I genuinely cant do this anymore : Hi everyone... - IBS Network

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I genuinely cant do this anymore

ccprincess profile image
153 Replies

Hi everyone. I don’t know how to live with Ibs anymore. It’s taking over my life and it just doesn’t feel worth it anymore. I’ve been on a low FODMAP diet for a week only and it was really good and then today all of a sudden I’ve been in severe abdominal pain with loose stools. How am I supposed to live my life like this? When I get the pain it’s so awful I’d rather be dead. I feel as though I don’t have a life outside of my house and everytime I go out I get so nervous and anxious. I have uni exams coming up and it’s really scaring me that I don’t have my symptoms under control. Don’t see the point anymore

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153 Replies

Have you tried fasting for up to 48 hours? Sometimes this will reboot your system into something approaching normality and can work for all types of IBS. It's a temporary solution, but one which can be repeated when necessary.

claire_louise profile image
claire_louise in reply to

I wouldn't suggest doing anything like this without professional guidance/approval. Like it or not, the human body needs food (and I say this as someone who is very underweight due to ibs). Fasting may be worth a try but definitely ask your doctor first.

in reply to claire_louise

This was suggested to me by a colorectal consultant and it really works.

claire_louise profile image
claire_louise in reply to

Fair enough, but everyone is different. From my own experience, not eating is one of the worst things you can do for ibs-c.

Marathoner profile image
Marathoner in reply to claire_louise

Hi all. On a side note...I have ibs-d, terribly. I do not fast, necessarily, but definitely eat super light. I know I'm gonna have problems when I have not been hungry at all in days. When I eat very light (2 hard boiled eggs for breakfast, steamed fish at lunch, very light dinner), it kinda does re-boot my system and symptoms of diarrhea subside when my hunger levels go up. My diarrhea is way worse when I'm packed full of food. They say eating very light meals is the way to go with ibs-d and I can confirm this. Plus, it helps eliminate the bloated belly and you just feel generally better.

Eliana5 profile image
Eliana5 in reply to Marathoner

Well..I would think that's okay, because there are times with my severe IBS-C..I was skipping meals or not eating enough. But unfortunately with bad consequences I never want to go through again. I went from 186 (which was overweight for my height of 5'5)..but I felt happy and healthy and was exercising a lot, as I don't own a car. In less than one year I went from 186 to 112 lbs. I looked like I had just come out of a concentration camp..it was just awful. I was doing the fasting thing and skipping meals, and I guess with my anxiety and "toilet anxiety" it took over my life. If I did not gain weight, they were going to put me on a feeding tube. I was getting called terrible names due to being skin and bones. With the help of a dietician and Ensure nutrition shakes and cb-1 weight gainer. I am now a healthy weight. I just don't want people ending up like me..fasting...due to anxiety over constipation, or just eating only one meal a day. This is why I am not for "fasting" or eating too light..because it can take over your life and cause more anxiety, hence weight loss. Severe.

claire_louise profile image
claire_louise in reply to Eliana5

Thanks Eliana, this is what I was getting at. I've been through a similar experience, not eating due to the pain and discomfort of constipation, plus fear of adding to the 'load' inside me. But it only made things worse and I too lost a lot of weight. I can see how short periods of fasting may help with ibs d - and eating light (whilst making sure you're still getting enough nutrients) is definitely the way to go - but not with ibs c. Your digestive system needs food to function, whether it likes it or not (and mine doesn't, most of the time!).

ccprincess profile image
ccprincess in reply to Marathoner

I do this too:) especially when I am eating out, I eat very lightly and get kids menus too. I feel as though overeating just makes symptoms worse!

ccprincess profile image
ccprincess in reply to ccprincess

when I'm a home I eat ALOT more

Eliana5 profile image
Eliana5 in reply to

Fasting for 2 days is an awfully long time. I can't see any Doctor who would even suggest this..

in reply to Eliana5

Do you think melatonin helps sleep as well as relaxing colon? Did you mention somewhere you found melatonin useful?

Eliana5 profile image
Eliana5 in reply to

I think it may have worked initially..I'm not sure..but it did not help after all with sleep, and not sure about colon. It may have helped somewhat, but I'm now on Trazadone. It seems to be helping somewhat..but it does greatly improve my anxiety..maybe sleep not sure yet as Psychiatrist said not to take Melatonin anymore..I think the Trazadone may be making me more constipated. 😓. Can't seem to win. Thanks for checking in on me, that means a lot. ☺

marie1961 profile image
marie1961 in reply to Eliana5

I've been on Trazadone for quite a few years it does cause constipation at first but this should wear off as your body gets used to it x

Eliana5 profile image
Eliana5 in reply to marie1961

Thanks. Do you mind if I ask what you take it for? And what strengh? I was told to start at 50mg for insomnia and increase to 150mg for insomnia. While it has not helped with the insomnia yet, it has been great for anxiety (alongside the Klonopin) and it lifts my mood. But I don't know..the constipation.😓.maybe I am on too high of dose? 😕

marie1961 profile image
marie1961 in reply to Eliana5

I take it for Anxiety I'm on 150 and find this higher dose now helps with my insomnia constipation was a problem so I started to make sure I drink a pint of water/squash in the mornings plus fluids throughout the day it's really helped xx

Kimberly99 profile image
Kimberly99 in reply to

I have had luck with melatonin! It does seem to calm down the spasms I get sometimes. I try not to take it too much to avoid becoming immune to the effect. Definitely worth a try for anyone with IBS.

ccprincess profile image
ccprincess in reply to

I havnt tried this no. I try to limit how much I eat though. I feel as though id struggle a lot with this especially not eating for 2 whole days.

IBS_Problems profile image
IBS_Problems in reply to ccprincess

I did this but eating very plain food I know I would be okay with plain chicken, ham, bread, pasta honestly all I wanted was a mc Donald’s but I do have to admit I didn’t have flare up during the prosess

ccprincess profile image
ccprincess in reply to IBS_Problems

Do you have gluten free pasta or normal? I’ve been having normal and wondering if this may be a trigger?

IBS_Problems profile image
IBS_Problems in reply to ccprincess

Normal I got tested for coeliac disease and I don’t have it so gluten is not the problem ask your GP to draw some blood and test for it

K x

in reply to IBS_Problems

That's what I thought until I had over 64 foods tested for intolerance. I did not have gluten intolerance but multi grain intolerance. I walked round the supermarket in a daze as I realised every food I was eating from bread to pasta, was irritating my guts!

Budgie5 profile image
Budgie5 in reply to ccprincess

It is really worth trying cutting out wheat. My doc said even if not gluten intolerant it does seem to help so many people with digestive issues. Personally I have suffered badly for years with constantly over loose bowels and pain ( worse than labour on occasion) and now I’m frustrated at all the wasted time! I just put up with it. Eventually I had investigations recently and was diagnosed with bad diverticula disease and redundant colons. This would be more likely to cause constipation so i suspect IBS was the bigger cause of my troubles. Anyway I was advised to eat three tablespoons of seeds daily to ‘bulk things up’! I was advised to SLOWLY build up to this over three weeks. Teaspoon by teaspoon . I am not a seed type person and chose pumpkin seeds as very tasty now I love them, in yoghurt or whatever. Initially it was strange for a few days but since has been revolutionary for me actually having proper movements! At the same time as doing this, I cut out gluten and everything settled so so nicely. One day I had flour tortillas and i was really ill for a couple of days. I’ve also had a piece of birthday cake and suffered similarly. So anyway, although my conditions now are more complicated, I have had IbS for many years and on this diet this is the best I’ve been. I’ve been told that it doesn’t do any harm cutting out gluten and the pasta is very tasty - my whole family have it now and prefer it! And maybe you could ask someone about adding the seeds but seriously I would not go a day without them now. By the way I haven’t had the gluten test because apparently you need to eat quite a lot of it for 2-3 weeks first for the test to be accurate and I can’t face being that ill when I seem to have the proof already. Anyway I hope you find some relief soon. Sending you a virtual hug.

Eliana5 profile image
Eliana5 in reply to Budgie5

I love seeds..especially sunflower seeds..the roasted kind..unshelled. Unfortunately I did not know how high of a fiber content they had, even more than almonds, etc..and since I suffer from a weak pelvic floor and chronic severe constipation..I was wondering why my stool was too big and bulky too push out. I try to have a low fiber diet as fiber does not make things better for those with severe IBS-C. I was eating handfuls of the seeds. I couldn't just stop at just a small handful. I sure do wish I could eat them as well as pistachios. You are lucky.

marie1961 profile image
marie1961 in reply to

I wouldn't encourage fasting at all what I have to do is Have a few Rich tea biscuits with a cup of tea throughout the day I do this for 24 hours it seems to work x

ccprincess profile image
ccprincess in reply to marie1961

oh I might try rich tea biscuits! I always get sweet cravings at night but can't have chocolate or crisps because they affect me. Do rich tea biscuits not affect you at all??? xx

IBS_Problems profile image
IBS_Problems

If you think of doing something calls Samaritan 116 123. Just breath are you on medication? I sometimes get like this. I have a councillor and a psychologist helping my anxiety have you thought of get professional help? And it’s one bad day just breath

K x

ccprincess profile image
ccprincess in reply to IBS_Problems

hey. thanks so much for your message. I am doing okay:) yesterday was really hard especially when I feel like everything I'm trying is not working. I'm considering going to my gp to ask to be referee to speak to someone xxx

IBS_Problems profile image
IBS_Problems in reply to ccprincess

So glad to hear it and I think that would be a good idea it’s just someone to let it all out to, hope you feeling much better soon

K xxx

in reply to ccprincess

May be ask your doctor for some food intolerance tests, for celiac disease. This will help you rule out most foods that might be upsetting you.

ccprincess profile image
ccprincess in reply to

I've been tested for celiac which I don't have, but id like to test if I'm lactose intolerant. You never know, even though I don't seem to get symptoms straight after having dairy xx

in reply to ccprincess

In the Uk testing for dairy usually helps for celiac disease. The tests are limited to a few foods mainly gluten found in wheat rye barley and oats, milk - yoghurts and cheese and egg. The milk contains lactase and this is true for goats and sheep milk as well. I love feta cheese - but alas it contains lactase but I can eat a little cheddar edam or gouda cheese but soft cheese cottage cheese yoghurts even if low fat will set me off. Egg does too - I used to love hard boiled egg sandwiches - half an hour later the gut would react. I went for years getting worse until I knew which foods to screen out.

