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Interesting Read

6K views 37 replies 7 participants last post by  QuietDesperation 
#1 ·
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#2 ·
This study doesn't specifically mention volvulus although this term is in the heading. A high fibre diet is implicated in volvulus and many of us can't tolerate too much fibre.

Too much fibre can actually cause constipation for a lot of us. This could be because methane gas can cause non-propagating or segmental contractions - spasms in other words. Digestion gas from maldigested carbohydrates create the gasses that then cause the constipation.

http://www.ncbi.nlm.nih.gov/pubmed/16293652

This could be the underlying reason, rather than pelvic floor dysfunction. The best way to work this out yourself is by spending a while in the toilet. If you constantly feel the need to void your bowels, so you feel the pressure of stool but can't evacuate it, then it possibly is pelvic floor dysfunction. The stool is there ready to be evacuated, but the muscles aren't releasing it.

If on the other hand, like me, you have several BMs, and you feel clear after each BM, but after half an hour gradually feel as though there's more to come, this could suggest that it's not a PFD issue but a problem with sluggish transit of stool through the whole of the colon.

Gas seems to impede stool as well, for me anyway. So each time there's a fluff there's usually, almost always, more stool that follows. So the ejected gas seems to free up stool. I don't know if anyone else gets this as well.

So I think for a lot of us the problem isn't so much PFD but gas itself. If we don't produce the gas in the first place the bowel evacuation should in theory be a lot quicker and easier as the stool itself is firmer and less gassy and I suppose easier for the peristaltic action to grip on to.

I can't believe doctors are still saying things like this:

"…patients are generally prescribed a bowel regimen of high fiber with supplementation, laxatives, and enemas"

High fibre for most of us results in colonic spasms, constipation or diarrhea depending on your IBS type. This is probably gas related as well. Keep up a high fibre diet and you may end up with IBS-D, inflammatory bowel disease and possibly volvulus, which is extremely serious. Leaky Gassers are probably at the lower end of the IBS scale even though it doesn't seem like that for us but the inflammation aspect at least isn't as severe.

Laxatives and enemas mean your colon is becoming more lazy and ineffective each day you use them, while you still keep eating the same gas-causing foods. The more studies I read, the more I get the impression doctors still don't get it.
 
#3 ·
The cause of the odor is nothing to do with slow transit with me. I go to the toilet every day, when i go at first i can go ok but it suddenly stops dead and at that point i can't get anymore out. I come back later and try again and the little excrement that comes out comes out like spaghetti, at this point my muscles are in permenant spasms and constantly contracting completely outwith my control and it is literally impossible to get anymore out, even though i know it's sitting there waiting to come.

Enemas and rectal irrigation kits not only do not work for me but actually make me smell worse as some of the water gets trapped in with the crap causing it to be more potent. I've went out before after an enema or R.E and could actually feel it even more wet than it usually can get because of it.

It's a joke but i've got an appointment back with my surgeon on the 22nd of August hopefully we can get this sorted.
 
#4 ·
Is it possible stress is causing the spasms? I only really get spasms the day after high fibre, as far as I know but the mind is very powerful as well. I go every morning as well, so it's more of a sluggish colon than constipation, but I still think it's a form of constipation. Maybe try what I do if you're not embarrassed and spend a while in there. The earlier you get up the more relaxed you are. I allow at least a few hours in the morning and take a whole lot of things in with me, the paper, the laptop etc so I don't get bored. Most times it just happens when I'm concentrating on something else, so it's completely relaxed. When I had my worst LG I'd only partially go in the morning and get LG at work, so try to go to the bathroom there, which didn't work at all. I wasn't relaxed, and what I could get out was just bits and pieces and I knew there was more there and so it didn't lessen the LG. So trying to go back later in the day just didn't work for me at all. People here say all the time - I go several times a day, that's just how I am and that's normal for me, but I'm not sure that's a good thing for LG. I think it's better to think of evacuation as something you do once a day. You reinforce this with your colon, it's a mind-body thing. So even if it takes a while, at least the evacuation is complete. My only problem now is gas that creeps back up in the middle of the day, but it's usually able to be held in if I go easy on starch, fibre and FODMAPs. I don't think surgery can help but this is a contentious issue here. Complete evacuation and diet made a huge difference for me.
 
