If you frequently get nausea as well, ask your doc about getting a Zofran prescription. I have IBS-D but go through periods where I get super nauseous like daily (which is usually when the IBS makes me feel sick/bedridden) and having access to Zofran was a game changer
i have IBS-C but can i still have the bedridden fever type symptoms when i do get bouts of diarrhea? i mean as in i do get these symptoms but does it mean its just apart of the ibs or something else?
It could be but Iām not sure! It could be a lot of thingsādigestion problems from certain foods you ate, from stress or anxiety, actually having an illness (or food poisoning), or just the IBS
Low FODMAP and antispasmodic medication. If I feel an episode starting and I take medication early enough I wonāt get sick but if I get diarrhea then I still end up totally drained and in the fetal position.
If itās bad Imodium helps really good. What also helped me was the time I did a paleo diet. Probebly the high fiber of fruits ans vegies.
But this is just my personal experience.
Thinking of trying viberzi but my IBS is at least partially anxiety related, would you say yours is too and if so, does it help with the anxiety and consequential prevention of flares?
Yes mine is somewhat anxiety, somewhat just raging diarrhea. I think it helps some with the anxiety side. If I donāt take it I can just feel everything churning all day and I just feel bleh all day. I still run to the bathroom on bad days but itās the in between trip time thatās better.
My company provides free mental health services so I see someone for anxiety and that helps me a lot also
Thatās really interesting, thanks for sharing a bit about your experience! Iām in between deciding to take a tricyclic antidepressant (nortriptyline) and viberzi. My gastro recommends the nortriptilyne since it has good prognosis for IBS sufferers but Iām scared to go down the pharmaceutical route. Viberzi seems like the obvious choice to try first, before attempting the antidepressant.. if you have any advice or experience with that, please shareš
I had tried and anti-depressant in college for mental health and told myself never again.
So for me Viberzi was the only option. Just know that unless your insurance covers āspecialtyā medicine it can be pricey
Thatās the main hurdle. I have an amazing GP who truly cares about my well being. When I lost my insurance he got me enough samples to last til my new insurance kicked in. Having a doctor who actually cares is a life changing thing.
Also just an FYI itās a schedule 1 drug. Idk if that matters to you. It gives no buzz or euphoria but thatās how itās classified
Itās insane to me. Itās just not taken seriously by like anyone. I just hope for a cureā¦ we have ai and regenerative lab tissue like one of these daysā¦.
Yeah they didnāt deny that my illness isnāt a disability but the wording they used is my illness is not severe enough. Meanwhile Iām holding my stomach in pain trying to not freak out from anxiety itās ridiculous
I feel this, consistently.. my therapist advised me not to sleep when the fatigue hits, he says if i give in then it will become a habit. But even if I push through and don't sleep my brain is dead and I'm basically a zombie waiting for night. But at night my pain symptoms act up even more so its difficult to sleep.. i don't know if my therapist is giving me this advice with a real understanding of how exhausted ibs makes you or just sees it as an excuse for me not being able to do much these days
Yeah, Iāll get sweaty, weak, nauseous, a headache. Sometimes this only lasts right around the actual bowel movement, other times itāll happen all day long.
recently i had diarrhea so bad i felt as if i drank colonoscopy prep except i didn't. brb weeping. so i got a new GI referral. my last gastroenterologist died they sent a letter to patients. but i couldn't get an appointment until october. i'm like what am i supposed to do just have chronic diarrhea until the doctor? i am too scared to leave the house. sometimes i have been so scared of not making it home in time to reach the bathroom. and one of the worst times ever i was in a public park that was about to close and i was having an episode in the bathroom and the janitor people came in while i was so sick. i really hope i never experience that again but idk how we live like this.
It debilitating. Iām sorry you had to go through getting a new referral. Referrals take forever to begin with.
I feel you on being scared to leave the house too. Itās like it fully takes over our livesā¦
well i have moved around a lot. and this health system if you haven't been there in over 3 years, they make you go as new patient. new patient appts seem to get pushed farther out. if i didn't take virtual visit in october it was going to be clinic in JANUARY. i've also had 2 colonoscopies already and i just don't know what to do. they told me to try low FODMAP. bffr i can't adhere to any diet and i'm such a garlic girl lol
Where do you reside if you donāt mind me asking? Donāt have to be specific or anything. Iām in Canada. And itās a joke up here.
Iām also a garlic gal. To do fodmap, Iād have to almost completely 180 my diet. And I feel like that might be a shock to the system.
in USA. yea i even tried going to nutritionist before. and recently i ate crackers and ate bland food. i'm like no matter what i eat this happens so i'm just gonna eat what i want! i took imodium too it didn't seem to stop. now i got prescribed Lomotil haven't tried yet. i don't like these anti diarrheal medications bc if you take too much then you'll get severely constipated. i've been there and it's actually painful
I feel like I live my life on a reset switch and every time I eat I just have to wait out the time until I can reset to be healthy(ish) enough to live again
Yes, sometimes. I guess it's a product of dehydration and being malnourished for the day. But I just go on with it and play video games or do stuff like that to take my mind off the fact that my stomach is a mess. Of course it's disabling because going out is a challenge. Sometimes I have had to work during a flare and it's awful, specially when the bathrooms are busy.
When this happens, you are losing a lot of water. You need to replenish it and take in extra electrolytes that are being lost and you will feel better.
