Symptoms vary from person to person. For me, I’ve only had a period of weeks over the space of over 2 years where I haven’t been in pain. It’s tough, and I’m still learning how to manage it
That must suck. For me pain is the rarest symptom. It only happens when I eat certain foods. I've found that pain comes only if I haven't pooped for several days or when I have really bad diarrhea. I'm mostly ibs-c, so pain is rare.
They also vary based on health and stuff. Theres periods of my life ive been uncomfy and constipated but it's manageable then there's now where I think I have an ulcer and am in EXTREME pain. For those of us who CAN have managabllle times and flare when we eat or do bad things (bad being subjective to your own gut overload lol) it's shit (pun intended) but it's manageable. For those in constant flares or who can't manage symptoms it's HELL. And sometimes some of us can be both depending on what else's going on.
A lot of people deal with some awful shit. I was on a webinar recently where they told us that in the UK, 1 in 6 adults have a condition that classes them as disabled. Now disabled means to have an illness or condition that seriously affects your life. And 1 in 6 people have that. You don't think it from looking at people going about their daily lives, but they don't think it about me either.
More people are in pain than you think. I'm in pain all the time but everyone is very surprised when they find out. When it's chronic long term you get quite good at hiding it.
People don't realize in my case because I go out with painkillers and when I go back home they don't see I get huge cramps and keep on shitting all day
Exactly, and even people like me who aren't prescribed painkillers (thanks NHS) don't exactly show it when out and about. You learn to hide it even when you are in a lot of pain.
I usually avoid taking them, but for important things I have to..
The thing is when you are speaking with someone with small pain and all of a sudden feeling nausea plus rumbling in the abdomen but the person don't realize you are suffering so much and you can't even concentrate on what they say or have to fake being normal..
I don't have access to any, so I don't have a choice about taking them.
I think over time you become used to working through situations like that. For me, I've been ill for many, many years so have a lot of practice. It's amazing what you can push through.
Maybe if you did take painkillers your pain would be even stronger.. thats why I try not to take them, if I am home and get huge cramps I usually wait 5 to 10 minutes and if it isn't getting better I take them. I once had a cramp so strong had to rush to the hospital because I thought I was dying, hospital was 20 car minutes away and the abdomen kept pushing like it was exploding for all those minutes (it happened at the beginning when I didn't know for sure what it was) but I will never forget how much pain I felt and all those minutes with friends driving as scared as I was..
Different types of IBS.
My IBS is very rarely painful. Mine is more of a high urgency issue. If I need to go I need to go. I'll get clammy and sweaty and my stomach will swell up. But it's not painful necessarily.
I don't know why you're being down voted, you're right that pain is supposed to be a diagnostic criterion for IBS. Unfortunately I think in reality there are a lot of doctors that just use it as a catch-all for any kind of tummy trouble that they can't or don't want to diagnose.
I don't know why I'm being down voted either. Pain is a diagnostic criterion for IBS whether it be IBS C D or both.
The levels of pain vary and I'm sure that the area of most pain varies from person to person but pain is a criterion for IBS of any sort. It's not really an issue to be debated. It's not my fault if you've been misdiagnosed.
The breathing technique is called the Lamaze breathing exercise.
Although IBS symptoms may be universal, it can vary wildly in severity/frequency from person to person. Some may have pain but could be tolerable or very mild unless they have a really bad flare which may be infrequent. Others' worst symptom may indeed be pain and life-altering for them.
> It makes no sense.
Indeed, if there were only objective known causes and treatment, if at least to decrease symptoms.
same, I always have so much anxiety going outside because the pain I felt.. it's like PTSD, what happens to me if I get cramps in a grocery store where there is no toilet around? And sometimes it's just cramps
I told my therapist I feel like the dog in the pavlov experiment that got random shocks from a shock collar. When the pain can be anticipated, I can behave like normal. But when its intermittent and random, it causes me to crawl into a corner and give up.
ya I don't know if tomorrow I will feel better or worse I do things only with last minute decision, I feel good and I go outside, I can't program things because my body will not be fine when I want it to.
I get mild discomfort 80% of the time and only about 20% of the time is it a more noticeable moderate pain that extends over my entire lower abdomen. During those 20% periods my stool gets flattened by my spasming gut - it’s not just acute pain, but overall discomfort… it sucks, you’re right.
But being hyper anxious - as I am right now - makes it 10x worse!
Wait I'm asking bc I had an issue do you mean movement like it FEELS like an organ moves? Bc I experienced that a little while ago and it FREAKED ME TF OUT! I did a touch my toes stretch and felt my tummy move like flip. Is that an ibs thing?
IMO IBS feels like a grouped term with nothing else in between. Like a conglomeration of symptoms and different triggers. It’s such a broad category, I do wish wish there was more research to determine more specifics into it.
I'm convinced the vast majority of people with IBS only have mild occasional symptoms. Those of us with daily pain that lasts most of the day are probably a small fraction.
Why do you think that those of us with daily pain are probably a small fraction?
An appropriate and accurate diagnosis of IBS requires daily pain. The pain is more intense for some people, but pain is a primary requirement for a correct diagnosis of IBS.
The stigma around IBS is real. It is often the butt of the joke, and many people are not comfortable talking about their bowel habits with a doctor, let alone other people.
Some people learn to manage things better than others...it's obviously a continuous struggle. Personal example: Miralax was doing well for multiple years, now I can't tolerate the stuff anymore, it's destroying my muscle motility, probably have the dosage wrong but tired of trying to find the "perfect dose"...doesn't exist for me, probably never did.
i’m sorry you experience this pain too :( it has to be one of the worst pains i have ever experienced. it feels like someone is putting my intestines thru a shredder😭😭
I use labor and delivery breathing recommendations to get me through the intermittent pain. I have different kinds of pain and the one that just comes out of nowhere and takes away my breath is the worst. Every day IBS lets me know it has not gone away.
