IBS Network
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Hi I thought I would share my experience's with you all, l am a suffere of Ibs d with bouts of C thrown in to keep me on my toes, I get the dreaded D on weekly basis and I found myself not wanting to go out, I knew this could'nt go on ,so as we all do, for the last couple of years I devised my coping tools, if I was going out I wouldn't eat or drink and would research the toilets ect ect things were rapidly getting worse, not making it to the loo in time even when at home, this had been a quiet affair up until this point! Then the noises started OMG one swallow of a cup of tea and not only the household could hear the gurgling so could the nextdoor neighbors, so embarrassing !!! then the dreaded D became a permanent fixture 6/8 times a day and 4 times a night and I am sorry to say there were times when I did not make it out of bed in time, nobody talks about it but it is real it is happening to us NOW!! and it's time our Dr's took notice and gave us practical help and advice now ,no more changing our clothes or the beds or cleaning the bathroom at 2am, sorry for the disgusting rant but we all reach our breaking point or is it just me. Luv Cally

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Rant all you like. My hubby has been there. Now in hospital as he got very poorly. Having loads of tests and nothing found yet. GPs need to help more and not just dish out tablets that don’t work. It is very upsetting for all.

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Hi Bazmack thank you for your reply and taking the time to give support to someone else at what must be a very difficult and testing time for you,for those of us who are suffer's we forget that isn't just us, the impact on our partners is greater, they try to understand,but how can they!! our symptoms seem to change by the day, so my heart goes out to you, I hope things are going better for your husband and they have found something to help his current situation and he will soon be home with you. Luv Calli

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I think it was very brave of you to say it like it is Calli! I feel just like you and of course, this ailment hits at a a very deep level. I don't think any of us can escape the humiliation of not getting to the loo on time - being anxious about it isn't going to be cured by CBT it's NORMAL for heaven's sake. It ruins our lives and I'm astonished at how clueless doctors are about it. It's not easy to talk about and adopting strategies like not eating or stuffing ourselves with immodium is not an answer.

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Hi lizbeech it taken a long time of coping and hiding the problem before having the courage to speak out we are not freaks with dirty habits or unclean we all have a genuine medical condition that isn't given the attention it deserves or needs because it is non life threatening, I joined the community to see if anyone had any quick stop methods for a month of non stop dreaded D and found that there were people who felt they were the only ones that these terrible things were happening to,**not so** as you say for us it is NORMAL so if by speaking out and saying how it is I can change the mind of just one person who feels isolated and alone and can't cope any more the I have struck a blow back for IBS suffer's and at the moment I am still standing, thanks for you support hope things are well with you at the moment. Luv Calli

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So sorry you are having a bad time of it. Yes, we have all be there with the dreaded "D". I consider myself lucky as my GP sent me for a colonoscopy, did stool and blood tests and ruled out all the nasties. I control my "D" with Imodium if I am going out for the day but eat a small breakfast. I have been told you can take it long term. I wish you well Calli and you have come to the best site for help coupled with that the IBS network based in Sheffield supported me so give it a go

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Linley can I ask what Imodium you take? I take the dissolvable ones but I've heard that there is an Imodium complete or Imodium IBS that is meant to contain not just regular Imodium but also anti-cramping/wind medicines

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Imodium original 2mg capsules

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Hi Linley I don't know if you got my last message or if I pressed the wrong button if I did apologies, yes just normal Tena pants pull on very comfortable even at night stops anxiety in it's tracks, goodluck if you give them a try they have done wonders for my confidence. Calli

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Hi Linley thanks for that, imodium used to work for me in just the tiniest amount but with this bout I found I have been taking them by the handful like peanuts with no effect, but I will keep looking for something that will work for me. Luv Calli

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Thank you for this post Calli. I don’t have acute D but I have a very disabled gut! The only medication that works for me is Lomotil (Co-phenytrope) but u can’t get in the U.K now - I get really fed up because Imodium doesn’t work for everyone and seems the only available medication for D ..

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Hi Fergie53 I found that it stopped working for me but this flare up has been the worst I have ever had fodmap book due today can't wait to get started hope this is the answer hope you get some respite soon Calli

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Sending you a PM. :)

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Hi sorry I must be slow on the uptake I don't know what that is

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Ah, sorry - Private Message :)

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Silly me I won't be expecting delivery of Teresa May anytime soon then

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As you say, because IBS is not life threatening, it does not get a lot of research dollars or interest. This is unfortunate, but is the reality. As a result doctors and gastroenterologists are pretty much at a loss, except for "coping" strategies. The only thing that has been of some help to me is the FODMAP diet.

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Thanks for that I am looking into it don't know much about it but the book to arrive.Calli

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It is a somewhat restrictive diet, however I have been on it for a while. It is nutritious and I have gotten to like it. Eating out, however is difficult. Look for a book on Amazon by Patsy Catsos. She is a dietician specializing in the Fodmap diet.

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Calli i was cursed with IBS D but since using the low FODMAP diet have had 7 months of normal living. I had post traumatic stress after being caught out in a public space with excrement pouring from me! You do have to read the book though. If it works for you - you may then have to deal with constipation, I use bran from Holland and Barrett. Good luck.

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Hi Eastbourne11 I am so sorry to hear about the horrendous thing that happened to you I know it is hard to come back from something like that, I have only recently discovered after years of misery and not leaving the house the wonderful and liberating tenner pants (other brands available) I just find these the most comfortable, they are invisible and if the worst happens your not leaving a trail behind you, I am waiting for a fodmap, diet book I have on order but looking online I can see one thing straight away that I have recently added to my diet that I thought was good for you that I can see is a no no, and that is coconut water which I have been drinking a lot of, thanks for your help and support and for sharing your worst nightmare. Calli

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Hi Calli thanks for the info on Tena and coconut water. I will take a look at the water. Take care.

