Number one – the Agoniser
This is the absolute worst kind of IBS pain because, well, it’s the absolute worst kind of any kind of pain I have ever had the privilege to feel.
The Agoniser tends to last for around an hour all told. It starts slowly, with a few stomach cramps and gurgles, but within about 10 minutes will have transformed itself into gripping, stabbing stomach pains. After about 15 minutes of me rolling around the floor in agony I’ll have to go to the bathroom and sit on the loo for another perhaps 20 minutes of agony. And then it’ll wear off.
After I’ve been through an Agoniser session I’m usually thrilled to be alive for about an hour, and then depressed for about three days.
Number two – the War of Attrition
Although the War of Attrition pain is not as bad as the Agoniser, it comes in a close second because it is just so relentless. It basically involves day after day after day of a cramp in my right-hand side that won’t go away for love nor money. It often gets worse if I’m constipated or my stomach is just generally burbling, and so if I haven’t been to the loo for a few days it can get pretty damn bad just by itself.
But the real problem with War of Attrition pain is the fact that it just goes on and on and on, steady as a rock, grinding you down and sapping you of energy. Whatever you have to do in life, be it work or seeing friends or posting a letter, the War of Attrition pain comes with you, always there.
Number three – the Balloon Experiment
This form of pain feels like someone is trying to inflate a balloon inside my intestines, just to see what would happen. It comes in at number three on the pain scale because it only tends to last for about 20 minutes, and I get short breaks for relief during this time before the cramps set back in.
Balloon pain is quite mysterious because it never seems to be connected to diarrhea or constipation, or even any other form of symptom – it just comes out of nowhere and goes right back into nowhere, like a thief in the night or a mole in my lower colon.
Hi, I just wanted to say thanks for this website. I’m 18 and been suffering from IBS pain for 7 years. The worst thing about the condition is that I’ve felt terribly lonely, unable to really find someone who understands what it’s like. A friend suggested using the internet to see if anyone else was in the same situation, and I managed to follow some links to this page. I was astonished to find that the pain experience you describe is so unbelievably similar to mine. Thanks for helping me appreciate that I am not alone.
The agoniser is defintely my kind of pain – it heralds itself with cramp, accompanied by gurglings and rumblings. I then collect the newspaper, a pencil and the cordless phone, and take myself up to the loo! I choose the upstairs one as I am well away from the front door, open windows etc. so that nobody can hear me moaning and declaring that ‘I can’t cope with this any longer’. In between the spams I attempt to put in crossword clues, hoping to take my mind off the threatening Vesvusial like erruption. An hour later when it is all over – for another 2-3 days -I feel like a wrung out rag, so do as little as is neccesary for the next hour or so. I HAVE to cope with it, as the usual Colofac, Colpermin tablets etc. don’t really help. In a way it is fortunate that I live on my own as I would hate to inflict my noises and moans on anybody !! At least I can get on with it, and shout as much as I want. The neighbours haven’t cottoned on yet – at least I don’t think they have – probably put it down to that batty old woman shouting at the cat !!! And welcome to Ann – no! m’dear, you certainly aren’t on your own – there’s thousands of us out there, driving our doctors round the bend and getting nowhere very fast !!!!
I’d like to add my own …
“The monkey cage.”
When I was in college we learned of some sadistic psychological experiment where a monkey in a cage was randomly shocked. Sometimes for short bursts, sometimes long, at random times of the day. Sometimes the monkey was shocked when he eating or drinking, sometimes not. Sometimes before or after. He was shocked in all different parts of the cage–EXCEPT for a “safe spot.” He quickly learned his safe spot and would sit there for days and days. Then they started shocking him in his safe spot, and he had a psychotic break. Curled up into a ball and pulled his fur out and zoned out of reality.
To me, IBS feels like my safe spot, of feeling safe and OK and trusting in my own body, has been taken away. I just came thru 2-3 weeks of a “bad patch” and my mental state took a corresponding dive. I haven’t started pulling my hair out, thank goodness. But that experiment describes the unpredictableness of IBS flares and the life chaos it creates very well.
Sophie, I’m guessing that you haven’t had brain fog yet which I’ve had for the last month now. I think it’s an advanced form of IBS and it’s really depressing. I hope you don’t get it. The others are all nightmares as well, especially the agonizer. The “Brain Fog” is being in a dizzy state 24/7 where you can’t think clearly. It’s a little bit like Alzheimer’s I think and I’m not that old! And the fatigue is just awful. I’ve always been in pretty good shape but now just walking up the steps is difficult. I really, really, really hope that SIBO is the cause and that I can get cured. That we can all be cured. Please God, please!
Ooooh the agoniser.. Know that one all too well. For me, that one always seems to appear when I have just had a good patch – just to let me know that its still there and is still in control. Always feel soooo drained of all energy for about 2 days after. But the worst part is just sitting there in the bathroom waiting for what you know will happen – wishing it would just hurry up and be over with. Im ashamed to say that many a suicidal moment has passed while being in that state. Its a horrible thing to have to endure.. xx
Hi everyone – thanks for all the comments. The Monkey Cage sounds terrible! I can’t believe they were allowed to do that to a monkey (although having said that I think back in the day they were allowed to do all kinds of nasty stuff in the name of science, even on humans…)
I can relate to that one as well – the fact that you can be feeling fine for a couple of weeks and you start getting comfortable, and then BAM, you’re back in the IBS world. To IBS sufferer – have you ever been investigated for fibromyalgia or maybe chronic fatigue syndrome? I know that brain fog is a huge problem with fibro patients, and they often get IBS as well.
I actually just got the brain fog within the last month and I’ve had IBS for 5 1/2 years. I’m going to be getting a physical soon and I’ll ask yet another NEW doctor about fibromyalgia and chronic fatigue systmem, Thanks Sophie.
Hi Sophie, Just looking generally around the hypnotherapy sites and was pulled into yours?! I am a hypnotherapist and can explain to you exactly what’s going on inside with regard to your IBS – both chemically and mentally. It’s quite long winded and takes some time to explain, but if you wish to understand more I’m more than happy to talk with you on the phone. My telephone no is: [removed]. Give yourself at least half an hour if you decide to call. Kind Regards
Jill Harvey
ps If you want to check my credentials – I’m a Member of the Association for Professional Hypnosis and Psychotherapy, a Member of the Corporation of Advanced Hypnotherapy – I’m listed on the NHS directory for alternative therapies and lots of other stuff too.