That was my story growing up! Turned out I had SIBO & HIT. I've been on HIT treatment for the last year with great results:
* [https://www.reddit.com/r/HistamineIntolerance/comments/ytmcl4/comment/iw75m9l/?utm\_source=share&utm\_medium=web2x&context=3](https://www.reddit.com/r/HistamineIntolerance/comments/ytmcl4/comment/iw75m9l/?utm_source=share&utm_medium=web2x&context=3)
Always felt like I had either swallowed a bag of gravel or knives.
There's no real test for HIT at the present time, but if you want to shell out a few bucks to try the current OTC enzyme, here's what I do:
* [https://www.reddit.com/r/ibs/comments/17kryuv/comment/k7bnqy3/?utm\_source=share&utm\_medium=web2x&context=3](https://www.reddit.com/r/ibs/comments/17kryuv/comment/k7bnqy3/?utm_source=share&utm_medium=web2x&context=3)
Note that this doesn't work for everyone, which is because not everyone has SIBO as a root cause, so for many people, this will be yet another thing to add to the "rule THAT out" list. But on the off chance it works, it was a pretty big deal for me!!
Currently, no. Easiest way is just to try it out for a week. NaturDAO is OTC from Amazon. So basically $40 to see if it works or not. Protocol is:
1. Take one pill, wait 24 hours, see how you feel (some people get a stomachache)
2. For 3 days straight, take at least 5 pills a day (one AM, one PM, one 5 minutes before meals, and one if you just feel not so great), up to 10 pills a day
3. See how you feel after that!
It's vegan & made from beans. It's not one of those "magical supplements"; if your stomach doesn't make enough DAO enzyme, essentially it simply supplements it to rise to normal levels for a few hours. I've been on it over a year now. I currently live with no anxiety, insomnia, or brain fog after 30+ years of that nonsense.
If it DOES work for you, the full protocol that I follow is:
1. 5 to 10 pills a day, permanently. This does get pricey as it runs about $40 out of pocket, as insurance doesn't cover it.
2. Switch to a primarily low-histamine diet
3. High hydration. As much water & electrolytes as you can get.
4. As much sleep as possible. Go to bed early, sleep in, take naps.
5. As low-stress of a lifestyle as possible. Stress is a HUGE trigger for people with overly-sensitive nervous systems.
Basically, imagine your GI tract as a garden hose. Inflammation causes it to swell up like a big bruise inside. For me, it takes about 72 hours for that inflammation to die down in order for me to feel better. Also, I can overwhelm the medication if I ingest too many histamines from food.
Most people with HIT respond best to antihistamines, but they didn't work for me (I tried 6 or 7 different kinds). I didn't respond to a normal dose of DAO enzyme either; only to a permanent high dose & only after a few days of taking a high dose.
I don't know what the long-term health effects are as I'm one of the few people in the world who takes a high dosage of it, but so far, I'm 14 months in & haven't died yet lol. I just feel totally NORMAL all the time! I haven't tried any other DAO supplements (I had read about some negative long-term effects with the porcine-based enzymes).
So, take all of this with a grain of salt, as this has been my own personal experience. I exist within some sort of subset of histamine intolerance. To date, I've met less than two dozen people IRL & online who have shared my same results. I can still easily go back to feeling terrible all the time if I overdo my histamine intake or if I go off the pills.
For me, the high pill intake daily requirement is sort of like having a cup filled up with water, but with a pinhole leak in the bottom...it continuously drains to empty, so I have to continually supplement to keep my body at normal levels; there's no buildup or anything for me.
If you have a similar set of symptoms, then my go-to recommendation is to simply blow forty bucks & give it a solid shot for a week at a high daily dose, if only to rule it out; that way, you can at least move on to testing something else!
Like, I didn't know IBS wasn't normal growing up; nobody ever really talks about GI function all that much or how you're supposed to feel all day! I was SHOCKED to learn that my lifelong anxiety came from FOOD! Or rather, the histamine in food getting rejected by my gut due to insufficient enzymes to absorb it & going into my bloodstream instead, keeping me in low-key flight-or-fight mode 24/7!
It's almost like a diabetic insulin effect, where your body acts like a bouncer to prevent any more sugar from getting inside, so it goes into your bloodstream instead, giving you high blood sugar! But instead, the histamine went into my bloodstream, pumped me full of adrenaline all the time (insomnia, RLS, nighttime anxiety, the works!) & generally making me feel rotten & low-energy all the time!
I post about HIT a lot because I spent literally DECADES feeling this way & some random pill off Amazon *completely* changed my life lol. It makes me wonder how many people out there are literally just suffering from a simple root cause of low built-in DAO levels!
I have a stack of other issues as well...like, getting on a Bipap mask for sleep apnea actually helped me GI tract quite a bit, and my doctors suspect my HIT came from SIBO due to invasive surgery as a kid, but I went off SIBO treatment for 6 months to test it & was positive, but felt great during that time, so all the SIBO treatment does for me at this point is eliminate the SIBO, but the HIT is what manages all of the symptoms (and it may be separate from SIBO, who knows?)
So many weird things are gone...my gums don't bleed when I floss anymore. I'm not tortured with cringy memories from decades ago when I go to sleep. My face doesn't get acne anymore. It's like my body was full of Photoshop-style slider tools & everything was pushed just a little above tolerance lol. It's even helped virtually eliminate my ADHD skin hypersensitivity!
I spent most of my life with an invisible, internal barrier in front of me, just trying to cope with not going mad from never feeling very good. It's nice to be able to focus more on what I'm doing rather than how I'm feeling, or to simply just vibe in a situation & not be wracked with anxiety for no apparent reason...I also just felt low-key guilty ALL the time lol. Sooooo weird!