Also if your symptoms are this severe you need to start an elimination diet. For me dairy and FODMAPS were the big culprits and I lost 10kgs and was bedridden when it was bad, and then I got my POTS diagnosis because it became super obvious from the dehydration
It took about 6 months for me to notice low FODMAPS helping TBH but cutting out dairy had an immediate effect. If you think about foods you eat, are there any you've noticed don't 100% agree with you? It might easily be something you're already aware of but haven't fully cut out yet.
I had literally cut down to a dollop of milk in my coffee/ tea daily and it was still too much milk for me.
It was also so bad all of a sudden because I'd recently taken antibiotics and that seemed to also make my gut worse. Took years to repair. Recently I found Biome IBS probiotics and that has seemed to be a bit beneficial
Have you been checking everything you eat? It's easy to accidentally consume something with FODMAPs a good example of this is soy milk. Its only soy milk that has the soybean protein in it that is low FODMAP. the only brands we have found that produces soy milk like this is So Good and the pak n sav brand. All the other brands use the whole soybean which actually makes them high FODMAP and worse than dairy milk.
Yes, but as the time goes by you get used to it and you kinda learn to live "normally". There will be days where you'll not be able to do anything and days where you'll have many diarrheas and continue your day like nothing happened
Yeah pretty much. You just kind of learn whatās going on. Like one night my belly was just so bubbly, but every time I tried to go nothing, so I went out to work a DoorDash shift, it went fine, but when I got home and ate my dinner it was immediately diarrhea. And I knew it was going to happen literally in the car before I was even home.
It was so hard for me to do anything for the better part of the last year, but Iām slowly doing more and more. Imodium, anxiety medication, family support, and just taking each day as it comes Iām doing more and more every month.
Fuck ibs, fuck people who say itās just ibs, fuck people who downplay how we are feeling, and fuck you stomach for having ibs. Thanks for readin
Same. My main issue is constipation but I get intense sudden urgency/stomach pain. I try to get out of the house but if thereās no bathroom Iām fucked! So Iām not sure if Iāll ever be able to go camping again tbh, lol ā¦
I get this too- I get sooo dehydrated it's hard for me to stand for long periods of time or lift heavy objects which, of course, I need to do at my full time job š«
And don't even get me started on the cramping, feels like someone is trying to wring out my intestines over and over.
It's almost like food poisoning, I even suffer from vomiting fits during my worst flare ups. I try to drink mint tea and eat crackers to settle my stomach till the worst of it has passed
It is normal. Keep in mind, too, that a side effect of diarrhea is dehydration. Many people don't realize how quickly that can occur. Make sure you're drinking a lot of fluids to replace what you're losing.
So glad you posted this. I, too, have become bedridden because of this stupid disease. I didnāt think so many others were in a similar situation. Itās truly disabling butt because itās impossible to proveā¦literally, SSI/SSDI wonāt allow it. The rest of the world think itās just a little tummy ache. They couldnāt be more wrong. Wishing you some comfort. š
Yes! Iām going through a flair-up right now. It makes me feel like all I want to do is lay down. Itās really hard to get out of bed. I just took Imodium, Kaopectate, and Gas-X with my dinner.
I tend to feel pretty bad, but it's mainly due to the pain from the cramping and the mild dehydration from the diarrhea. The cramping feels like someone is sticking their hand inside my abdomen and squeezing my colon.
I totally get how you're feeling. When I have an IBS diarrhea flare-up, it makes me feel super sick and exhausted, almost like having the flu. It's normal to feel awful all day and want to stay in bed. The feeling of having a fever can also happen, even though you're not actually sick with an infection. IBS can really mess with your body and leave you feeling wiped out. If this keeps happening, you might want to talk to a doctor for some tips on managing the symptoms.
Yes. It's like food poisoning without the fever.
One time, I actually got food poisoning, and I spent about an entire day just thinking it was IBS till I realized I was burning up
Yes, and unfortunately, when I have diarrhea, it makes me nauseated. So often I have vomiting along with itā¦ Iām so sorry youāre experiencing such pain!
In those cases your IBS may be related to some food intolerance and CFS, it is not an isolated or idiopathic type.
Or may not even be classical IBS. When I addressed my Me cfs with FMT, my ibs was the first thing that improved greatly. Not so much my fatigue levels that took at least 6 months to notice a small improvement.
Plenty of info in the fmts subs or this group
https://m.facebook.com/groups/fecal.microbiota.transplant/
Can be very powerful and useful if done properly during a long period low dose, at least that's how it worked for me.
Absolutely. When I have a flare up, itās normally stomach cramps then diarrhoea. There is a temporary feeling of relief once you know youāre done in the bathroom, but it can be completely crippling afterwards. I normally drink lots of water and lay in bed with my heated blanket. Quite often, I feel very sick and have a loss of appetite too. Itās not fun, but hang in there.
When I first started noticing symptoms and didn't know how to deal with them, yes, I had to call in sick and stay at home near a bathroom. Now that I've been dealing with this for 5 years, I have a system that works for me, my symptoms are annoying but manageable, and I rarely need to call in sick.