I found I had an allergy food intolerance to the casein or protein in the cows milk. I guessed that I was lactose intolerant, an have felt much better since going lactose free with clearer sinuses and less congestion in the ears.

If you are grain intolerant without having a gluten intolerance where do you stand in the US? From reading papers on autoimmune disease induced by eating foods which you are intolerant to, are not in the mainstream of medical information.

Hardly anyone knows about grain intolerance including rice and maize - these phantom intolerances are not tested for, as the supposition is that only folk with gluten intolerance have a food intolerance. If you log onto certain websites or look up people like Isabella Wentz or Suzy Cohen or Jessica Madden MD you will find a different perspective on certain illnesses which you never knew about. Your post has been so popular with so many helpful replies you must know so many people are the same as -including myself .

Eliana5 profile image
Eliana5

Please don't lose hope..I'm also at my wits end with IBS-C. Tired of no life, no normal life, struggling, pain, isolation and loneliness of it all..but there is always new medications..I'm especially excited that the "miracle medication" Zelnorm (Tegarasod) is back on the market for treatment of IBS and pain and IBS-C. It was taken off in 2005, for the wrong medical reasons and after millions of Petitions from patients formerly on this med, FDA finally approved it for sale again. I have heard amazing success stories from so many people that were on it. It just got passed by FDA on April 8th. Have you heard of it or tried it? Don't give up..x

Fergie53 profile image
Fergie53 in reply to Eliana5

Thank you for the information, I’m in the U.K. can u get that medication here?

Eliana5 profile image
Eliana5 in reply to Fergie53

Yes, you can..I believe there it might be called Prucolapride..I'm not sure..but maybe just say "Zelnorm" and they should know. I guess it's also known as "Tegarasod"..

claire_louise profile image
claire_louise in reply to Eliana5

Prucalopride is a different drug to Zelnorm, I believe. The former is a laxative and definitely worth a try if you suffer from ibs c, but make sure you go through the potential side effects with your doctor as they can be quite nasty.

Eliana5 profile image
Eliana5 in reply to claire_louise

Yes..seems like side effects from just about anything are definitely unpleasant..

Eliana5 profile image
Eliana5 in reply to Fergie53

I'm not sure, but I think so..

ccprincess profile image
ccprincess in reply to Eliana5

hi. Thanks so much for your message. I really appreciate your help. Do you know where this medication can be purchased? id like to try it xx

Eliana5 profile image
Eliana5 in reply to ccprincess

Hi, thank you! I appreciate your kind response. I'm glad to be of any help. Both Zelnorm and Prucolapride are prescription only and can be prescribed by a gastro, colon and rectal specialist or a GP. I think most insurance companies cover these medications. Please keep us posted. ☺🌷x

RhiannonT profile image
RhiannonT

Hi. I know exactly how you feel. I've been dealing with IBS-C for 2 years on and off. I'm at my wits end sometimes and feel awful. You're not alone, have you spoke to your doctor about how you're feeling? It might be worth talking to someone, get it all out. Have you tried Constella? It's really worked for me. Xx

ccprincess profile image
ccprincess in reply to RhiannonT

hey. thank you for for message. I have spoken to my doctor and am currently waiting to be seen by a gastroenterologist. Should be soon I hope as I have been waiting 2 months already. id like to see a someone too. I'm going to ask my gp. I havnt tried constella no, ill look into it. thanks so much xx

RhiannonT profile image
RhiannonT in reply to ccprincess

You're welcome! Hope the gastro can give you some advice. Xx

Eliana5 profile image
Eliana5 in reply to ccprincess

Is there any way you can try a colon and rectal specialist instead?

ccprincess profile image
ccprincess in reply to Eliana5

im not sure. I was only offered a gastroenterologist. Would you say a colon or rectal specialist is better?? xxx

Shele121 profile image
Shele121

Have you been checked for other things to make sure the pain isn't something else?

I guess I'm fairly fortunate not to suffer with crippling pain but get terrible bloat which is depressing for me as it has hugely knocked my self confidence.

When I'm on the low Fodmap diet I do feel so much better but it's hard and still a case of elimination.

The other thing that helps me is silicon. A tablespoon stirred into water.

Hope you find some reprieve.

Xx

ccprincess profile image
ccprincess in reply to Shele121

I've had blood tests and stool tests and am currently waiting for an ultrasound. they've ruled out celiac but I'm not sure if it could be anything else? They suspect ibs. all of my symptoms do seem to match; and get especially worse after food. Im going to keep trying with the low formal diet so I just hope it'll help. Thank you for your message xx

ccprincess profile image
ccprincess in reply to Shele121

all I know is that it never used to be this bad! I've had problems since secondary but they've gotten significantly worse in the past year

Eliana5 profile image
Eliana5 in reply to ccprincess

Have you tried Levsin or Bentyl? They put me on that a while back ago..I took 4 a day either before, during or after meals. They are antispasmodics.

ccprincess profile image
ccprincess in reply to Eliana5

I havnt no. I will give them a try once I've given mebeverine more of a chance!

Purpletara profile image
Purpletara

Hi lovely, don’t give up! I know it’s lonely and isolating and painful but hopefully this is just a flare up for you.

We have all been where you are on this journey at some time or other. We have all felt the same. Please look after yourself. Do what gives you comfort and makes you feel safe and hang on in there! Nothing seems to cure this condition- you just have to find what works for you and keeps your symptoms manageable. I’ve found that a wheat bag which goes in the microwave (or a hot water bottle) helps with the spasms and is comforting at the same time. Sorry I can’t give you solid advice - we are all different and what works for one doesn’t work for somebody else, unfortunately you have to find your own way but, remember lots of people on this site are rooting for you.

Sending you healing hugs xx

ccprincess profile image
ccprincess in reply to Purpletara

hey. Thank you for your kind message. I will try the wheat bag! its okay, everyone is different thats what makes this so hard. Thank you for helping me xx

ElliceSamara profile image
ElliceSamara

Hi ccprincess,

I know EXACTLY how you feel. I was following the FODMAP diet for such a long time. At around six months, with so many successful introductions, I started getting pain, cramps and loose stools EVERYTIME I ate. It didn't matter what it was.

For me, eventually, I think I realised it was more about my mental health than anything else. The brain-gut link. You should read about it!

Please don't give up. See your doctor, get some support.

Xx

ccprincess profile image
ccprincess in reply to ElliceSamara

hi, I feel the same. no matter what I seem to eat, if my belly wants to flare up it will. Its so difficult. hopefully I will get to see someone to talk about it and maybe see if my anxiety is making it worse. Thank you for your help xx

Eternity78 profile image
Eternity78 in reply to ElliceSamara

Hi ElliceSamara ! may I ask if you have been prescribed any medicine to target mental issue ?? your case seems similar to me that's why I'm asking ..

ElliceSamara profile image
ElliceSamara in reply to Eternity78

Hey!

I have since Friday weirdly enough. I'll let you know how it goes?!

Eternity78 profile image
Eternity78 in reply to ElliceSamara

Thank you for your reply ! yess please keep us updated with your progress and how you feel on it ..I've been on many antidepressants for years now and they either make things worse with their side effects or just don't work unfortunately, ..hope they work for you as this drug is from the new generation 🤗

ElliceSamara profile image
ElliceSamara in reply to Eternity78

Ps

I have been prescribed citalopram x

Eliana5 profile image
Eliana5 in reply to ElliceSamara

Wow! You are lucky. I have to be on a cocktail for anxiety, emotion regulation insomnia and major depressive disorder. I take Remeron, Wellbutrin, Busphar, Klonopin, and Trazadone. Lucky me. 😓

hampson profile image
hampson

Hi there, like the last post said we are all different and some things work for us and others don't. I've suffered from ibs d and c for over 30 years. I have found that stress in my life brings it on especially when I'm on my period. I found relaxation and medication helps me. I tried the gluten free diet for 3 years which helped symptoms. Various meds. Are you veggie/vegan? Certain foods can trigger it off. Go to your doctor again, demand exploration of your symptoms. Please don't give up. Your young and life is out there for you. Don't let this condition beat you. I like many others have low times but you have to carry on. Good luck in your exams. Don't let it consume you x

ccprincess profile image
ccprincess in reply to hampson

im not a vegan or vegetarian but I don't eat red meats. this is just a preference. I'm on mebeverine but it doesn't seem to be helping. Thank you for your kind message I'm going to try my best to get on with my life xx

