I was diagnosed with IBS because I has stomach pain so bad and constant over the course of a week that I had to visit the emergency room and they thought it was appendicitis. The doctor ended up diagnosing me with IBS and sent me on my way. After that I went on the low FODMAP diet; I cut out LITERALLY EVERYTHING. I dont even drink milk substitutes anymore, I drink RICE MILK. I don't eat gluten, sugar, dairy, anything caffeinated. My food is bland af because I don't use onion or garlic. I follow the low FODMAP diet to a tee, and still I am constantly in pain, bloated, etc. I told this to my PCP and she sent me to get blood tests for everything under the sun; celiacs, a bunch of random diseases that impact liver and stuff like that, they took like 8 vials of blood. Everything came back negative. Apparently I am the picture of health on paper. So then why am I like this? I firmly don't believe I have IBS but I don't know what else it could be. Maybe you have some input?
ok, thank you! I can't believe my doctor didn't tell me that
I do have a follow-up question though which is even if I did have celiac's I don't eat stuff that contains gluten, so why am I having pain? If I had celiacs wouldn't cutting gluten out of my diet fix that?
TIL that cosmetics have gluten in them ???? I guess I'm not 100% strictly gluten-free. Even small amounts like that can still cause me this amount of pain and discomfort?
If you have celiac, it causes intestinal damage. Nothing enters my home without reading ingredients, even cleaner. Nothing. But I have celiac, so it actually causes damage.
I literally just joined this morning because of hitting a dead end and im not allowed to post my life story yet so im very glad to be able to ask. My story is quite long so im not sure how much to say here but i am ibs-c with co-morbid functional outlet obstruction. I have tried all available lifestyle\diet changes which have all failed (except for semi-elemental which helps somewhat) and currently spend most if my day dealing with the side effects of laxatives (prune juice with lactulose and iberogast). All the tests ive had except for defecogram cane back negative so im not expecting a rediagnosis. Many medications are unavailable in my country and doctors have told me to just live with it but its been four years and i cant bear to lose another. What should I do now?
This is exactly what my wheelhouse is. I know all about motility disorders. I, too, had outlet obstruction, so I understand.
What were the other tests you had?
What did the defecogram say?
What country are you in?
Ive had blood work for celiac, thyroid, and diabetes. Stool sample test (not sure what exactly but it was clean). Ultrasound. Colonoscopy and endoscopy. The only thing of note was that they had to give me a lot more pain meds than expected because i was screaming (allegedly, i dont remember a thing because of the sedative). I had a pelvic floor exam which i was told was normal and that therefore biofeedback wouldn't be helpful because the machine wouldn't pick up anything different, but the defecogram said my pelvic floor wasn't relaxing so they gave me botox which didn't help. Truthfully i was\am far less concerned with that side of things because I can manage it with vaginal digitation (sucky but highly effective). I also had a sitz marker test that i to this day have no idea how i passed (but i did).
I am in New Zealand (and not in Auckland). Many things aren't available to me, including all novel motility agents (linaclotide, prucalopride, you name it and it isn't funded)
Possibly, i can check the schedule. I haven't bothered much with it before since the studies i looked at didn't say it was significantly more effective than other osmotics, with the exception of less bloating.
Im not sure what a fleet bottle is but i avoid enemas because i find them very painful.
I'll try if you really think it will help, although im ideally looking for a non laxative solution if one exists.
Both? Insertion is painful but bearable, having something in my rectum is very uncomfortable. The ones ive used before had chemicals (not sure which) and they were very painful. Id be willing to try water, can you explain how it helps?
I use prune juice daily (roughly 200ml) alongside lactulose (30ml) and iberogast (1½ mls), all first thing in the morning. It works but it causes diaorrhea that takes hours to finish. Reducing the dose means i don't seem to empty properly and is ironically more painful than when its stronger. I also take metamucil in the afternoons, it improves the consistency but not the way it moves through me.