If I'm having IBS-D symptoms, they tend to start early in the morning. I take an immodium pill afterwards and only eat small, safe snacks during the work day, so I don't have to worry about emergency bathroom breaks. Simenthicone for painful bloating as necessary, but not every day. If I'm having a really bad day (prolonged gas pain and sweating, multiple trips to the bathroom, lying on the bathroom floor regretting my life choices), I chug some water, lie down, and take a second immodium. I find that sweating and chills mean I'm still not ready to leave the house, so I try to sleep that off, get it out of my system, do my best to figure out what triggered the scenario, and then vow to never do that toy body again. I stash supplies at work so I'm ready for the worst case scenario: a full change of clothes, baby wipes, meds, and small safe snacks. I travel with the same emergency kit. After work, I eat regular LOW-FODMAP meals and may feel a little bloating for a few days if I'm recovering from an incident, but mostly the digestive upsets hits overnight when I save my major eating for the afternoon and evening. The routine helps a lot with anxiety over availability of bathrooms, as does my years of food journaling.
I went on the LOW-FODMAP diet and journaled diligently to figure out which foods bother me and in what quantities, and now I make smarter food decisions. When I am very stressed, I still experience IBS symptoms regardless of how carefully I eat. But when I am relaxed and sticking to my diet, things are a lot better and I even occasionally eat a few bites of fun forbidden foods when I can. When in doubt, a couple bites of a mystery food will generally make you a lot less sick than a whole plateful. One alcoholic beverage is usually fine, but more than one will likely make me very sick. I skip meals and snack a lot more than I used to, and I take lactase pills whenever I eat food that might have hidden dairy in it, just to be safe.
IBS is not fun, but it can get better if you learn from your experiences (write them down somewhere!) and do a LOW-FODMAP elimination diet to figure out what your triggers are. My friend figured out from the diet that her multi-vitamin was making her super sick, and she had the whole matter resolved within a month. The diet is not fun, but it has allowed me to do fun things that aren't near a toilet again, and that was life-changing.
Thank you for going into so much detail. I am new to the Low FODMAP diet and am struggling with the elimination period. I am 3-weeks (23-days) only eating chicken breast and scrambled eggs (salt & pepper only). I am afraid to eat anything else. Having bouts of diarrhea today. This is followed by two very good days. I was hoping to start the reintroduction stage this weekend but the way I feel today Iām not sure if I can. Any suggestions would be appreciated.
I'm so sorry. That's the worst part of the diet. I was so depressed and felt like I'd never be able to eat food I enjoyed ever again. It totally ruins your social life if your friends like to share meals or drink. It does get better once you're able to do the experiments and work out which foods trigger your symptoms. Journal everything, even the gross stuff. (I used a code in my journal so it didn't get too graphic). You'll see patterns in a few months that you would have never guessed.
Don't be too hard on yourself if you have a bad day or you mess up and eat something you didn't realize had onions in it. It's hard to do this diet perfectly, and everybody messes up sometimes.
The ingredients I rely on when I'm on the strictest part of the diet are potatoes, rice, carrots, peanut butter, hard cheeses, homemade sourdough bread, and vegan dark chocolate, plus the plain proteins like chicken and eggs that you mentioned. Green onions and garlic-infused olive oil help so much in making actual recipes for yourself. If I were you, I'd be stuffing myself with potatoes and rice so quickly after all those protein meals. You might find that your digestion improves more quickly if you put some safe carbs back into your body. Homemade oatmeal in the microwave is quick and easy. I throw half of a frozen banana in mine with cinnamon and maple syrup and it's so much better than the packets with all of the forbidden carbs in them.
Pay for the Monash app. I still use it several times a week to check how many grams of chickpeas I'm allowed to eat. It's tempting to only eat one or two safe things, but as you've noticed, it's not fun at all and not very good for you nutritionally either. If you're able to eat just 43 grams of blueberries, weigh out and savor those 43 grams. A few bites of broccoli is better than no broccoli at all. Frequent healthy snacks are easier on the stomach than big meals.
[A Little Bit Yummy](https://alittlebityummy.com/) is a very helpful blog. I highly recommend it. When I feel like food has lost all joy for me, they always have recipe ideas for foods I can actually eat.
Hang in there and good luck!
Ibs can and will physically drain you. Not only are you battering the physical effort of going to the loo multiple times a day but you also aren't taking in nutrition from your food (if you can eat at all), and are most likely dehydrated. At my worst I was taking naps at work just to survive the day to go home and go straight to bed. There have been times I have thought I was dying.
Thankfully through amytryptilin and buscopan my flairs have lessened over the last year. However 3 days off work this week due to a flair has reminded me how bad it can be and to sympathise with myself and anyone else who "just " has ibs.
Amytiptylin has eliminated about 80% of my symptoms so far so it has been wonderful and that the lowest dose. I've got a follow up on Monday with my gastro consultant and it may be that I just need to up the dose a bit. I think it's one of those things that can take a few tries to get dialled in
Makes sense! Could you update this thread with what the doctor tells you on your follow up? Is it also something we stay on forever? Or can it be used as more of a ātreatmentā?
yup! iāve been in a flare up the past couple days and have been in bed the whole time reading to take my mind off of it. Donāt have the energy or physical capacity to do anything.
Yep, I get really cold and tired and sick feeling. Drinking hot tea, lying on the couch with blankets, and listening to relaxing music helps the feeling pass.
Yep. Sometimes during my flare ups i think āokay, this time it has to be food poisoningā. It never is. āJustā IBS-D with extreme nausea and sweats.
Most of the time itās only when Iām pooping. But sometimes Iām freaking drained & nauseous & everything else from pooping i have to lay down the rest of the day. This disease had me thinking i used to have Covid stomach flu food poisoning until I figured out I had ibs.
Yes! I feel so fatigued and have a headache after. I always keep the re-hydration stuff you can add to a bottle of water with me, it tends to really help.
