IBS Network
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Debs294

Hi, my name is Debra, I have had IBS for a number of years, I have had two colonoscopes, after my symptoms got unbearable, I have had other tests, always just get told by hospital specialists that it is something I have just got to live with.

It's easy to say when they don't have to live with it, when any food can set it off, when I only have sometimes minutes to get to a toilet as there is little warning. I don't know about anybody else, but I need to know where toilets are wherever I go, often hurrying into a cafe or a pub to get to a toilet urgently, it's not always easy, at times some very near misses.

I have tried many medications, nothing makes a great deal of difference, after my latest colonoscopy, I was told by the hospital consultant, to take Loperamide everyday, but a) I don't really want to become intolerant to them and b) I have tried it, but often then I become constipated, I can't seem to find a happy medium.

I have to say I have a great GP, he is really helpful and very understanding, I just get so frustrated by it at times, I just wish I could live a normal life and be able to go out without worrying about what may happen.

I hope that I may be able to see how other sufferers cope.

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I totally sympathise with you as I have the same problem. My toilet problems have stopped me from doing so many things and like you I have had many many near misses and embarrassing situations.

I use loperamide if I have to go out and I'm nervous about a) eating - as most things upset my tummy b) if I go on a journey c) if I can't cope with the toilet stress. They do make me constipated but then I will not take any when I'm at home and will take a senna tablet if necessary.

I lost 18" of colon due to diverticulitis about 4 years ago and I didn't fit any of the criteria for suffering from this disease - I believe the constant explosive pressure of my Bowel habits to be responsible- this continues now even after surgery.

One thing that helps massively is cutting out gluten and sugar but other than that for me there is no one trigger that I can identify as the diarrhoea culprit as it varies without rhyme or reason. Also, loads of probiotics and taking dyorylite after a bad bowel situation - replaces lost electrolytes.

This problem can be so distressing and the impact upon your life is huge - I would love to have a normal bowel. I try very hard not to let it affect my social life (40 years of stress as it started when I was about 10) but it inevitably impacts on everything, even work.

I have no medical training, just my experience, but I keep trying lots of different remedies in the hope they will help

Mx

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Thank you, I am so pleased that there is more than me. Sometimes people just understand what you go through, it's just good to know that others understand.

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Hi debra, i have had ibs for years and it had got worse in last year, it has had me doubled up at times but i got a great gp who has it to, he is a great believer in there is a trigger ie food or stress...

U have to find that trigger.

I could not find mine so i was told by friend about a alergist that goes through all major foods and drugs. Well it turned out i had a overgrowth bad bacteria from to many abtibiotics plus i was alergic to dairy gluten and yeast!!

So i stopped it all straight away and started putting good back in body ie probiotics, digestive enzymes , peppermint oils, vit d. And within two months the pain in my stomach had gone!

It still flare up if i make a mistake and eat something with any of my trigger in it but it goes really quick now as i will just fast so it let gut rest.

I really hope u find a trigger as once u do it make life easier!

Mayb try no dairy for a week? Then if u still hurt try gluten and then yeast. It usually one of them

Like u i used to be near a toilet all time and would spend all morning in there but i go once a day now

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Hi Lulububs, so glad you found someone that used an Allergist that was trustworthy and good as it's very difficult to know who you can trust these days, recommendation is always good.

I now take probiotics every day and have lactose free dairy as well as cutting out the foods I know I can't eat.

Thank you for sharing.

Alicia

:)

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Hello everyone,

My Mum (aged 88yrs now) had bowel cancer back in 1999/2000 and had 18" of the Sigmoid colon removed. Since then she's suffered with faecal incontinence and has been tested for Gluten, lactose the whole works and has been told she's not allergic, but we know she's intolerant. Through experimentation we've worked out that the following affect her : gluten / lactose / eggs / oats / onions / rice / red meat / parsnips / fibrous foods / peppers, no yeast (so marmite out unfortunately) skins on things, caffeine, also the amount she eats, literally one teaspoon too much sets things off, and she gets no warning. Its like "I need to toilet", and by the time she's stood up it's too late. So her diet tends to be:

chicken, fish, turkey, potatoes, peas, home made soup made my making her own chicken stock, well cooked cabbage, (she hates cooking it to a mush, but by doing so she can eat it), carrots, a small amount of leeks, tinned mandarin oranges, tinned peaches, a small amount of banana at just the right stage of ripeness.

Like the lady above Mum finds that drinking water with a drop of peppermint oil in helps hugely ! We use Doterra.

It's a long journey I can tell you, and it does beat you down. It's such a shame that so many people have this inflicted on them. We've also got one of those toilet keys, (RADAR) and that sort of helps peace of mind, so if you've not got that it's another thing to consider, not expensive either, less than £5.00 from memory.

My poor Mum has gone from a size 14 to a size 6 in about 3 yrs and has been classed as malnourished now. My advice is to try and get someone to help you on this road, as it's a tough one to tackle on your own.....

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Take care with all the food groups you are cutting out of your mums diet (without medical advice?) it's not surprising she is showing signs of being malnourished. Perhaps those liquid food replacements? Hope she gets well soon and can enjoy life again.