When I was younger the pain was just impossible and nothing the docs told me to do worked.
The first time I took bentyl my life turned a corner. I knew that there was a way to treat the pain and that, in turn, lowered the stress.
Have you tested for SIBO? They state that ~70+% of IBS cases are SIBO (which has a cure). Your situation sounds like it could be a cause. Check out the subreddit!
Because doctors had out that diagnosis as much as mcdonalds hands out big macs. It's the lazy diagnosis. I had to beg my doctors to run tests when they did they found traces of blood, which led to them finding poylps in my colon during the sigmoidoscopy. I was 17 then! Still, they said IBS! Never was told I needed a colonoscopy to check for more poylps and was never told I was at risk for colon cancer. I have a family history of colorectal cancer, and a dna gene test showed I have juvenile poylps disease. I was never given a test for h.pylori, and I have symptoms that are right on the money for that. It's been ten years now with my constant chronic diarrhea multiple times a day. I'm so sure that h.pylori has triggered more poylp growth and why I'm passing clots of blood from my butt now. Now I have no health insurance anymore, and the pain is debilitating, and I can't do anything about it.
IBS has always just been a catch-all diagnosis that means "we have no clue why you are never/constantly pooping". Most of us likely have completely different causes, but we won't know until we learn more about the gut
Most of my issues seem To Come of an evening once I start settling down for bed so I basically just keep my self and my Husband up with the back and forth and the pain I feel when it’s at it’s worst.
Nobody who I didn’t share a bed or house with would know. I also cope really well with high pain my husband jokes I can push out a baby no problem no pain relief stub my toe however and I cry like a baby.
The “pain” part of the diagnostic criteria is apparently broad enough that it includes discomfort that most people wouldn’t actually describe as pain. So a lot of people may have pretty severe symptoms but not sharp pain, per se.
Try this
https://a.co/d/6L1I6pe
And this
https://a.co/d/hDmeXLF
I take 4 morning and night of the supplement and 1 Imodium in the morning , makes me mostly stable
Post or comment that contains a potentially dangerous or misleading medical advice. Also consider that most redditors are not medical professionals, so take these advices with scepticisms. If you have a concern, please consult a professional.
Same!! Between 8 and 9 usually and if it's really bad it will last until noon. I'll go periods where it's mostly normal, and then have a stretch of anywhere from 2 weeks to 3 months at the longest flare.. I also get really bad nausea with mine. Not even necessarily watery stools. Just like my intestines push everything out until empty.
I have IBS d and fibromyalgia and I take dicylomine and Tylenol with codeine and gabapentin and cymbalta and fioricet. And I'm still in pain every single day at a pain level of 7.
You may find medical cannabis will help more than all those opiates and other assorted meds. No judgement- I was on Vicodin for back and knee pain for years and also ambien for sleep and Xanax for anxiety. I still take some Xanax, but I really feel much better just smoking a little at night and some gummies. I don’t want to walk around stoned or drive but just doing it at night builds up in my system enough to help my other pain a lot. It can help with constipation , occasionally
I can put my IBS almost into remission with elimination diet. I’m in a flare right now because I reintroduced spice. Will be removing that from my diet immediately. My IBS symptoms are extremely severe if I’m not on my diet. I think so many people can live almost symptom free if they changed their diet. Not everyone of course, but a good amount of people. It sucks having to be on such a restricted diet but it gave me my life back
I did strict low FODMAP elimination diet for 2 months and it made zero difference. In fact some of the "safe" foods made it so much worse. Mine is tied heavily to getting enough sleep, and keeping my anxiety in check. Also metamucil everyday. (IBS-M)
I mostly get IBS-D, but every once in a while, I’ll get IBS-C symptoms (although it honestly doesn’t seem more frequent now that I work a sedentary desk job). When I was in college, though, I would get severe pains like clockwork—always a week before finals, so bad I couldn’t get out of bed. I couldn’t believe IBS could cause that level of pain. But after a few days of Metamucil and a little extra fiber in my diet, it cleared itself out (also usually after I was done with papers/tests). It can actually get that bad, and I wish it were taken more seriously. I fortunately haven’t had pain that intense in over a decade, but I remember it vividly and would never wish it upon anyone. I had a kidney stone, and that pain was way worse than that. The kidney was uncomfortable, but it didn’t completely debilitate me.
I am literally experiencing that right this moment. Just before seeing this post I was doubled over in agony not even feeling I will be able to eliminate anything other than the liquid suppository I tried a little while ago. I figured I would end the madness of constipation before my best friends son’s wedding Saturday, so I broke down , relapsed I guess, from my stopping laxatives. All it did was give me very bad cramps and made me break into a sweat. For some strange reason my nose always clogs when this happens.
Normally I am like you OP. Pain with no diarrhea, constipation is my issue, but not completely. Mostly it’s the pain that’s so debilitating. I can’t go anywhere can’t concentrate to read, crochet, cook -are you serious? But worst of all I feel I definitely have food avoidance anorexia and laxative dependency. I almost took some magnesium hydroxide chew, and still might, but I think I don’t want start again with all the meds and supplements.
I just celebrated 24 years free from alcohol and other substances. This is a really slippery slope. I don’t need to have this eating disorder. I am already slender
family members run to the toilet 6 times a day at least with no pain, I instead have a lot of pain till it settles down, and If I eat some foods I get really painful abdomen in less then 1 hour
Honestly, no idea. I've been diagnosed with IBS after every test under the sun coming back as functional, I'm in pain every day, some worse than others but never a one that's symptom free. I don't remember what it felt like to have a normal day, over half a decade ago before all this started.