#5 · (Edited by Moderator)
Yeah i've spent hours aswell, i usually take my s4 phone in with me so i can read or listen to music or watch youtube videos or whatever. There has been times when i have been drenched in sweat, and i feel it trying to come out but it just won't come. It just gets worse and worse til none at all comes out. Coming back later makes no difference, the spasm can last almost an entire day and that's just by pushing a few times.

I agree the mind is a powerful thing and the spasming pain i get can be extremely intense when i'm nervous but when this started happening for me, i wasn't nervous. Infact i was popular and enjoying my life so paradoxical sphincter contraction or pelvic floor dysfunction, is what i seem to be suffering from.

Glad you're able to empty out and at least function in society, at this point, i'm not.
 
#6 ·
Summer is pretty bad. I can be a bit shaky too, just from sitting so long.

3 hot cups of tea helps. The thing with the type of constipation I have, is that I can actually sense the stool moving down from higher up and once it gets to the lower colon I don't seem to have trouble evacuating it, it just comes out. If you feel yours is trying to come out but it just won't come - that could be from constipating foods and that can affect PFD. So it's not that you don't have PFD, but that constipating foods make it worse. The foods I eat aren't constipating as they're mainly fibre-based, apart from the smallish amount of meat or fish I eat. But I mash up or boil all my veges so they're easily digested and don't cause much gas. My problem is possibly more neuro-muscular because I drank heavily in earlier years and I think that did damage. Why I don't think it's PFD is because a few times I've had very quick evacuations but that's usually from having dinner really early. So if it was PFD I would be consistently slow, not just on some days. I'm pretty certain most neuromuscular disorders are made worse with gas.

You could try a diet like mine. Either cream of wheat cereal (I haven't tried this yet) or well-cooked oats for breakfast. Citrus fruit for mid-morning (these should be digested easily). Lunch is the most difficult meal for me. I have jaffles even though wheat is probably constipating too, I don't really know what else to have for lunch. Dinner is just protein with well cooked veges and banana and yoghurt. There's enough fibre there to push everything through but not too much to cause spasms. It's getting the right fibre balance that's so difficult. Rice and white bread are probably the most constipating foods there are and I just don't eat these at all. Try eating dinner earlier to give the gas plenty of time to work its way through, and going to bed earlier otherwise you get hungry. Starchy foods like dry crackers, french fries, pizza bases and all types of bread are the worst foods for me.

I think we all have underlying IBS whatever it is. I think the damage is neuromuscular but I don't know why we get it and normal people don't because they drink alcohol and eat a poor diet as well. If the problem is genetic in origin I think we just have to keep with the long evacuations and work on diet. It's a work-around but at least it works.
 
#7 ·
There has been times when i have been drenched in sweat, and i feel it trying to come out but it just won't come
Please do not strain this much. Straining is a major cause of several different anorectal pathologies, not least prolapse-intussusception spectrum conditions, hemorrhoid, fissure. The main danger is stretching the pudendal nerves, which will leave you with permanent nerve damage and lowered resting tone of the anal canal. This translates to mucus leak, or worse.

Here are some things I find good to avoid straining and get full evac:

- squatting position

- psyllium

- transanal irrigation with tap water (will not cause colon to become dependent or lazy)

I go first thing in morning with ease, and it can feel like I am completely evacuated, but then I have breakfast and a hot drink, and try the irrigation to get a lot more out. It is the difference between having 2-3 bm per day and only having the 1 in the morning for me. It also helps evacuate the residual stool in the rectum and sigmoid, although with psyllium and low FODMAP the stool tends to be v "clean" (often, nothing to wipe away after a normal bm). Totally get what you are saying about irrigation making things worse. You need a to go again a few hours after the initial irrigation to let the last bit of liquid out.

