Search the Community

Hello together, for about 15 years I had problems about having diarrhea and the need to poop in stressful situations. If there was a long line, in the supermarket, in a traffic jam, at immigration counters on airports, all my body got hot, I had to fart really often and ended very often in the urgent need, to use a toilet. I think most of you know those situations, when you suddenly need a toilet, because you get stressed from the situation "What if I need a toilet soon?" ; and then you really need it! I had two colonoscopys, everything was perfectly fine, nothing bad. The doctors tried all different medications with me: Duspatal, MCP, Imodium (which worked best of all the doctors tried on me), but nothing worked properly. Imodium was okay, but the next day I could not poop and then it was really painful, when it was possible again. So I was fighting for years with the IBS-D and nothing helped. On activities with friends, I always had a good excuse, to say either, that I will not go with them or if we don't better want to stay at home / in a restaurant, it is more cozy...Even if my thought was obviously: There you have a toilet and feel safe! Now I was travelling one time to south america, where you can buy in the pharmacies almost everything you want, without prescription and I also bought Tramadol. Normally only wanted to have it as spare-medicine for really strong pain, but tried it one day just "for fun" and realized: It works amazing for my IBS-D. The Tramadol makes your head completely like: "I don't care! If I need to make a shit next to all the cars in the traffic jam, who cares? ; If the line in the supermarket is really long, I just leave the things, go to toilet and come back again". And I am super happy about it. Because now, in 95% of the days I am taking Tramadol (and I only take it on "special days", where I want to do activities), it works still perfect. Two hours before the activity taken just 50-100mg, and I am fine for about 12 hours. An absoloutely miracle drug for me. Now I am doing that already for about one year, didn't have to increase the dose and still love the effect of it. Before, flying on airplanes, was horror for me. I always took the flights in the afternoon, used the toilet all day several times, took Imodium, Buscopan and was still nervous about the need for a toilet. Now it is much less complicated and I don't have to care anymore. So, just as idea for the ones of you with IBS-D, give Tramadol a try. In Europe unfortunately almost only available by prescription (I never discussed that with my doctor yet, fortunately still have enough pills from holidays at home). In Southamerica and Asia, available OTC, for just a few bucks (2-5€ for 10 pills). They have several generics on the the market. The only downsides: Low sex drive, I almost cannot finish, when I am having sex after taking tramadol and cannot sleep properly, when taking it "shortly" before sleep ; you feel all night like being "up" and doing daydreaming. But for me, it is worth those problems on special days, to enjoy time with friends. Maybe it is also a miracle drug for one of you, that you don't have to suffer for so long, like me. I now really can enjoy life again, go for walks, without having in my head "What, if I need toilet on the walk?". Cheers

Hello everyone. I am new to the group , I have been suffering with pain on my LUQ( left upper quadrant around my rib cage for the last one year. Had been to gastro and dis all the tests- MRI, CT scan, Colonoscopy, endoscopy and all came back good. Dr finally concluded I have IBS , All prescription medication including TCA's never worked. The pain starts after I poop in the morning and feel nauseated and stays whole day , sometimes gets better late evening. Sometimes the pain is on the right side. I have no Constipation or Diarrhea. This is affecting my daily life and feel frustrated. I have tried probiotics, low FODMAP diet, Gluten free diet. Nothing seems to work, I had a second consult wit a GI and he says the same- IBS Anyone having such symptom's? Thanks