Gameofthrones profile image
Gameofthrones in reply to ccprincess

I used to be on mebeverine for some years, (colofac). Over the years it loses it effects, and not taken it for some years now. Buscapam and Alverine Citrate now. At one time Colpamin the pepermint capsules I tried a while, but these have now been seen to cause more indigestion than cure, pepermint oil is not liked by the gut. It has the effect of making the gut less able to deal with acid.

ccprincess profile image
ccprincess in reply to Gameofthrones

I'm going to give it more of a go as I've only been taking it for about two months. Ive heard of peppermint capsules too but theres such mixed opinions so I'm really not sure hmmm xxx

301246 profile image
301246

I am at my wits end too with this controlling problem. After colonoscopy and CT scan 12 months ago, told it was IBS. Still suffering daily with constipation and trapped wind. Saw consultant this week and is arranging a test for lactose intolerance. I have purchased The Kefir Solution book, natural healing for IBS, Depression and Anxiety and I am going to give it a 21 day trail, it's just drinking goat's kefir milk. Will come back with the results. I feel for you, my worst pain seems to be with trapped wind which I get at bedtime. The only thing that helps with the pain is Diazepam which doctors do not like to prescribe. Good luck, I hope you find some helpful remedies but remember you are not alone. xx

ccprincess profile image
ccprincess in reply to 301246

let me know how it goes. thats interesting. I've not been affected so much at bedtime but more in the mornings. Hence why I am terrified for my exams as they're early starts. why do doctors not like to prescribe diazepam??

Thank you for your kind message and for helping me xx

Eternity78 profile image
Eternity78 in reply to ccprincess

They don't like to prescribe it because they say it can be addictive and in the long term you will eventually need to raise the dosage as the initial dosage will not be working any more ..at the end they are afraid of drug abuse to the point of overdose that can sometimes be fatal !!

I begged my doctor for a diazepam to undergo a mini operation to remove a breast suspicious ( pre cancerous ) mass ..as every time i cancel due to stress related IBS flare up ( a mix of every symptom 😳) the night before the appointment , but he refused saying " i don't want to open a door of addiction that you can't handle and might be life threatening !!" as if cancer is not life threatening ??!

So narrow minded 😒😒

ccprincess profile image
ccprincess in reply to Eternity78

doctors are honestly so so bad. I feel for you. so sorry that they're not helping you as much as you'd like :( Stay strong xx

Eliana5 profile image
Eliana5 in reply to 301246

Let me know if you can how it works for you. I have severe and chronic IBS-C..and nervous about milk being constipating..which is why I had to cut back on yogurt with the Probiotics. I have always wanted to try Kefir..but not sure about goats milk. Doesn't sound too appetizing..

Squidge44 profile image
Squidge44

I know what you’re going through. I’m 74 and have had it since I was 11. Had operation last year to remove ovaries which had cysts on them and thought IBS would be better but no such luck. They also discovered I have diverticulitis.

My doctor suggested that I should eat anything I fancied as with IBS you’re damned if you do and damned if you don’t, so just eat and live your life. I’m trying to do this, and do you know, I feel it is helping a wee bit, as it seems to take the pressure off worrying all the time. I have some bad flare ups, but on the whole I don’t feel so stressed.

He also suggested I use Loperamide constantly. I’ve been afraid to use them regularly, but doctor says they won’t do any harm, so you could try this as well. Apart from these tablets I refuse to take any medication, as nothing seems to do any good.

Good luck in whatever you try, but the main thing is to try not to be so stressed (easier said than done), I know, but it’s never going to going away completely, so try to make the best of a bad job. Xx

ccprincess profile image
ccprincess in reply to Squidge44

wow thats a very long time. its hard to not live life and eat what we want to because of it. I know things that make it worse such as chocolate and fried foods. but, even when I do eat healthier I still manage to get flare ups!! for me its a constant battle between eating what I want and then alternating to healthier options. Thank you for you help, I really appreciate it xx

Shvuntz profile image
Shvuntz

Are you in the uk

ccprincess profile image
ccprincess in reply to Shvuntz

yes I am xx

jbrking profile image
jbrking

Awwww sweetie it’s horrible I know and so debilitating. Keep trying different things and get further tests. Have you been tested for coeliac? Most doctors say to try not having wheat or dairy but as you are doing fodmap anyway ....

After suffering for many many years myself and living on anti diarrhoea tablets I finally had tests cos I was being sick too. The doctor said it could be bile salt malabsorption or colitis. Both are very misdiagnosed. So I had the first test and that was positive (it’s just taking a tablet and being scanned and then being scanned again a week later) and a colonoscopy (camera up inside) which is not as bad as it sounds! Turns out I have microscopic colitis too. I am now taking questran sachets which helps bind everything. I still get cramps but they’re ok and I don’t gave diarrhoea anymore. Please go back to your doctor and ask for more tests. It may help if it write down when the attacks are happening; how long Before and what you are; how long you’re on toilet for; feel sick at all? It was only when I showed the doctor my diary of attacks and the fact I could spend hours on the toilet in the middle of the night and was being sick; I was finally referred. Good luck x

ccprincess profile image
ccprincess in reply to jbrking

hey. yes I've been tested for coeliac. they've said they suspect its ibs but I'm still going to have an ultrasound done. I've never heard of bile salt malabropition. I have heard of colitis. Would this come up in blood tests? as I have had blood and stall tests. My doctors havnt been very good so I have been referred to a gastro; when I get the appointment for that I will demand more tests. with regards to my symptoms I get really awful stomach cramps and the urge to go to the toilet. its like very loose stalls and once I've been, I start to feel better; but my stomach feels very sensitive after so I don't eat. When I am out, and not at home my symptoms do change a little. I get hot flushes with it (probably because of the panic) and feel sick too; as well as the going to the toilet and stomach pain.

Thanks for helping me and for your advice xx

jbrking profile image
jbrking in reply to ccprincess

No it doesn’t show up in blood tests. I had never heard of bile salt malabsorption either until the consultant suggested I was tested for it. For the colitis you need a colonoscopy and a biopsy. I know that sounds frightening to go through for some people but honestly it was fine. The pain was like a bad period pain. If you can ignore the weird feeling of something up your rear end and just watch the screen as they show where the camera is going its quite interesting and the nurses are lovely. The prep for it is worse as you have to drink some moviprep which clears you out - but again no worse than what you’re used to when having an attack of diarrhoea. It just doesn’t taste great so I mixed mine with squash and held my nose! Yep I used to get sweats when sat on the loo having an attack so don’t think that’s down to any panic. Def ask for a referral to gastro and do the bile salt one first cos that literally is swallow a tablet, wait a few hours and lie under a scanner for 10 mins, then go back 7 days later and be scanned again. Doesn’t hurt or anything. I had been suffering for years and I’m finally having normal bowel movements cos I’m taking these sachets of questran. Still get some cramps and bloated etc but not running to the loo or thinking I’m going to have an accident when I’m out or in the middle of the night. The questran also helps with the colitis too so if your bile salt ones comes back positive - even if only mild - then you don’t have to have the colonoscopy if you don’t want to but honestly I didn’t have any sedation or gas and air and would rather rule out anything else it might have been. Caffeine can aggravate it (coffee, cola drinks) so does alcohol so try limiting them and see if any better.

ccprincess profile image
ccprincess in reply to jbrking

ill deffo consider this! thank you so much. x

Lancs65 profile image
Lancs65

Hi like squidge44 above I'm older and have always had this condition though there was no such thing as Ibs then like squidge44 I just stopped worrying and started to eat as normal and it worked for me too you say you have exams coming up so could be the stress of those - I agree you should return to your doctor and push for help. Your young life is waiting- good luck with everything

ccprincess profile image
ccprincess in reply to Lancs65

thank you for your advice. i hope I will get more help xx

Gameofthrones profile image
Gameofthrones in reply to Lancs65

In the eighties it was commonly called "Spastic colon" or a number of undefined names. Since more people started getting it through stress, strong antibiotics, and rushed food and not enough home cooked with some fibre a day from mothers cooking!

Lancs65 profile image
Lancs65 in reply to Gameofthrones

That's it couldn't remember the name!

FerdyOne profile image
FerdyOne

It sounds like you have IBS-D? I have had this since I was at primary school. Not diagnosed until well into my twenties. I take Codeine Phosphate (2 X 15mg a day). A few years back a GP suggested I look at foods rich in soluble fibre. He also recommended golden linseed (whole, not ground) which seems to have a good effect. Are your forthcoming exams causing anxiety? This will not be helping. Your university should have a counsellor you can see. If not look for one in your area. If you are in the UK, do a search in the 'counselling directory'. For anxiety also look at mindfulness/meditation. Google Jon Kabat-Zinn. Has a fair bit of his work on YouTube. Best wishes...

ccprincess profile image
ccprincess in reply to FerdyOne

yes I think it may be IBS D I've been suffering since secondary school but it was never as bad. Id get stomach aches randomly but not so much diarrhoea. For the past year though it has gotten significantly worse. again, my doctors have always brushed it away. I've been seeing them for general stomach issues for many many years and everytime I was told to take paracetamol lol! I think my anxiety is making my symptoms worse yes. I am looking into seeing a counsellor at my uni! thanks so much for suggesting it, I never thought of it.