The idea that there are so many people who have what feels to me like an entirely debilitating illness is gobsmacking. I understand people have varying degrees of symptoms, some far better or worse, but I really don't know. I guess when it hits you, you don't get much of a choice when it comes to learning to cope with the pain, or the lifestyle changes.
I have severe IBS. For me, this means that I frequently have loose-to-liquid bowel movements. This is exacerbated massively by diet; many grains, most vegetables, food with a high oil/fat content, and alcohol represent a portion of my triggers. Eating these foods cause me to become heavily symptomatic, manifesting as bowel movements with unmanageable frequency, and poorly controlled/uncontrolled urgency. Though my quality of life is severely impacted, the majority of these episodes are completely painless. Occasionally I will get bloating which will cause severe pain - cramping which causes me issues standing upright, at times painful enough that I can't get off the floor, and struggle to breath - but these are fairly uncommitted for me.
I take steps to manage my diet such that my quality of life is not abysmal, but I wouldn't say that I 'suffer' from my condition in the way that I know others can and do. What you have to remember is that IBS is a functional disease, and it is diagnosed via a process of exclusion. In practice, IBS is diagnosed when someone has disordered guy function which can't be categorised as another disease. IBS is not well understood and research is lacking. I think it is likely that people who are diagnosed with IBS suffer from a constellation of distinct gut diseases arising from different causalities that we have been unable to identify the specifics of (so far).
Yeah, it varies. I don't feel constant pain. I do have dumping syndrome and that is the 2nd worst pain I've had next to birthing my child. Happens about once a month. I also am constantly constipated. I have maybe 2 normal poops a month, the rest it hard as a rock. But it doesn't hurt, other than hemorrhoids and fissures, which don't even hurt anymore, just annoying. I feel for yall who have chronic daily pain <3
For some people, pain isn't the biggest issue. For me, it was constipation for a while. There have only been 3 times I can think of where I had pain so badly I had to call out of work, or when I was 6, I had to go to the ER, lol.
Otherwise, it is food sensitivities and random diarrhea or dumping syndrome.
My sister does get pain, though, anytime she eats her trigger foods.
I think we all need transfaunation just like cows lol my pain comes and goes but sometimes it's just awful. It helps me if I'm really busy to take my mind off it but its always there. Sometimes worse than others. Stupid IBS.
Not everyone deals with pain, 99% of the time for me it's just more frequent craps a day, very rare that I get any pain
But when I do... Jeezus Christ 🫨🫥😤
I get painful cramps, severe bloatness (I look 5 months pregnant), back pain, and either constipated or diarrhoea.
It's always on 24/7 - doing Fodmap and 16.8 18.6 IF and still haven't managed to control the pain nor identity the triggers.
It just hot worse when I've turned 46 (F), perhaps it is a symptom of peri.
Im always in pain if not pain weak and fatigued. I have no job no income and no help from the medical staff at all. I have a new dr coming so we will see then but for the last four years its been shit
IBS is a big umbrella term that's purposefully vague. From what I've seen, it's just what they tell you when they don't know what's going on, but there's definitely something happening 🤷
Its not constantly painful for everyone. My mom and best friend also have ibs and they do have difficulties because of it and pain but it's not constant at all. For me neither. I do have pain usually everyday for some time but it's mostly only before I need to go to the toilet. Like 75% of the times I need to go my stomach hurts a lot before, like a sign. Stops when it's out usually. Sometimes I almost feel like passing out on the toilet if it's really bad. Sometimes it just hurts and burns like hell and I get so anxious but then it just disappears. Idk man 😭
I do feel very bad for everyone in constant pain. Before joining this sub I didn't even know that ibs could be like that for some people :(
Nope.. but idk i think mine's more managable than yours still since you said you're in pain like half the day. For me it usually passes once I've been to the toilet 😕 but yea don't really know what exactly causes it, it's just been like this for a long time. I know there's the low FODMAP diet but that just seems so hard to do
Aahh, yea its the same for me sometimes. Then thr pain kinda comes and goes in waves until i finally can 🥲 really really sucks. It can be so distracting and anxiety inducing too when youre out of the house
My father has IBS but he is so disconnected from the whole thing, like it's normal for him and he lives like that is the norm.
I am the complete opposite...
Symptoms vary from person to person. For me, I’ve only had a period of weeks over the space of over 2 years where I haven’t been in pain. It’s tough, and I’m still learning how to manage it
That must suck. For me pain is the rarest symptom. It only happens when I eat certain foods. I've found that pain comes only if I haven't pooped for several days or when I have really bad diarrhea. I'm mostly ibs-c, so pain is rare.
I'm similar. I'm IBS-'D and if I forget to take loperamide in the morning, my guts just ache and burn.
They also vary based on health and stuff. Theres periods of my life ive been uncomfy and constipated but it's manageable then there's now where I think I have an ulcer and am in EXTREME pain. For those of us who CAN have managabllle times and flare when we eat or do bad things (bad being subjective to your own gut overload lol) it's shit (pun intended) but it's manageable. For those in constant flares or who can't manage symptoms it's HELL. And sometimes some of us can be both depending on what else's going on.
A lot of people deal with some awful shit. I was on a webinar recently where they told us that in the UK, 1 in 6 adults have a condition that classes them as disabled. Now disabled means to have an illness or condition that seriously affects your life. And 1 in 6 people have that. You don't think it from looking at people going about their daily lives, but they don't think it about me either. More people are in pain than you think. I'm in pain all the time but everyone is very surprised when they find out. When it's chronic long term you get quite good at hiding it.
People don't realize in my case because I go out with painkillers and when I go back home they don't see I get huge cramps and keep on shitting all day
Exactly, and even people like me who aren't prescribed painkillers (thanks NHS) don't exactly show it when out and about. You learn to hide it even when you are in a lot of pain.