Have you had biofeedback to be able to learn how to relax the sphincter?
 
#8 ·
#9 · (Edited by Moderator)
Wasn't offered biofeedback, nurse said it would be useless to me as i know how to push. It's half way through that the spasms kick in and completely stops the b.m and any proceeding attempts at one. I won't be trying the irrigation again, the pain i end up in trying to (unsuccessfully) get the water out is crazy and it seems to intensify the odor with me.
 
#11 ·
You've had this confirmed by a doctor/surgeon that it's nerve damage?

If the Irrigation doesn't work for you surely you can't just be left to rot with this? i'd rather die than live out the rest of my life like a leper when there is possible surgical things that can be done. I'm back up to see my surgeon on the 22nd of this month and i'll be making sure that he's told in no uncertain terms that what's been tried by the coloproctology nurse hasn't worked at all and i'd like to know what's happening as it is having a huge effect on my mental well being as well as turned me into a nervous wreck/destroyed my life etc, basically the truth. If he tries to drag his feet anymore or says there is no more he can do he will be getting presented with information about things that can be done and informed that complaints will be getting made unless this is resolved quickly.

The last colorectal surgeon i seen last year could obviously smell me, but when he checked me over( on 3 seperate occasions btw) all he could tell was that my sphincter was extremely tight and my bowel was full of stool, he constantly tried to trag his feet til i got mad and told him i was putting a complaint in against him and wanted moved to another doctor. This caused his face to go chalk white and he moved me to a new surgeon right away(who has been brilliant btw) and apologiesed and couldn't look me i the eye for the rest of the appointment. I guess what i'm getting at is if i left it up to that joke of a surgeon before i'd still be no where and not knowing what caused this where as now i know exactly what's wrong. Now i'll always be pro-active when i go back in as apposed to re-active. If that means bringing in all the information i can or getting my phone out to record the conversation for "posterity" then that's the way i'll be going. It keeps them on their best behaviour even though it might seem a bit confrontational, but it's the only way i can be sure i'm gonna be taken seriously.
 
#12 · (Edited by Moderator)
I have it sort of confirmed from a surgeon about the nerve damage. My nerve damage symptoms started initially with a strange warm sensation on my lower left abdominal wall. Whenever I do the TENS to exercise the sphincters, this warm sensation area "lights up" I asked at the time about it and the surgeon was dissmissive sounding, calling it "neuropathic pain" (basically the kind of pain you get when nerves are damaged). Since then, all the muscle twitching, partial numbness, pins and needles have started, although it all comes and goes for weeks at a time. Like right now there is barely anything feeling wrong. I don't see the surgeon any more, but I emailed him and he said I should see a neurologist now rather than a coloproctologist to find the cause of the problem. I've just been building up to getting this done, but I will need to register with a GP and get another referral. I just really can't be bothered more than anything else. Been through this bs so many times before I have such low expectations now.

Suicide, I know totally how u feel. It is very difficult, but there are some facts and platitudes that are nonetheless entirely true:

- It could be worse

- The vast majority of people who attempt suicide and survive later say they regret trying to kill themselves. Someone was talking about narrowed perspective in another thread. You don't know what your perspective or situation will be like in the future if you opt out.

- You find reasons to keep going, you are still here after all you have been through after all.

With regards recording consultations, not sure they would let u do that. And your instinct that it would make them defensive is correct. Surgeons especially like to feel in control and any doctor will get jumpy about treating you if you come across like you might complain about them. It is OK to take a notebook or page of points you want to raise during the consultation.