Again thank you for your help, its much appreciated xx

FerdyOne profile image
FerdyOne in reply to ccprincess

Glad to have helped! Some Universities might only offer 'limited' counselling, relying on referring you to online resources, or use 'CBT'. See what they offer, but if not giving the support/result you need check out counsellors locally that you can see. Many will take a smaller fee for people with limited resources/income. (My wife is a counsellor.) With Jon Kabat-Zinn look out for 'body scan'. Takes half an hour. When I have felt stressed have used it but was so relaxing I fell asleep before the end. Paracetamol about as useful as a chocolate teapot for IBS-D! Codeine Phosphate however works well for me and is commonly prescribed for the condition. Best wishes..

VA80 profile image
VA80

Hello,

This may not be something that helps but it has gotten rid of IBS for me and a few people I have passed it on to:-

A few years ago I was suffering from constant stomach issues from bloating to cramps to constipation to diarrhoea and no two days were the same. It was very hard to live with and very upsetting. The doctor told me I had IBS and to try eliminating one food at a time, e.g. Gluten, dairy etc to see what worked. This made no difference.

I then went to the health food store Holland and Barrett (in the UK) as they take a blood sample and test it for you. The nutritionist said it could be a number of things but also asked if I ate atificial sweetener. I did, (on a very regular basis), as I was trying to lose some weight and thought that diet foods would help. He then told me the first piece of advice he would give me would be to give this up, especially aspartame as it is a chemical which is not supposed to be ingested in large quantities and has an extremely negative effect on lots of people. I was eating it all the time -

Sweetener in my cereal and in coffee/tea

Diet coke, sprite and Cordial (in the UK, most of the full sugar ones also have a percentage of sweetener in them now as well because of the sugar tax - I swear the powers that be are ok with poisoning us all). In fact there are very few sweet drinks that do not include sweetener so check labels carefully.

- low fat yoghurts (SOoooo many of them! Even Activia low fat which is supposed to be good for your gut)

- flavoured water!!!!!

- some fresh orange and apple juice

- some cheap ciders and flavoured beers

-lucozade sport

-sugar free chewing gum and mints

-lite hot chocolate drinks

The list goes on and on and on.

It is also in several medicines that are sweetened, e.g. Lemsip and I have also heard it is in Imodium (how ironic seeing as it is supposed to calm diarrhoea!) I have heard that most medication that is dissolved to be drunk in water may contain sweetener to make it more palatable.

There is also sweetener in some of the probiotic drinks we are constantly being told will settle our stomach for the day ahead, e.g actimel

It takes a while but I started by checking every label and avoiding all artificial sweetener. These have many different names but common (in the Uk) are aspartame, Sucralose, saccharin etc.

Overnight my problems disappeared! My stomach literally returned to being calm and normal for the first time in years and I have been fine ever since.

I also told my mum and sister as they had worse problems than me. My mum was diagnosed in 1985 with IBS and had always just "managed" it. They both were cured as well by cutting out sweetener. My sister had been at the stage of giving up her job as a fitness instructor as her stomach was so bad she couldn't get through a class. The sweetener in the lucozade sport she was drinking at every class was causing it.

This was all in 2007 and since then I have told many people who have not believed me at first but once they have seriously checked all labels and tried it, they have been amazed.

My mum said it made sense for her, at the lowfat diet industry started in the 1980s and that is when she started getting IBS. Also it often seems to be women who have more issues and in my experience more women than men buy these products. The only man I ever helped by telling him was my brother in law who was in agony and on a diet before his wedding. He had been stocking up on low sugar products and this was what caused his pain.

I have also read recently that stomach issues in children have increased massively since 1990 and researchers are trying to find out why. Every child I know is constantly being given low sugar juice, yogurt etc as their parents think they are healthier. Before the 1990's no one drank low sugar juice etc as a child.

I believe that the food industry know the risks of sweetener but make far too much money from it (one tea spoon of sweetener is a tiny fraction of the price of sugar).

This is well worth trying, it has changed my life. If you are worried about weight gain, I found I lost weight by eating more natural products and regular sugar when I feel like it.

I hope this helps someone!

Fergie53 profile image
Fergie53 in reply to VA80

Thank you, this is very interesting! I have tried to cut out aspartame but difficult as u know it’s in so many products, I’m going to try harder!

VA80 profile image
VA80 in reply to Fergie53

It is totally worth it! You actually get used to what to avoid pretty quickly but checking labels is hard at first. Drinks are the most difficult but I tend to stick to 85% water, coffee, tea, herbal tea and the occasional sugary drink but check all as 95% have sweetener now. The ones that don’t are fever tree tonic, coke, and a couple of more expensive cordials.

Good luck.

ccprincess profile image
ccprincess in reply to VA80

hey. wow thats very interesting! thankfully I don't really have anything with sweetners anyway. I only drink water. So not sure whats causing it for me :(. I will make sure I stay away from them anyway !! thanks so much xx

Sylvie200 profile image
Sylvie200

I'm so sorry you are suffering like this. You are not alone though. Please talk to somebody; your doctor, a relative or friend. It sounds as though stress is making it worse. There is a very helpful website, helpforibs.com which has been extremely helpful for me. Basically it is a soluble fibre diet and if you stick to it you will hopefully start to improve. Also Loperamide might help you through some of the worst days. Please do not despair. I do understand how desperate this awful condition makes you but things can improve. Good luck.

ccprincess profile image
ccprincess in reply to Sylvie200

Hey. Thank you so much for your advice. I hope I will learn to control it :(. Thank you again xx

AngelaH53 profile image
AngelaH53

Don’t give up! One week on the FODMAP diet is not enough time to feel accustomed to it and feel in control. Have you seen your GP? Have you been diagnosed properly? I completely understand how you feel, but don’t give up on all of the good things that are ahead of you. You are too young and on the cusp of your future to allow this to over take your happiness. As a mother, I’m wondering how well supported you are, in your academic life, as well as your health problems. I would suggest you speak to someone, try to explain that you are feeling overwhelmed with life at the moment. Im wishing you good times. Don’t give up x

ccprincess profile image
ccprincess in reply to AngelaH53

hey. I'm going to keep to the diet and see how it goes. its really hard. at my age I'm surrounded by my friends who can eat whatever they want. It makes me miserable. I havnt been diagnosed. they say that they "suspect" its ibs. I'm awaiting an ultrasound. my mum also has ibs so I do get help from her however she has controlled hers more than me from acidophilus. I tried this but it didn't help:(. I do find it really hard to talk to people about it because I don't feel like anyone understands unless they have it. I don't want to come across as if I'm constantly moaning. Thanks so much for your help and advice, I really appreciate it xx

AngelaH53 profile image
AngelaH53 in reply to ccprincess

Keep going - stay away from artificial sweeteners. There are so many alternatives these days. It does take a bit more thinking about, but on the plus side, it’s very good for weight control 🤣. Almost everything that is delicious and fattening has gluten in! It takes will power. You’ve obviously got your lovely mum who understands. I find that being honest and open with friends; it’s amazing how many other people struggle with issues that they keep secret. In restaurants I usually just say I’m gluten free, then ask to avoid garlic and onions - it seems just easier that way - I can always avoid broccoli or other obvious ingredients. Buscopan/mebeverine help (ask your doctor to prescribe it as that way it will be cheaper, for a more plentiful supply). Good look, with your food, your exams and your whole wonderful future. Take care little one x

ccprincess profile image
ccprincess in reply to AngelaH53

I'm on mebeverine now so really hoping its going to help me!! :) Take care too xx

Keepstrong profile image
Keepstrong

Hi ccprincess 🤗

I was dignosed wayyyyyy back in 1988 I was quite young, I'm 51 now .

I have my IBS under control because like my other long list of physical conditions , I refused to let these conditions control me even though there is no cure, so I controlled them apart from my new dignoses of FND I'm only getting around that now. But my point is that the only thing I did to help control my IBS is to go on a high fibre diet an to like one of the kind comforting people above mentioned, I cut out anything containing high quantity of sugar also I started to eat fruit in the morning for my breakfast with or without cereal. If I was having it without cereal I would pour a full yogert over it. I also used Fibro jell twice a day and also movical every morning. This prevents you from clogging up and then having a over spill like what you're going through right now. It's where the digestive system can't break down the food because you maybe over stressed, up tight ,anoide , frustrated etc.😣😠😖 So the bowels get blocked up both the small an large back bowel and they go into spasms an this is what may cause severe constipation an then diarrhea . 🙄

I had to even explain this to my own two sons as they too have IBS. One my son's was so bad he would have up to almost 8 trips in extreme hurry to the bathroom in as less as 12 Hours.😣😩😕 He had all investigation done an all thank God came back clear an he was dignosed with IBS . Now he is doing what I have suggested here an he only goes twice a day normally and only if he has a very busy day at work as he is a assistant head chef then he would get the bad cramps same as I would on a flair day , 😕and as some of the kind people above mentioned, a heat pad on your tummy is the best way to ease the discomfort cramps. 😀🤗I myself would use a warm heat pad and also have a cuppa warm Green tea or mint tea or lemon and green tea and do some very slow breathing. 😋☺️I use to upto 3 years ago was a holistic therapists of wide range of therapies an Counciling. An when I stopped I had to find someone who be able to help my clients for when I was going to retire. 🤔So I searched the YouTube videos, I use to make guided imagery relaxation CDs and would give them to some clients to help them in-between visits,📀💿 so I needed to find a video link to take over for me 🤔👍 💡and that's Where I found the meditation vacation and also another one was Jason Stephenson and also Michael Seeley .🖲️🖥️ These all do guided imagery relaxation meditation just like my CD's.