Welcome to the site Jill! And, um, I don’t want to be rude or anything, but if you can explain to me exactly what’s going on inside me, both chemically and “mentally”, then you’re doing better than most of the leading IBS experts in the world!
I’ve had a couple of offers like this recently, not sure why. I think I’d better just say that I’m not a novice on the whole IBS subject – I’ve had IBS for 16 years, I’m a moderator on the IBS self-help group bulletin board, I write articles for the UK IBS Network, and I run two of the most popular IBS websites. I spend hours and hours each week reading about IBS – I know what I’m talking about, honest!
As I said in the other post, the mechanism of how hypnotherapy works in regards to IBS is not fully understood. For example, here’s a quote from a 2006 edition of the International Journal of Clinical and Experimental Hypnosis:
“The mechanisms of action explaining why hypnosis is effective for IBS are not altogether known, but recent studies have shed some light on this issue. These studies, and what can be learned from them about how hypnosis impacts IBS, are reviewed in this article. Hypnosis may affect IBS partly through changes in colorectal sensitivity and improvement in psychological factors. The effects on GI motility and the autonomic nervous system are less clear and need further evaluation.”
And another from the American Journal of Clinical Hypnosis in 2005:
“In reviewing the research on the mechanism of action as to how hypnosis works to reduce symptoms of IBS, some evidence was found to support both physiological and psychological mechanisms of action.”
Hi Sophie,
My offer still stands.
Warm Regards
Jill
Jill, I admire your confidence! And if you ever need someone to explain to you another aspect of IBS – if you wish to understand more – then please do let me know and I’ll see what I can do for you
Oh the agoniser!!!!!!!!!
I know it sounds awful but I am so glad that i am not the only one that feels this pain. I had this only this morning and at 10pm I am still having nagging stomach cramps.
I can only say that as a mother of three it is quite literally as bad(and if not worse) than labour pains. The only problem is that you do not get a lovely baby at the end of it.
I’m 35 and have been living with IBS for like 7 years. I’ve gone thru all 3 pains and am so glad to have found this site ’cause I thought I was going crazy! After going thru like 4 good months I suddenly started living the “balloon experiment” nightmare all over again. The past 3 days and especially today have made me feel like taking a “pin” and popping my right side which immediately after I finish eating it starts “ballooning” and then the stabbing pain starts. The pain has gotten so bad that my chest will start feeling tight, my heart rate increases, I start sweating and it has nothing to do with diearreah or constipation…it’s all gas. One good burp or (the other one) and I start feeling better…but then it’ll start all over again.
I hadn’t noticed that I’ve been eating and drinking all the wrong things…like wine, Middle Easern food with lots of curry, jalapeño jack cheese on my food, caffeine diet pills, diet sodas, watermelon, spinach, yucca, whole grain breads and whole grain waffles…everything that is a big NO-NO!
(did I mention that yummy, big, greasy beef taquito)?
I lost count on how many Nulev pills, Gas-X, Ibuprofen (and even a Darvocet) pills I’ve taken just today! I told my co-workers that if I od’d to call 911 and show them all the pill bottles in my bag. (lol) After my 3rd (small) meal of the day, my tummy once again expanded and I said “forget this”!!! and I made myself puke and felt better. Now, I’m hungry. I’m so scared to eat. I don’t want to puke again in order to “feel better” but I can’t go thru this “balloon” pain again…(sigh)
Hi Darleen – if you go to the IBS treatment section at http://www.ibstales.com/treatment-reviews.htm there are reviews of most of the medications available for IBS, plus for things like fiber supplements as well.
HELP – someone please give me soome information – this is killing me like everyone else. I Cant get up in the morning from shear fatigue – the pain ia so bad I want to scream but try to pace instead. Somtones day I have no control of my boweels. The constipationa diarrhea is so pain ful. What medication are there that can help. I am open to any suggestions
Thank you
Darlene
Ah the baloon pain, thank god its not just me, my doctor gave me the strangest look when I told her that one. Its as though if its not in their medical book its not real. I often feel I may pop, I tend to get this one late at night and lay in bed rolling around until 3am. I’m currently taking about 15 pills a day they help with the toilets trouble but not with the pain in my stomach that is about to pop or feels like there is a knife in my side.
I am so glad I found this, I ‘ve never been diagnosed with IBS (even after rushing to hospital thinking I was going to pop) but I am so sure I have it. I have the balloon pain so often it’s scary & agony, then I go to the loo, if anthing moves the balloon ‘deflates’ however I always feel very hungry and a little sick after. I am a little scared of eating as I know it will strat again, if I’m not balloning then it’s the agoniser. I had it today, I couldn’t zip up my jeans, which closed zipped up no problem this morning. GO I really thought it was just me til I read this, I live in Italy and have been to the doctor more than 10 times with this, they have never mentioned IBS to me, they just sent me home with a packet of buscopan. I am starting to feel happier already.
Hi,
I’ve had IBS for about 16 years now, and it went away for about five years which was lovely. Anyway, I get an agonising pain in my left side, which goes after I go to the bathroom, but is so bad that I want to claw the walls with my hands while I’m trying to go! It only last right before I go until I’ve been, although it may come back shortly after and the need to go again arises. I don’t get constipation, mine is diarrhea all the way and right now I haven’t left the house for a month, it’s been so bad. I also get sick, and I have what feels like a lump in my throat along with more heartburn than a single human being should ever get. The only relief is Loperamide or not eating at all. IS this IBS as I’ve been told by a doctor who has never examined me but just listened to my tale of woe? My symptoms seem to fit!
I have been dealing with severe IBS for my entire life. As i get older it gets worse. I also seriously contemplate suicide when i am having what i call an episode of pain. Mine can last for several hours though. I have tried all the IBS meds out there and pain pills. A lot of the pain pills like darvocet actually make my stomach pain worse after they wear off. There isn’t anything i can or can’t eat that doesn’t affect my IBS. I truly understand, i have been to the ER for my pain sooooo many times that they know me there. There has to be something out there to help. If they can cure cancer why can’t they cure IBS???
