Your experiences with IBS mixed? I feel sick and alone in this.

Posted by harmonyln @harmonyln, Wed, Apr 10 2:30pm

It would really be helpful for me to hear from others about what they're going through and how they cope with their IBS issues. I've never had this problem and could always pretty much eat what I wanted without any ill effect. Now if I accidentally eat even the smallest amount of gluten or anything with dairy I am sick for 2 to 5 days and I feel totally exhausted the entire time. First starts belching, then painful bloating and cramping and I become constipated. My upper abdomen hurts as if I had been hit with something hard, my gut feels raw inside and often unremitting nausea also sometimes happens. Once the bloating calms back down, out of the blue I experience urgent diarrhea that can come even if I eat even a few bites of "approved" food. (I've been on FODMAP since Feb). My appetite has gone away and I've lost 19 lbs since I started eliminating foods on the list. The diarrhea can last the entire day and by the time it stops my body is weak, i'm very tired and my abdomen feels tender for the next few days. I've become hesitant to eat, although I'm falling woefully short of calories nearly every single day. Food has lost it's appeal to me and feels more trouble than it's worth. My social life has been totally impacted by these problems and I pass up on fun activities that have been a part of my life forever. Going out to a restaurant is mostly a nightmare now. My GI dr prescribed Bentyl and Omeprozole, which didn't help much, and basically sent me on my way telling me that I need to work on reducing my stress levels. I have dealt with major depression and an anxiety disorder for going on 25 years, which is currently well managed with the exception of the anxiety that being this ill can trigger. I'm getting acupuncture twice a week and that does seem to help. The D.O. that is doing this for me also has me on a regime of Digestive Enzymes. He's also given me a recipe for a "gut healing smoothie" that contains several holistic ingredients, including probiotics with acidophilus/bifidus. I'm currently waiting for these things to come in the mail so I can't speak to its effectiveness yet. At this point I'm willing to try just about anything to get my life back. I feel that I am constantly complaining to my friends and family when they ask how things are going, The only thing that I can point to as what brought this all on, although my GI dr wouldn't agree, is that I had two colonoscopies within 6 months (March and August of last year) as a result of numerous polyps, one of which was difficult to fully remove in one session. None were cancerous but all were of the type that will eventually turn into cancer. Because of this she now wants to start doing colonoscopies every 3 years, which I totally dread just it case it triggers my IBS to become worse. If its not related to those procedures and their prep, can and did your IBS just come on suddenly with no warning and nothing particularly prompting it? Do you feel, or have you been told that this illness will be something that you have to live around forever? Have you ever heard of it going into remission and/or going away entirely? I've done a lot of reading on this subject but really need to hear from those of you who understand and can relate to what I am talking about. I feel alone in this and am afraid that this is my new normal. Thank you for reading this and for hopefully sharing a bit about your experience with IBS.

I can totally empathize with your situation. I also have IBS and looking back, I believe that it began more than one year ago although not diagnosed until later on. No real idea where it came from except possibly after many years of living in Mexico off and on, having numerous intestinal problems there and taking many antibiotics. To further complicate my digestive situation, I also have a serious GERD condition. I have been on the low Fodmap diet for about six months and have lost 25+ lbs.—some of which I needed to lose. But now I am trying to stabilize or even gain. Sometimes even “allowed” foods cause symptoms. I have not had much success in reintroducing forbidden foods—all that I have tried have caused problems. My understanding is that IBS is a permanent condition and I am resigned to, as you said, “the new normal.” I will probably have to have some type of surgery for my GERD since none of the medications are controlling those symptoms. After that at least I hope to be able to add some foods from the Fodmap “NO” list back into my diet—e.g tomatoes and maybe real coffee. Have you considered seeing a dietician?
I saw one who was actually quite helpful at least within the constraints of the restrictive low Fodmap diet. I am not inclined to try any of the meds like Viberzi after my GI went over possible side effects. He has recommended a probiotic called VSL3 which has been tested for IBS. Just started a week ago but so far so good with the bathroom activity—almost normal and no emergencies or constipation. Ask your doctor before you take it. Very expensive. I had heard that Align was also good for IBS and once tried that on my own. It seemed to help at first, but then aggravated my GERD so I quit taking it.
I have heard if some people having success with integrative or functional medicine doctors. You mentioned a DO and maybe that’s is what he or she is trained in. I am considering seeing an MD in integrative medicine later on for IBS but not until after I have the GERD situation under control. I have found that most GI docs are not real good at coordinating care for multiple conditions. Anyway, you still need a GI doctor so if you don’t trust the one you have, research the options and find someone else. I should have done that a year ago! Anyway, good luck!