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Thank you Eadoem,

The dietician in the hospital has suggested food replacements to add in but they've got milk protein in. I asked if anything else was possible but so far nothing. We've had v. good news today that the bowel op that they thought may be necessary is now not, as they've managed to shift the blockage, so I'm going to ask if we can see a nutrionalist before we leave the hospital or as an outpatient appt. Thank you all for caring, xx

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Hi there Debs, I feel for you very much. I class myself as lucky compared to lots of people as I tend to suffer more with IBS C but I do gets bouts of diorrhea as well, normally coupled with nausea and this is when I feel poorly, almost like a tummy bug. I suffer with Emetophobia and have done for years and purchased a book 'The Thrive Programme' which is a programme for many phobias but the book I have is concentrated on Emetophobia. I started to read the book a few weeks ago but didn't get to the exercises in the book (you have to do these exercises for the programme to work); I got to the exercises yesterday and will be doing my first one today. The reviews on this book are amazing, it's worked for so many people and one person on this forum contacted me a couple of months ago and said that it had worked for her.

What I am saying here is I think that IBS can sometimes heighten phobias as quite a few of us tend to get anxious/suffer with stress etc. I'm sure that the Thrive Programme would help quite a few people to get to the bottom of there anxieties/stress etc. Since I've started to get diorrhea a little more with nausea it has heightened my Emetophobia hence going back to the book and determined to finish the programme to rid myself of this awful phobia.

I really feel for you as it must be awful not knowing if you are able to go out and if you do to be worried about accidents, it's bad enough thinking you may leak urine but it's much worse where diorrhea is concerned.

I so far have cut out raw carrots and onions (I'm in agony if I eat either), sweetcorn and eat very little broccoli. I am also now purchasing lactose free products as I'm convinced that is why I am now getting diorrhea.

I really hope that you find what diet works for you but it's worth looking at what you eat and may be trying the FODMAPS diet (I have printed the diet to follow).

Very best of luck.

Alicia

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Oh brocoli the pain!!! Why? I love it but cannot eat it

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I know, I love the stuff but cannot eat much. FODMAP diet in a couple of weeks, let's hope I find out what else I cannot eat so as to ease the IBS.

Makes me laugh when you have IBS C and they tell you to up the fibre intake!!

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I've had IBS D for 30 yrs and had all the tests and was told I just had to live with it! A couple of years ago I had enough and went to my GP and demanded they refer me to a NHS Dietitian and I was put on the FODMAP diet. It's hard work but it has really worked for me!

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I have had IBS for years. When I first started having IBS I was a teenagerand I didn't understand why I kept being so bloated. My symptoms got so bad, the distended, bloated tummy and needing the loo urgenty that I asked the GP to refer me to a dietitian for the low fodmap diet. That was just over four years ago. I have restricted what I eat ever since - but then I was diagnosed as having high cholesterol (heart disease runs in my family) and was given a low fat, high carbs diet sheet at the gp surgery. This diet to lower cholesterol conflicts with what you can eat on a low fodmap diet and really aggravates my gut. It is really very difficult getting the balance right between the two diets.

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I am like you but I went to a kinesiologist she seemed to help more then a regular doctor did for me I tell my husband I'll be there as soon as I can get away from the bathroom. I sometimes don't make it to the bath room I wear pads all the time being a girl. I try not to go Places to early in the morning as that is my worst time of the day for the bathroom. I am with you the doctors said I just have to live with it. My kinesiologist put me on inulation and body biotics then she said take natural calm when constipated. They seem to help make me more regular but their is the cramping etc etc. I can have empathy for you but not a cure if you find out anything we can post it here to help people is about all. Have a great day

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IBS/Colitis for 40+ years. Life was miserable for most of that time and without taking codeine phosphate, which made me ’safe’ for up to 4 hrs, life wouldn’t have been worth living but a year ago Consultant recommended Symprove probiotic. It took 12 weeks to make a difference, but what a difference! I will have to remain on Symprove for the rest of my life and for long journeys I still take codeine phos. but I can live with that and feel a new person. Over the years I have tried everything, gluten free for 2 years (just lost weight but no change in bowel habits), Loperamide (helps but wasn’t anywhere near as reliable as codeine phos.), cut out one food after the other, have been teetotal all my adult life but nothing made any difference. Codeine phos enable me to travel long haul (bit like a military exercise getting the dosage of codeine right) but Symprove has allowed bowel movements (sorry to be so explicit) normal, something they haven’t been in over 40 years!

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Oh wow ! I've not heard of Symprove probiotic but I shall deff ask the dietitian about this too before Mum leaves hospital ! Thank you for making me aware of more options to try.....

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hi isuffer with bipolar and take lithium daily for the last 10 years works great last December my mam passed away in march this year I quit smoking 30 cigs a day and now I suffer with dirrahea and cramps which my doctor said it was stress and anxiety I feel so frustrated as no matter where I go in the car I cramp up and need the loo I now avoid going out at all and its just destroying my life please has anybody any advice for me or treatments that can help thank you

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