An though some people say nope can't do meditation, trust me just listening to these videos and following their instructions you will find so much benefits from them and so will your IBS . 😀👍🤗

The most important thing for you now to do is to go get a small pot. Put one cup of milk into it. Put one tea spoon of black pepper an boil it. 🤗Drink it while it's hot but not to hot that you would burn yourself, an then only have a diet of toast and tea with little to no full suger not sweetener like mentioned by the kind person above comment 🤗 . If you can use the likes of still water and make your own favourite fruit juiced an place them all into a bottle in your fridge you have your own pure natural flavour water 😋☺️ you could from time to time if you wanted something fizzy you could use sparking water but please be aware that this kinda water is a very big cause for abdominal cramps. 😖😖😖😩 .

You can make your own veg drinks too by boiling up your favourite veg add a little bit of bisto/Oxo or even a pack of cream soup and then when it's boiled and cool down you put it into a mixer /blender/ juicer and you then bottle it preventabily a glass one as it lasts longer to stay fresh and when then place it into your fridge an have a glass just like the fruit one an these ingredients will help you to stop getting bunged up .

But for the moment like one of the kind comments above 🤗 i too suggest you let your system reboot by not eating food for just 24 hours but have toast and not strong tea or coffee. Some people say you don't drink coffee if you have IBS you only drink tea but it's a well known proven fact that there is actually more caffeine in tea then coffee believe it or not.😲🤔 .

When you start back on solids do it extremely slow and avoid veg and fruit for 3 day's also any thing sweet. You could try start the Fibro jell after 48 hours. All this will help you get control over your condition and up your mood. Fresh air to your favourite places that you love that has a bathroom near by but don't think of it just reassure your subconscious that the lue is there but you won't need it your gone to enjoy this day. That way you are reprogramming your mind and body that you are in control of your condition and your life and this condition is no longer holding you back from all you want to do. 🤗🤗🤗👍👍💪 Your stronger than your condition always remember that lass. Sending you soft healing hugs with comfort love and light to you and all your situations. 🤗🤗🤗 Be well and keep strong 🤗🙏😇

ccprincess profile image
ccprincess in reply to Keepstrong

hey. thank you so so much for all of this advice. I look forward to trying it and seeing if it helps me. I can relate to your son, I think I have ibs D so I go toilet after eating. Its so painful. I get anxiety when it comes to eating out.

I really appreciate it. All the best to you too xxx

Keepstrong profile image
Keepstrong in reply to ccprincess

🤗🤗🤗 no probs lass , an you can always contact me for a chat 🤗🤗 be well and keep strong Lass 🤗😇🙏

Houseofpain profile image
Houseofpain

Hi, firstly wanted to send my love over to you and echo the sentiment regarding calling the samiritans who you can call 24/7. Regarding the fodmap, I know how difficult it can be and without someone else ie a nutritionist it can be too overwhelming. I know it's early days but you may have to hang in there with the fodmap for longer. Can you get even just a little bit of extra support at the moment? X

ccprincess profile image
ccprincess in reply to Houseofpain

hey. thank you so much for your kind message. I havnt got a nutritionist. I'm going to try the fodmap, even though its really hard. Im also going to ask if I can see someone to talk to about it. I do think anxiety may also be affecting me. Thanks again xxx

Lactosebitb profile image
Lactosebitb

Know that you are not alone and there are people that care. I have had ibs for over 30 years. There was a period where for 3+months I couldn't leave my house because I couldn't leave the bathroom. You need to do a few things - find a medication or a probiotic that helps you digest the foods and you need to develop a coping system that helps you control the panic in your head. For me deep breathing has helped calm me down whenever I feel paniky or stressed. Even 5 minutes of breathing helps. Find a spot where you can gentle rub your body - your stomach, your right thigh - this tends to distract your mind and calm your down. It helps with the pain too. Look up the vagus nerve - read up on it - this can be a trigger to some of the symptoms. Understanding your illness and trying ways to find ways to lessen or control the overwhelming panic and pain will help. Just getting through an episode more quickly or better will build confidence for you and make the next one better. Also for me taking a probiotic change my life - in fact it stopped my ibs-d for years. I have had to switch out the probiotic now - but look into it for you. And always when feeling so low and helpless talk to someone - and tell yourself, outloud - I am worth it and I can overcome this. God bless.

ccprincess profile image
ccprincess in reply to Lactosebitb

hey. strangely when I do rub my stomach It does help a little! I will take your advice on board and hopefully it'll help me. I started the probiotic accidophilus, but unfortunately it didn't help me:(. not sure why! Thank you for helping me. I really appreciate it xx

Lactosebitb profile image
Lactosebitb in reply to ccprincess

Just don't give up or lose faith. It can improve - even if it is very gradual. Try another probiotic or yogurt (I eat lactose free yogurt -as part of the issue is with ibs you often don't have the correct bacteria in your gut). And deep breating will help - its hard to enjoy life at all if you are always overwhelmed or stressed. With ibs - its your gut/gastric system and your mind that you have to calm. Good luck and stay strong

ccprincess profile image
ccprincess in reply to Lactosebitb

thank you:) do you know any other probiotics that are effective for ibs? xxx

Lactosebitb profile image
Lactosebitb in reply to ccprincess

I was taking the accidophilus type - and it worked for 7+ years - then I seemed to develop a citrus intolerance so had to stop it. I found one on Amazon that was citrus free, dairy free etc - Ultimate Flora. I take it every other day but I eat lactose free yogurt (which is much like a probiotic). But I recommend talking to your local pharmacist for suggestions. You might also consider whether you have food intolerances/allergies. I discovered the citrus and pineapple just recently. Good luck

Gameofthrones profile image
Gameofthrones

Its a hard life living with IBS. That in itself is bad enough, but if you add a medium Hiatus hernia and diverticulitis into the mix, believe me, there are days, i just want to stay in bed and not get up for a few days. Luckily Im retired so not a problem. Anxiety always makes IBS worse, I have been on Benzos since 1974. Recently changed my dose of Diazapam, because Im 68 this month, and have ever so light slight short term memory. But been checked out, and haven't got dementia or a real problem. With some people, many say avoid certain food. This depends on a great many things. I eat a lot of cereal and milk, because I am riddled with Arthritis, I have always kept my milk level up to keep what bones I have calcium full. I can eat one food one day that will agree with me, eat it next week and will have an effect. Controlling your anxiety is all important to controlling IBS. But its not easy. If you have anxiety with is affecting your life like Mine did, Claustrophobia, Agoraphobia, fear of the huge sky! Trouble with sweating, dizzy spells, dont like being in a social environment like a noisy party. I had really good results from seeing a psychologist for 6 months, on a relaxation Cognitive therapy course. For years, I couldn't go into stores like Boots, Arndale centres, and big store, without running out again. But over a period of a month After my sessions, I went with my psychologist to stores a few times, and tell him how I felt, and put into place, the Fight or Flight response into play. Imagine some weeks later, found myself in a C&A...........and found myself not feeling the type of panic I once did. Other days I ventured into a M&S store, and managed to go to the bottom of the store, got used to the sensation, then calmly walked back out again. Eventually, I could go into any store, and go and shop with confidence. I cant describe the feeling of elation knowing you have beaten it, because in the end its up to you to get yourself better, the physiologist just pointed the way and my illogical fears.

As far as IBS is concerned, if you dont play on it , it will get better, but will always be around , its knowing how to relax your stomach muscles and reduce the bloating. Definitely keep of strong coffee, dairy products such as cream buns, a little cheese is ok, Cottage cheese can suit some people, but with me it sometimes gives me wind. Always try and eat main meals at mid day, not evening, and never eat after 7pm in the evening. To start back on food, my main plain food first thing is scrambled egg on toast. drink plenty plain water, avoid all fizzy for a while. There is so much to IBS, I cant possibly put everything I have tried over 30 years I have had it, on here. As you mature get older, the symptoms do lesson, but Not if you dont do gentle exercise, not being active enough, stores all that nasty gas, and like this week, its been quite painful even at night. best of luck :)

ccprincess profile image
ccprincess in reply to Gameofthrones

hey. I'm going to see someone in order to calm my anxiety. I hope it works for me. thank you for all of your advice! I will take it all on board. I don't drink fizzy drinks at all as it affects me way too much, or juices in fact. I drink water always. I hope my symptoms will lessen over time. Again, thank you so much xx

Eliana5 profile image
Eliana5 in reply to ccprincess

I know Trazadone and Klonopin 2mg in morning 2mg late afternoon have been a Godsend. I did try the "Natural route" once. SAM-E, GABA and L-theonine. But Unfortunately these supplements for anxiety does not cross the blood-brain barrier. Although SAM-E boosted my mood a lot..them it popped out after a year.

Stuart24 profile image
Stuart24

Hello, this is my general response to help people find a baseline. First, go to the doctors and get yourself checked for intestinal infections, and whatever other tests they want to do. Most people find they are all clear, and that IBS is a condition brought on by our modern diet, freely accessible food, sedentary lifestyles and usually a trigger of a temporary infection. After 27 years of suffering with IBS I have found that the long-term solution that actually works is all about vitamins, periodic fasting and knocking out a few toxins that are freely dished out by the food industry. You are effectively the manager of a “food nutrient extraction factory”, I know that is obvious, but I have found that IBS is not about medicines, but about changing the way you run the factory, and thinking about it in that way.