Just wanted to introduce myself. You can call me Revan. I have been suffering from IBS since Oct1995. It came into being from a motor vehicle crash on 3Jan1993. I was in the breakdown lane when a drunk driver; the 4th in a 2 year span, drove into me at over 100mph. I died but for some reason Death rejected me and threw me back. There was no light or tunnel or my life flashing on my soul's eyes on the way out but on the way back. It is PTSD incurred and was the first symptom of it. It began one day as I was driving to work. I had normally driven 10-12 miles, but after the place went out of business the new job was 55 miles away. Well after driving there for about 45-50 days it began out of the blue. I had pooped that morning which was normal and was out of the house in the car and had to rush in to go, this happened 3-4 times before I finally left. Then again about 15-20 min later while on the road very unexpectedly and urgently. I was then getting off at every exit. Within days I was averaging from 18 to 24 times in the span of 4 hours. Needles to say I was late for work and continued to be so. Thankfully I was good at what I do so they just kept adjusting my schedule. I was diagnosed with IBS and given Diocyclomene(?), which did not help. My Dr then scheduled me for a Barium Enema, a travesty of humiliation and discomfort. It revealed nothing abnormal. About after a year the frequency declined and became more erratic and spread throughout the day. Though now I am incontinent, was in the past but not often( 2-4xs a year),and have had episodes of going in my pants 2-3 times in a day. The worse was when I went 6 days in a row and couple of those days multiple times. The first day right in the parking lot of the apartment complex, thankfully it was raining hard and washed it away. 2nd day not so lucky, other than it was 5:30AM. So I was able to go inside clean myself and change then head back to clean the mess in the parking lot. I have not worked in 3 years, but start my Lady's car and make sure her tires are at the proper pressure. I was hit by a Texting Teen 3 years ago and suffer from pinched nerve that has contorted my body and limited my mobility as well as triggering my PTSD and IBS to new levels including the incontinence. I have not found a medication to help nor is it influenced by diet. Just recently I have lost 20lbs in one day, from 215 to 195. It was mostly water being released. Some sludge or muddy type as well. At one point in 2020 I was up to 235, but over the course of a week I was back to 215. Again it was mostly watery, sludge, muddy releases. At the time did not think of it or associated the liquid being retained as disturbing till I dropped the 20lbs in 24 hours, though mostly released in a span of 4-5 hours. That changed things. Since the day of the 20# loss I have had one instance of dropping 15# over 36-48 hours. And these past weeks have been fluctuating between 220 and 208. I will not take anything that may cause constipation as retaining up to 5 gallons of liquid excrement is frightening and the possibility of that increasing in volume and rupturing my intestines is even more terrifying and most likely deadly. Pretty sure the pain from the rupture and the subsequent septic shock would hinder me from dialing 911 and probably be dead before they arrived. I hardly leave my home and sometimes cannot make it the 20-25 feet to the bathroom, thank God I have polished concrete floors! Have even left a trail the entire way a few times, but there are times the diaper holds most with just minor leakage. Since 1997 I generally average 3 hours of sleep. Had not had any REM sleep in over a decade. And when I was working and driving would have episodes 3-4 a year where I would go 160-180+ hours with no sleep. Yet I still was able to drive and had more energy than my co-workers half my age. You really see things differently after 120 hours without sleep, and more so with each passing day. My last episode was in Sept2021 for about 145+, and this year had gone 110hrs maybe more in Feb and around 85hrs in April. I was referred to this site by my therapist. I don't know if it will help but am willing to give it a chance. Other than my paid therapist there is nobody in my life who really wants to discuss this or help.

Hello, Wondering if anyone has a similar story to mine. I'm 45 yrs old, pretty active and healthy, but I've struggling with bowel issues intermittently for many years. I've also struggled with anxiety since childhood. In 2010, I had a bout of fever, diarrhea (no blood), weight loss and abdominal pain that lasted a couple weeks. Had a colonoscopy that showed "acute proctitis" (other areas of the colon and small intestine biopsies were normal) and had a stool culture positive for cryptosporidium (nasty little parasite that causes diarrhea). The GI docs chalked up my proctitis and symptoms to the cryptosporidium infection. My symptoms slowly improved but ever since then I've had flares / bouts of "post infectious IBS" (abdominal cramps, burning, gurgling, bowel urgency, rectal discomfort, sleepless nights due to cramps / gurgling / BM's, anxiety and depression) that can last anywhere from days to months. In 2018 they did another colonoscopy that showed "focally active mild ileitis and colitis in the terminal ileum and colon". Pathologist commented "although evolving inflammatory bowel disease cannot be totally excluded these findings are most likely related to a resolving infection or medication / NSAID use". My GI doctor's (I've seen several) still contend that I have IBS despite the abnormal colonoscopies. I should note that I've had normal labs (CRP, CBC, ESR, etc) and stool tests (all fecal calprotectin levels have been normal / low...even one done soon after my 2018 colonoscopy) and also a normal MRE. After 12 yrs of intermittent symptoms I've never developed any complications you might expect in someone who has Crohn's disease. I still struggle though with the anxiety of my abnormal colonoscopies and worry about having Crohn's (even though multiple GI doctors have told me they don't think I have Crohn's...and I've had normal fecal calprotectins 4 times since 2018 even while having symptoms of pain, diarrhea, etc). I have experimented with hypnotherapy (Nerva app), CBT / therapy, medications (imodium as needed, SSRI's for depression / anxiety), plant based diet, etc and I do have periods of feeling "good" but always seem to revert back to having flares of symptoms. I guess my biggest question is has anyone else been told they have IBS even though their colonoscopy is "abnormal"? All the "textbooks" say that IBS has normal colon / intestine biopsies, but I know that medicine doesn't always follow the rules And with normal fecal calprotectins, several GI specialists' opinions being this is IBS and my "personality type" being very anxious (which DEFINITELY worsens when I experience bouts of GI symptoms) I know that IBS is probably most likely...still hard to convince myself though. Sorry this was so long. Thanks for getting through it (if you were able) and thanks for replying if you 've had a similar story. Max

