# How do you all cope with the urgency?



## looby_loo (Mar 19, 2013)

Apologies for my first post being of the *too much information* variety but I'd love to know how other people cope because I don't ever see other people have accidents.

In the 2 years or so that my IBS has been really bad I have had to poo:

In the alleyway on the way home from the station

On the hard shoulder of a motorway

In a bush in a traffic jam

At the side of the road (couldn't make it to the petrol station, managed to make it out of the car, just, then took my leggings off, put them in the boot of the car and drove off again)

And tonight in a bush (having had to get off the bus on the way to the station)

I commute into London and my day is organised around trying always to be near a toilet. I catch an earlier train than the one i need as it has a toilet (after a couple of near misses on the one without a toilet), my bus journey from work to the station is only 15 minutes and I can usually make it from work to the station and then use the loos there before getting on the train in the evening (because I don't want to be known as the woman that's always in the train loo though luckily mine has about 6 so I vary where I sit!) but, after tonight, I'm seriously wondering if i'm going to have to give up work. I'm feeling like it really is only a matter of time before I don't make it to the loo in time or they're all occupied. (I already use the loo on a different floor so I don't bump into any of my colleagues when I come out.)

How does everybody else cope with the urgency? I know that, as well as there being some foods I need to avoid, my IBS is stress-related because I go to the loo before I leave home and work and can't go but then five minutes after being trapped in a car or on public transport (or anywhere not near a toilet) I need to go (and QUICK!)


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## quarky (Jun 15, 2011)

I rarely have accidents but there are more occasions than I can count where I've been openly crying on public transport or in the car because the pain of holding it in is so bad.

These days I don't let myself get more than 10 minutes out of range of a toilet unless I've taken loperamide a few hours beforehand. Just knowing that it's in my system slowing everything down helps me not to panic. A lot of members here take the lowest dose of loperamide every day or every other day to reduce urgency. Going on mebeverine (a prescription anti-spasmodic) also seems to have helped me with the urgency a bit as the "need to go" cramps aren't quite as painful.

Do you generally struggle with anxiety and stress? Your post sounds quite stressed (although that's understandable!) and you seem very bothered by what other people think of you. It's ok to knock on the door and ask to use the loo if someone's taking a long time in there - that's something that everyone, not just IBS sufferers, needs to do at one time or another and people are generally very understanding. Dealing with anxiety (either by medication, counselling, or relaxation techniques) might help reduce the physical symptoms.


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## looby_loo (Mar 19, 2013)

Hi, thanks for the reply. I do get quite stressed but probably more so in the last 6 months since I had to get off a train to find a toilet and I really, really thought I wasn't going to make it (I was sweating and nearly crying and scooted under the turnstile at the toilets as I didn't have time to find coins!) Now, as long as I'm near the toilet on the train nine times out of ten I don't need to use it, it's the times when there isn't one where the panic causes a bowel movement. It's almost like the stress releases some kind of chemical (like how adrenalin makes animals poo in a flight situation so they are lighter) that just turns everything to mush.

The doctor prescribed mebeverine for me which delayed the time I need to go the loo after meals by about an hour but I still need to get there just as fast. I'm experimenting with doses of imodium at the moment, if I take it too much I get really constipated and then when I finally go it starts out solid and then ends up a mush (C and D in one sitting!)

Re knocking on the door if someone's in the loo, I did that at a petrol station recently, the guy came out apologising for having had a 'bad curry' the night before, I told him 'I have IBS, you've probably got nothing on me'







I just hate to use the loo on our floor at work, I work with lots of young, fashion-conscious women who spend ages in there doing their make up, half off me thinks 'stuff you, it's a toilet, I don't care if the smell offends you' but the other half would curl up in embarrassment!

I'm feeling a little calmer now than I was when I first posted (I still got off the bus to visit the loo in McD's tonight on the way home) but the other night was mortifying, I actually had to ask to be let off between stops but told the driver I was going to be sick and he couldn't get me off fast enough









Thanks again for the reply, I will have a mooch around these parts for more tips.


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## quarky (Jun 15, 2011)

"I'm going to be sick" - I'm going to remember that one. I don't go on buses any more since I asked the driver to let me off between stops (we had been completely stationery in traffic for about 10 minutes and I was panicking) and he refused. I tried to open the emergency door but either it didn't work or I'm not strong enough. That put me off ever going in a bus again, as how will I get out if it is an emergency?