This is based on some excellent publications, and also by observing how healthy people live. But, if you are all clear from the Doctor’s, then the first thing to sort out is your vitamins and the timing of your eating and fasting periods. An incident of food poisoning or infection can start you on a cycle that you need to make a really concerted effort to break out of. IBS causes vitamin deficiencies which are practically impossible to overcome in most people’s diets, especially because you are probably eating selectively to manage your symptoms. Your vitamin levels affect the health of your intestines, and the health of your intestines affects your vitamin absorption, so it is a vicious circle that you have to break. If your farts really stink like something died, then this is because partially undigested proteins are making it through to your large intestine and the amino acid lysine is being metabolized by bacteria into cadaverine and putrescine which are the compounds that give the smell to rotting flesh! – you yourself are not rotting, and this is just temporary, but it shows that you really need to sort your digestion out.

So, get some really good, expensive, multi-vitamins (ideally constituted for your age) and take them without fail every day before your breakfast. Get a blood test for Vitamin D and get you doctor to judge your supplement level required in IU’s to get you well healthy for Vitamin D. Do not get vitamins with high calcium and magnesium content initially as certainly in large doses these minerals can mess you up as they consume your stomach acid, and you should get enough of these minerals from your diet. Magnesium particularly can give you diarrhoea. If you are on low FODMAPs, go for all lactose free dairy products to boost your calcium. At the same time, sort out your fasting periods immediately. This is normally completely overlooked by GP’s, but is an absolutely essential element for resolving IBS. Your small intestine should be practically sterile, and your stomach acid along with bowel cleaning during fasting (called MMC) will usually do the cleaning. You need to fast for this to be effective, and by that I mean, ABSOLUTELY NO eating in between meals, only water, or zero-sugar drinks. Imagine that you never washed your dinner plates and just kept putting food on them all the time!, they would be permanently loaded with bacteria. You need to give your small intestine plenty of time free of food for cleaning and maintaining the factory. The modern scenario of have cupboards full of rich foods permanently available day and night is a modern luxury outside of the original human design. Your stomach will sort itself out when you have got control of your small intestine (although if you've got gastritis you'll need to finish a course of omeprazole first), and then your large intestine will improve later as nutrients are more efficiently absorbed from your small intestine. Furthermore, you should be able to avoid future bouts of gastritis as during the fasting periods, your stomach acid is more neutral at nearly pH 4. As a basic program, eat a good breakfast at say 7am (porridge with 50% lactose free milk) or what suits you and then a good lunch at 12 o'clock - absolutely no food in between. After lunch, no food at all for at least 5 hours, and eat well again for your evening meal because it has got to get you through the night. No supper or snacks, no food or milk at all until breakfast the next day.

The other aspect of IBS is that some food additives are quite simply toxic for you and cause direct inflammation of the colon, or they are laxatives that give you diarrhoea that you didn’t realise you were eating. These are to be considered separate to the usual SIBO mechanism that you are dealing with above:

1.) Try to seek out and eliminate “trans-fats”. These cause direct inflammation of the colon, separately to bacterial overgrowth and you will be more sensitive than most because of SIBO and this confuses what is causing you trouble. Chips, hash browns, butter, doughnuts, popcorn and things cooked in cheap or old frying oil as you find in many restaurants and commercial products can give you colon pain directly through inflammation. It usually passes in a day or so, but trans-fats are bad for you in a miriad of ways, not only by inflammation of the colon. Ideally, starches should only be boiled, rather than fried.

2.) E407, or “Carrageenan” – is a high MW galactose food additive derived from a red seaweed, which is only present in small quantities as a thickener, but even at that level it has been shown to be “highly inflammatory to the digestive tract” and associated with IBS, colitis and other GI diseases. There is loads of literature and objections to this substance on the internet. It is present in cheap Crème Caramels, and many other dairy and meat products. After weeks of good health, just one of these products knocks me out with colon bloating and pain. I have found this by trial and error several times. Food tests show that even the food grade carrageenan contains between 2 and 25% of the non-approved “degraded” carrageenan, which is colon damaging and carcinogenic. Some food agencies now prohibit this additive altogether, and it may be responsible for a lot of IBS cases. It may be found in chocolate milk, cottage cheese, cream, crème caramel, ice cream, almond milk, diary alternatives, such as vegan cheeses or non-dairy desserts, coconut milk, creamers, hemp milk, rice milk, soy milk, and particularly processed meat. It is used extensively in cheap meats and is injected even into beef joints – so always get organic or local butcher fresh good quality meat!). It may be labelled as E407 or Carrageenan, but if you’ve got IBS, consider it as highly toxic for you. It may take a couple of days to get over a dose of this.

3.) E338, E339, E340, E341, E450, E451 and E452, are phosphates or polyphosphates of different elements. Natural phosphates are essential for life, and your body is full of organically bound phosphates, however, free ionic phosphates have several problems. Firstly, they are laxatives and will give you diarrhoea (sodium phosphate was once used to prepare patients for colonoscopies!). Secondly, they are associated with cardiovascular disease and accelerated aging. Since the 1990’s we are now exposed to twice the amount of added phosphate in foods, and this is bad. There are calls to have added phosphate labelled on products as a health warning. Particular culprits are mass produced sausages and processed meats (another reason to go to your local shop butcher), some cheeses, and cola (both diet and normal).

Red meats take a long time to digest, and also contain some trans-fats, but are usually tolerable. Only have them once a day, and just a light salad to go with them, not a load of starchy food or grains, as they have long digestion times. Ideally, you don’t want carbohydrates being held up in transit with heavy meats.

You will feel hunger in the fasting periods, but this is doing you good!, and you must NOT respond to it - only with water or no-sugar drinks. This is CRITICAL. Importantly, when you are feeling better, do not resort to your old ways, you are still recovering, and you need to make a life-style change to have this level of discipline in your eating and continue with it. Do start doing some exercise if you don’t already, as this will really help with your gut motility, and your general health. It takes a few weeks at least, and you need to persevere. You then need to maintain a healthy and consistent way of eating and always keep the vitamins topped to prevent you from relapsing. In a couple of weeks, you should be able to be getting off the low FODMAP diet, and begin mixing back in the higher FODMAPs. Eventually, you can forget about low FODMAPs altogether, depending on how well your small intestine is performing.

There is a lot of support for L-glutamine to help with repair of your intestinal lining; this means buying 500g of the bodybuilder powder type and having a couple of tea-spoons of this a day, one before breakfast and one just before you go to bed, and you can have this in a light cordial drink.

A lot of this was taken from this excellent paper below, but it does fit exactly with what I have experienced. For the first time I really feel in control of the IBS mystery that has been a burden in my life for years. Good luck. Please reply if this works for you.

Treatment and Management of SIBO — Taking a Dietary Approach Can Control Intestinal Fermentation and Inflammation

By Aglaée Jacob, MS, RD

Today’s Dietitian

December 2012, Vol. 14 No. 12 P. 16

Eliana5 profile image
Eliana5 in reply to Stuart24

Wow..thanks..but I don't know about the original poster..but I'm just overwhelmed reading this. I'm sorry. It's so much..my head is spinning..

Stuart24 profile image
Stuart24 in reply to Eliana5

Thank you. This will sound a bit mad, but how I found this was camping at a Christian festival, where I was effectively "cured" for a week. I didn't know why at the time, I just was, I could eat anything at all with no side-effects. A year later, I was suffering with IBS really badly, I couldn't get over it, nothing was working. I prayed real hard for a solution and a permanent fix to end my suffering. There was no immediate miracle, but God put me to thinking about what had happened at the festival, and what I did there. I pieced together all the events, and that vitamins and fasting were the main answer. A few days later I found the article by Aglaee Jacob saying the same. But there was more too it, because I still tripped over and didn't know why. This put me on to the toxins, of which there are probably many more I've not covered, but I am still researching. I am just trying to cover the main points to get desperate people back on track.

I am convinced that IBS is curable, it's just that we have to recognise that our bodies have limits, it's just that we don't have thousands of years of knowledge and education of know how to handle our diet in the modern age.

I've never really suffered from IBS-C, but this may be due to the body adjusting to a steady stream of phosphates in diets which are laxatives, i.e. stop water adsorption from your bowel. Your large intestine adjusts to the high amounts of dehydration required to counter the phosphate laxative effect, and then when you don't have phosphate, you over dehydrate and get IBS-C. So, it swings to and fro.

Equally, I agree that IBS is not driven by anxiety. I have heard of studies that now connect it the other way, that IBS drives anxiety by an organic route, so the two may be related, but the other way round. Stressed or not, if your GI system is not in good health it will not perform well. Hopefully, by having a plan and a bit more knowledge this can reduce people's anxiety about the problem.

Eliana5 profile image
Eliana5 in reply to Stuart24

I wish I knew the answer. It's all so complicated. I'm just tired of living like this, it's a very lonely and isolating life..and lack of one from all of this. To think..of many many decades, I took normal bowel movements for granted. Never thought in a million years, I would be suffering and on a laxative. Praying does not do anything. He is not listening. 😟😓

Lantyrn profile image
Lantyrn in reply to Eliana5

"Praying does not do anything. He is not listening." Well said, Eliana! People really need to stop believing in an invisible being. If God is so wonderful why does "he" ignore everyone?