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Just standard Tena?

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cally , im so sorry you are going through this , please dont worry about going on too us about it . thats why this is here , now you must take any action you need , u must get the help u need , im sure u dont need too suffer like this ... think the hospital where u are are the option , be nice be polite but dont give up , if u need too send a message do , dont suffer in silence

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Hi Peter thanks so much for your support we all seem to have the same idear that it's our dirty secret and we are the only one these terrible things are happening to this community is giving me so much reassurance because everyone is so caring, I am finding my way through this but made an appointment with GP last month first appointment with lady Dr 26th September I will let you know. Calli

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calli! its too long too wait for doctors !urgent care centre maybe ?

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Hi peterfromlondon I have had problems and IBS diagnosis four years ago always flare up just lasted a couple of days this has been the longest and worst I don't have much pain just the nuisance of being back and forth all day and night the long wait is due to my wanting to see a female Dr but I am a tough bird I can wait another 2 weeks but thanks for caring enough to reply, the old saying what doesn't kill you makes you stronger has never been more true than when applied to IBS suffer's .Calli

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ok cally ! that makes sense ,you now know we are all here too help each other .im sure there s help out there for u on the nhs ... i can see how rotten its been for u ,best wishes .

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Hi Calli, ask your doctor but Bile Acid Malabsorption (BAM) (and google it if you have not heard of it). Usually with IBS they say it doesn't affect you at night. I am not sure whether BAM affects the bowel at night or not but still think it might be worth looking into. All the best, Maureen.

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Hi Maureen I think you may have a point, after reading yellow poo malabsorption maybe part of the problem seeing GP 26th September I will keep you posted, keep well. Calli

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Yes, please let us know how you get on. Maureen.

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Been there! It is a constant battle but I don’t let it stress me. I eat, drink and figure this is my life so there ya go. To worry just aggravates the problem. I can feel for you, one day I’m so loose I plan a home day, next I am constipated for three days and by then plan a home day for fear it’s going to hit any time! It’s all a guessing game. Oh well, what can ya do, get up, get on and live life, it’s all we have. I’m going to get me a Pepsi, smoke a cigarette, go shopping and be grateful, could be worse!👍😊

BTW, if I have an accident while out, I’ll go home, change and head back out! I wear a depends when I go out ( just to be safe, cuts down on mess if I have an accident too), believe me, I’ve had them. Guess what, no one knows when an accident happens but me, as I high tail it outta there asap, so who cares?! Just a wrinkle.

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Hi torcol I love your style, I feel we should all try and stare down this condition because it's the fear that makes the symptoms worse,do all you can to not let let it grind us down. Calli

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well done u ! thats a great way too cope !

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Callie you go girl!! For me you are correct!! l suffer with IBS-C and l having bloating and cramps especially when l eat! Have had colonscopy, Cat Scan also blood test! The colonscopy showed my intestines twisted up with worry the gastro said! He had seen many people the same way! He said l need to stop worrying so much! Well that is hard for me to do when l suffer from all this! My main worry is what l am suffering from!! l really do not believe that is what's causing it! l have been to 2 gastro's and they all say the same thing! l do not want anything wrong with me.... l just want answers to help me in what's going on and what to do about it! Not you worry too much!

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Hi lYNNETT don't hold your breath for a diagnosis because it is an illness that even the medical professional don't know much "about" what causes it or what really treats it which is why it is easier too put it down as psychological,yes it is triggered by stress and fuled by anxiety all we can do is to keep banging away at our GP's the one blessing is that anything nasty has been ruled out, and of course you are going to worry when you are in so much discomfort that you can't stand you definitely can't sit and you certainly can't eat, as one my trigger's for the D is cream when I get the problems you have I have a small spoon of cream, not that I am endorsing this for everyone ,but it works for me, stay strong. Calli

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Oh Calli. I had to smile when I read your post. I too, researched all the nearby places I wanted to go, to check out the quickest way to all the toilets. My daughter laughed at me at first until she realized how serious I was. I have selected three nearby shopping centres where I go and I could find the toilets with my eyes closed. Early on I thought I was coeliac but tests proved negative. I tried every bread on the market to find one that I could eat. I have discovered by experience that any bread with preservatives in it is a trigger for me. So read your labels. $2 loaf from Coles has no preservatives or artificial flavours. I also found that most of the bread sold by Baker's Delight is free from all those nasties. Hope you're finding some answers. We all re-act in different ways. Best Wishes.

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Hi mnm1944 I too have a daughter who laugh's at me when I am going through a bad phase when I am about to sit down, or get in the car I am often met with the shout, black bag for mummy!! Meaning for me to sit on !! It has never come to that but we have a naughty sense of humor,a lesser thick skinned person could be hurt,LoL I had reached the stage where the only way to deal with this illness is with humor, but the last month has wiped the smile off my face,you are right when you say we all react to different things, I don't normally have a reaction to 🍞 mine seems to be dairy and red wine, but at the moment it's everything so I can feel your pain, I think you must be in the States judging by your reference to dollars I am in the UK so at the moment if we can get treatment it is free on the NHS and interestingly enough so is bread flour and Pizza base's for some condition's so I guess we are lucky, but the only way you can be totally sure is to make everything from scratch but it takes all the spontaneity out of life when out we would all now and again like to grab a hotdog or a bag of chips, hope you are having more good day's than bad. Calli

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