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@jackiem95

I can totally empathize with your situation. I also have IBS and looking back, I believe that it began more than one year ago although not diagnosed until later on. No real idea where it came from except possibly after many years of living in Mexico off and on, having numerous intestinal problems there and taking many antibiotics. To further complicate my digestive situation, I also have a serious GERD condition. I have been on the low Fodmap diet for about six months and have lost 25+ lbs.—some of which I needed to lose. But now I am trying to stabilize or even gain. Sometimes even “allowed” foods cause symptoms. I have not had much success in reintroducing forbidden foods—all that I have tried have caused problems. My understanding is that IBS is a permanent condition and I am resigned to, as you said, “the new normal.” I will probably have to have some type of surgery for my GERD since none of the medications are controlling those symptoms. After that at least I hope to be able to add some foods from the Fodmap “NO” list back into my diet—e.g tomatoes and maybe real coffee. Have you considered seeing a dietician?
I saw one who was actually quite helpful at least within the constraints of the restrictive low Fodmap diet. I am not inclined to try any of the meds like Viberzi after my GI went over possible side effects. He has recommended a probiotic called VSL3 which has been tested for IBS. Just started a week ago but so far so good with the bathroom activity—almost normal and no emergencies or constipation. Ask your doctor before you take it. Very expensive. I had heard that Align was also good for IBS and once tried that on my own. It seemed to help at first, but then aggravated my GERD so I quit taking it.
I have heard if some people having success with integrative or functional medicine doctors. You mentioned a DO and maybe that’s is what he or she is trained in. I am considering seeing an MD in integrative medicine later on for IBS but not until after I have the GERD situation under control. I have found that most GI docs are not real good at coordinating care for multiple conditions. Anyway, you still need a GI doctor so if you don’t trust the one you have, research the options and find someone else. I should have done that a year ago! Anyway, good luck!

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I'm fairly new to this whole ball of wax, so it's likely what I say here won't help much, or could even be incorrect. But I have written elsewhere on these forums about the benefits of functional medicine (I thiiiink if you click my username, it'll take you to those posts). And after about 9 months on all kinds of probiotics and enzymes (including the world's strictest GI elimination diet and $400+/mo in supplements), I read somewhere that probiotics and enzymes can actually worsen a 'leaky gut' if it isn't healed enough to handle them. So I stopped taking them about a month ago, and started seeing a(nother) functional MD who confirmed that they can worsen things. Some enzymes can have egg whites in them, which can exacerbate problems for some folks with egg (esp white) sensitivity. @jackiem95 mentions a VSL3 probiotic, so she likely knows more than I do, and I'm adding that to my list to investigate and ask my functional MD about. He did some very fancy bloodwork to test for intestinal permeability at a higher level than what others have tested, awaiting results. (Jury's still out on whether or not he's going to help heal me, I'll give his name if so!) A naturopath requested bloodwork to check IA2 levels, which came back slightly elevated, but she didn't suggested any diet changes for those. Functional MD was the first to suggest that it's possible I'm having IA2 cross-reactivity (meaning, even on the world's strictest GI elimination diet, I'm allowed to eat things that would be cross-reactive with antibodies and keep making me sick). Also, in case this helps anyone else out there, I haven't had gluten in 10yrs, so my IgA keeps coming back 'normal' (seronegative) (Mayo said it was 'normal' and dismissed me …), but a gastroenterology NP training in functional medicine recently asked why no one has tested for the Celiac gene — and I'll get that test tomorrow. I'm off gluten, so that isn't a huge piece of the puzzle, but there's this molecular mimicry thing I'm learning about, where your body attacks what it THINKS is gluten, exacerbating food immune reactivities and autoimmunity.