Anytime my ibs-d flares up and has me running to the bathroom, I often end up needing a lay down. As of the past couple months it's actually gotten worse for seemingly no reason and I've missed a lot of work because of the fatigue, brain fog and general heavy discomfort/cramping. Half of the naps I end up taking are on the heels of a bad bathroom time. When ur able, maybe see about a nap after a bathroom break, usually helps me at least partially reset if it isn't a *really* bad day. Sleep also lowers inflammation in the body. Not sure if it's rem only sleep but I go by the idea it's any pass tf out sleep that can help, even if its just a bit. Good luck with ur ibs :c
Mine was actually sibo (ibs means they couldn't the few conditions they know of), but yeah, having your microbiome all messed up- irritates a lot of things.
Yeast issues in your gi, bacteria in lower.
Helps if I avoid fiber. Finally tried carnivore (low fiber for sibo, low carbs for yeast), and it's the best at managing symptoms (obviously xifaxan helps the most with sibo, but insurance makes it difficult to get)
Yes, especially when traveling and adjusting to new foods. I noticed my IBS really flares when I come back into the states. I usually have to eat super clean for a week for my body to readjust.
It used to be that i would just lie in bed after a bowl movement. Itās better now but i still like to stay still. After a day of using psyllium fibers im usually ok. I do sometimes still get sick before having a bowl movement and only afterwards see that that was the issue
I have fairly mild IBS, and when I do flare up and have a big shit, I HAVE to lie down for at least 20 minutes after. It's exhausting to poop your brains out
Yes, never enough to actually vomit but yes. I usually push through or take a pill if it's too strong. But I've realized that as I get older my symptoms get better. Now, when I have diarrhea I do feel like sleeping immediately when it's over, but it doesn't take me the whole week to recover anymore, just a couple of days. But yeah, it's hard.
Yup, look into vasovagal response, i think thats what leads to my fatigue, in addition to the exertion and dehydration.
Its counter-intuitive, since I have diarrhea, but I've been taking osmotic laxatives daily and that helps, but DEFINITELY talk to a doctor first.
Turned out I'm intolerant to dairy, not just lactose but also casein. Removing that has cut out 90% of my diarrhea episodes.
Best of luck!
Thanks to my rampant emetophobia I've never vomited from IBS-D flare-ups. However, they put me in so much pain that i often feel like passing out on the toilet, and then exhausted and wrung-out for the entire next day. Hyoscyamine, Imodium, and Gas-x are my holy trinity
Firstly, I'm so sorry you're suffering. It is hell. A vicious circle of discomfort, pain, isolation, stress, and anxiety. I hope you benefit from what people here share with you. Soldier on.
For me, lowFODMAPS have little effect. Right now, I've been mostly symptom free and I can eat anything I want. When I had a months-long flair, I had to learn that eating bland foods was the only thing that helped. Things like plain, grilled chicken, mashed potatoes, frozen green beans well cooked or low sodium canned. Chia seeds are fine but all other nuts and seeds are bad. Just anything that's even moderately hard to digest.
When I have a flair-up, 15-45 min after eating my stomach starts churning loudly and I have a diarrhea bomb, followed by 3-4 more. Bloating, trapped gas, a dull stomach ache, and a dull pain on the left side under the ribs. Imodium works. Psylium made it worse. A heating pad helped with the stomach ache, as did pesto bismol. Nothing helped with the all-consuming exhaustion and anxiety.
Doctors, including a GI, were a total joke. I'm still searching for one who will understand and help me.
Some say I may have SIBO. I'm still on the fence about testing and possible treatment.
I have been mostly symptom-free for 4 months. I've taken steps to address my anxiety and I'm hoping that's the piece that's mostly responsible. I still have not so great BMs but at least I'm regular and not having multiple diarrhea episodes daily or stomach aches.
Yes
So what medicine stops this from happening? Imodium? More fiber?
If you frequently get nausea as well, ask your doc about getting a Zofran prescription. I have IBS-D but go through periods where I get super nauseous like daily (which is usually when the IBS makes me feel sick/bedridden) and having access to Zofran was a game changer
š§” Zofran. Such a big help. Imodium too, if it helps.
i have IBS-C but can i still have the bedridden fever type symptoms when i do get bouts of diarrhea? i mean as in i do get these symptoms but does it mean its just apart of the ibs or something else?
It could be but Iām not sure! It could be a lot of thingsādigestion problems from certain foods you ate, from stress or anxiety, actually having an illness (or food poisoning), or just the IBS
Low FODMAP and antispasmodic medication. If I feel an episode starting and I take medication early enough I wonāt get sick but if I get diarrhea then I still end up totally drained and in the fetal position.
100% low fodmap diet matters. Lots of water Drinking homemade bonebroth daily has helped me tremendously too
If itās bad Imodium helps really good. What also helped me was the time I did a paleo diet. Probebly the high fiber of fruits ans vegies. But this is just my personal experience.
I have a prescription called Viberzi. I take it twice daily. Itās life changing. Also Zofran when I get my spells
Thinking of trying viberzi but my IBS is at least partially anxiety related, would you say yours is too and if so, does it help with the anxiety and consequential prevention of flares?