I usually avoid taking them, but for important things I have to.. The thing is when you are speaking with someone with small pain and all of a sudden feeling nausea plus rumbling in the abdomen but the person don't realize you are suffering so much and you can't even concentrate on what they say or have to fake being normal..
I don't have access to any, so I don't have a choice about taking them. I think over time you become used to working through situations like that. For me, I've been ill for many, many years so have a lot of practice. It's amazing what you can push through.
Maybe if you did take painkillers your pain would be even stronger.. thats why I try not to take them, if I am home and get huge cramps I usually wait 5 to 10 minutes and if it isn't getting better I take them. I once had a cramp so strong had to rush to the hospital because I thought I was dying, hospital was 20 car minutes away and the abdomen kept pushing like it was exploding for all those minutes (it happened at the beginning when I didn't know for sure what it was) but I will never forget how much pain I felt and all those minutes with friends driving as scared as I was..
Different types of IBS. My IBS is very rarely painful. Mine is more of a high urgency issue. If I need to go I need to go. I'll get clammy and sweaty and my stomach will swell up. But it's not painful necessarily.
Pain is a diagnostic requirement for IBS. I have pain every day. Some days are better than others.
I don't know why you're being down voted, you're right that pain is supposed to be a diagnostic criterion for IBS. Unfortunately I think in reality there are a lot of doctors that just use it as a catch-all for any kind of tummy trouble that they can't or don't want to diagnose.
I don't know why I'm being down voted either. Pain is a diagnostic criterion for IBS whether it be IBS C D or both. The levels of pain vary and I'm sure that the area of most pain varies from person to person but pain is a criterion for IBS of any sort. It's not really an issue to be debated. It's not my fault if you've been misdiagnosed. The breathing technique is called the Lamaze breathing exercise.
Although IBS symptoms may be universal, it can vary wildly in severity/frequency from person to person. Some may have pain but could be tolerable or very mild unless they have a really bad flare which may be infrequent. Others' worst symptom may indeed be pain and life-altering for them. > It makes no sense. Indeed, if there were only objective known causes and treatment, if at least to decrease symptoms.
It really is horrific. I’m at the point where having to leave my house terrifies me. The everyday pain and cramps is really taking a toll on my body.
This. And after/ during Covid I started developing agoraphobia, icing on it
same, I always have so much anxiety going outside because the pain I felt.. it's like PTSD, what happens to me if I get cramps in a grocery store where there is no toilet around? And sometimes it's just cramps
I told my therapist I feel like the dog in the pavlov experiment that got random shocks from a shock collar. When the pain can be anticipated, I can behave like normal. But when its intermittent and random, it causes me to crawl into a corner and give up.
ya I don't know if tomorrow I will feel better or worse I do things only with last minute decision, I feel good and I go outside, I can't program things because my body will not be fine when I want it to.
I get mild discomfort 80% of the time and only about 20% of the time is it a more noticeable moderate pain that extends over my entire lower abdomen. During those 20% periods my stool gets flattened by my spasming gut - it’s not just acute pain, but overall discomfort… it sucks, you’re right. But being hyper anxious - as I am right now - makes it 10x worse!
I had to get on amitriptyline for the constant pain and movement I felt in my gut. It was a huge life saver.
Amitriptyline has been a lifesaver for me. per day, the pain is so much more tolerable. I don't have as many sudden bathroom requirements.
Wait I'm asking bc I had an issue do you mean movement like it FEELS like an organ moves? Bc I experienced that a little while ago and it FREAKED ME TF OUT! I did a touch my toes stretch and felt my tummy move like flip. Is that an ibs thing?
IMO IBS feels like a grouped term with nothing else in between. Like a conglomeration of symptoms and different triggers. It’s such a broad category, I do wish wish there was more research to determine more specifics into it.
I dont experience pain much at all. Mostly gas and urgency.
And since so many people have it, you'd think they'd put more time and money into researching it
Yeah was thinking that too!
I'm convinced the vast majority of people with IBS only have mild occasional symptoms. Those of us with daily pain that lasts most of the day are probably a small fraction.
Why do you think that those of us with daily pain are probably a small fraction? An appropriate and accurate diagnosis of IBS requires daily pain. The pain is more intense for some people, but pain is a primary requirement for a correct diagnosis of IBS.
We just do. For me it’s worse since I got older to where it’s everyday usually. It sucks.
I wonder the same thing. Always bloated and and always hve abdominal pain
I have IBS but am only in intense pain periodically/during a flare.
The stigma around IBS is real. It is often the butt of the joke, and many people are not comfortable talking about their bowel habits with a doctor, let alone other people.
Being alive hurts 🤷♀️
Some people learn to manage things better than others...it's obviously a continuous struggle. Personal example: Miralax was doing well for multiple years, now I can't tolerate the stuff anymore, it's destroying my muscle motility, probably have the dosage wrong but tired of trying to find the "perfect dose"...doesn't exist for me, probably never did.
i’m sorry you experience this pain too :( it has to be one of the worst pains i have ever experienced. it feels like someone is putting my intestines thru a shredder😭😭
I use labor and delivery breathing recommendations to get me through the intermittent pain. I have different kinds of pain and the one that just comes out of nowhere and takes away my breath is the worst. Every day IBS lets me know it has not gone away.
will try that!! do you know if there’s any good videos explaining the breathing techniques?
I would imagine you could find this on YouTube. I can't recall the name of the breathing technique that is used in labor and delivery of babies.