New report reveals that more than one-third of IBS Patients surveyed state it has been more challenging to manage their symptoms during the COVID-19 pandemic. Salix released a report of survey results that offers perspectives from U.S. adults living with irritable bowel syndrome (IBS) during the COVID-19 pandemic. Entitled, Patient Perspectives: Living with IBS in a Pandemic, the report provides insights about the symptoms and behaviors of IBS patients over the past year (March 2020 – March 2021). Most notably, more than one-third (37%) of those surveyed acknowledge that the COVID-19 pandemic has made it more challenging to manage their IBS symptoms. The report, which was developed based on a survey conducted by The Fairleigh Dickinson University Poll, also finds concerns about post-pandemic life and insights about the way patients are communicating with their health care providers. “It’s been just over a year since the COVID-19 pandemic upended lives across the nation. Salix is committed to helping patients with GI conditions, and we believe it is important to gain an understanding of how the COVID-19 pandemic may impact people living with IBS, a common gastrointestinal disorder that is estimated to affect more than 12 million Americans1,” said Robert Spurr, president, Salix Pharmaceuticals. “We believe these new insights may foster important dialogue between health care providers and their patients.” Key findings from the report include: The pandemic is impacting the wellbeing of IBS patients with 49% reporting that their mental health has worsened. Of the respondents, 51% report worse physical activity and 34% state worse eating habits. Many respondents report deteriorating IBS symptoms. According to the survey, 33% report worsened diarrhea, 31% report worsened constipation, 39% report worsened abdominal pain or discomfort, and 42% report worsened bloating. Fewer than 15% of patients surveyed living with these symptoms report experiencing an improvement over the past year. 35% of respondents have not discussed their IBS symptoms with a health care provider at all since the COVID-19 pandemic began. Respondents express concerns about post-pandemic life, including lack of access to restrooms (55%) and being able to attend social gatherings (48%). >> To view the complete findings from the Patient Perspectives: Living with IBS in a Pandemic report, visit here. References 1. Palsson OS, Whitehead W, Törnblom H, Sperber AD, Simren M. Prevalence of Rome IV Functional Bowel Disorders Among Adults in the United States, Canada, and the United Kingdom. Gastroenterology. 2020 Apr;158(5):1262-1273.e3. doi: 10.1053/j.gastro.2019.12.021. Epub 2020 Jan 7. PMID: 31917991.

Hello! I am new to this group but have been stalking for awhile. 😃 I appreciate all the information everyone shares and hope I can help others with anything I have found to be beneficial in my journey with IBS. I was diagnosed with IBS-D nearly 10 years ago. Over the years, I have tried many things including food sensitivity testing, extra fiber, probiotics, Imodium, IBGard, and cutting out most gluten and dairy. Everything helped a little and I have gotten to the point where I rarely have any symptoms EXCEPT when I leave the house. Over the last 2 years, anxiety seems to be the biggest trigger that causes my IBS-D symptoms. I tried a low dose of amitriptyline for about a month but had some side effects I didn’t like (dry eyes, more agitated). I admit that I may not have given it enough time to see if it would help. Now I am using Ashwagandha and am about 2 weeks into a 6 week hypnotherapy program with the Nerva app. I don’t know if hypnotherapy will work but it has become a 20 minute treat each day because it is suuuuper relaxing! Being stuck inside because of the pandemic has not helped but I am also trying to make myself get out more. Like go to the store first thing in the morning to prove that I can do it without any issues, etc. But I need to get to the point where I can meet a friend for lunch without anxiety being a big part of the experience. Have others experienced what I am describing – where anxiety seems to be the trigger – and what has helped you overcome the anxiety? Thank you!