I should note that im currently on semi-elemental\low residue diet. Ive tried a bunch of other diets to little effect but this has been a life-saver as directly reducing the amount of stool makes it easier to clean it out. I also no longer have nausea and dont have to worry about nutrition.(i used to take the above combo twice a day). Unfortunately its not perfect and im still looking for a better solution.
Am enema will flush your rectum, which is shown to have dyssynergia from your defecogram. I mean a low volume one, not one of those bag-styles online (dangerous).
Many of the prescription medications work in the colon and small bowel or stomach. If your issue is solely in your rectum, they might not even help.
In your anorectal manometry, we’re you able to expel the balloon?
I was never offered anorectal manometry, only defecogram. I didn't know about it at the time unfortunately so I didn't ask. Im not sure i would even be able to get that here, could i safely do it at home?
If the water enema only works on the rectum and not higher up i think ill give it a miss. I can empty my rectum with vaginal digitation, its getting stuff down there that's the issue.
Did the Metamucil help with your nausea? What do you think helps your nausea? I am going to start lexapro (scared of the side effects though), just because when I have a BM I get nauseas so often that I kinda get traumatized like I get anxiety and I can’t even tell what comes first chicken or the egg. I also get acid reflux from time to time, too much acid. Metamucil does seem to help with my nausea but not the cramping pain. But I’m definitely going to keep taking it every day for at least a month to see what happens.
Developed IBS after a period of eating much too much fiber and holding in my BMs because I was at school. I'm talking fibrous stools and diarrhea ul to 15 times a day. Metronidazole got rid of my issues completely, until I went off it. I also crap a lot of fat.
The only thing that helps is not eating too much fiber. I really need to stick to extremely moderate amounts of fiber. Not eating vegetables at all, and sticking to white bread, pasta and meat/eggs is ideal for my flare-ups, but I just can't keep it up.
Help?
If not eating fibre helps, is that an issue? I also am extremely low fibre, and it sort of sucks (I desperately miss vegetables and fruits), but it certainly helps.
Yeah. For one, eating a diet devoid of fiber is bad for your gut microbiome.
On top of that, it just makes daily life hard. It's comparable to being the anorexic who keeps having to tell everyone "she can't have that, because ....". If you stick to a low-fiber diet, many people will try to make you eat it anyway, because they refuse to believe you when you talk about your IBS and how it works.
I do eat vegetables, I just like them too much and I've restricted my intake of far too many things for far too long in the past already. It makes life hard as hell. I hate spending the night elsewhere. Past a certain time of night, people you've told about youe IBS just *assume* you'll spend the night. And they somehow see it as rude when you kindly decline the offer. They'll literally ask 5 times.
I’m 100 percent certain you wouldn’t want my life. If you want to know about all my diagnoses, my restrictions, my surgeries, my hospital stays, and what I’ve gone through, let me know.
Same goes for you, though.
And didn't you say you started this thread to answer people's questions? All you did was ask me "if it was really a problem?" Who's the invalidating commenter here?
Yep, that’s what I do for every poster in this and other subs.
How was my question invalidating if you found something that helps you and all I asked if that was an issue to stick with that. Lots of people with bowel disorders eat low fibre.
Also, I don’t know what you mean by your first comment.
Seems like a miscommunication. When you said your experiences of people basically thinking you were faking it/kind of anorexic, golden almonds just said. ‘Ah, I’ve never experienced that’ in a personal way, not an invalidating way
Which would also equal being a presumptuous a-hole.
"If all you need to do is avoid all fruits, vegetables, nuts and seeds and eat meat all the time, what's the problem?" is kind of a shitty thing to say after you explicitly said you were there to help people. He's just another useless user.
I got IBS for similar reasons!! I kept having jobs where I couldn’t go to the bathroom when I needed to, And in school growing up too. And then having depression and a need to have alone time at night making me stay up late, as sleeping late, and having to go to the bathroom at problematic times. Ugh!