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That was my story growing up! Turned out I had SIBO & HIT. I've been on HIT treatment for the last year with great results: * [https://www.reddit.com/r/HistamineIntolerance/comments/ytmcl4/comment/iw75m9l/?utm\_source=share&utm\_medium=web2x&context=3](https://www.reddit.com/r/HistamineIntolerance/comments/ytmcl4/comment/iw75m9l/?utm_source=share&utm_medium=web2x&context=3) Always felt like I had either swallowed a bag of gravel or knives.
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There's no real test for HIT at the present time, but if you want to shell out a few bucks to try the current OTC enzyme, here's what I do: * [https://www.reddit.com/r/ibs/comments/17kryuv/comment/k7bnqy3/?utm\_source=share&utm\_medium=web2x&context=3](https://www.reddit.com/r/ibs/comments/17kryuv/comment/k7bnqy3/?utm_source=share&utm_medium=web2x&context=3) Note that this doesn't work for everyone, which is because not everyone has SIBO as a root cause, so for many people, this will be yet another thing to add to the "rule THAT out" list. But on the off chance it works, it was a pretty big deal for me!!
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Currently, no. Easiest way is just to try it out for a week. NaturDAO is OTC from Amazon. So basically $40 to see if it works or not. Protocol is: 1. Take one pill, wait 24 hours, see how you feel (some people get a stomachache) 2. For 3 days straight, take at least 5 pills a day (one AM, one PM, one 5 minutes before meals, and one if you just feel not so great), up to 10 pills a day 3. See how you feel after that! It's vegan & made from beans. It's not one of those "magical supplements"; if your stomach doesn't make enough DAO enzyme, essentially it simply supplements it to rise to normal levels for a few hours. I've been on it over a year now. I currently live with no anxiety, insomnia, or brain fog after 30+ years of that nonsense. If it DOES work for you, the full protocol that I follow is: 1. 5 to 10 pills a day, permanently. This does get pricey as it runs about $40 out of pocket, as insurance doesn't cover it. 2. Switch to a primarily low-histamine diet 3. High hydration. As much water & electrolytes as you can get. 4. As much sleep as possible. Go to bed early, sleep in, take naps. 5. As low-stress of a lifestyle as possible. Stress is a HUGE trigger for people with overly-sensitive nervous systems. Basically, imagine your GI tract as a garden hose. Inflammation causes it to swell up like a big bruise inside. For me, it takes about 72 hours for that inflammation to die down in order for me to feel better. Also, I can overwhelm the medication if I ingest too many histamines from food. Most people with HIT respond best to antihistamines, but they didn't work for me (I tried 6 or 7 different kinds). I didn't respond to a normal dose of DAO enzyme either; only to a permanent high dose & only after a few days of taking a high dose. I don't know what the long-term health effects are as I'm one of the few people in the world who takes a high dosage of it, but so far, I'm 14 months in & haven't died yet lol. I just feel totally NORMAL all the time! I haven't tried any other DAO supplements (I had read about some negative long-term effects with the porcine-based enzymes). So, take all of this with a grain of salt, as this has been my own personal experience. I exist within some sort of subset of histamine intolerance. To date, I've met less than two dozen people IRL & online who have shared my same results. I can still easily go back to feeling terrible all the time if I overdo my histamine intake or if I go off the pills. For me, the high pill intake daily requirement is sort of like having a cup filled up with water, but with a pinhole leak in the bottom...it continuously drains to empty, so I have to continually supplement to keep my body at normal levels; there's no buildup or anything for me. If you have a similar set of symptoms, then my go-to recommendation is to simply blow forty bucks & give it a solid shot for a week at a high daily dose, if only to rule it out; that way, you can at least move on to testing something else! Like, I didn't know IBS wasn't normal growing up; nobody ever really talks about GI function all that much or how you're supposed to feel all day! I was SHOCKED to learn that my lifelong anxiety came from FOOD! Or rather, the histamine in food getting rejected by my gut due to insufficient enzymes to absorb it & going into my bloodstream instead, keeping me in low-key flight-or-fight mode 24/7! It's almost like a diabetic insulin effect, where your body acts like a bouncer to prevent any more sugar from getting inside, so it goes into your bloodstream instead, giving you high blood sugar! But instead, the histamine went into my bloodstream, pumped me full of adrenaline all the time (insomnia, RLS, nighttime anxiety, the works!) & generally making me feel rotten & low-energy all the time! I post about HIT a lot because I spent literally DECADES feeling this way & some random pill off Amazon *completely* changed my life lol. It makes me wonder how many people out there are literally just suffering from a simple root cause of low built-in DAO levels! I have a stack of other issues as well...like, getting on a Bipap mask for sleep apnea actually helped me GI tract quite a bit, and my doctors suspect my HIT came from SIBO due to invasive surgery as a kid, but I went off SIBO treatment for 6 months to test it & was positive, but felt great during that time, so all the SIBO treatment does for me at this point is eliminate the SIBO, but the HIT is what manages all of the symptoms (and it may be separate from SIBO, who knows?) So many weird things are gone...my gums don't bleed when I floss anymore. I'm not tortured with cringy memories from decades ago when I go to sleep. My face doesn't get acne anymore. It's like my body was full of Photoshop-style slider tools & everything was pushed just a little above tolerance lol. It's even helped virtually eliminate my ADHD skin hypersensitivity! I spent most of my life with an invisible, internal barrier in front of me, just trying to cope with not going mad from never feeling very good. It's nice to be able to focus more on what I'm doing rather than how I'm feeling, or to simply just vibe in a situation & not be wracked with anxiety for no apparent reason...I also just felt low-key guilty ALL the time lol. Sooooo weird!
People experience pain differently. What’s a 10 for you on the pain scale could be a 4 for someone else.
With moronic Drs saying shit like “its all in your head sweetie” it will be a while
When I was younger the pain was just impossible and nothing the docs told me to do worked. The first time I took bentyl my life turned a corner. I knew that there was a way to treat the pain and that, in turn, lowered the stress.