To whom it may concern, I am posting on here once more to retain anonimity and my dignity. My anxieties are quite high ahead of my Doctor's appointment and the predominent reason for this is that I feel I may be suffering from slight incontinence: from very very mild staining of underwear to full loss of bowel control. Do you think this is a cause for concern as I cannot find much information relating to IBS-D and incontinence on the internet. Also, being a 24 year old male, I am very self-concious about this issue and I am concerned that the doctor will suggest wearing incontinence underwear. Has anyone been through this and can alleviate my worries. Best wishes, MadeUp.

Hi fellow sufferers. I googled IBS support group. I was looking for others who deal with symptoms I have. I don't have a formal diagnosis but I'm planning to see my Gastro doctor (who has done my colonoscopy and upper endoscopy in the past year.) He's very nice. I've messaged him often and he communicates well. SO I do plan to get some answers because I know gut issues can be a variety of things. I'm keeping a little pocket calendar with some notes on what happens each day to show him. I seem to go from constipated to then diarrhea and it's so unpredictable and frustrating. I will try a little Miralax when I'm constipated and then it starts to help.. then a couple days later I'll start to go and go 6 times in one morning! Then it becomes too soft and watery and I'm empty again.. then I don't go for 3 days. This happens a lot. I saw a nutritionist and have gone GF for 3 years. That seemed to totally help that AND acid reflux but now both are back. I am healthy weight and a lifetime WW member. I walk a mile+ daily. I am age 68 and very active.. do yoga once a week, ride my bike 4 miles 4xweek in summer... drink lots of water... grow a veg garden and eat healthy and I also like fruit. I try a probiotic daily.. sometimes a little Kefur and take Magnesium Aren't I doing all the right things? I consider myself really healthy and take pride in taking care of myself. I'm happily married and busy all the time. I sleep well. This is the only thing, other than a few orthopedic issues such as back surgery once that is my biggest health problem. I have great Blood pressure at 115 and never smoked. I only take Omeprazole 20 mg and a small dose of simvastin because I never could get my "good cholesterol" high enough. That's it for medications. Questions: Can you have IBS C AND D interchangeably? Does IBS also go hand in hand with acid reflux? Which is better.. Benefiber or Metamucil. I have used both and have both. I had my first diverticulitis last year day after my colposcopy.. they figured the test irritated the colon. Did not like the 10 days of antibiotics.. then it returned 3 weeks later and another round of antibiotics!!! SO that's my story and some of my questions. I like forums with others who share... but there's always the worry that people can sometimes share horror stories and make a person more scared. I DO like to learn from others! I really want to know what this is called for sure... IBS or something else! AND do those of you who know for sure you have IBS just have to experiment like I'm doing and "live with it?" Thanks for taking time to read this.

I was diagnosed with IBS with D. My dr. Told me not to take magnesium. He told me to take 1 tsp of Metamucil and increase to 1tbsp if no results. He gave me a sheet of paper with the FODMAP diet to follow. I found the Monash university app on the internet which helps me see if items are good for me or not. Monash university is in Australia and is one of the foremost leading research centers in IBS. My symptoms were so debilitating that I could barely get out of bed. I felt some relief immediately following this diet. My distended belly went down and I feel I have some hope at getting better. I have totally illuminated foods that are bad on the FODMAP diet. Now I evaluate all foods before I put them in my mouth. I consider them like poison to my body. I will continue on my road to health and wish you the best and hope this might help. Nancy

Does anyone else second guess their diagnosis when having a really bad flare?

What is the difference between IBS classifications? I see some people say they have different ones with letters after them, what does that mean? am very new at this so just learning, thanks

I'm a long time sufferer of IBS-D. I have been keeping close tabs on the newest medication to be approved by the FDA for IBS-D, called Viberzi (eluxadoline), and my doctor just prescribed the 100mg tablets for me, twice daily. I was disappointed that the pharmacist was so unfamiliar with the new medication that they failed to mention that you should take Viberzi with meals and that you need to be careful about the amount of alcohol you consume with it. I asked them to look for drug interactions and they correctly found that I may have a problem with Crestor (a statin) while on Viberzi. They asked me to speak with my family doctor about that. I will post my experience as I start to take it. I decided to start with dinner tonight and with only 50mg - half the usual dosage. Why half the dosage? I’m super sensitive to new medications and I was kind of expecting the worst, so I decided to only go with half the dosage so that the side effects would be minimized. Not scientific in the least and this wasn’t recommended by my doctor. Within 45 mins I started to feel a little light headed and dopey. That lasted about 30 mins and then I felt as usual. From then on I haven’t noticed any side effects other than being a touch nauseated.