I have been to numerous doctors and all they tell me is well we can try another pill but you are just going to have to deal with it because i have never seen a case as severe as yours. And why do i pay you?? I recently had my gall bladder removed and at first i felt better, now my IBS is even worse. It is a daily occurrence of pain and agony and diahreah and feeling like complete crap. Good luck to everyone and if i find anything that truly helps i will share with you all. Good luck and god bless you all.
I have had severe pains and loo problems for 10 years now and after years of needles and tests they no tell me its IBS. Why now? I sometimes wonder that they tell you this just so they diagnose you. Its the worst pain i ever get and like some of you I can have good weeks and really bad weeks. I am currently going through a bad week and i feel like i would be better off being put to sleep.
Hi,
I have had IBS all my life. Now I went to the ER with terrible pain under my right breast..lots of gas and a terrible nagging pain. Food helps.can this be my colon all the way up top?
thanks
Thank god im not alone ^^
Ive had it since year 6, now in year 11. Worst year is 10/11 so far.
Suggest taking mints (polos) as this helps with gas etc
i just typed into my browser – “please someone help – terrible ibs” and this page came uo. soooooo glad i’m not alone.
Pain so bad last night i was on all fours on the floor (which didn’t help at all). I can only liken it to labour contractions (done for real twice) but without any break in between or any drugs!!
Had to get someone to take my daughter to school today and dare not eat cos i know i have to go and get her later.
I just wish i could feel normal for once!!
All your comments should keep me going!!
I was diagnosed with IBS about 30 years ago. I’ve experienced just about every pain mentioned in this blog. For me, IBS usually causes abdominal bloating in the wee hours of the morning so typically, I’m semi awake by 4am when my 60 year old body tells me that its time to urinate (with difficulty due to an enlarged prostate). My abdomen seldom feels “comfortable” at 4am so I typcially fall into a “half sleep” if at all. Being tired most of the time breeds anxiety and depression making IBS symptoms even worse. Without fail, my symptoms get better as the day progresses and are the worst in the morning when I first wake up. I also used to get “The Agonizer” about once a month however, my severe pain was centered around what I would describe my upper rectum area. Kind of like a fist pushing down on that area. Otherwise, symptoms were identical to what’s described. On the positive side, I seldom have this problem any more. During the day, most of my pain is either on my lower right side or what I describe as my abominal basin (feels like someone is blowing up a balloon down there). It almost feels like I should be wearing a corsit to hold my guys in. I may just try that some day (anyone ever tried that?). As many readers have also testified, I’ve tried many drugs in the past without much success. I hardly ever get constipated however, I have severe bouts of irregularity, usually coupled with loose bowel movements and/or diarrhia. My abdominal area seldom feels “comfortable”. I haven’t taken any medication to control IBS (including laxitives) for at least 15 years. However, I found that taking one baby aspirin daily does improve my symptoms. The best suggestions this old guy can make to my internet friends: Try not to focus on your bowel movements – there have been incidents where people did not have a BM for 6 months and survived. Therefore, drop the laxitives – they only make matters worse. Wait it out. Your body is pretty amazing in attempting to regulate itself. Drink plenty of water when constipated and try Metamucil, oatmeal or Citracil. Try one daily baby aspirin to reduce inflamation of the colon and/or small intestine. My experience is that aspirin controls IBS and flatulence quite effectively if taken regularly. Try to increase your water and fiber intake. Popcorn is great and so is oatmeal. D’ont mistake symptoms of IBS with colon cancer. My wife had colon cancer with similar IBS systems – until she started to throw up. IBS sufferers seldom throw up.
I have a pattern of constipation, then the diarrhea that causes the extreme pain, lasts several hours, and since I have really bad hemmoroids, I begin to have bleeding that requires pads. The loose bowels continue on and on until I finally take a Lomotium so I can go to work. Then the merry-round starts all over again.
I also feel like I will never get help, the drs. have not helped and I become confused about a diet – never know what sets it off. Most of the time after a severe attack, I also end up on the floor – either from fainting, or pain so badly I can’t get up and have to call my daughter to help me. She comes in, immediately begins to put ice packs on my face trying to revive me, puts me back on pot if I need to be or puts me in the bed where I stay for next two days before I get my strength back. A terrible way to live.
i never new there were so many people with ibs and i feel im not alone,i suffered with anxiety a few years ago and was told i had ibs caused with axiety,but the symtoms were not like i have now,it went away for a year then started again around xmas,i keep saying it is with my grandaughter moving in with me and getting stess, i have often felt like ending it all because i cant live a normal life,it isnt problems with the toilet mine is my stomach is flat when i get up in the morning a couple of hours after i start to blow up and my bell gets bigger as the day goes on and then painful,i have stated feeling dizzy and getting headaches,they told me at the chemist you dont go dizzy with ibs.
like most of you out there i have tried different tablets nothing,i cant take some meds like buscapan as they cause fast heart rate and i suffer with svt which is fast heart rate brought on with different things,i think the ibs brings on the ibs and ibs brings on the anxiety a vicious circle,
i never want to go out i have to wear baggy clothes all the time as i look pregnant,i have become wheat intolerant,im so fed up like all of you,it wouldnt be so bad if i didnt get it everyday all day anyone else out there get it as often as me and get dizzy spells and feel anxious?
the only time i can relax is when im lay in bed,i dont want to get up in the morning and look forward to going to bed.all doctors do is give you a tablet and off you go because they dont know what it is they should try and find the cause before trying the meds get to the root of it,but their not interested,
i was going to buy this book off the net but dont trust paying with my card even with padlock on it sounds good, thank goodness for this site i wish you all the best and hope someone finds a cure or help,it is a terrible way to live.
just added my comment and after read other peoples comments again,there are a lot of you in terrible pain i rearly feel for you,my pain isnt that bad it is the other things mainly the bloating dizzyness and feeling shattered all the time cant even get up stairs without my heart beating fast and feel as though i have done a marathan
Having had IBS for some 13 years, with all the associated agony etc., I have just started a Gluten Free diet two weeks ago and the diarhea has stopped completely, as has the bloating, still no success with the lower right side pain which can be really bad (like a knife going in) but will keep you all posted on that one. I am told it can take up to three months for the gut to calm down. I am hopeful, as NHS has little to offer. Hope this may be of help to some of you.