Eliana5 profile image
Eliana5 in reply to Lantyrn

I believe..he created the universe. Sent his Son to forgive our sins. Unfortunately, Satan rules the world. That's why so much suffering and wickedness. God does not want too see his children suffer. I hope you will read the good news. jw.org. ☺x

Stuart24 profile image
Stuart24 in reply to Eliana5

Wow, thanks to you this time! As a scientist you have to keep an open mind to everything, or you will never learn anything new. I became a Christian only a few years ago, as there was no other way to rationalize the ghosts that I have seen over the years - and that other people experienced with me. These things are rare, but you just cannot ignore them. Creation is far beyond our understanding of what we can see in everyday life. As you know, he is not "on-demand", but he is the most compelling thing you can ever study and never lose interest in. He answers your prayers in different ways, that you do not expect, and long term for your greater good. Thanks for inspiring me with your faith.

torcol profile image
torcol

Ccprincess

You absolutely have to manage the anxiety FIRST! It’s not easy, you have to literally retrain your brain. Many will say it is not that I am thinking about it, the pain is real, it’s not what I ate and so on. It is not yet considered a “ medical disease” because it is found to be 90 percent self induced. As a sufferer for many, many years I can attest to the fact that the brain and gut are indeed connected. I can attest that each day I brought the majority on by thinking constantly about it. What if, how will I, can I get from here to there, I feel bad, my stomach hurts. Much is in the mind. My friend, my daughter, my mother, relatives, all had guy aches everyday that paralyzed them. After taking antidepressants, they are all fine now. Without them it begins again. If an antidepressant can take away pain then we know it is in the mind. I refuse to take meds, I make myself push that crap out of my thoughts the minute it begins to enter my mind. I eat what I want, go where I need and live a normal life but I’ve been in the really bad place before, I refuse to go back there. I had the blood test and was positive for IBS, I know what it is and I know each day is different, bathrooms are my friend and that’s just the way it is. No worries, I’m just here on earth like anybody else and if they don’t like it.......

Eliana5 profile image
Eliana5 in reply to torcol

I honestly think you don't have IBS.

torcol profile image
torcol in reply to Eliana5

Eliana5Because I can control it ( to a degree) means I don’t have it? Are you saying that we should all feel terrible, don’t leave home, feel helpless and desperate? Believe me, I went thru years of pain, toilet runs, not making it to the toilet in time, losing jobs that I loved, missing out on events and precious time with my family. Mind over matter can and does change how you feel and how it effects you. You can wake up and say I’m going to have a good day, the pain isn’t something that will kill me so it’s just another day. I can choose to live with it or what? What’s the alternative? I have it, it’s not going to miraculously go away after twenty some years so I have chosen to get on and live. You CAN live with IBS and be happy or you can curl up and have NO quality of life. Is it easier to call me a liar than it is to give someone else some positive reinforcements. Sorry that you are that unhappy

Eliana5 profile image
Eliana5 in reply to torcol

I'm not actually. I think my message was misunderstood or maybe I just worded it wrong. I'm really sorry for any confusion on my part. I was just being playful saying you are lucky that you have it all under control..when it can be so difficult. I was paying you a compliment. It was just my laxative day yesterday so couldn't write very much. I'm actually quite happy. I have finally gained back all my list weight and am no longer malnourished from IBS-C. Again, please forgive me. Have a wonderful day. ☺🌷

torcol profile image
torcol in reply to Eliana5

Sorry if I came off sassy! You are right I did misunderstand. It’s just that it is a hard road to get to this point but it can be done. I wanted Ccprincess to see a light at the end of the tunnel, she seems so unhappy and upset right now. I am so happy that you are doing well, I hope it’s a forever continuation! My best to you

ccprincess profile image
ccprincess in reply to torcol

Thank you both for helping me xx

I think Ibs is a mix of both. Food affects me, stress and anxiety affects me, and sometimes nothing at all affects me. It’s hard x

Eliana5 profile image
Eliana5 in reply to ccprincess

It is hard. But we just have to have hope and faith. You had more responses to your post than one I have ever seen from any post..so may caring people on here, and so many including myself care about you. Don't give up. ☺x

ccprincess profile image
ccprincess in reply to Eliana5

Thank you that means so much xx

Feeling the love haha:)

Stuart24 profile image
Stuart24 in reply to Eliana5

Hi Eliana, I know now you're a regular writer on here and I appreciate that, and our previous chats. Coming back to this thread, torcol may have a good point here and it may be related to self-hypnosis, which according NICE is a recommended therapy for IBS. IBS is the only condition for which they recommend hypnosis as a treatment, for refractory IBS (over 1 year symptomatic). Having tried many other things I am giving it a go in a couple of weeks, as I hope this will be the final piece of the puzzle. There are hynotists around who specialize in IBS. Kind regards, Stuart.

Eliana5 profile image
Eliana5 in reply to Stuart24

I have moved on..but thanks.

Eliana5 profile image
Eliana5 in reply to torcol

You too. Thank you for your kindness. This is such a supportive forum..and I try to help as much as I can. But sometimes my words just get jumbled. I'll be more careful in the future. Thanks Again.

ccprincess profile image
ccprincess in reply to Eliana5

I wouldn’t worry! No ones done wrong. Ibs is such a frustrating disorder! It makes me annoyed all the time haha:) xx

Hi ccprincess - mine was so bad I could not go out without working out pit stops.

Are you in the UK? if so you might find food intolerance tests useful. The Fodmap diet does not cover many food allergens and may suggest re introducing substances back into the diet. The main tests in the UK are for gluten, found in grains such as rice ,barley wheat and rye and oats. Also dairy and eggs. Multi grain allergy is more common than you think.

This intolerance to grains may not be to gluten. I have intolerances to all these foods, and more. I use fibre gel, which helps the water absorption in the colon, making the loo trips less frequent. There may be other substances you are eating or drinking which are triggering your IBS - it could be coffee, alcohol, barley malt products, such as malt vinegar, found in mayonnaise or corn syrup added as a sweetener to food products and sugar free sweets and chocolates (sorbitol). This corn syrup turns to glucose in your liver, so may affect your glucose levels. If you go to your doctor, and find drug such as merbeverine, (Colofac} and take a flavoured gel such as fibre gel orange, it may help by stopping the cramps and the runs. Anxiety makes this condition worse. If you were to take dextrose tablets before your exams, this will give you a burst of energy during these. Drink plenty of water. Taking a co-codomol or two every 4 to 6 hours if you have a bad bout relieve the pain I have found useful. Panadol ultra might be helpful if you don't get on with co-codomol. Dispersible tablets reach your system more quickly than tablets. If you look back at your diet the day when you felt really bad - there might have been a trigger such as rice which you were unaware was an intolerance. Please don't give up. I gave up all the potential allergens and said good bye to donuts, French crusty bread, and most soft cheeses, and ordinary milk. I am now lactase free. You can get some tests on NHS for celiac disease - but for a comprehensive test would suggest you try Alphega chemist

linked chains. They have a map locator of areas which do different services. You have to look up the services of each one listed to find allergy services. If you live in the London area - there are over 118 chemists linked services to Alphega. I have a list of outer London services which might help. If you don't feel well, then you can always resit.

Coffee_cake profile image
Coffee_cake

I use low FODMAP and there are good days amd bad. I can eat nothing new and wake up at 4am in agony. I know its tough but you can get through it. University is tough but this how well you are doing. It all adds up toba lot of stress and pressure. Take one day at a time x

ccprincess profile image
ccprincess in reply to Coffee_cake

Thank you x

Booth29 profile image
Booth29

Know how you feel, I’ve just had a really bad flare up lasting over a week. Still getting tummy pains, but no where near as bad. Saw a dietician last week and have started the fodmap diet. Have had to cut out gluten and lactose. I’ve had tests for gluten intolerance, which were clear, but dietician says you can still be sensitive to it, hence why initially on the diet you cut it out. Are you getting advise about how to do the diet? It’s really complicated to start and you really need to be supervised by a dietician. I’ve had to wait 7mths to see her! I use a heat pad when the pain is bad, which does help a bit, but like you sometimes feel overwhelmed by the pain, and don’t want to leave the house. ( or can’t!). I’m sure once you see the gastroenterologist you’ll get some answers, and people on this forum are always very supportive.

ccprincess profile image
ccprincess in reply to Booth29

I havnt been referred to anyone yet no but hopefully soon. I’d like to see a nutritionist because my belly is out of control I really don’t know why :(

Gelfin profile image
Gelfin

Wow. So complicated!

ccprincess, the simplest, easiest way to get rid of IBS is to eat nothing but meat and fat (Kerrygold butter, lard, tallow), preferably grass-fed beef. It is what we're designed to eat, after all. Also, liver is the best "multivitamin and mineral supplement" there is. There's 5kg of ox liver in my freezer. :)

That's it. Needing fibre is a myth and can do more harm than good. The suggestions about eating a good breakfast then giving examples such as porridge or toast... words fail me. :/

Many will say that eating just meat and fat is boring. To that I would say, "How fun and exciting is living with IBS and a myriad of other diseases? Anyone that needs a variety of foods to make their life "not boring" needs to find some hobbies. :)

Eat to live, don't live to eat." Animals eat the plants, digest them, extract all the good stuff, convert vitamins and nutrients, that we don't convert very well, into usable forms. We eat the animals.

Eliana5 profile image
Eliana5 in reply to Gelfin

We are supposed to eat a variety of foods. While I agree that Fiber can make things worse in people with constipation telling someone when you don't have medical expertise can be more harmful than good. Eating only fat and meat can cause blood platelets to harden arteries. Leading to very high cholesterol. A variety of foods advised to me by my dietician such as some dairy, fish, not much red meat, protein, vegetables, is what our bodies need.