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## shirley c (Sep 11, 2007)

I have had MANY rounds of not making it to the bathroom in time. I once bought a complete new outfit with the aid of a very understanding clerk in a clothing store. My problems are intensified because of the damage to the rectal muscle during the birth

of my first child 40 years ago. Yes, there is surgery that "might" fix the problem, but it also could be a complete waste of money

and the agony of surgery. And then, there is still the extreme urgency of the IBS-D, (And when you gotta go, that means now..)

I wear large pads which give me a few more seconds to get to the bathroom, and on the many bad days, I wear the disposable underwear. Once my "accident" starts, there is no time to find a bathroom, except for clean up and embarrassment, and smell...agony....I hate IBS! I just had another colonoscopy and am trying welchol. Yes, I had my gallbladder taken out and the

surgeon "forgot" to tell mention that IBS is tons worse without the little organ. So, how do I deal with my IBS rounds....not very well. I find it to be very depressing just like the rest of you with IBS. It always wins. So, really, how do you deal with IBS, other than "not very well?????".


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## Dianaearnshaw (Feb 22, 2013)

Please believe me when I say that there could be an end to this. I'm a nurse/nutritionist and when I started the nutrition side of things, I quickly realised that it was gut problems that I would be dealing with day in, day out - this has become my main focus.

I am happy to treat on an individual basis (I don't sell anything I promise!), especially when people need daily help, but please read the blog I posted yesterday - there is a very brief DIY version of the plan I offfer. It doesn't have a name as the diet I recommend is not "special" - it is just based on the facts about gut diseases and the nutrition that has allowed us to evolve as far as the 21st century!

Diana.


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## looby_loo (Mar 19, 2013)

*Shirley*, I'm so sorry to hear the extent to which you are suffering. It has crossed my mind I may find myself buying new clothes one day, I tend to wear black always and wear leggings under a dress or long tunic top so if I have to take them off I am still covered if you see what I mean! I did wonder about pads 'just in case' but, as I probably go only(!) about 4/5 times a day there is quite a lot of it so I think there would still be some spillage!

*Quarky*, I have used 'I'm going to be sick' on the train too when there have been people standing between me and the toilet! I think people understand the unpredictability of being sick and don't want to get covered in it whereas if they've never suffered IBS themselves they might think 'so you need the loo, just wait for me to get out of the way'.

*Diane*, I will search your other posts to see if i can find your blog. I'm becoming more aware of what foods I *can't* eat but it would be nice to know what foods are 'safe' for pretty much everyone.

Thanks all for your input, while I wouldn't wish IBS on anyone it's nice to know that I'm not alone in suffering it and that has helped enormously.


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## Dianaearnshaw (Feb 22, 2013)

Hi again,

If you havent found the blog yet, it is under the heading "blogs". I haven't gone into safe foods as when the gut is clear, foods that can be tolerated will be different for people, and even what you can't tolerate at the start, you maybe able to tolerate a few weeks later! It is a steep learning curve!


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## onyx (Jan 13, 2006)

Regarding the urgency ... I've basically dropped out of life and spend most of my time at home. In other words, I'm simply not coping with it, have never figured out how, since I go like 5-10x in a day sometimes, it pretty much makes leaving home impossible for me on those days, which come often enough that I just hardly go out anymore.

If I could just find something, anything, that I could depend on to stop the spontaneous D attacks, I could deal with all the other IBS symptoms. But sadly, no luck so far. I hope you have better luck, some folks seem to find something that works. I keep hoping but meanwhile life keeps passing me by.


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## Dgurl13 (Nov 23, 2008)

