancedgrub (Jul 13, 2014)

I feel your pain. I think constipation is the worst and I would take diarrhoea over being backed up. I don't the enema are such a good idea over long periods of time as this can cause nerve damage to the lower rectum and sphincter.

I'm 28 and I have had constipation since birth and it was only up until 2 months ago that I am now able to live a relatively normal life. I have clonic inertia (extremely slow bowel transit), hypo sensitive sphincter (i never get the sensation to have a bowel movement), IBS-C and I don't produce the hormone serotonin.

Right now I'm taking Resolor which helps me to produce serotonin for peristalsis (the wave like motion of the bowel) and I'm on a low FODMAP diet which stops me from being bloated and having stomach cramps.

I understand my situation is a little different from yours but there is always hope. So stay strong and don't give up, their is light at the end, just take each day as it comes.

Good luck









K.


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## Dreamcatcher32 (Nov 12, 2013)

Hi Balancedgrub, you bring up some really great points. How were you able to get a diagnosis for not producing enough serotonin? I have depression/OCD/anxiety and it seems like my stomach spasms are worse when I'm not on an anti-depressant.

Also, where did you hear that enemas can cause nerve damage to the lower rectum and sphincter? Do you know of any studies on that? I've heard this before and always wondered. Mayo Clinic said they would be fine to use but those with PFD sometimes can't fully expel the water.


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## exelpet (Aug 17, 2014)

Thanks for all your replies. I'm having a Colon transit study in 2 wee and another tests that takes pictures every hour. I have just gotten new symptoms where I get severe cramps like I'm about to have explosive diarrhea but nothing happens. This went on for 3 days and finally today I I moved my bowels on my own and it was 7 days in the making. Instead of being hard it was very soft and easy to pass and as long as long can be. However when I looked in the bowel the stool was streaked with dark bloody mucus. Totally baffled now. I do think I'm will go through lots of tests before my surgeon takes out my colon. I am willing to try most things . As per my lady colonoscopy my colon is tourtous and long. Hence why everything takes so long to come out. Man are these cramps awful


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## annie7 (Aug 16, 2002)

so sorry for all your pain and the cramps and everything.

some people say peppermint tea or peppermint pills helps with cramps...an antispasmotic like bentyl can help but they can also have constipation as a side effect. putting a warm heating pad on your belly can help..and colon massage too. maybe you've already tried all these...yes it's hard isn't it. i do hope you can find some relief from it all.

good luck with your tests. yes there are a lot of tests required before colon surgery. which is a good thing, of course. the surgeon has to check everything out to make sure removing the colon will actually help you or not.

take care. wishing you all the best.


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## Sean (Feb 8, 1999)

Exelpet, I know exactly what you are experiencing. I have unrelenting chronic constipation caused by colonic inertia. There was a time when a 2 liter water enema would fully relieve me. However, those stopped working consistently several years ago. As soon as I would start the flow of the water, my colon would cramp up hard trying to keep the water from going in. I ended up having to administer the enemas in the bathtub because of the leakage. When I finally got all 2 liters inside of me, I had trouble getting rid of it all. I would pass a little water and a small amount of stool. The rest of the water would remain in my backed up colon and no amount of straining would push it back out. This would leave me bloated and feeling three times worse than before I did the enema.

For the last several years, I have relied on stimulant laxatives to have a bowel movement. I take Dulcolax at bedtime every 5 to 7 days. It is an unpleasant experience the next day, but what am I going to do?


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## Dreamcatcher32 (Nov 12, 2013)

Sean said:


> Exelpet, I know exactly what you are experiencing. I have unrelenting chronic constipation caused by colonic inertia. There was a time when a 2 liter water enema would fully relieve me. However, those stopped working consistently several years ago. As soon as I would start the flow of the water, my colon would cramp up hard trying to keep the water from going in. I ended up having to administer the enemas in the bathtub because of the leakage. When I finally got all 2 liters inside of me, I had trouble getting rid of it all. I would pass a little water and a small amount of stool. The rest of the water would remain in my backed up colon and no amount of straining would push it back out. This would leave me bloated and feeling three times worse than before I did the enema.
> 
> For the last several years, I have relied on stimulant laxatives to have a bowel movement. I take Dulcolax at bedtime every 5 to 7 days. It is an unpleasant experience the next day, but what am I going to do?


I really want to reach out to you after reading this post. When you have trouble getting rid of enema water, it is typically due to pelvic floor dysfunction. 50% of those with chronic constipation have this problem. It is specifically called Pelvic Floor Dyssynergia, Anismus or the overall term is 'outlet obstruction.' I was diagnosed at Mayo Clinic and did their 2 week bowel retraining program. This greatly helped me and I now rarely need laxatives. Though I do spend a huge amount of my time 'relaxing down' my pelvic floor in order to have a BM. I do have other issues - like Depression and Hypothyroidism that make it difficult for me to have a BM. But the program taught me (after about 7 months of doing it at home) that you HAVE to be relaxed to get an urge to have a bowel movement and also to expel anything. I couldn't even get gas out before and now I can get it out pretty well if I'm relaxing. Sometimes PFD is the main problem or it is mixed with other things. But the fact is if you are 'tensing' versus relaxing all the time, you won't get an urge to go yourself. Getting that enema water out is also going to be brutal. Mayo recommends suppositories instead of enemas. You can even use two if you really need to. I will say that all the regular GI tests that are done for this (anorectal manometry and defecography) showed up fine for me. It was the biofeedback nurses that diagnosed tension along with paradoxical contractions. That's where you're pinching your sphincter shut tight instead of relaxing it. If you have thin stool - that is another sign of PFD.

Do you have a squatty potty? This will more effectively get the water out for you. In fact, I can't even use the toilet effectively without it. If that's too expensive for you, you can always try putting books on either side of the toilet to simulate a squat. Sounds like you REALLY need to be in that squat position when going. This actually straightens the rectum and makes you far less prone to prolapse. You also must NEVER strain to get anything out. All you should need is about 3-5 seconds of light pushing from your diaphragm. Make sure you're pushing your belly OUT and not in. Your rectum should go slack.


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