Gelfin profile image
Gelfin in reply to Eliana5

Eliana, the liver makes cholesterol when we don't consume enough of it, which is a big clue that cholesterol is important. High cholesterol reduces heart attack risk; low cholesterol increases the risk. How successful have statins been in reducing heart attacks? Not successful at all. Even the original statin manufacturers have admitted they do more harm than good.

We aren't supposed to eat a variety of foods, even though the media tells us to. If you were flung back thousands of years, would you spend your days travelling miles every day, collecting as many different plants as possible or would you catch an animal and live of its meat and fat for many days?

Eating only fat and meat certainly does not cause blood platelets to harden arteries. If your dietician told you that, I would find a different one! :) Fat is needed to stiffen (not harden) our cells. Without fat, they would be floppy and stick together and cause blood clots. Margarine (a fake fat) and trans fats, however, certainly do what you say animal fat does.

I wouldn't advise someone to do something that I haven't done myself. I've eaten nothing but meat and animal fat (plus coconut oil) for just over 3 years. I go regularly every day without fail and feel fantastic. I wouldn't want medical expertise but I do have nutritional expertise. The majority of people suffering with health problems would do well to simplify their diets first instead of looking to their doctor for a pill.

Thanks for your reply and sorry for the delay!

X

Eliana5 profile image
Eliana5 in reply to Gelfin

I thank you for replying. But not only has my dietician told me this but my Doctor who is on top of his field and many reputable medical journals as my major and BA was Statistical analysis and Research. I'm going to go along with what they say, as I trust them..so let's just agree to nicely agree to disagree. ☺. Thanks again for your response.

ccprincess profile image
ccprincess in reply to Gelfin

thats interesting. I mean my research suggests cutting meat out of my diet but I guess everyone is affected by different things .thanks for the advice :)

Gelfin profile image
Gelfin in reply to ccprincess

See my reply to Eliana above! We're all basically the same design and, yes, foods can affect us in different ways BUT if a group of "average" people were dropped on a desert island for a month, and all that was there to sustain them was clean drinking water (from day 1) and meat (from day 3), by the end of the month you would have a group of bright-eyed, energetic, lean human beings. And even the vegans and vegetarians would turn to the meat after tiring of munching on leaves. ;o)

Sorry for the delay! I'm not receiving notifications for some reason. I'll have to check in daily from now on.

Eliana5 profile image
Eliana5 in reply to Gelfin

Vegans and vegetarians..most of them I know..also eat fish. None of them have had a heart attack, and they are in their early 70's.

Marathoner profile image
Marathoner

I have had this crippling tummy pain before. It's rare for me, but I know, it's aweful! I just curl up on the couch in fetal position with a heating pad on my lower belly. I don't know if it helps, but it feels pretty good. Usually about an hour or so and I'm slightly better. I have also slept on my belly with the heating pad under me. Additionally, and please take this with a grain of salt...I have a very mild muscle relaxer for my back when it flares up on occasion. I have taken just half of one of these and that has also helped with the cramping belly symptoms. I think it's a 10mg pill, so just 5mg is all it takes. I have only done this a hand full of times in all the years I have had ibs. I have tried just over the counter pain relievers and they don't touch any of the pain.

ccprincess profile image
ccprincess in reply to Marathoner

Thank you! I also couch in a fetal position I will try the heating pad x

ccprincess profile image
ccprincess

Update : I’m feeling okay!! Everyday is a battle but I’ve had a two days without any flare ups! (This is so unlikely for me lol) So I’m really happy at the moment. I know I’ll get them again but I’m just enjoying how it’s going. Thank you for everyone’s kind words to me on here. I feel so supported. I find it so hard to speak to people about it especially when they don’t understand it properly ,so I’m happy I have you lot!

All my love x

Eliana5 profile image
Eliana5 in reply to ccprincess

This is wonderful news. 😃👍We are here anytime you need us. 🌷

GarrBo profile image
GarrBo

Hello

I had the same problem when I was taking my finals, the stress doesn't help. Talk to your personal tutor and your doctor. there are lots of things they can do to make exam time less stressful. I took my finals in a separate room and could have had extra time if I had needed it. I found that when I asked for help there was plenty available. Good luck with your exams.

Eliana5 profile image
Eliana5 in reply to GarrBo

She is doing much better now per her last post. ☺

ccprincess profile image
ccprincess in reply to GarrBo

Yes I’m in a smaller room and have extra time. Hopefully that’ll calm my nerves a little :)

Thank you

GarrBo profile image
GarrBo in reply to ccprincess

I'm so glad to hear that. Good luck!

Harley1020 profile image
Harley1020

Hello, so sorry to hear how bad you are feeling. I went through lots of agony with my IBS D, for over 2 years and went through every type of test possible and tried everything on the market. Eventually, I asked to try Amitriptyline (anti-depressant) not for depression but for anxiety. This worked, only 10mg, taken in the evening about an hour before I go to bed. I now sometimes suffer from constipation and take Sunkist Prune Juice from Holland and Barretts, once a day and this always works. Good luck and I hope you can resolve your problems as I can remember how I felt before I finally resolved my IBS D. Frightened to go out and always anxious as to where the nearest toilet could be located. Take care.

Eliana5 profile image
Eliana5 in reply to Harley1020

Her last post said she was doing much better now. ☺

ccprincess profile image
ccprincess in reply to Harley1020

Thank you so much xx

Marathoner profile image
Marathoner

Hi there ccprincess. I just ran into this post in my notifications. I don't come on here very often. I just wanted to let you know that I, once again, had to use the heating pad. Pain and bloating and rolling gassy belly started on Sunday night. I refer to this as "acid belly". It was almost as if I swallowed a balloon with poison in it. I ate very little, and I was strategic in what I ate when I did. Anything I could get my hands on to cause an "explosion", I know, YUCK! But, when my tummy gets that way, I know a bomb is in there and I need to expel it. Anyway, I slept belly up with the heating pad on my tummy for the last two or three nights. I think what helped was Pepcid AC. I took that with my lunch yesterday and now this morning, I'm feeling much better and cleaned out. Lol. Due to the tummy pain and swelling, I actually weighed myself Monday AM and was 3lbs heavier than just a few days prior. This morning I have managed to get rid of the 3lbs due to multiple bathroom runs, I think. I just wanted to pop in and say to all who read this that you are definitely not alone. We all experience this kind of junk at one time or another. Take all measures you need to get yourself feeling better. I'm glad we have a community here on this site where we can talk, laugh, cry, and be totally honest and GROSS without judgement. Everyone here is awesome!

Eliana5 profile image
Eliana5 in reply to Marathoner

Hi..just wondering..do you have IBS-C or IBS-D. You mentioned multiple trips to the bathroom..and then you really needed to go for the explosion. Yes, this is great board..I don't know what I would do without it. People such as friends "Don't want to hear it" even Gastros are dismissive. No way to live as I have severe IBS-C..no quality of life. I can Definately relate.

Marathoner profile image
Marathoner in reply to Eliana5

Hello! I was diagnosed with post-infectious ibs-d. It is extreme D! Although not often, perhaps once or twice a year, it's as if I have eaten something that just churns and churns in my belly creating a ton of uncomfortable gas, only I can not expel it. I get the squeaking belly noises and grumbling and what sounds like farts, except they are not because it came from my belly, not my bum. Lol. I might think "okay, here it is!" and run to the restroom but then only just a tiny bit eeks out and I'm stuck with the rest of it until it's damn well ready to come out. It can go on like this for days, but when it finally releases, I have so much relief and get back to the daily diarrhea as usual. <--"diarrhea as usual", funny how we learn that this is just our normal life, huh?

As for your ibs-c, oh my gosh...I'm almost happy to have the 'd' instead of the 'c'. After just a couple of days, it was miserable. I could not imagine having that feeling everyday, you poor dear. Yes, friends don't know much about it, however, I am finding the older I get, the more people there are around me with similar issues. But...how do you start a conversation to find out who's got it and who doesn't?! Awkward!

Eliana5 profile image
Eliana5 in reply to Marathoner

Hi..I know how you feel. I get gas too..It's very uncomfortable. I think it means I need to have a "bowel movement" but that day..I remember I was at my therapists waiting for my appointment with her..and I ate a ton of sugarless gum. So I "googled" "does having gas mean you have to have a bowel movement"? Much to my surprise it came up with gum chewing..if you chew a lot of sugarless gum or soda (which I can't drink anyway) then it creates a lot of gas in our colon and intestines..as well as drinking from a straw, because we are taking in a lot of "swallowed" air..creating a lot of gas.."farts" so to speak and it doesn't mean we have to have a bowel movement. Still..I have not gone in several days and still have to eat a big dinner at Bible study tonight when I am already constipated. 😳. I have to wait till Sunday to take the Senna laxative. Normally I can have a bm if I drink strong instant black coffee with several packets of Stevia sweetener. But I am having lower back pain (probably due to being constipated and stool pressing against a nerve back there) muscle relaxers and Naproxen are notorious for causing constipation..So nothing today..and I'm miserable. Yes, you are lucky not to have this..but none of us on here are particularly happy either with having either forms of IBS so we are all suffering in some way.

Eliana5 profile image
Eliana5

I just came across this post although it was written a while ago just wanted to check in to see how things are going for you.

ccprincess profile image
ccprincess in reply to Eliana5

Hey! Thanks so much for checking up on me a year later! Surprisingly my flare ups have improved a lot. I only have a flare up about once a week now (compared to everyday) and have learnt to actually socialise outside my house by just taking an Imodium haha. How are you?!

Christianna x

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