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@jackiem95

I can totally empathize with your situation. I also have IBS and looking back, I believe that it began more than one year ago although not diagnosed until later on. No real idea where it came from except possibly after many years of living in Mexico off and on, having numerous intestinal problems there and taking many antibiotics. To further complicate my digestive situation, I also have a serious GERD condition. I have been on the low Fodmap diet for about six months and have lost 25+ lbs.—some of which I needed to lose. But now I am trying to stabilize or even gain. Sometimes even “allowed” foods cause symptoms. I have not had much success in reintroducing forbidden foods—all that I have tried have caused problems. My understanding is that IBS is a permanent condition and I am resigned to, as you said, “the new normal.” I will probably have to have some type of surgery for my GERD since none of the medications are controlling those symptoms. After that at least I hope to be able to add some foods from the Fodmap “NO” list back into my diet—e.g tomatoes and maybe real coffee. Have you considered seeing a dietician?
I saw one who was actually quite helpful at least within the constraints of the restrictive low Fodmap diet. I am not inclined to try any of the meds like Viberzi after my GI went over possible side effects. He has recommended a probiotic called VSL3 which has been tested for IBS. Just started a week ago but so far so good with the bathroom activity—almost normal and no emergencies or constipation. Ask your doctor before you take it. Very expensive. I had heard that Align was also good for IBS and once tried that on my own. It seemed to help at first, but then aggravated my GERD so I quit taking it.
I have heard if some people having success with integrative or functional medicine doctors. You mentioned a DO and maybe that’s is what he or she is trained in. I am considering seeing an MD in integrative medicine later on for IBS but not until after I have the GERD situation under control. I have found that most GI docs are not real good at coordinating care for multiple conditions. Anyway, you still need a GI doctor so if you don’t trust the one you have, research the options and find someone else. I should have done that a year ago! Anyway, good luck!

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Thank you very much for your reply! First off, let me say that I'm sorry to hear of your distress, it's truly awful to be so sick. I started to strictly follow the FODMAP diet in mid February after I finally accepted that things weren't going to improve the way that they were going. I've lost 19 lbs in the span of 2 months, some of which I could stand to lose anyway but certainly not that fast and for the reason behind it. I just made the horrible mistake of eating Whole Rolled Oats after reading that small amounts of oatmeal are allowed on the FODMAP plan. Major mistake on my part, it was supposed to be Quick Oats. I've been very sick for the past 3 days and you couldn't pay me to have another bite of oatmeal regardless of the type. The types foods that I know don't make me sick in one way or another seems to be shrinking and eating has become a real challenge and something that is actually scary to me. I've asked for a recommendation for a dietician and nothing ever came of it, I definitely want to see one and will press this issue. I am seeing my D.O. tomorrow and will ask about the probiotic that you mentioned. My G.I. dr had recommended Align to me and it made me feel really nauseated but I hung in there for a week or so. Finally I read the fine print on the box and it said that it contained milk! I knew in an instant that that was what was making me so sick, immediately stopped it and improved right away. For the life of me, I can't understand why I G.I. dr who is treating someone for IBS would suggest anything with milk in it, regardless of the amount- especially since she was the one who suggested the FODMAP diet to me in the first place. I'll do some research on how an integrative dr can assist me, I probably should check first to see if my insurance covers this. Thank you again for sharing your story, I'm grateful for your input since you understand know what this feels like and what an impact it has on all of us who suffer. All my best to you!

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@bluejay3

I'm fairly new to this whole ball of wax, so it's likely what I say here won't help much, or could even be incorrect. But I have written elsewhere on these forums about the benefits of functional medicine (I thiiiink if you click my username, it'll take you to those posts). And after about 9 months on all kinds of probiotics and enzymes (including the world's strictest GI elimination diet and $400+/mo in supplements), I read somewhere that probiotics and enzymes can actually worsen a 'leaky gut' if it isn't healed enough to handle them. So I stopped taking them about a month ago, and started seeing a(nother) functional MD who confirmed that they can worsen things. Some enzymes can have egg whites in them, which can exacerbate problems for some folks with egg (esp white) sensitivity. @jackiem95 mentions a VSL3 probiotic, so she likely knows more than I do, and I'm adding that to my list to investigate and ask my functional MD about. He did some very fancy bloodwork to test for intestinal permeability at a higher level than what others have tested, awaiting results. (Jury's still out on whether or not he's going to help heal me, I'll give his name if so!) A naturopath requested bloodwork to check IA2 levels, which came back slightly elevated, but she didn't suggested any diet changes for those. Functional MD was the first to suggest that it's possible I'm having IA2 cross-reactivity (meaning, even on the world's strictest GI elimination diet, I'm allowed to eat things that would be cross-reactive with antibodies and keep making me sick). Also, in case this helps anyone else out there, I haven't had gluten in 10yrs, so my IgA keeps coming back 'normal' (seronegative) (Mayo said it was 'normal' and dismissed me …), but a gastroenterology NP training in functional medicine recently asked why no one has tested for the Celiac gene — and I'll get that test tomorrow. I'm off gluten, so that isn't a huge piece of the puzzle, but there's this molecular mimicry thing I'm learning about, where your body attacks what it THINKS is gluten, exacerbating food immune reactivities and autoimmunity.