Hi Everyone,

I had an extreme problem with urgency and if you go back and find my stories they can be funny or sad. I had a bout with C this past summer. Now I am back to D all the time. I have only found relief in wearing protection. I never leave the house without a diaper and for the most part don't sit around without one for right now. I know at some point this bout of terrible D will pass. Just yesterday I was sitting in mass during Passion Sunday and I get the oh no anxiety and cramps. I look to my partner and they know I am probably going to bolt or tense up to try and hold in as much as I can. I start sweating and shaking. Just when its time to stand for a prayer I decide I am able to control it and get up. While I sat up I leaked a little bit of D into my diaper. I didn't wear a heavy diaper as I wearing a long skirt and didn't want it to show. I only wore depends briefs. I was super lucky as I was passing stool as I walked to the church's basement bathroom. It contained it all and I ended up being in the bathroom for another hour. Mass had ended and my partner brough me my emergency bag from our car. I was so blessed that the clean up wasn't too bad this time and I got to the toilet in enough time for the diaper to not leak. I like the feeling that the diapers give me either extra time to get to the toilet or a sense of protection. At night I wear a molicare or on bad days I wear molicare all day long bc they hold D much better. I sometimes can't get out of bed in time or have D in my sleep. This only happens probably twice a year, thank god! I am okay with the fact that I am in my mid-20's and will have to wear protection bc it gave me my life back. All of my friends and family know about my condition and they have to be okay with it or we are not meant to be friends. I am blessed that they all understand. I often sh*t my pants and people need to deal with it. Otherwise, I would live a life at home and I am too young for that.


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## looby_loo (Mar 19, 2013)

Onyx, don't give up the search, hopefully there's an explanation for all of us out there.

Dgurl, thank heavens for understanding friends, family and partners and I love your attitude!


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## rellybelly17 (Jun 10, 2011)

Everybody close to me knows about my IBS, so if I disappear suddenly they know why lol. When it comes to work, I am a waitress so it isn't difficult to sneak to the bathroom often. But sometimes, I swear that if I concentrate hard enough and am in the right state of mind that I can ignore it....if I give in it starts a flair but if I manage to ignore it the pain and urgency will slowly go away. I take deep breaths and think happy thoughts, doesn't always work though....


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## urbanfresh (Aug 31, 2009)

rellybelly17 said:


> Everybody close to me knows about my IBS, so if I disappear suddenly they know why lol. When it comes to work, I am a waitress so it isn't difficult to sneak to the bathroom often. But sometimes, I swear that if I concentrate hard enough and am in the right state of mind that I can ignore it....if I give in it starts a flair but if I manage to ignore it the pain and urgency will slowly go away. I take deep breaths and think happy thoughts, doesn't always work though....


Totally agree rellybelly17, but I think that technique is most successful if you are already in a good place with IBS. If you are having a bad bout for days/weeks, then I find it ineffective. Was just watching a youtube video about the gut being your body's second brain, really interesting. Also, it said that the area of the brain that enhances pain has been researched with IBS sufferers and non sufferers and guess what - this part of the brain is much more active in IBS sufferers! Lucky us


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## jmc09 (Oct 5, 2009)

I never have accidents because I take as many tablets as needed to stop me doing so. I'd much rather over medicate than under.


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## jackt (Mar 31, 2013)

I have the exact same problems as you described looby_loo.

My GP ref me to a psychologist, went there like 10 times, and he concluded that I have anxiety, and depression caused by IBS-D.

Back to my GP, I ask him to prescribe antidepressants or anti-anxiety medicine to me...but he refused. He told me that here are not any proven clinical efficacy.

But I personally think he refused cause I'm a student.

He then prescribed loperamide(immodium) to me and told me to take it for a month and then contact him again.

I feel it kind of help with loperamide, but I still feel the urge and pressure. Is just that I know I can hold the D in for much longer,

I have tried out different diet like low-carbs, high-carbs, low protein, high protein, low fat and high fat.

And I have found out that I can basically eat anything, without "triggering" my stomach.

The problem is when I get an urgency attack, like on public transport. The food I ate earlier decides for how long I can hold it in.

If I ate oatmeal or other food with high fibre content, then I might only hold it for maximum 10 minutes.

But if I only ate white bread and such I can hold upto 10-30 minutes or longer, depends on the severity.

As today I have only had 1 accident, but many many almost accidents.

This happened almost 1 year ago.

I was at school and made it to the toilet but was not fast enough to loosen my pants. As an tall guy I eat alot of food, so the amount of waste can be expressed by the mean of litres. The worst, it was an explosive D. Ruined my pants and soaked my jacket. I locked myself inside the toilet for nearly ten hours, ten hours of damn stinky shit, finally most of the students left and I bailed the fuck home.

Never in my life have I been so ashamed of myself.

So really loperamide/immodium helps to delay the diarrhea when you get the "no way back" urgency.


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## Ambrose Santiago (May 10, 2009)

I would start by changing your diet. The "Breaking The Vicious Cycle" diet worked wonders for me. I now go to the bathroom once a day, did not go at all yesterday. Good luck!