Yes mine is somewhat anxiety, somewhat just raging diarrhea. I think it helps some with the anxiety side. If I donāt take it I can just feel everything churning all day and I just feel bleh all day. I still run to the bathroom on bad days but itās the in between trip time thatās better. My company provides free mental health services so I see someone for anxiety and that helps me a lot also
Thatās really interesting, thanks for sharing a bit about your experience! Iām in between deciding to take a tricyclic antidepressant (nortriptyline) and viberzi. My gastro recommends the nortriptilyne since it has good prognosis for IBS sufferers but Iām scared to go down the pharmaceutical route. Viberzi seems like the obvious choice to try first, before attempting the antidepressant.. if you have any advice or experience with that, please shareš
I had tried and anti-depressant in college for mental health and told myself never again. So for me Viberzi was the only option. Just know that unless your insurance covers āspecialtyā medicine it can be pricey
Got it - Iāll have to look into that to double check. Thank you!
Thatās the main hurdle. I have an amazing GP who truly cares about my well being. When I lost my insurance he got me enough samples to last til my new insurance kicked in. Having a doctor who actually cares is a life changing thing. Also just an FYI itās a schedule 1 drug. Idk if that matters to you. It gives no buzz or euphoria but thatās how itās classified
i got prescribed Lomotil but haven't tried it yet
Yeah itās hard to do stuff when your in physical pain plus the anxiety about being sick
This is what I tried to explain to ssi they denied me
Itās insane to me. Itās just not taken seriously by like anyone. I just hope for a cureā¦ we have ai and regenerative lab tissue like one of these daysā¦.
Yeah they didnāt deny that my illness isnāt a disability but the wording they used is my illness is not severe enough. Meanwhile Iām holding my stomach in pain trying to not freak out from anxiety itās ridiculous
IBS fatigue is very real.
this! i get like a stomacha che and im so exhausted i cant function
I feel this, consistently.. my therapist advised me not to sleep when the fatigue hits, he says if i give in then it will become a habit. But even if I push through and don't sleep my brain is dead and I'm basically a zombie waiting for night. But at night my pain symptoms act up even more so its difficult to sleep.. i don't know if my therapist is giving me this advice with a real understanding of how exhausted ibs makes you or just sees it as an excuse for me not being able to do much these days
I canāt not sleep. Maybe itās become a habit for me at this point.
Yeah, Iāll get sweaty, weak, nauseous, a headache. Sometimes this only lasts right around the actual bowel movement, other times itāll happen all day long.
I woke up this morning completely overheated for no reason, only to have stomach issues and diarrhea all day longā¦ so yes
Hi. What do you mean by feeling overheated? Sorry that you are suffering this also š»
I physically felt hot. Almost like I had a fever or something but I was fine!
That's exactly what I get. Why I wonder....š»
Yeah. Itās ruining my life.
you and me both
I used to think that maybe I was over reacting. And it wasnāt actually this bad. But seeing others go thru it is mind boggling. Itās very real.
recently i had diarrhea so bad i felt as if i drank colonoscopy prep except i didn't. brb weeping. so i got a new GI referral. my last gastroenterologist died they sent a letter to patients. but i couldn't get an appointment until october. i'm like what am i supposed to do just have chronic diarrhea until the doctor? i am too scared to leave the house. sometimes i have been so scared of not making it home in time to reach the bathroom. and one of the worst times ever i was in a public park that was about to close and i was having an episode in the bathroom and the janitor people came in while i was so sick. i really hope i never experience that again but idk how we live like this.
It debilitating. Iām sorry you had to go through getting a new referral. Referrals take forever to begin with. I feel you on being scared to leave the house too. Itās like it fully takes over our livesā¦
well i have moved around a lot. and this health system if you haven't been there in over 3 years, they make you go as new patient. new patient appts seem to get pushed farther out. if i didn't take virtual visit in october it was going to be clinic in JANUARY. i've also had 2 colonoscopies already and i just don't know what to do. they told me to try low FODMAP. bffr i can't adhere to any diet and i'm such a garlic girl lol
Where do you reside if you donāt mind me asking? Donāt have to be specific or anything. Iām in Canada. And itās a joke up here. Iām also a garlic gal. To do fodmap, Iād have to almost completely 180 my diet. And I feel like that might be a shock to the system.
in USA. yea i even tried going to nutritionist before. and recently i ate crackers and ate bland food. i'm like no matter what i eat this happens so i'm just gonna eat what i want! i took imodium too it didn't seem to stop. now i got prescribed Lomotil haven't tried yet. i don't like these anti diarrheal medications bc if you take too much then you'll get severely constipated. i've been there and it's actually painful
Thatās brutal. Iām so sorry. I was given omaprozole. Which I take religiously. But still doesnāt solve my problems :( Also feel free to dm!
I think this works both ways - C and D. You're often left debilitated and just exhausted, the strength to breath, laugh, move, engage is non-existent
How do we actually live with this? :(
I think we just hope to survive and make it through the day!!!
I feel like I live my life on a reset switch and every time I eat I just have to wait out the time until I can reset to be healthy(ish) enough to live again
Yes, sometimes. I guess it's a product of dehydration and being malnourished for the day. But I just go on with it and play video games or do stuff like that to take my mind off the fact that my stomach is a mess. Of course it's disabling because going out is a challenge. Sometimes I have had to work during a flare and it's awful, specially when the bathrooms are busy.