I have had IBS for over twenty years. I find
it is worse now. Recently my dad passed away, and my mother has been diagnosed with cancer.
I am an only child, and I live with her.
Has anyone experienced bad lower left sided
and also in the middle of the colon pain.
I am thinking, I am going through a lot of stress, and I have always been an anxious person. I think from all the stress, it is causing me this terrible pain, also, have any
of you felt pain in your lower left colon when you bent over? It is so very depressing to have this, and it is worse than ever at this time. I would appreciate hearing from someone.
God Bless,
Jeff Christopher
Hi everyone. Its so crazy that I found this site. Right now I am sitting in the bathroom. But the amazing part about this is that this time my pain lasted only 20 mins and it wasn´t half as bad as a month and a half ago. What happened a month and a half ago? I started to religioulsy follow the Heather Von Vorous Eating for IBS book. I have to recomend that book. Its just saving my life. All you guys must read it. I never new the benefits of Acacia fiber, soluble fiber based meals, peppermint tea, etc.. But it also explain about foods that must never be eaten, foods that must never be eaten on an empty stomach, etc… I have also been doing the hypnotherapy treatment with Michael Mahony, which she recomends anywyas, and it helps a great deal dealing with pain. Please everyone, take a look at these things, give it a chance! I garantee it will change your life!
Good luck!
Hello Everyone,
I have been suffering with IBS for 2 years now. But I am beggining to consider myself symptom free for at least the past month and a half. I still get little moments of pain, but it lasts for less than half of the time from before and the pain is not half as intense. I have been following Heather Von Vorous eating for IBS book. This book has saved my life! It is teaching me about the benefits of Acacia fiber, peppermint tea, its teaching to never eat anything on an empty stomach other than soluble fiber, and all meals must be based on soluble fiber. Also, to deal with the pain and anxiety I have developed as a result of IBS I have been doing a Hypnotherapy treatment with a very well know Hypnotherapist from England who specializes on IBS called Michael Mahony. Wich is also a recomendation from Heather. You can buy his CDS online. This treatment has got me off of Ativan, which I was prescribed for IBS 2 years ago. Thank God!! That drug alone was killing me! Anyways, I think Hypnotherapy might help Jeff Christopher.
Good luck and God bless you all!
hi i suffer with ibs have done for 15 years, it was very bad for the best part of 10 years trying everything from fibrejel to herbal remedies and diets. i have even done medical trials to see if they could cure, but to no avail, some nearly killing me.
i went in to my doctors so fed up and wanting my life back, he told me about a new trial for ibs it was hypnosis, i felt silly as its not in my head its my belly, but i gave it a try after a few sessions people started noticing the difference, by the end of the trial i was more or less symptom free and feeling on top of the world. the guy gave me some c.ds to do at home. as when i get excited or worry about things it starts up but i put my disc on and take time out and feel back the way i should, 5 years later i am 99.9percent better. with no pills. just a chill out half hour once in a whilst
This is in response to Jeff from back on 7/4/08. I hope you got to the bottom of your pain – but the lower left side pain you described is one of the main symptoms of diverticulitis. I have had a few instances of it, along with th ibs….loads of fun. Hope you are well.
Hi, I’ve had IBS for about 11 years now and I pop over to Sophie’s website now and then. To be honest, it gives me a kick in the behind (excuse the turn of phrase) and I feel less sorry for myself, as many have it much worse than me. However, I had a pretty severe agoniser-type episode 4 days ago which scared the bejaysus out of me at the time. Downright evil abdominal pain, making me shaky and sweaty, knowing I should level my breathing and try and stand and even do some gentle abdominal massage. This is because I know it soothes my cramping muscles and encourages me to get rid of that soon to be explosive poop. But it’s very hard to be calm and logical when you just want to double up in pain and sob. During the second bout ( usually have 2 or 3 over a 4-6 hour period) I knew it was bad as I was bleeding a little and I thought “That’s it …have to go to GP soon as reasonably possible”. I was reluctant to take co-codamol for the pain as I dread rebound constipation, but knew I wasn’t going to make it to my GP that day without it…and my longsuffering huband insisted… So I’m off to have my first GI investigations in 7 weeks time. I used to be a nurse and I’m a major scaredy cat.Dreading it, but it’s got to be done. Please don’t be afraid to go to your GP if you bleed more than a tiny bit, if I can do it, anyone can. Take care everyone.
Hi
I only found this website just now. Happy Easter everybody!!! Or should that be ‘Kind of Happy Easter’? as we have I.B.S, and we all get it randomly. lol. I have had I.B.S since being born. I’m now 28. I went to the toilet at 7am this morning, when i wiped my bottom i seen blood on the tissue. I knew it wasn’t period blood cos i’m not on one at the moment. The poop was easy to pass but was still quite painful. Yet it came out with ease. Strange. I’m wondering if it is anything to do with my throat symptoms. The more my throat stings, the more constipated i get. Never thought a throat could affect the bowel. I am now more sleepy than ever and i go to sleep quite early. Plus my breathing sounds like a rattle snake. It’s pathetic that i get out of breath just from walking up the stairs. Not even like i’ve got any fat on me to get breathless. I’m as thin as skeletor. lol. Not by choice. I was born premature so that stops me putting weight on. I want to be a bit curvy if anything. Just wondered why i had bled when i went.
Just wanted to add that it also gets annoying, when we have to starve ourselves. As we get so bloated. By what though? Maybe air. lol. It’s awful that we can’t always eat when we want. I get moody when i haven’t eaten all day. Just to empty my damn colon. :/
Just wanted to say that I’ve noticed more pain when I don’t eat regular meals, so instead of starving eat small meals maybe a fruit. I was also premature but am not thin just about right. Ibs from birth, my mum use to feed me a south african tea called Rooi Bos [red bush] that cooled the tummy, with honey. another thing in order for your colon to work it needs the food you consume to process, which is why its important to eat regular meals. and every one is different , but please try these to see if it makes a difference. I still suffer but have learnt to notice the triggers. hope ur’ll well.
Hi! again , but has anyone ever thought they were having a heart attack only to be told its the IBS acting up. servere pain on the left side of the body.