Also, not all medical problems can be solved completely, or even partially with surgery or medicine. Medicine is constantly advancing, but it is not perfect by any means. This is no reason to turn to quacks however, better to use your brain and save your money. If a surgeon doesn't want to perform surgery on you, this does not necessarily make them a bad surgeon. There is a saying:

"Good surgeons know how to cut, better surgeons know when to cut, and the best Surgeons know when not to cut."

If they are not totally sure what is wrong with you, and/or not totally sure the surgery will help, or the risk that it might make things worse are too significant, then you can see where they are coming from. The same advice goes for you, if you are going to try any irreversible treatment (i.e. surgery), then do your homework and don't let the desperate need to do something lead you to make a decision you may letter regret.
 
#13 · (Edited by Moderator)
Well been to the specialist today who told me that there was no abnormalities like prolapse etc that he could operate on.So he's offered me a stoma now so hopefully this year will have that fitted. Got to see a stoma nurse first so i know everything that is happening then ill be on the waiting list for the operation. He said he's gonna make it reversable but since it's paradoxical sphincter contractions that cause the pain and stuff then i'll need to be on medication for the nerve pain for the rest of my days probably. I'm over the moon hopefully this will be over soon and i can lead a normal life, jesus that would be $$$$$$ing nice.
 
#14 ·
Wasn't offered biofeedback, nurse said it would be useless to me as i know how to push. It's half way through that the spasms kick in and completely stops the b.m and any proceeding attempts at one. I won't be trying the irrigation again, the pain i end up in trying to (unsuccessfully) get the water out is crazy and it seems to intensify the odor with me.
why do you think when you get the spasms it stops any proceeding attempts at one? i get this, its as if i get one chance to get it out, and when things contract against my wishes, it all gets pushed into a little zone that i cant push on, i can feel it but cant push on it. i get it when urinating as well, its my theory things are completely imbalanced, 1 muscle is weak and the other stronger, so when the 2 muscles are supposed to work together, they dont and force things back inside. fuck knows why it goes into this zone and stays there though.
 
#15 · (Edited by Moderator)
Do they do stoma operations for IBS? That might be unethical as I've never heard that before. Stomas are for cancer patients and people with bowel disease mainly. There are a lot of things that can go wrong with stomas, and they're not always reversible. Sometimes the odour is worse.

http://www.colostomyassociation.org.uk/index.php?p=201&pp=3&page=Problematic

This study says the morbidity after stomal closure was 20%. Problems can include wound infection and scarring.

http://link.springer.com/article/10.1007/s00384-008-0549-2#page-1

Also it seems you have to empty them quite frequently, up to 13 times a day. Having a stoma would give me major depression.

Intothewild, can you go on welfare? Work is the worst aspect for me. Your pain could be largely stress related from trying to evacuate so you don't have LG at work. We have subsidised housing over here for low income earners, which I benefit from. I couldn't cope financially otherwise. I'd rather live on welfare and in a caravan if it meant I didn't have to have LG at work anywhere. Our problem is trying to work out how much of our constipation is mechanical or innate and how much of it is idiopathic or fixable. Idiopathic just means that after all the tests are run the doctors don't know what's wrong. It doesn't mean that the problem isn't organic, it just means that whatever is causing the constipation doesn't show up on tests. A neurological condition could have bioactive agents that will make things worse. Not everyone with faulty IBS genes will develop IBS, or maybe their symptoms are minor. A lot of people swear by a SCD type diet to reduce symptoms. It's the actual gas from starches and fibre that aggravate the problem. Gasses are bioactive. It's hard to do definitive testing for methane or hydrogen but it's possible these actually cause IBS. Constipation might be alleviated by a more bland diet that doesn't cause spasms. You still need soluble fibre, as it's believed this swells and helps peristalsis. It's the pressure on the colon wall that helps move things along, but you have to be really careful. This should be low FODMAP fibre. Too much fibre or the wrong kind can lead to non-propagating spasms. I'm "lucky" in that I have eczema as well, so if I have nuts for instance my skin will tell me off before my colon does.
 