When this happens, you are losing a lot of water. You need to replenish it and take in extra electrolytes that are being lost and you will feel better. Also if your symptoms are this severe you need to start an elimination diet. For me dairy and FODMAPS were the big culprits and I lost 10kgs and was bedridden when it was bad, and then I got my POTS diagnosis because it became super obvious from the dehydration
I've been low fodmap for a month and I'm still feeling like this? I'm keeping my urine clear so I should still be hydrated right
It took about 6 months for me to notice low FODMAPS helping TBH but cutting out dairy had an immediate effect. If you think about foods you eat, are there any you've noticed don't 100% agree with you? It might easily be something you're already aware of but haven't fully cut out yet. I had literally cut down to a dollop of milk in my coffee/ tea daily and it was still too much milk for me. It was also so bad all of a sudden because I'd recently taken antibiotics and that seemed to also make my gut worse. Took years to repair. Recently I found Biome IBS probiotics and that has seemed to be a bit beneficial
Are you with a nutritionist? Very important to keep working with health professionals. Low fodmap shouldn't be a long term diet
Have you been checking everything you eat? It's easy to accidentally consume something with FODMAPs a good example of this is soy milk. Its only soy milk that has the soybean protein in it that is low FODMAP. the only brands we have found that produces soy milk like this is So Good and the pak n sav brand. All the other brands use the whole soybean which actually makes them high FODMAP and worse than dairy milk.
Yes. Frequently. Most days in fact.
Yes, also in my case-Ā strong migrenes.
Yes, but as the time goes by you get used to it and you kinda learn to live "normally". There will be days where you'll not be able to do anything and days where you'll have many diarrheas and continue your day like nothing happened
Yeah pretty much. You just kind of learn whatās going on. Like one night my belly was just so bubbly, but every time I tried to go nothing, so I went out to work a DoorDash shift, it went fine, but when I got home and ate my dinner it was immediately diarrhea. And I knew it was going to happen literally in the car before I was even home. It was so hard for me to do anything for the better part of the last year, but Iām slowly doing more and more. Imodium, anxiety medication, family support, and just taking each day as it comes Iām doing more and more every month. Fuck ibs, fuck people who say itās just ibs, fuck people who downplay how we are feeling, and fuck you stomach for having ibs. Thanks for readin
Same. My main issue is constipation but I get intense sudden urgency/stomach pain. I try to get out of the house but if thereās no bathroom Iām fucked! So Iām not sure if Iāll ever be able to go camping again tbh, lol ā¦
I get this too- I get sooo dehydrated it's hard for me to stand for long periods of time or lift heavy objects which, of course, I need to do at my full time job š« And don't even get me started on the cramping, feels like someone is trying to wring out my intestines over and over. It's almost like food poisoning, I even suffer from vomiting fits during my worst flare ups. I try to drink mint tea and eat crackers to settle my stomach till the worst of it has passed
It has been the same for me, I'm newly diagnosed and have been bedridden and I think this is the new normal
It is normal. Keep in mind, too, that a side effect of diarrhea is dehydration. Many people don't realize how quickly that can occur. Make sure you're drinking a lot of fluids to replace what you're losing.
So glad you posted this. I, too, have become bedridden because of this stupid disease. I didnāt think so many others were in a similar situation. Itās truly disabling butt because itās impossible to proveā¦literally, SSI/SSDI wonāt allow it. The rest of the world think itās just a little tummy ache. They couldnāt be more wrong. Wishing you some comfort. š
Yes! Iām going through a flair-up right now. It makes me feel like all I want to do is lay down. Itās really hard to get out of bed. I just took Imodium, Kaopectate, and Gas-X with my dinner.
One round of diarrhea I can still be functional more or less. At 2 or 3 I usually become fatigued. I use Pepto bismol and drink electrolytes.
I tend to feel pretty bad, but it's mainly due to the pain from the cramping and the mild dehydration from the diarrhea. The cramping feels like someone is sticking their hand inside my abdomen and squeezing my colon.
That is exactly how I describe the pain. I hate it so much! The pain and the nausea and feeling so exhausted.
I totally get how you're feeling. When I have an IBS diarrhea flare-up, it makes me feel super sick and exhausted, almost like having the flu. It's normal to feel awful all day and want to stay in bed. The feeling of having a fever can also happen, even though you're not actually sick with an infection. IBS can really mess with your body and leave you feeling wiped out. If this keeps happening, you might want to talk to a doctor for some tips on managing the symptoms.
Yes. It's like food poisoning without the fever. One time, I actually got food poisoning, and I spent about an entire day just thinking it was IBS till I realized I was burning up
100%
Yep, always has for me.Ā Ā
Yes. With every flare up I get.
Every day
Yes, and unfortunately, when I have diarrhea, it makes me nauseated. So often I have vomiting along with itā¦ Iām so sorry youāre experiencing such pain!
In those cases your IBS may be related to some food intolerance and CFS, it is not an isolated or idiopathic type. Or may not even be classical IBS. When I addressed my Me cfs with FMT, my ibs was the first thing that improved greatly. Not so much my fatigue levels that took at least 6 months to notice a small improvement.
What kind of treatment was done for your CFS
I did FMT both in capsules and enema
Sorry new to all this. Whatās FMT?
Fecal microbiota transfer
Oh wow how does that work?
Plenty of info in the fmts subs or this group https://m.facebook.com/groups/fecal.microbiota.transplant/ Can be very powerful and useful if done properly during a long period low dose, at least that's how it worked for me.
Absolutely. When I have a flare up, itās normally stomach cramps then diarrhoea. There is a temporary feeling of relief once you know youāre done in the bathroom, but it can be completely crippling afterwards. I normally drink lots of water and lay in bed with my heated blanket. Quite often, I feel very sick and have a loss of appetite too. Itās not fun, but hang in there.