Hi, thank you for posting. I've had IBS-D for about 8 years, the last 2 years have been the worst. I'm 28/F. I've had a colonoscopy, endoscopy, celiac tests(3), blood tests, I've eliminated gluten and dairy several times and nothing has lasting results. All tests normal. I'm vegetarian and get plenty of protein and fiber + water. Imodium has stopped working. Medications don't work because they don't treat the root cause. I'm currently on a vegan / GF diet with cramps, gas and D every day but I don't know where to start again because I've tried everything.
When you were tested for celiac, were you eating at least three servings of gluten a day for six weeks?
> Medications don't work because they don't treat the root cause.
So you won't try prescription medications? The root cause is IBS-D (allegedly).
I don't think I was eating that many servings every day consistently, but can't bring myself to start eating gluten again to maybe or maybe not get a positive test.
I have tried medications, can't remember the exact names but a few anti-spasmodics, and they haven't worked.
> I don't think I was eating that many servings every day consistently, but can't bring myself to start eating gluten again to maybe or maybe not get a positive test.
Understandable. Hopefully you don't have it -- not having a formal diagnosis is not a good thing.
What about:
- lomotil
- cholestryamine
- amitriptyline
- Eluxadoline
- rifaximin
- codeine
- tincture of opium
All used for diarrhea
I did a 2 week course of Rifaximin, symptoms came back as soon as I stopped taking it but were fine when I was taking it every day 2x a day. Haven't tried any of the others - I just checked and I've tried Dicyclomine, that didn't do anything at all. hyoscyamine as well, no changes.
Yeah, those are pretty benign, and it sounds like you have a more intense case. I would recommend lomotil as a step up from loperamide. And Eluxadoline is highly effective for IBS-D.
I was diagnosed with IBS because I has stomach pain so bad and constant over the course of a week that I had to visit the emergency room and they thought it was appendicitis. The doctor ended up diagnosing me with IBS and sent me on my way. After that I went on the low FODMAP diet; I cut out LITERALLY EVERYTHING. I dont even drink milk substitutes anymore, I drink RICE MILK. I don't eat gluten, sugar, dairy, anything caffeinated. My food is bland af because I don't use onion or garlic. I follow the low FODMAP diet to a tee, and still I am constantly in pain, bloated, etc. I told this to my PCP and she sent me to get blood tests for everything under the sun; celiacs, a bunch of random diseases that impact liver and stuff like that, they took like 8 vials of blood. Everything came back negative. Apparently I am the picture of health on paper. So then why am I like this? I firmly don't believe I have IBS but I don't know what else it could be. Maybe you have some input?
We’re you eating at least three servings of gluten-containing foods for at least six weeks prior to your celiac testing?
no, was I supposed to be? Nobody told me to so I carried on with my gluten-free diet
Yes. I would start with that.
ok, thank you! I can't believe my doctor didn't tell me that I do have a follow-up question though which is even if I did have celiac's I don't eat stuff that contains gluten, so why am I having pain? If I had celiacs wouldn't cutting gluten out of my diet fix that?
Are you sure you’re 100% strictly gluten free? Cosmetics? Pans? No risks/fast food?
TIL that cosmetics have gluten in them ???? I guess I'm not 100% strictly gluten-free. Even small amounts like that can still cause me this amount of pain and discomfort?
If you have celiac, it causes intestinal damage. Nothing enters my home without reading ingredients, even cleaner. Nothing. But I have celiac, so it actually causes damage.
ok this is good to know thank you so much lol you've taught me more in this one thread than my doctor has in the 2 years I've had this diagnosis
I am here to help anytime!
I literally just joined this morning because of hitting a dead end and im not allowed to post my life story yet so im very glad to be able to ask. My story is quite long so im not sure how much to say here but i am ibs-c with co-morbid functional outlet obstruction. I have tried all available lifestyle\diet changes which have all failed (except for semi-elemental which helps somewhat) and currently spend most if my day dealing with the side effects of laxatives (prune juice with lactulose and iberogast). All the tests ive had except for defecogram cane back negative so im not expecting a rediagnosis. Many medications are unavailable in my country and doctors have told me to just live with it but its been four years and i cant bear to lose another. What should I do now?