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Many thanks for your reply! I'm very interested to learn more about leaky gut and the potential negative effects of enzymes and probiotics, perhaps I currently fall more into that category. My third probiotic concoction arrived today but I am going to hold off on trying it until I speak with my D.O. who was the one who recommended it (Acidolphilus/bifidus).The first one was Align, suggested by my GI dr and it was a nightmare and the second one I tried to figure out for myself in the health aisle at Whole Foods. It did nothing but make my stomach hurt. I will definitely look back into your earlier posts regarding functional medicine. I've made a long list of things to ask my D.O. about, specifically the different blood work that can run and what he thinks about these other topics. I was tested for Celiac but was already a month into no gluten and so it didn't conclusively show any negative reaction. It seems to of be a guessing game, even by the professionals when it comes to figuring out this illness and how to go about treating it with solid, positive results. I'm learning though replies here that one size does not fit all for the people who suffer like we do. I guess if it did the course of treatment would be standard issue and we would get the help and relief we are so desperately in search of. I hope that things begin to improve for you and the answers for proper treatment come your way soon! Best wishes!

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@bluejay3

I'm fairly new to this whole ball of wax, so it's likely what I say here won't help much, or could even be incorrect. But I have written elsewhere on these forums about the benefits of functional medicine (I thiiiink if you click my username, it'll take you to those posts). And after about 9 months on all kinds of probiotics and enzymes (including the world's strictest GI elimination diet and $400+/mo in supplements), I read somewhere that probiotics and enzymes can actually worsen a 'leaky gut' if it isn't healed enough to handle them. So I stopped taking them about a month ago, and started seeing a(nother) functional MD who confirmed that they can worsen things. Some enzymes can have egg whites in them, which can exacerbate problems for some folks with egg (esp white) sensitivity. @jackiem95 mentions a VSL3 probiotic, so she likely knows more than I do, and I'm adding that to my list to investigate and ask my functional MD about. He did some very fancy bloodwork to test for intestinal permeability at a higher level than what others have tested, awaiting results. (Jury's still out on whether or not he's going to help heal me, I'll give his name if so!) A naturopath requested bloodwork to check IA2 levels, which came back slightly elevated, but she didn't suggested any diet changes for those. Functional MD was the first to suggest that it's possible I'm having IA2 cross-reactivity (meaning, even on the world's strictest GI elimination diet, I'm allowed to eat things that would be cross-reactive with antibodies and keep making me sick). Also, in case this helps anyone else out there, I haven't had gluten in 10yrs, so my IgA keeps coming back 'normal' (seronegative) (Mayo said it was 'normal' and dismissed me …), but a gastroenterology NP training in functional medicine recently asked why no one has tested for the Celiac gene — and I'll get that test tomorrow. I'm off gluten, so that isn't a huge piece of the puzzle, but there's this molecular mimicry thing I'm learning about, where your body attacks what it THINKS is gluten, exacerbating food immune reactivities and autoimmunity.

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Just curious about why you would want to investigate VSL3 probiotic with your functional MD after he has apparently told you that probiotics can make your condition worse. I am having trouble understanding “cross reactivity, “ molecular mimicry” etc. Way too complicated for me. I need to simplify my life with IBS not make it more complex to navigate. To each his own.