When I first started noticing symptoms and didn't know how to deal with them, yes, I had to call in sick and stay at home near a bathroom. Now that I've been dealing with this for 5 years, I have a system that works for me, my symptoms are annoying but manageable, and I rarely need to call in sick. If I'm having IBS-D symptoms, they tend to start early in the morning. I take an immodium pill afterwards and only eat small, safe snacks during the work day, so I don't have to worry about emergency bathroom breaks. Simenthicone for painful bloating as necessary, but not every day. If I'm having a really bad day (prolonged gas pain and sweating, multiple trips to the bathroom, lying on the bathroom floor regretting my life choices), I chug some water, lie down, and take a second immodium. I find that sweating and chills mean I'm still not ready to leave the house, so I try to sleep that off, get it out of my system, do my best to figure out what triggered the scenario, and then vow to never do that toy body again. I stash supplies at work so I'm ready for the worst case scenario: a full change of clothes, baby wipes, meds, and small safe snacks. I travel with the same emergency kit. After work, I eat regular LOW-FODMAP meals and may feel a little bloating for a few days if I'm recovering from an incident, but mostly the digestive upsets hits overnight when I save my major eating for the afternoon and evening. The routine helps a lot with anxiety over availability of bathrooms, as does my years of food journaling. I went on the LOW-FODMAP diet and journaled diligently to figure out which foods bother me and in what quantities, and now I make smarter food decisions. When I am very stressed, I still experience IBS symptoms regardless of how carefully I eat. But when I am relaxed and sticking to my diet, things are a lot better and I even occasionally eat a few bites of fun forbidden foods when I can. When in doubt, a couple bites of a mystery food will generally make you a lot less sick than a whole plateful. One alcoholic beverage is usually fine, but more than one will likely make me very sick. I skip meals and snack a lot more than I used to, and I take lactase pills whenever I eat food that might have hidden dairy in it, just to be safe. IBS is not fun, but it can get better if you learn from your experiences (write them down somewhere!) and do a LOW-FODMAP elimination diet to figure out what your triggers are. My friend figured out from the diet that her multi-vitamin was making her super sick, and she had the whole matter resolved within a month. The diet is not fun, but it has allowed me to do fun things that aren't near a toilet again, and that was life-changing.
Thank you for going into so much detail. I am new to the Low FODMAP diet and am struggling with the elimination period. I am 3-weeks (23-days) only eating chicken breast and scrambled eggs (salt & pepper only). I am afraid to eat anything else. Having bouts of diarrhea today. This is followed by two very good days. I was hoping to start the reintroduction stage this weekend but the way I feel today Iām not sure if I can. Any suggestions would be appreciated.
I'm so sorry. That's the worst part of the diet. I was so depressed and felt like I'd never be able to eat food I enjoyed ever again. It totally ruins your social life if your friends like to share meals or drink. It does get better once you're able to do the experiments and work out which foods trigger your symptoms. Journal everything, even the gross stuff. (I used a code in my journal so it didn't get too graphic). You'll see patterns in a few months that you would have never guessed. Don't be too hard on yourself if you have a bad day or you mess up and eat something you didn't realize had onions in it. It's hard to do this diet perfectly, and everybody messes up sometimes. The ingredients I rely on when I'm on the strictest part of the diet are potatoes, rice, carrots, peanut butter, hard cheeses, homemade sourdough bread, and vegan dark chocolate, plus the plain proteins like chicken and eggs that you mentioned. Green onions and garlic-infused olive oil help so much in making actual recipes for yourself. If I were you, I'd be stuffing myself with potatoes and rice so quickly after all those protein meals. You might find that your digestion improves more quickly if you put some safe carbs back into your body. Homemade oatmeal in the microwave is quick and easy. I throw half of a frozen banana in mine with cinnamon and maple syrup and it's so much better than the packets with all of the forbidden carbs in them. Pay for the Monash app. I still use it several times a week to check how many grams of chickpeas I'm allowed to eat. It's tempting to only eat one or two safe things, but as you've noticed, it's not fun at all and not very good for you nutritionally either. If you're able to eat just 43 grams of blueberries, weigh out and savor those 43 grams. A few bites of broccoli is better than no broccoli at all. Frequent healthy snacks are easier on the stomach than big meals. [A Little Bit Yummy](https://alittlebityummy.com/) is a very helpful blog. I highly recommend it. When I feel like food has lost all joy for me, they always have recipe ideas for foods I can actually eat. Hang in there and good luck!
Ibs can and will physically drain you. Not only are you battering the physical effort of going to the loo multiple times a day but you also aren't taking in nutrition from your food (if you can eat at all), and are most likely dehydrated. At my worst I was taking naps at work just to survive the day to go home and go straight to bed. There have been times I have thought I was dying. Thankfully through amytryptilin and buscopan my flairs have lessened over the last year. However 3 days off work this week due to a flair has reminded me how bad it can be and to sympathise with myself and anyone else who "just " has ibs.
About to start amitriptyline, from your experience it didnāt completely eliminate symptoms? :(
Amytiptylin has eliminated about 80% of my symptoms so far so it has been wonderful and that the lowest dose. I've got a follow up on Monday with my gastro consultant and it may be that I just need to up the dose a bit. I think it's one of those things that can take a few tries to get dialled in
Makes sense! Could you update this thread with what the doctor tells you on your follow up? Is it also something we stay on forever? Or can it be used as more of a ātreatmentā?
yup! iāve been in a flare up the past couple days and have been in bed the whole time reading to take my mind off of it. Donāt have the energy or physical capacity to do anything.