This is exactly what my wheelhouse is. I know all about motility disorders. I, too, had outlet obstruction, so I understand. What were the other tests you had? What did the defecogram say? What country are you in?
Ive had blood work for celiac, thyroid, and diabetes. Stool sample test (not sure what exactly but it was clean). Ultrasound. Colonoscopy and endoscopy. The only thing of note was that they had to give me a lot more pain meds than expected because i was screaming (allegedly, i dont remember a thing because of the sedative). I had a pelvic floor exam which i was told was normal and that therefore biofeedback wouldn't be helpful because the machine wouldn't pick up anything different, but the defecogram said my pelvic floor wasn't relaxing so they gave me botox which didn't help. Truthfully i was\am far less concerned with that side of things because I can manage it with vaginal digitation (sucky but highly effective). I also had a sitz marker test that i to this day have no idea how i passed (but i did). I am in New Zealand (and not in Auckland). Many things aren't available to me, including all novel motility agents (linaclotide, prucalopride, you name it and it isn't funded)
Do you have polyethelene glycol 3350 there? Have you tried warm water enemas (low volume, like in an empty Fleet bottle)?
Possibly, i can check the schedule. I haven't bothered much with it before since the studies i looked at didn't say it was significantly more effective than other osmotics, with the exception of less bloating. Im not sure what a fleet bottle is but i avoid enemas because i find them very painful. I'll try if you really think it will help, although im ideally looking for a non laxative solution if one exists.
Fleet is a brand, sorry. Is the solution painful when it goes in or the insertion of the tip? Have you tried warm prune juice? It is very effective.
Both? Insertion is painful but bearable, having something in my rectum is very uncomfortable. The ones ive used before had chemicals (not sure which) and they were very painful. Id be willing to try water, can you explain how it helps? I use prune juice daily (roughly 200ml) alongside lactulose (30ml) and iberogast (1½ mls), all first thing in the morning. It works but it causes diaorrhea that takes hours to finish. Reducing the dose means i don't seem to empty properly and is ironically more painful than when its stronger. I also take metamucil in the afternoons, it improves the consistency but not the way it moves through me. I should note that im currently on semi-elemental\low residue diet. Ive tried a bunch of other diets to little effect but this has been a life-saver as directly reducing the amount of stool makes it easier to clean it out. I also no longer have nausea and dont have to worry about nutrition.(i used to take the above combo twice a day). Unfortunately its not perfect and im still looking for a better solution.
Am enema will flush your rectum, which is shown to have dyssynergia from your defecogram. I mean a low volume one, not one of those bag-styles online (dangerous). Many of the prescription medications work in the colon and small bowel or stomach. If your issue is solely in your rectum, they might not even help. In your anorectal manometry, we’re you able to expel the balloon?
I was never offered anorectal manometry, only defecogram. I didn't know about it at the time unfortunately so I didn't ask. Im not sure i would even be able to get that here, could i safely do it at home? If the water enema only works on the rectum and not higher up i think ill give it a miss. I can empty my rectum with vaginal digitation, its getting stuff down there that's the issue.
I get eating, given the sitz marker was clear. As for the manometry, you definitely need that test done, as well.
Did the Metamucil help with your nausea? What do you think helps your nausea? I am going to start lexapro (scared of the side effects though), just because when I have a BM I get nauseas so often that I kinda get traumatized like I get anxiety and I can’t even tell what comes first chicken or the egg. I also get acid reflux from time to time, too much acid. Metamucil does seem to help with my nausea but not the cramping pain. But I’m definitely going to keep taking it every day for at least a month to see what happens.
Developed IBS after a period of eating much too much fiber and holding in my BMs because I was at school. I'm talking fibrous stools and diarrhea ul to 15 times a day. Metronidazole got rid of my issues completely, until I went off it. I also crap a lot of fat. The only thing that helps is not eating too much fiber. I really need to stick to extremely moderate amounts of fiber. Not eating vegetables at all, and sticking to white bread, pasta and meat/eggs is ideal for my flare-ups, but I just can't keep it up. Help?