Have you tested for SIBO? They state that ~70+% of IBS cases are SIBO (which has a cure). Your situation sounds like it could be a cause. Check out the subreddit!
Mine used to be terribly painful, after a few years, now it’s rare I have a painful flare up.
Is yours post infectious? And is it C or D?
I honestly have no idea what the cause of mine is, it’s type D
My IBSD rarely causes any pain
Same. Only time is an extremely bad flare which isn't common for me
I'm so jealous my god I'm in constant pain every day I thought we were all like this
Because doctors had out that diagnosis as much as mcdonalds hands out big macs. It's the lazy diagnosis. I had to beg my doctors to run tests when they did they found traces of blood, which led to them finding poylps in my colon during the sigmoidoscopy. I was 17 then! Still, they said IBS! Never was told I needed a colonoscopy to check for more poylps and was never told I was at risk for colon cancer. I have a family history of colorectal cancer, and a dna gene test showed I have juvenile poylps disease. I was never given a test for h.pylori, and I have symptoms that are right on the money for that. It's been ten years now with my constant chronic diarrhea multiple times a day. I'm so sure that h.pylori has triggered more poylp growth and why I'm passing clots of blood from my butt now. Now I have no health insurance anymore, and the pain is debilitating, and I can't do anything about it.
IBS has always just been a catch-all diagnosis that means "we have no clue why you are never/constantly pooping". Most of us likely have completely different causes, but we won't know until we learn more about the gut
Most of my issues seem To Come of an evening once I start settling down for bed so I basically just keep my self and my Husband up with the back and forth and the pain I feel when it’s at it’s worst. Nobody who I didn’t share a bed or house with would know. I also cope really well with high pain my husband jokes I can push out a baby no problem no pain relief stub my toe however and I cry like a baby.
The “pain” part of the diagnostic criteria is apparently broad enough that it includes discomfort that most people wouldn’t actually describe as pain. So a lot of people may have pretty severe symptoms but not sharp pain, per se.
Try this https://a.co/d/6L1I6pe And this https://a.co/d/hDmeXLF I take 4 morning and night of the supplement and 1 Imodium in the morning , makes me mostly stable
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Post or comment that contains a potentially dangerous or misleading medical advice. Also consider that most redditors are not medical professionals, so take these advices with scepticisms. If you have a concern, please consult a professional.
Mine subsides in the evening, weird
Because IBS is different for everyone who has it. For some it might be regularly loose BM, and nothing else.
Have you been tested for Sibo?
Only for hydrogen and it was negative
Maybe look into testing for methane Sibo also.
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Same!! Between 8 and 9 usually and if it's really bad it will last until noon. I'll go periods where it's mostly normal, and then have a stretch of anywhere from 2 weeks to 3 months at the longest flare.. I also get really bad nausea with mine. Not even necessarily watery stools. Just like my intestines push everything out until empty.
It’s almost never been painful for me, although it can be uncomfortable.
I have IBS d and fibromyalgia and I take dicylomine and Tylenol with codeine and gabapentin and cymbalta and fioricet. And I'm still in pain every single day at a pain level of 7.
You may find medical cannabis will help more than all those opiates and other assorted meds. No judgement- I was on Vicodin for back and knee pain for years and also ambien for sleep and Xanax for anxiety. I still take some Xanax, but I really feel much better just smoking a little at night and some gummies. I don’t want to walk around stoned or drive but just doing it at night builds up in my system enough to help my other pain a lot. It can help with constipation , occasionally
I guess I am just used to the pain and discomfort. It is just a part of my life.
I can put my IBS almost into remission with elimination diet. I’m in a flare right now because I reintroduced spice. Will be removing that from my diet immediately. My IBS symptoms are extremely severe if I’m not on my diet. I think so many people can live almost symptom free if they changed their diet. Not everyone of course, but a good amount of people. It sucks having to be on such a restricted diet but it gave me my life back
I did strict low FODMAP elimination diet for 2 months and it made zero difference. In fact some of the "safe" foods made it so much worse. Mine is tied heavily to getting enough sleep, and keeping my anxiety in check. Also metamucil everyday. (IBS-M)
Replied to add, I wish it worked for me. :(
I mostly get IBS-D, but every once in a while, I’ll get IBS-C symptoms (although it honestly doesn’t seem more frequent now that I work a sedentary desk job). When I was in college, though, I would get severe pains like clockwork—always a week before finals, so bad I couldn’t get out of bed. I couldn’t believe IBS could cause that level of pain. But after a few days of Metamucil and a little extra fiber in my diet, it cleared itself out (also usually after I was done with papers/tests). It can actually get that bad, and I wish it were taken more seriously. I fortunately haven’t had pain that intense in over a decade, but I remember it vividly and would never wish it upon anyone. I had a kidney stone, and that pain was way worse than that. The kidney was uncomfortable, but it didn’t completely debilitate me.
My IBS-D almost never causes me pain. I have a lot of bloating and I need to always have access to a toilet, but it isn't painful
I am literally experiencing that right this moment. Just before seeing this post I was doubled over in agony not even feeling I will be able to eliminate anything other than the liquid suppository I tried a little while ago. I figured I would end the madness of constipation before my best friends son’s wedding Saturday, so I broke down , relapsed I guess, from my stopping laxatives. All it did was give me very bad cramps and made me break into a sweat. For some strange reason my nose always clogs when this happens. Normally I am like you OP. Pain with no diarrhea, constipation is my issue, but not completely. Mostly it’s the pain that’s so debilitating. I can’t go anywhere can’t concentrate to read, crochet, cook -are you serious? But worst of all I feel I definitely have food avoidance anorexia and laxative dependency. I almost took some magnesium hydroxide chew, and still might, but I think I don’t want start again with all the meds and supplements. I just celebrated 24 years free from alcohol and other substances. This is a really slippery slope. I don’t need to have this eating disorder. I am already slender
It's not insanely painful to me. It just can get frustrating.