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I am sorry to hear about your illness. I have had IBS-D all of my life. Then I got C. diff. after Antibiotic usage. I have tested negative but still, experience extreme upper abdominal bloating and pain and stretching feeling (like my abd. will burst.) I had also been on the low fodmapdiet for a year. So my point is …I have been sick since 2/17. Just tell your friends you are fine. Tell the truth to family and get a second opinion from another G.I. person. Post your pain on the blog.

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@sue6408

I am sorry to hear about your illness. I have had IBS-D all of my life. Then I got C. diff. after Antibiotic usage. I have tested negative but still, experience extreme upper abdominal bloating and pain and stretching feeling (like my abd. will burst.) I had also been on the low fodmapdiet for a year. So my point is …I have been sick since 2/17. Just tell your friends you are fine. Tell the truth to family and get a second opinion from another G.I. person. Post your pain on the blog.

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Hi Sue, Thank you for sharing about your experiences. I am sorry that you have been sick for such a long time now, you must be exhausted and frustrated by it all. I can certainly relate to what you said about the abdominal bloating and pain, I've not found one single thing that provides relief, and I have tried many. For me it seems that only time and waiting is out is my only option with these issues. I agree with you that a second opinion with a different GI specialist is my next step. Thanks again for your input, it's very much appreciated.

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I am reading these posts because I am having difficulties too. I know that dairy is a trigger, but there is something else too, and I have not been able to pinpoint it yet. I am thinking at this point that it is possibly chocolate! The chocolate I eat is very dark 85%cocoa and has no dairy in it. Have any of you heard of chocolate being a trigger?
Fortunately, though I have no pain, just diarrhea. I have been to the doctor, actually the doctor's NP, and she insisted on testing me for celiac even though I have never had a reaction to wheat products.
I was thinking it was a simple lactose intolerance but since I have problems even when I am scrupulously careful about not having any dairy, I presume it must be more than that.
JK

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@contentandwell

I am reading these posts because I am having difficulties too. I know that dairy is a trigger, but there is something else too, and I have not been able to pinpoint it yet. I am thinking at this point that it is possibly chocolate! The chocolate I eat is very dark 85%cocoa and has no dairy in it. Have any of you heard of chocolate being a trigger?
Fortunately, though I have no pain, just diarrhea. I have been to the doctor, actually the doctor's NP, and she insisted on testing me for celiac even though I have never had a reaction to wheat products.
I was thinking it was a simple lactose intolerance but since I have problems even when I am scrupulously careful about not having any dairy, I presume it must be more than that.
JK

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Hi J.K. Thank you for your reply. I don’t know if this would apply to your chocolate issues but I’ve been reading here today about fructans and f.m. – fructose malabsorption. I’m interpreting that to mean any type of sugar, in any amount. Fruits, certain vegetables by nature (carrots) can trigger issues. Perhaps there is something sugar-like in your chocolate even though it’s Dark. I hope this possibly helps, I’m new to all of this but am seeing things here that make a lot of sense for me regarding this topic. Best wishes to you and thank you for being a Volunteer Mentor!

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@harmonyln

Thank you very much for your reply! First off, let me say that I'm sorry to hear of your distress, it's truly awful to be so sick. I started to strictly follow the FODMAP diet in mid February after I finally accepted that things weren't going to improve the way that they were going. I've lost 19 lbs in the span of 2 months, some of which I could stand to lose anyway but certainly not that fast and for the reason behind it. I just made the horrible mistake of eating Whole Rolled Oats after reading that small amounts of oatmeal are allowed on the FODMAP plan. Major mistake on my part, it was supposed to be Quick Oats. I've been very sick for the past 3 days and you couldn't pay me to have another bite of oatmeal regardless of the type. The types foods that I know don't make me sick in one way or another seems to be shrinking and eating has become a real challenge and something that is actually scary to me. I've asked for a recommendation for a dietician and nothing ever came of it, I definitely want to see one and will press this issue. I am seeing my D.O. tomorrow and will ask about the probiotic that you mentioned. My G.I. dr had recommended Align to me and it made me feel really nauseated but I hung in there for a week or so. Finally I read the fine print on the box and it said that it contained milk! I knew in an instant that that was what was making me so sick, immediately stopped it and improved right away. For the life of me, I can't understand why I G.I. dr who is treating someone for IBS would suggest anything with milk in it, regardless of the amount- especially since she was the one who suggested the FODMAP diet to me in the first place. I'll do some research on how an integrative dr can assist me, I probably should check first to see if my insurance covers this. Thank you again for sharing your story, I'm grateful for your input since you understand know what this feels like and what an impact it has on all of us who suffer. All my best to you!