I just found this site and I have to tell you that I have had IBS for at least 25 yrs. Lots of tests and nothing shows up. I have alot of anxiety. They tell me that doesn’t help. I am going through a bout now that lasted about 4 months. There is not any meds that help me. I get so bloated that I look pregnant. My pains get so bad that I don’t know what to do next. Sometimes it goes away for 4-5 months and then hits me agian. I am always afraid that it is something else beside IBS but the test don’t show anything bad. It is a horrible feeling. Sometimes I don’t know what to do next. I live on Gas-X. If only I could live a normal life but since I had it so long I am thinking it will never go away. I tried to eat gluten free foods but beside being so expensive they don’t help me either. I guess we all know what this is like. The only thing I know is to keep searching and maybe somehow we wil find a way to feel better. Good luck to all.
@Dee, I tried a pretty restrictive diet that really helped me out. I cut out stalky vegetables that had a lot of fiber, and quit eating anything with processed sugar. I also ate only 4-5 ounces of meat at a meal, and only very lean cuts at that. I also had shrimp, and a lot of spinach, romaine, and asparagus, as well as just broccoli tops. (If you search for “eating clean,” it’s a lot like that.) While doing that, I did not have one bout of IBS, despite being jobless and going through several stressful family situations. Sugar and carbs are the biggest reason I feel bloated. I cut out all but one serving of carbs per meal, and don’t eat anything with more than 9g of sugar per serving; actually I shoot for under 5g. I did eat organic foods when I could as well, and not only did I lose weight, I had little to no bathroom problems and had no bloating. I would really recommend clean eating and walking for exercise to anyone who wants to try to control his or her IBS. I also take apple cider vinegar pills, which aid digestion, and drink my ginger tea when I can.
Hi, I’m a 30 year old woman who was diagnosed with IBS when I was 18 years old, by a GI doctor. I had stomach pains as a child/teenager for a while and my pediatrician told my mom it was in my head. Finally, my mom and I got her to send me to a specialist, for what I though was going to be a GI doctor. Only to find out she tricked me and sent me to a shrink in the psyche ward of a hospital. This doctor interrogated me and insulted me, saying that I’m either doing drugs, have an eating disorder or I’m being molested by someone in my family (which all 3 where so not true!). This was one of the worst experiences of my life. Here I am, 16 years old, hoping to get help, only to be attacked by someone. Finally, my mother found one of the best GI specialists in New York and sure enough, I had IBS, internal hemorrhoids and also ulcers. Since then I’ve had both 5 endoscopies and 5 colonoscopies. I have to get everything checked every few years to make sure that things have not got worse.
Ok, onto my IBS story. You can say I’m someone who doesn’t have good luck…health wise. I’ve had many medical problems by the time I was 20. I have experienced many painful things in my life. However, nothing is worse than the IBS pains! NOTHING! I often have regular pain associated with IBS, such as gas, bloating, and constipation pains. It’s uncomfortable, but I can live with it. But, when I get that horrible “agonizer” pain….forget it! It’s the worst pain I’ve ever experienced! I usually get this excruciating pain around 6 times a year, it may not sound like a lot, or that bad, but believe me, it is, as many of you know! This pain usually comes very early in the morning, waking me out of a dead sleep, around 4 in the morning. It starts off pretty bad with stomach cramping, then I go sit on the toilet and it begins to get worse, very quickly! I feel so helpless at this moment, I never know what to do. I want to sit on the toilet, but the pain it so bad that I feel I need to lay on the floor as well. I usually go back and forth from the toilet to the floor. It gets so bad, that I start to pour sweat and become pale as a ghost. I break out in a cold sweat and can hardly stand up, for I feel I may faint at any moment; at this moment I feel like I could die. The pain usually lasts for about an hour, but every minutes that goes by and you’re in pain, feels like an hour! At these moments, I wish I had a shot of morphine! A pill never helps, because it takes too long to start working. I usually try to make it to the other room to get my Bentyl (a prescription medicine that helps with stomach spasms) and a pain killer. They should really invent a instant pain reliever for us people with IBS, that have to go through this type of pain! I wish my doctor would give me morphine…I really would take it, when I am in these agonizing times. So, back to the pain. I sometimes take a enigma when in this pain, hoping that it will just make the pain go away. Sometimes it helps. After the pain subsides and I go lay in my bed, I feel so happy and relived that it’s over. Later on, when I wake up I feel SO drained and exhausted the entire day. I feel dizzy, weak, lethargic, dehydrated, and usually have a headache. I then continue to feel weak and not myself for the next couple of days.
I also have the “balloon experiment” pain often too. It’s very uncomfortable and painful, but I would choose to have this pain over the pain of “the agonizer” any day!
Having IBS is scary and lonely. I feel like my husband, parents and friends don’t really understand how severe the pain really is. I sometimes wish I could let them just jump into my body for like 5 minutes, so they can experience my pain and understand what I go through! I hope there will be a better treatment sometime in the near future for all of us with IBS!
Hi everyone, after recently reading all the comments posted, i felt i should aslo share my story. I’ve only in the past 2 years started suffering with IBS, the pain is unbearable, and the constant trips to the toilet are very anoying! The doctors are useless, and dont really have any sympathy. ive been taking colofac for about a week now, and they dont seem to be helping, im debating whether to take co-codamol, as i kno they constipate you, but thats gotta be better than constantly needing to go to the toilet. Im awake through the night about 5 times, and find it worse in the morning.
I also wanted to ask, what foods people eat that they find help?? because i have no idea what to eat, or what meals to make. Im so used to endulging in all the bad stuff! would be grateful if anyone could help me out with that.
i have had IBS for over 10 years, Im 42 and tried just about everything out there. I have terrible pain almost every day, persistent diaorrhea, chronic fatigue, headaches and due to all this, depression. I cannot work and have been trying for the last 2 years to claim ESA benefit but have been turned down at apeal, despite my Dr writing several letters to say that because of my illness I am unable to work. I have seen a dietition, a gastroenterologist, been tested for celiacs…. etc.. and had IBS confirmed. i live on imodium, colefac and buscopan. imodium slows things down but, Im sure causes me more pain. nothing seems to help, I cant work, i have no money or self respect and at 42 i feel my life as a useful human being is over. i rarely go out and Im single. If someone out there has a miracle cure or knows something I havent tried Id love to hear from you. Thanks. Luci.
luci,You can mannage your symtons through eating. I went to the ibs treatment center and he tested me for all sorts of things. I know i will never be normal but i feel so much better and don’t run to the bathroom anymore. I work 4 12hr days. It took awhile to gets use to the diet but i’m doing it. I still get constipated,still trying to figure that out. I don’t eat dairy,gluten,small amout of sugar for candida. Nothing worked for me at first with the eating. The testing for parasites,yeast isssues,ect. Once i got that taken care of the eating came later. things are alot better but i have my bad days but more good.