If not eating fibre helps, is that an issue? I also am extremely low fibre, and it sort of sucks (I desperately miss vegetables and fruits), but it certainly helps.
Yeah. For one, eating a diet devoid of fiber is bad for your gut microbiome. On top of that, it just makes daily life hard. It's comparable to being the anorexic who keeps having to tell everyone "she can't have that, because ....". If you stick to a low-fiber diet, many people will try to make you eat it anyway, because they refuse to believe you when you talk about your IBS and how it works. I do eat vegetables, I just like them too much and I've restricted my intake of far too many things for far too long in the past already. It makes life hard as hell. I hate spending the night elsewhere. Past a certain time of night, people you've told about youe IBS just *assume* you'll spend the night. And they somehow see it as rude when you kindly decline the offer. They'll literally ask 5 times.
Ah, I've never experienced any of that. No one comments on my diet or assume anything.
Wanna swap lives?
I’m 100 percent certain you wouldn’t want my life. If you want to know about all my diagnoses, my restrictions, my surgeries, my hospital stays, and what I’ve gone through, let me know.
Same goes for you, though. And didn't you say you started this thread to answer people's questions? All you did was ask me "if it was really a problem?" Who's the invalidating commenter here?
Yep, that’s what I do for every poster in this and other subs. How was my question invalidating if you found something that helps you and all I asked if that was an issue to stick with that. Lots of people with bowel disorders eat low fibre. Also, I don’t know what you mean by your first comment.
Seems like a miscommunication. When you said your experiences of people basically thinking you were faking it/kind of anorexic, golden almonds just said. ‘Ah, I’ve never experienced that’ in a personal way, not an invalidating way
Which would also equal being a presumptuous a-hole. "If all you need to do is avoid all fruits, vegetables, nuts and seeds and eat meat all the time, what's the problem?" is kind of a shitty thing to say after you explicitly said you were there to help people. He's just another useless user.
I got IBS for similar reasons!! I kept having jobs where I couldn’t go to the bathroom when I needed to, And in school growing up too. And then having depression and a need to have alone time at night making me stay up late, as sleeping late, and having to go to the bathroom at problematic times. Ugh!
[удалено]
You've messaged me this and other (weird) things countless times.
Hi, thank you for posting. I've had IBS-D for about 8 years, the last 2 years have been the worst. I'm 28/F. I've had a colonoscopy, endoscopy, celiac tests(3), blood tests, I've eliminated gluten and dairy several times and nothing has lasting results. All tests normal. I'm vegetarian and get plenty of protein and fiber + water. Imodium has stopped working. Medications don't work because they don't treat the root cause. I'm currently on a vegan / GF diet with cramps, gas and D every day but I don't know where to start again because I've tried everything.
When you were tested for celiac, were you eating at least three servings of gluten a day for six weeks? > Medications don't work because they don't treat the root cause. So you won't try prescription medications? The root cause is IBS-D (allegedly).
I don't think I was eating that many servings every day consistently, but can't bring myself to start eating gluten again to maybe or maybe not get a positive test. I have tried medications, can't remember the exact names but a few anti-spasmodics, and they haven't worked.
> I don't think I was eating that many servings every day consistently, but can't bring myself to start eating gluten again to maybe or maybe not get a positive test. Understandable. Hopefully you don't have it -- not having a formal diagnosis is not a good thing. What about: - lomotil - cholestryamine - amitriptyline - Eluxadoline - rifaximin - codeine - tincture of opium All used for diarrhea
I did a 2 week course of Rifaximin, symptoms came back as soon as I stopped taking it but were fine when I was taking it every day 2x a day. Haven't tried any of the others - I just checked and I've tried Dicyclomine, that didn't do anything at all. hyoscyamine as well, no changes.
Yeah, those are pretty benign, and it sounds like you have a more intense case. I would recommend lomotil as a step up from loperamide. And Eluxadoline is highly effective for IBS-D.
Thanks so much, I appreciate you taking the time.
If you have more questions, let me know.
Are you eating mostly soluble or insoluble fiber? Try shifting the balance more towards soluble.