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## windemere (Sep 25, 2011)

I've got the urgency problem too. The worst part of it is sometimes I don't get warning cramps and its just liquid d ready to go without warning. If I'm going out I take Imodium. I've had accidents at home but not in public. I think the Imodium has prevented that. Try getting yourself an anti-d pill like Imodium. Its helped me out tremendously.


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## hduk (Mar 5, 2007)

I get the urgency issue frequently, more recently it has become almost unmanagable again. I am yet to have an "accident" although i have frequently come too close to comfort. Even worse the last few months i have had to travel a fair bit with work which has stressed me a lot more than usual adding to the symptoms.

I always map a route to wherever i am going working out distances and times between toilets this seems to help me deal with the stress and uncertainty as to whether i can make it to where i am going without having an accident if an attack comes on. I know my resistance to urgency tolerance and know how close i have come too it so i use that as a guage on journey timing. Although i do quite often end up with my foot down to make it to a services or supermarket toilet. Luckily i dont need to use public transport if i did then i think i would be in trouble.

In addition i take 4 immodium every day pretty much without fail and allow it plenty of time to take affect. For me it normally takes an hour and a bit allowing me to calm myself before venturing out. I also have a routine where i dont trap myself i.e if i leave the house and need to go ill come back, if i get close to a stretch e.g motorway where i know there is some time between stops i will often take a comfort detour to ensure my stomach is settled and im not going to need to go before i comitt to a few minutes between toilets. It does sort of seem to work but thats only because i know where im going, if i have to head to somewhere unknown then it does become more tricky..... Weirdly if i stay home the symptoms are far less severe.

This latest bout has prompted me to try looking for a cure again....... Have tried so many things that i have almost given into just living with it although it does take its toll on my quality of life..


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## jackt (Mar 31, 2013)

hduk said:


> I get the urgency issue frequently, more recently it has become almost unmanagable again. I am yet to have an "accident" although i have frequently come too close to comfort. Even worse the last few months i have had to travel a fair bit with work which has stressed me a lot more than usual adding to the symptoms.
> 
> I always map a route to wherever i am going working out distances and times between toilets this seems to help me deal with the stress and uncertainty as to whether i can make it to where i am going without having an accident if an attack comes on. I know my resistance to urgency tolerance and know how close i have come too it so i use that as a guage on journey timing. Although i do quite often end up with my foot down to make it to a services or supermarket toilet. Luckily i dont need to use public transport if i did then i think i would be in trouble.
> 
> ...


Have you tried antidepressant like Paroxetin (Paxil)?

One of my friend take Paroxetin for another reason, but she have IBS as well.

For her Paroxetin helps preventing urgency.

I tried get my GP to prescribe me Paroxetin, but he refused

Maybe I'll go to another GP soon.


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## looby_loo (Mar 19, 2013)

Thanks for all the new replies.

I've been making some headway over the last week or so and have been taking half an Imodium each day. I've also started walking (most of the way) to the station in the evening so I avoid the first part of the bus journey where the bus gets stuck in lots of traffic. I still need to jump on a bus for the last couple of stops as I wouldn't make it in time for my train walking all the way but the last bit of the journey the bus flies along. It's definitely less stressful walking because there are pubs/fast food restaurants etc along the road so I know I can get to a loo if i need to and, just knowing that, I haven't needed to but I know for sure if I was sat in traffic on the bus I'd have been sweating/stomach churning a good few times. I've also been taking a low FODMAP salad for lunch instead of sandwiches (even though my doctor confirmed yesterday that I'm definitely not gluten intolerant.)

I did have a bad day today though and had to run back from the chemist where I was buying my Imodium (note to pharmacy staff everywhere: If your customer is buying Imodium then it probably isn't a good time to ask them to sign up for a store card!)

Jackt, I feel for you with your 10 hours in the toilet, I run that scenario through my head often. I think I would have to either lock myself in the train toilet and run out at my stop or call my husband to drive into town to collect me.


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## Kelseya89 (Jan 9, 2012)

I have had many times where I didn't think I was going to make it, and it really sucks that people just don't understand when you say that you really need to use the bathroom means that you REALLY need to use the bathroom. The last time was before a flight and we were late because of the disney bus so I didn't have a lot of time in the bathroom and my family were rushing to the gate when we got to the airport and I was like omg I have to use the bathroom and they were like we will miss the plane and I was in tears and was like you don't understand I have to get to the bathroom now!! I could care less if I missed the darn plane!


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