I’m 35 yo, male, been suffering from upper abd pain for over 10 months, last 1.5 months been experiencing brain fog and fizzyness. not sure if this is ibs, but gastroenterologists keep saying they’ve excluded everything else, and keep insisting that this has to be IBS, so wanted to share my story.
started as a shooting pain about 10 months ago in the upper right quadrant, near liver. went to see several ge specialists, did liver tests, got a couple of ultrasounds, blood tests, even mrt of the abdomen-all came back normal, which was reassuring, but did not help with pain.
Since there was some dyskinesy of the gallbladder, G/e prescribed gallbladder / liver protectors, some g/e antibiotics, which did not help, got referred to a neurologist, took a short course of an AD medicine prescribed, tried which helped somewhat.
The symptoms subsided for a month or so, but then (I think stress from work had to do with it –had to take a very long flight) started to hurt in the upper left quadrant near stomach–dull pain, sometimes stabbing. Also started noticiing excessive gas primarily in the small bowel, bowel sounds, which has never been much of a problem for me.
did some more tests, bloodwork, ultrasounds, took acid-suppressors for several weeks, checked stomach, abdominal CT w/contrast, MRT of the spine to exclude ostheochondrosis, hormone level tests, blood tests for parasites–all normal.
Meanwhile, pain got worse, started waking up every night several times, feeling pain and headache, went to G/E again, then had to stay at a hospital for a week, they treated me from pancreatitis, although pancreas tests were normal, stayed on severe diet for over a month, which did not help either.
Shortly after getting out of a hospital, about 1.5 months ago, started experiencing brain fog during day time, feeling weak etc. What became clear is that doctors do not have any idea what this is, so they just labeled it as IBS. It also became clear to me that I can’t rely on doctors to make me feel better.
Now, I’ve been living a pretty healthy life, exercising daily, non-smoker, drinking very rarely, but still fighting this issue.
From testing I’ve done, I know this is most likely not life-threatening, which helps take care of the anxiety, but does not help with life quality, which dropped because of the symptoms and the way I feel.
I’m thinking this may have to do with malabsorption in the small bowel, which leads to B12 deficiency, or an increased level of toxins in the blood, which, in turn, lead to the headache, brain fog, and dizzyness that I’ve been experiencing.
Still, would like to get to the root cause. Could be parasites in the small colon, could be some kind of a virus (bacterial infection is excluded by bloodtests), could be a neurological issue (mrt of the brain did not reveal any pathologies).
So far, I’ve tried antismasmodic, non-steroidal anti-inflammatory, wide-spectrum antibiotics, but the only thing that worked for me in helping relieve symptoms has been regular exercise (I run every day). Also, the nootropic medication prescribed by a doctor to relieve anxiety and improve my mental state last month has been helping a bit, but it has not helped with waking up every night.
If anyone experienced anything similar, please let me know what worked for you.
Hi Kathy… and everyone…. thank you for your comments. All last year i tried different diets through an n.h.s dietition. (sorry…cant spell!!!) Wheat free, gluten free, dairy free. All of which were extremely hard to follow for numerous reasons and none of which worked. (I eat sparingly as eating usually brings pain.) I also battle with depression and have worked my way through about 7 anti depressants all of which I seem to be hyper sensitive to. (feeling dizzy, shaky, sick and probably worst of all a feeling of being detached from the world… no thanks!) Im now trying a drug usually prescribed for epileptics. I’m told it should help with the intense abdominal pain I have almost every day and also with the almost constant headaches. I’m having to increase the dose VERY slowly so its not working yet. I’ll let you all know!
Megajim, I to suffer from a fuzzy head and I have trouble remembering things I’m supposed to be doing. I’ll often walk into a room and be totally at a loss as to why Im there. I’m on sleeping pills at night to help me get to sleep although they don’t keep me asleep during an attack at night. night time is about the only time I can’t sleep as during the day it is a struggle to stay awake! I always try to stay awake as falling asleep during the day just makes falling asleep at night harder. I don’t have any suggestions on improving the brain fog and fuzzy head feeling-except your not alone-I’ve heard this complaint from several other ibs sufferers but have not yet heard a way around it, although the fact that you run and keep healthy can only be a good thing.
As for the constant running to the loo (i have ibs-d) I recently heard that in some people calcium carbonate helps… Anyone else heard this? Its one of the ingredients in some chewable chalky type indigestion tablets but these can also contain artificial sweetners which can aggravate ibs-d so Im looking for a pure form…. watch this space… if I can get to a chemist i shall enquire!
Any how… fab fab web site, all you ibs sufferers keep chins firmly up!!!
I just recently finished the 14/day vivonex that Dr. Pimentel recommended. Before i started i had alot of gas,brain fog,constapation, alot of intestinal pain. I don’t recommend this stuff because it tastes nasty. i had to plug my nose,flush it with water,and take some mouthwash 3 times day. It gave me the energy that i needed for the day. It definitly helped gas,foggyness.
I think the constapation created alot of bacteria in my intestines. I,m assuming it might come back. My head feels clearer now. I’m trying his diet low carbs,alot of cooked vegies with meat.
I take probiotic,b complex vit,fish oil,zinc,calcium. It good for stress. plus enzymes for digestion. I was having sleeping problems but did,nt want to get on drugs so i take 5-htp with droswy antihistimine at night. This seems to work for me. I think Mark Pimmentel,md knows his stuff.
hello all! feeling really dreadful today. I think my brains been buried in cotton wool. I’m shakey and dizzy and my poor little dog is looking at me with hopeful eyes knowing a walk is out of the question! Just waiting to see what else the day will bring… hope your all having a better day!