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I’ve been reading quite a bit about the positive effects of peppermint tea and peppermint oil (aromatherapy) in providing relief of symptoms caused by IBS – abdominal pain, cramping, nausea and the like. Most definitely worth looking into. I hope this helps if you decide to give it a try.

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@harmonyln

I’ve been reading quite a bit about the positive effects of peppermint tea and peppermint oil (aromatherapy) in providing relief of symptoms caused by IBS – abdominal pain, cramping, nausea and the like. Most definitely worth looking into. I hope this helps if you decide to give it a try.

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Be careful with peppermint if you have heartburn or GERD.

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@harmonyln

Hi J.K. Thank you for your reply. I don’t know if this would apply to your chocolate issues but I’ve been reading here today about fructans and f.m. – fructose malabsorption. I’m interpreting that to mean any type of sugar, in any amount. Fruits, certain vegetables by nature (carrots) can trigger issues. Perhaps there is something sugar-like in your chocolate even though it’s Dark. I hope this possibly helps, I’m new to all of this but am seeing things here that make a lot of sense for me regarding this topic. Best wishes to you and thank you for being a Volunteer Mentor!

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Thanks, @harmonyln I don't think it's the fructose or sugar, I eat a lot of fruit, especially berries, and have no problems with vegetables, carrots included. It may not be chocolate, I am still working on this. I am being scrupulously careful about not eating a speck of anything dairy, not even small amounts which I can generally handle if I take 3 Lactaid. I have been good for two days now so maybe tomorrow I will try a piece of dark chocolate and see what happens. I hope nothing, I love chocolate and I consider it one of my few treats. We all need something that we really enjoy to look forward to.

Regarding your next post, whatever I have, IBS or just lactose intolerance, my only problem is the big D. I don't have any stomach discomfort at all! I don't suppose that peppermint tea would help with that. I am at least glad that I finally figured out, after more than two years, that it's not a problem simply related to my immunosuppressants, but a problem that the immunosuppressants triggered and that I can do something about. It has gotten worse and worse over time.
JK

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Hi there, I do not have IBS, but I have an illness which creates digestive issues which can be very bad. There are two things that are very helpful. One is that I use powdered bone broth in juice at least once, sometimes twice a day. If I do not, I can be guaranteed extreme diarrhea for days after. I must use this. If you want more info about this, let me know. Bone broth helps your whole immune system and leaky gut, in general. Another amazing thing for your digestive system is Papaya. It is loaded with enzymes that normalize a bad belly. You will neither have constipation or diarrhea if you eat it. My mom was in a wheel chair and got very bound up being in one, and her care giver fed her daily Papaya. All constipation disappeared. Good luck. If you need more info, please get back to me. Lori Renee

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@lorirenee1

Hi there, I do not have IBS, but I have an illness which creates digestive issues which can be very bad. There are two things that are very helpful. One is that I use powdered bone broth in juice at least once, sometimes twice a day. If I do not, I can be guaranteed extreme diarrhea for days after. I must use this. If you want more info about this, let me know. Bone broth helps your whole immune system and leaky gut, in general. Another amazing thing for your digestive system is Papaya. It is loaded with enzymes that normalize a bad belly. You will neither have constipation or diarrhea if you eat it. My mom was in a wheel chair and got very bound up being in one, and her care giver fed her daily Papaya. All constipation disappeared. Good luck. If you need more info, please get back to me. Lori Renee

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Is the papaya a capsule or what? They use it where I work for tummy stuff also

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Can't help but wonder if those colonoscopies were some kind of abuse to your colon. Did some kind of damage. Why would these problems start? Do you have any instinct in your soul what you should eat to heal yourself? Are there certain foods that you seem to do good with? Eat those. Stay with those. Even if you have to eat them a lot. Ginger grated into hot water is healing to your gut. Sip it. Don't let yourself get underweight or malnourished. Really try the bone broth. Easiest to use. Try it for a few weeks at least. Then try the papaya for a few weeks. It is hard to be sick. Very hard. Lori Renee

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