#16 ·
Do they do stoma operations for IBS? That might be unethical as I've never heard that before. Stomas are for cancer patients and people with bowel disease mainly. There are a lot of things that can go wrong with stomas, and they're not always reversible. Sometimes the odour is worse.

http://www.colostomyassociation.org.uk/index.php?p=201&pp=3&page=Problematic

This study says the morbidity after stomal closure was 20%. Problems can include wound infection and scarring.

http://link.springer.com/article/10.1007/s00384-008-0549-2#page-1

Also it seems you have to empty them quite frequently, up to 13 times a day. Having a stoma would give me major depression.

Intothewild, can you go on welfare? Work is the worst aspect for me. Your pain could be largely stress related from trying to evacuate so you don't have LG at work. We have subsidised housing over here for low income earners, which I benefit from. I couldn't cope financially otherwise. I'd rather live on welfare and in a caravan if it meant I didn't have to have LG at work anywhere. Our problem is trying to work out how much of our constipation is mechanical or innate and how much of it is idiopathic or fixable. Idiopathic just means that after all the tests are run the doctors don't know what's wrong. It doesn't mean that the problem isn't organic, it just means that whatever is causing the constipation doesn't show up on tests. A neurological condition could have bioactive agents that will make things worse. Not everyone with faulty IBS genes will develop IBS, or maybe their symptoms are minor. A lot of people swear by a SCD type diet to reduce symptoms. It's the actual gas from starches and fibre that aggravate the problem. Gasses are bioactive. It's hard to do definitive testing for methane or hydrogen but it's possible these actually cause IBS. Constipation might be alleviated by a more bland diet that doesn't cause spasms. You still need soluble fibre, as it's believed this swells and helps peristalsis. It's the pressure on the colon wall that helps move things along, but you have to be really careful. This should be low FODMAP fibre. Too much fibre or the wrong kind can lead to non-propagating spasms. I'm "lucky" in that I have eczema as well, so if I have nuts for instance my skin will tell me off before my colon does.
First and foremost i'm not getting a colostomy for IBS. Secondly it's hilarious how you can call a surgeon who i've seen multiple times who's been a colorectal surgeon for 30 plus unethical it really is quite pathetic.

The rest of your post is just rambling that i'm really not gonna give much credence to. What he is doing the colostomy for is because i'm suffering from parodoxical sphincter contraction(diagnosed along with dysserngenic defecation). This is what is causing the odor and wetness, mucus etc. He said this will get rid of the smell as it will completely bypassing the normal route and will come out via the stoma on my stomach. The severe pain i get from the P.S.C will continue so i'll need to be put on stronger drugs for the nerve pain but apart from that he really said it was the only option for me. I've tried a plethora of diets including the low FODMAP and they haven't made any difference at all, because i can't expell it because of the P.S.C.

Obviously a stoma is risky as it is with everyone who has it done. But i'll put my faith in a surgeon who has been trying his hardest for me the last year to get this sorted and hopefully get my life back.
 
#17 ·
why do you think when you get the spasms it stops any proceeding attempts at one? i get this, its as if i get one chance to get it out, and when things contract against my wishes, it all gets pushed into a little zone that i cant push on, i can feel it but cant push on it. i get it when urinating as well, its my theory things are completely imbalanced, 1 muscle is weak and the other stronger, so when the 2 muscles are supposed to work together, they dont and force things back inside. $$$$$$ knows why it goes into this zone and stays there though.
Dunno mate think that's why the call it parodoxical sphincter contractions. I was reading a yahoo post by this guy a few years ago who was diagnosed with it, they didn't know what caused it and they tried giving him enemas and irrigation and it didn't work at all just made matters worse. They sent him home saying they didn't know what to do about it the guy was right back at square one. Hopefully he's got it resolved now but thank god i'm not gonna be in that situation.
 
#18 ·
tummyrumbles I'm sure I've asked you this before but why do you talk about ibs in virtually every post you make even when we're talking about defects with our anal seals?