Hi Luci – just to say that calcium carbonate definitely helps some diarrhea sufferers. There’s a version called Caltrate Plus (purple bottle) in the USA, or for us UK folk there are versions available too at health food shops (Solgar does one I think).
Some reviews of calcium carbonate are here: http://www.ibstales.com/caltrate-plus.htm
Thanks Sophie, just to let you all know after spending 2 days in bed with horrendous dizzyness and nausia so needless to say I’m off those now. They are called pre gablin. Any one else tried those?
regards to all, Luci x
(P.S. my dog finally got a walk!)
Hi all! Thought I’d tell you about my latest visit to my GP’s… I asked if I could be prescribed calcium carbonate as I have heard Its good for IBS-D. She could not prescribe it as it is not a recommended treatment for diarrhrea and had never heard of calcium carbonate helping with IBS…. go figure? I wish the medical profession would swat up on treatments for IBS. Maybe they should read this site?? I’ve certainly learned more here than any Dr has taught me!
Stay well everyone! Luci
Hi Luci – you don’t need a prescription for calcium carbonate, it’s available as a food supplement from places like Holland and Barrett (in the UK) and from online shops like Amazon. It’s also the main ingredient in indigestion tablets like Rennie.
And why am I not surprised that a GP hasn’t heard of such a simple treatment for IBS-D?!? To be honest even if she hadn’t heard about it specifically I would have thought that she would know that calcium supplements can cause constipation as a side effect…
Hi Sophie,
Its amazing isn’t it? My dr said the only thing she could prescribe calcium carbonate for was osteo arthritus.
I will try holland and barrett. Thanks for the advise! You are a wealth of knowledge!
Luci.
Hi
Have been a IBS sufferer since a food poison 20 years ago thus my diagnosis of post-infections IBS.
Unfortunately I find that even the Gastro specialists are flying blind on this disease.
1 They only prescribe and cannot cure.
2. Unless they have IBS or Crohn’s related type Disease they have NO idea regarding the pain.
3. It is difficult to diagnose because there are no traditional tests to be given for it.
4. No none cure or prescription can cure this disease and they are not nutritionists so they don’t know how to treat your diet.
So here we stand as IBS chronic sufferer’s…I found that my knowledge of alternative medicine over the last 25 years helps my bouts. I know what brings them on, coffee, bacon anything real acidic, bell peppers and now spicy peppers, white bread etc.
I have told the Doctor’s many times…I can treat my IBS with diet, avoidance of certain foods and supplements, like mulit enzymes, pro and prebiotics, charcoal low acid diet etc. but and a big BUT is WE NEED PAIN MGT.
The link between gut pain and the brain are very significant. Once the pain catches hold of us…all bets are off…who cares about laxitives, probiotics and other cures…JUST GIVE US SOMETHING TO KILL THE PAIN.
Aspirin, advil etc only aggravate the stomach…hydrocodone, oxycodone seem to be the ONLY things that calm my anxiety, relax my colon, then eventually soothes me into a calm because I know that the balloon that seems to be blowing up at a rate that freaks me out or the pain radiating in my chest, kidneys makes me think my kidneys are going to explode.
They want to give me Zelnorm and Tegaserod…no way will I take a drugs…well I made the right decision it’s pulled by FDA because of a little thing called DEATH.
They want to put me on anti depressants and anti anxiety but not pain meds?…something I only need ONCE when the pain hits. Not something I can take everyday that will change my personality and lifestyle when I don’t have depression. The pharma companies don’t like that…they won’t permanent everyday dependancy.
So my Doc tells me we won’t treat the pain because it only causes constipation…take Miralax…
Hope this helps…love the website!
I tell him do you know what it’s like waking up in the middle of the night knowing that your heating blanket can cover you for so long…that no amt of anything will take the excrutiating pain that makes you believe that if there was a loaded gun in the room there would be no question of me using it just to black out the pain.
He gives me the dead stare…well maybe a anti depressant will help?
So I had a very bad episode last night…called my doctor and they said they won’t prescribe pain meds over the phone…so now I know, my nurse friend said “If it is midnight , 4am page out the doctor and let them see and know the pain you are in…I bet they will give you a prescription without a second thought.”
They will throw Zoloft at me in a moments notice knowing I have zero depression. So after four hours of writhing on the floor and crying like a baby last night my boyfriend handed me his Delaudid (from shoulder surgery 8mos ago) and said please take it. I wanted to listen to my Doctor see if I could deal with the pain. Screw it I thought…well, I took one and the burps came…then the passing of gas…yippee!!!…then the slow and steady relief of a soothing calms came over me then in a half an hour …sleep. I am at work at 8am today…no pain…no constipation cramps…no need to become addicted and having withdrawals…just happy to be sitting here knowing that my Doctor’s would rather I took another prescription illegally than just give me one for ten pills for the whole year to satisfy the only relief I really need from IBS….PAIN and a good BM in a few days
TO Sarah L…
The endocrine system has a lot to do with how are gut reacts…throat pain could be thyroid imbalance…it causes mood change, physical pain and symptoms and IBS…
To Shannon, you need pain medication…I would try to get to a Gastro Specialists and copy them this website. Long term prescription DOES NOT cure IBS but mananging the pain can change the quality of life that you seem to be lacking.
Good luck!!
i suffer IBS for seven years and recently have had bad bouts of it , but my doctor would rather give me anti dresspants than a hospital appointment IBS effects my mental health as well i can get so low at times with the pain i would just like to say doctors should take ibs as an illness and nt as a mental health issue
Dont think ur going mental it is ur ibs
Hi Nicola – I definitely agree about the fact that IBS is not a mental health problem – the “it’s all in your head” garbage is ridiculous and very, very outdated.
I do just want to mention though that some doctors prescribe anti-depressants to help genuine IBS symptoms. They can be very good at reducing pain for example, and some also cause diarrhea or constipation which can be good depending what end of the IBS spectrum you are on. The dose for IBS sufferers is often much lower than for depressed people.