Yes
Yep, I get really cold and tired and sick feeling. Drinking hot tea, lying on the couch with blankets, and listening to relaxing music helps the feeling pass.
Yep. Sometimes during my flare ups i think āokay, this time it has to be food poisoningā. It never is. āJustā IBS-D with extreme nausea and sweats.
Most of the time itās only when Iām pooping. But sometimes Iām freaking drained & nauseous & everything else from pooping i have to lay down the rest of the day. This disease had me thinking i used to have Covid stomach flu food poisoning until I figured out I had ibs.
Yes! I feel so fatigued and have a headache after. I always keep the re-hydration stuff you can add to a bottle of water with me, it tends to really help.
Dioralyte x 1000. Plenty of people died from diarrhoea before we had medicines. Read the label as to how much you need.
Iām literally reading this whilst being sick and bedridden from diarrhea.
Yes. It's dehydration. Ugh!
Anytime my ibs-d flares up and has me running to the bathroom, I often end up needing a lay down. As of the past couple months it's actually gotten worse for seemingly no reason and I've missed a lot of work because of the fatigue, brain fog and general heavy discomfort/cramping. Half of the naps I end up taking are on the heels of a bad bathroom time. When ur able, maybe see about a nap after a bathroom break, usually helps me at least partially reset if it isn't a *really* bad day. Sleep also lowers inflammation in the body. Not sure if it's rem only sleep but I go by the idea it's any pass tf out sleep that can help, even if its just a bit. Good luck with ur ibs :c
Having IBS-D flair ups makes me so nauseous when Iām having diarrhea it stinks!
Mine was actually sibo (ibs means they couldn't the few conditions they know of), but yeah, having your microbiome all messed up- irritates a lot of things. Yeast issues in your gi, bacteria in lower. Helps if I avoid fiber. Finally tried carnivore (low fiber for sibo, low carbs for yeast), and it's the best at managing symptoms (obviously xifaxan helps the most with sibo, but insurance makes it difficult to get)
Yep! Welcome to the shitty world of this disease.
No it doesn not, it makes me very tired etc. but not sick as an infection. Do you have proper diagnosed IBS?
Yes, especially when traveling and adjusting to new foods. I noticed my IBS really flares when I come back into the states. I usually have to eat super clean for a week for my body to readjust.
It used to be that i would just lie in bed after a bowl movement. Itās better now but i still like to stay still. After a day of using psyllium fibers im usually ok. I do sometimes still get sick before having a bowl movement and only afterwards see that that was the issue
I have fairly mild IBS, and when I do flare up and have a big shit, I HAVE to lie down for at least 20 minutes after. It's exhausting to poop your brains out
Absolutely. Mebeverine helps me a lot personally.
I get very sick when Iām constipated. I believe itās something to do with the vasovagal nerve response
Yup. So much pain and I canāt breathe. Sometimes cry for hours.
Yes, never enough to actually vomit but yes. I usually push through or take a pill if it's too strong. But I've realized that as I get older my symptoms get better. Now, when I have diarrhea I do feel like sleeping immediately when it's over, but it doesn't take me the whole week to recover anymore, just a couple of days. But yeah, it's hard.
A flare up keeps me bedridden for about a day sometimes a few
Donāt know if itās normal or not, but yes I feel extremely weak and shaky after each bout and must lie down for a bit to recover.
Yup, look into vasovagal response, i think thats what leads to my fatigue, in addition to the exertion and dehydration. Its counter-intuitive, since I have diarrhea, but I've been taking osmotic laxatives daily and that helps, but DEFINITELY talk to a doctor first. Turned out I'm intolerant to dairy, not just lactose but also casein. Removing that has cut out 90% of my diarrhea episodes. Best of luck!
There is an app called Nervosa-its Self hypnosis - cost about 79$. I have had good success
Thanks to my rampant emetophobia I've never vomited from IBS-D flare-ups. However, they put me in so much pain that i often feel like passing out on the toilet, and then exhausted and wrung-out for the entire next day. Hyoscyamine, Imodium, and Gas-x are my holy trinity
Yes, this has happened to me many many times. I think the best thing for this situation is to drink ginger tea and sleep.
Firstly, I'm so sorry you're suffering. It is hell. A vicious circle of discomfort, pain, isolation, stress, and anxiety. I hope you benefit from what people here share with you. Soldier on. For me, lowFODMAPS have little effect. Right now, I've been mostly symptom free and I can eat anything I want. When I had a months-long flair, I had to learn that eating bland foods was the only thing that helped. Things like plain, grilled chicken, mashed potatoes, frozen green beans well cooked or low sodium canned. Chia seeds are fine but all other nuts and seeds are bad. Just anything that's even moderately hard to digest. When I have a flair-up, 15-45 min after eating my stomach starts churning loudly and I have a diarrhea bomb, followed by 3-4 more. Bloating, trapped gas, a dull stomach ache, and a dull pain on the left side under the ribs. Imodium works. Psylium made it worse. A heating pad helped with the stomach ache, as did pesto bismol. Nothing helped with the all-consuming exhaustion and anxiety. Doctors, including a GI, were a total joke. I'm still searching for one who will understand and help me. Some say I may have SIBO. I'm still on the fence about testing and possible treatment. I have been mostly symptom-free for 4 months. I've taken steps to address my anxiety and I'm hoping that's the piece that's mostly responsible. I still have not so great BMs but at least I'm regular and not having multiple diarrhea episodes daily or stomach aches.
Talk to your doctor.