Intothewild, are you sure stomas are air tight? Seems like a last resort even if they are. I take it you've tried a long term restrictive diet and all the usual supplements? Can you get it down to a manageable smell?
 
#19 ·
tummyrumbles I'm sure I've asked you this before but why do you talk about ibs in virtually every post you make even when we're talking about defects with our anal seals?

Intothewild, are you sure stomas are air tight? Seems like a last resort even if they are. I take it you've tried a long term restrictive diet and all the usual supplements? Can you get it down to a manageable smell?
Well they should be since people with stomas don't seem to smell at all so i'd assume so. I've tried every diet there is and it's done nothing for me except take me to some very dark places. I wouldn't wish the candida diet on my worst enemy. It is a last resort man i've had most tests done and tried everything they've given me but nothing has worked and most have made it worse. The reason for the odor with me is because i can't empty out because of the Paradoxical Sphincter Contractions. As the surgeon was saying if i get a stoma i won't have to use the sphincter muscles to get rid of the waste the stoma will take care of that, so hopefully that will get rid of the odor (in theory it really should). He is gonna make sure it's reversable as well but this will be for all intents and purposes permenant.

Also say goodbye to toilet paper which is a plus. Also tummyrumbles said she read you would have to change it 13 times a day it's only un predictable like that the first few weeks after your stoma is fitted. It gets to once a day or twice at most. Just hoping for the best with this. There really is no other options for me so in regards to surgery or diet etc. The fact i've also been diagnosed rules out any sort of bacterial problem aswell. So i'm hopeful this will work.
 
#20 · (Edited by Moderator)
intothewild

i just read this topic--and yes, that is an interesting read-- thanks--and wanted to say good luck to you with your upcoming stoma surgery--wishing you all the best.

i have pelvic floor dysfunction--PSC--paradoxical sphincter contraction. i've had problems with all this since childhood--50 years (i'm old--lol)

anyway--it's been so hard living with all this. i'm still working on biofeedback for my pfd. i have made some progress with it and hoping that at least biofeedback will keep me from getting worse.

my colorectal surgeon and my gastro docs have told me the only surgical option for me is a colostomy. because this surgery may be in my future i've been reading a lot about it on the AGMD Inspire ostomy board. it's a very positive, upbeat , informative and supportive board. and i have a couple friends with ileos.

you are right about the colostomy--they are easier to manage than an ileo. the output is thicker, for one thing. some people don't even have to wear a bag--they just irrigate it a couple times a day or so. and people do say these surgeries have given them their lives back. and have helped them feel better.no more futile struggling in the bathroom ... and the stoma nurses are all so helpful with everything--getting you started with a pouching system etc.

and of course any surgery has it's risks but it sounds like you have a terrific surgeon--you'll be in good hands.

as i said--good luck--wishing you all the best.
 
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#21 ·
All the very best to you aswell Annie. Please keep me updated on your progress and i'll do likewise. :)
 
#23 ·
Update - Appointment with Stoma Nurse, 25th September. Hopefully shouldn't be too long since that til the actual surgery.
 
#24 ·
oh good---so glad you're getting in to see the stoma nurse soon. these nurses are so supportive and knowledgeable--so helpful.

and yes, hopefully surgery will be soon after.

if you happen to be looking for a good ostomy support group, there is an excellent one on the Inspire ostomy board. it's full of lots of very helpful and supportive people with lots of helpful tips and advice on dealing with an ostomy, changing the bag, etc etc. and the are some people from the UK on that board. i've been reading it for a couple years now, just to get an idea of what living with an ostomy is like.

http://www.inspire.com/groups/ostomy/

thanks for keeping us posted. wishing you all the best.
 
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#26 ·
Hi Annie,

Thanks a lot, i'll check that group out, it'll be ideal to answer a few of the questions i have about this. Do you have any update on your surgery?

Cheers,

P.S - Diana i P.Md you.
 
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