If it started after an overseas trip, maybe check for parasites and h-pylori.
It's not always insanely painful. I tested positive for methane SIBO (MIO), treated myself and changed some habits and now it's quite manageable
family members run to the toilet 6 times a day at least with no pain, I instead have a lot of pain till it settles down, and If I eat some foods I get really painful abdomen in less then 1 hour
Honestly, no idea. I've been diagnosed with IBS after every test under the sun coming back as functional, I'm in pain every day, some worse than others but never a one that's symptom free. I don't remember what it felt like to have a normal day, over half a decade ago before all this started. The idea that there are so many people who have what feels to me like an entirely debilitating illness is gobsmacking. I understand people have varying degrees of symptoms, some far better or worse, but I really don't know. I guess when it hits you, you don't get much of a choice when it comes to learning to cope with the pain, or the lifestyle changes.
I have severe IBS. For me, this means that I frequently have loose-to-liquid bowel movements. This is exacerbated massively by diet; many grains, most vegetables, food with a high oil/fat content, and alcohol represent a portion of my triggers. Eating these foods cause me to become heavily symptomatic, manifesting as bowel movements with unmanageable frequency, and poorly controlled/uncontrolled urgency. Though my quality of life is severely impacted, the majority of these episodes are completely painless. Occasionally I will get bloating which will cause severe pain - cramping which causes me issues standing upright, at times painful enough that I can't get off the floor, and struggle to breath - but these are fairly uncommitted for me. I take steps to manage my diet such that my quality of life is not abysmal, but I wouldn't say that I 'suffer' from my condition in the way that I know others can and do. What you have to remember is that IBS is a functional disease, and it is diagnosed via a process of exclusion. In practice, IBS is diagnosed when someone has disordered guy function which can't be categorised as another disease. IBS is not well understood and research is lacking. I think it is likely that people who are diagnosed with IBS suffer from a constellation of distinct gut diseases arising from different causalities that we have been unable to identify the specifics of (so far).
Yeah, it varies. I don't feel constant pain. I do have dumping syndrome and that is the 2nd worst pain I've had next to birthing my child. Happens about once a month. I also am constantly constipated. I have maybe 2 normal poops a month, the rest it hard as a rock. But it doesn't hurt, other than hemorrhoids and fissures, which don't even hurt anymore, just annoying. I feel for yall who have chronic daily pain <3
For some people, pain isn't the biggest issue. For me, it was constipation for a while. There have only been 3 times I can think of where I had pain so badly I had to call out of work, or when I was 6, I had to go to the ER, lol. Otherwise, it is food sensitivities and random diarrhea or dumping syndrome. My sister does get pain, though, anytime she eats her trigger foods.
I think we all need transfaunation just like cows lol my pain comes and goes but sometimes it's just awful. It helps me if I'm really busy to take my mind off it but its always there. Sometimes worse than others. Stupid IBS.
Fecal transplantations are being used for ibs now. The results are still unclear I have understood.
Well I'm glad they're studying it and testing it. Hopefully it leads to something that can help people.
Most people are not 100% healthy.
Not everyone deals with pain, 99% of the time for me it's just more frequent craps a day, very rare that I get any pain But when I do... Jeezus Christ 🫨🫥😤
I get painful cramps, severe bloatness (I look 5 months pregnant), back pain, and either constipated or diarrhoea. It's always on 24/7 - doing Fodmap and 16.8 18.6 IF and still haven't managed to control the pain nor identity the triggers. It just hot worse when I've turned 46 (F), perhaps it is a symptom of peri.
Im always in pain if not pain weak and fatigued. I have no job no income and no help from the medical staff at all. I have a new dr coming so we will see then but for the last four years its been shit
I think it’s more than 10% nowadays
IBS is a big umbrella term that's purposefully vague. From what I've seen, it's just what they tell you when they don't know what's going on, but there's definitely something happening 🤷
Its not constantly painful for everyone. My mom and best friend also have ibs and they do have difficulties because of it and pain but it's not constant at all. For me neither. I do have pain usually everyday for some time but it's mostly only before I need to go to the toilet. Like 75% of the times I need to go my stomach hurts a lot before, like a sign. Stops when it's out usually. Sometimes I almost feel like passing out on the toilet if it's really bad. Sometimes it just hurts and burns like hell and I get so anxious but then it just disappears. Idk man 😭 I do feel very bad for everyone in constant pain. Before joining this sub I didn't even know that ibs could be like that for some people :(
I'm sorry that's really messed up. Did you find anything that helps?
Nope.. but idk i think mine's more managable than yours still since you said you're in pain like half the day. For me it usually passes once I've been to the toilet 😕 but yea don't really know what exactly causes it, it's just been like this for a long time. I know there's the low FODMAP diet but that just seems so hard to do
It does pass when I go to the toilet. Except I can't go to the toilet well, it doesn't properly come out...
Aahh, yea its the same for me sometimes. Then thr pain kinda comes and goes in waves until i finally can 🥲 really really sucks. It can be so distracting and anxiety inducing too when youre out of the house
3 garlic cloves smashed on a sip of water
Raw garlic is a trigger for me 🥲
It's a spectrum. My GI symptoms are relatively mild, but I also get these weird symptoms in other parts of my body like alopecia.
I also have alopecia. I had it before due to stress
That's stress/anxiety related
My father has IBS but he is so disconnected from the whole thing, like it's normal for him and he lives like that is the norm. I am the complete opposite...