It’s important to know that if a doctor offers an anti-depressant he may not just be fobbing you off, he can also be offering a tried and tested IBS medication.
hi, i have had tedrrific pain for the last 13 years since i was 16. i am now having to avoid all dairy and all wheat products, i suffer terribly with the diarrhea IBS i tent to go about 15 times a day, i suffer with terrific pains, i am once again going for more and more tests, any suggestions from anyone that could help? i am already on antidepressnats for the pain, pain killers, buscopan etc! Help please, Laura x
Hello, I am just wondering if your symptoms can escolate over time.. i have had IBS for 7 years now and all of a sudden I am starting to bleed from my rectum? I am wondering if it is from the IBS and if anyone else experiences this, or if i should see a doctor again? i am trying not to worry myself about it but it is kind of starting to scare me. if anyone knows anything about this please let me know thank you. and good health to everyone!!
Hi Cassie – please see a doctor about the bleeding. I would always advise seeing a doctor about any symptom you are worried about, as people on the internet (including me!) often have no medical training at all and don’t have access to your medical history.
I notice sometimes at work when i have ibs/ibd symtons, its either i’m off my diet or i’m not taking my supplements. I noticed i get more anxeity. I started to take B complex from trader joes, its once daily contolled release. I noticed the stress level at work is alot better . It helps my brain work better. i only take it on my work days. Plus the calcium, magnesium seems help too. I trueley notice symtons when i don’t take them. Have a great day! kathy
This is just update. 4 months ago i did the Dr pimentel two week liquid diet, taking vivonex for bacterial overgrowth drink . I have,nt had constapation since then. I have been regular once a day. But if i start eating sugar, choc, going off my ibs/diet, i start getting constapation back. If you do this go see your Dr. I did,nt have any fear because i was sick of how i felt. I did have some issues on this. Its not for everyone. Kaiser recommended d3 for supports bone,colon muscle,immune and breast health,i don’t get enough because i live in oregon. It rains too much. plus i take b complex,gingo for
memory,probiotic,zinc,fishoil, when i don’t take b complex i tkae multi vitimin. when you start getting older your body does,nt produce thing,so thats why i take all of this and it helps me. kathy
My dream is to have Dr. Wangen and Dr. Pimentel go into practic together plus throw in a vitamin Dr. I think this would help the ibs/ibd suffers. Its not a perfect, but it sure helps ease my symtons to a productive citizen. thanks to all the organic stores and professionals. Trader joes,fred Myer,new seasons,whole foods. My dream some day, kaiser will join them , for all us baby boomers. thanks kathy s
I have had ibs since the age of ten..usually just one day attacks. They would start off with sweating and feeling uncomfortably warm..and then cramping..usually after a bowel movement I was fine. And they stayed that way…coming on and off for over twenty years. Then one day they changed..I had right sided pain..it was so bad I went to emergency..they said they could find nothing wrong…no fever..so they ruled out my appendix. The pain went on with diaherra for over six months..I was sure I was dying..or had colon cancer..and they had missed it. I even went to get a pap smear and checked for any female problems. All was clear.Finally they pain left and all went back to normal. Now in my 50′s and going through menopause..the ibs has come back with a vengence..still the pain in the right side..cramping…diaherra..only this time with constipation. The extra suprise is that now I have panic attacks along with the ibs..and those are the worst. This latest attack had lasted over four weeks now..and I am so frustrated and worn out. I think the mental anguish ibs causes is the worst..and no one understands the misery you go through day after day. I understand all too well that cramp in the right side that remains day after day..it just wears you out. The latest added attraction is bladder problems..this is called Interstitial cystitis and it sometimes goes hand and hand with ibs. It feels like a bladder infection and you feel the need to urnitate around twenty times a day..and pressure on the bladder. Apparently they have found a connection between the two. I sort of though as you got older the ibs would lessen..I guess I thought wrong.
Hi Sophie,
I hope you are well! I haven’t written for a long time so I don’t know if you’ll remember me? Anyway, just to let you and anyone else who’s interested know I have finally been given employment and support allowance! Its taken 2 years and allot of stress and worry but after my second claim, second medical and second appeal tribuneral they finally gave me the 15 points I needed to qualify.
I’m sure anyone who has battled with the benefit system in this country (England) will understand the incredibly complicated and lengthy procedure I’m referring to! The first so called medical professional didn’t even recognize I.B.S as a medical problem and commented that I didn’t look ill as I seemed washed and had nail polish on!!!??? Speechless!!! Well, I got there in the end and it literally means the difference between loosing my home and being destitute and being able to live without the extra added stress of loosing benefit at any moment and being forced into a job I simply cannot do. So, for all those who are still battling…. DON’T GIVE UP!!!! Not for a moment!!!
Thank you Sophie for this fantastic web site and all the support that you and everyone on here gives. You’ve all been fantastic!
Keep well everyone!
Luci x
Hi Luci – I do indeed remember you, and that’s brilliant news! So glad to hear that it is actually possible to get through the minefield of a benefit application as an IBS sufferer.
Do you have any tips to share for anyone else going through the process? Maybe we could do a quick email interview on the subject – what forms you had to fill in, where you had to go, how it felt, how long it took to be approved etc. Let me know if you might be interested, as I’m sure there are lots of people who are in a similar boat.
Hi Sophie,
I wouldn’t mind doing that at all! I’d be more than happy to share my experiences, although I don’t have to much knowledge about the form filling, you get the forms given to you and, although tedious they are pretty self explanatory. However where you do have to put the work in is gathering evidence. That is all down to the individual. But yes, I am happy to share all that I can if you think it’ll help others. Absolute least I can do in return for all the support I’ve had from you and this site. Sincerely, thank you.
Hope to hear from you soon.
Luci x
Hi Sophie, I hope you got my recent e-mail about my brush with the benefits system and I hope it proves useful to others in the same situation!
Hope all well with you and all the readers!
Luci x
Jeff, I have Ibs-c and I tell you it is all in the food you eat, My daughter gave me a book for IBS for Dummys, it helped me out a lot, I don’t ever eat beef, eat cage free low fat chicken, veggie cheese, live culturak yogurt, beets carrots , Please read your food labels Good Luck
I also started out with colitis, have had cancer, and heart problems, and I am 77 and doing pretty good , have my days, but I say work your diet
Your thyroid level sounds off. Get Your TSH level checked. Brain fog, tired, IBS….Alarm bells for me as I have been there and by the time the damn doctors figured it out I should have been in a coma. Is your skin dry? Is Your hair thinning? Get a TSH check. Are You anxious? Are You depressed? Are You irritable? Could all be because You need to take one little pill a day. Remarkable.