I haven't checked in here in a while but you all aren't far from my thoughts. I had a terrible time with IBS-D and an idiot doctor so I was on my own when I found this support group. I got a lot of help from quercetin and L-glutamine along with time and the typical things we have all tried. I'm writing today to mention 2 more supplements I have found that are helping me A LOT. They are Essiac Tea ( https://store.renecaissetea.com/products/blue-moon-herbs-essiac) and Wobenzym digestive enzymes. The Essiac i learned about because I am now giving it to my dog to fight a tumor she has. Then I read that it is also good for sufferers of IBS. I really think it has enabled me to enjoy some of the healthy foods that were a trigger for a while. The digestive enzymes are for joint health but if you read further they help systemically in a multitude of ways and, again, I believe they are helping me over potential episodes. I initially got IBS from too many scripts for antibiotics.. now my worst trigger is stress because Essiac tea and wobenzym have helped me over come the others. best of luck to you all.

I have ibs-d for a long period.now my doctor prescribed me ibset tablets(Ramosetron) .Has anyone used it before,and what is the result?

The American College of Gastroenterology (ACG) annual meeting reported some observations from patients who were treated with Fecal Matter Transplantation (FMT) for an overgrowth of Clostridium Difficile (C Diff). C Diff is a very serious bowel infection that is difficult to resolve. It is usually caused by antibiotics. FMT has a greater than 90% cure rate for C Diff. However, two observations were made about patients who recovered from C Diff after FMT: 1) Postinfectious-IBS developed in 25% of those that received FMT for their C Diff. 2) Crohn's disease or Ulcerative Colitis patients were likely to have a flaring episode of their disease from the FMT treatment. It appears FMT has some risks and is not a completely benign treatment. FMT has been in clinical trials for the treatment of IBS for the last several years.

I suffer from IBS-C..I've tried all kinds of diets including eating just fruits and veggies..I've even JUST gone weeks ONLY having smoothies...ie..blending ALL my foods...fruits..veggies..meats with rice and beans turned to purees..herbal teas but still have trouble going on a regular basis...still experience abdominal pain and bloating and have gone for up to 5 days without a bowel movement...I'm on the websites constantly reading and trying new things but hasn't helped..does anyone have any miracle cures?

Statins have been shown to affect the gut microbiome. I take a low dose statin for my kidney disease. A possible side affect is diarrhea. However, I am lucky and do not get that. I reversed my IBS-D in April, 2015 and am still doing fine. We perturb our gut microbiome in many ways. Here is some research on statins. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5550934/ btw Jeffery, what do you think of the human microbiome ?

I would really like to hear from anyone who is taking or has tried Viberzi for IBS-D. What were your results?

Hi Jeffrey, I've read that statins can affect the gut microbiome, so this is worth considering. I have to take lovastatin for my kidney disease. But, I try to take the least amount possible, while achieving acceptable test results. We're only just beginning to understand that many products, medications, etc. affect the microbiome. How can we expect the best results to improve our microbiomes, if we still continue to perturb them with additives in our food, or other products ? Have you ever considered treatment at the Centre for Digestive Diseases in Australia ? I've read in "10% Human" by Alanna Collen that Dr. Borody is reversing IBS-D with an 80% success rate. So, have you considered this option ? It seems that he is more successful than others and may have a better technique. Lately, I've been experimenting with periods of fasting and then consumption of a variety of fresh fruits and fresh vegetables, in the hopes of reducing my need for sleep. I still haven't decided if it is helping. The reasons for this are; 1. We know that the microbiome responds rapidly to changes in our diet. 2. We know that we can get new bacteria from our food. 3. Bacteria have short life spans. So, the reasoning is; to starve out the existing population and hopefully introduce new species and promote the growth of our beneficial species. If one can tolerate them, prebiotic foods should definitely be considered and included in this approach, which I am also incorporating. I don't expect immediate results and am hoping that over time with this approach that I can improve my microbiome population and improve my need for sleep. Time will tell.

I just received an email from Jeffrey D. Roberts inviting me to this forum. I figured I'd take a second and set up an account to let everyone know that I'm so happy to report that my IBS (mostly diarrhea but sometimes alternating) has disappeared since I started taking this product called IBS Formula. After a friend's recommendation, I bought a bottle on Amazon over the summer. After just a few days of using the product, I was diarrhea free. It's around $26 on Amazon but now I get it autoshipped every month from ibsformula.com and it's $22/month. If you're still suffering it may be worth a try.

A Phase 4 Multicenter, Multinational, Prospective, Randomized, Placebo-Controlled, Double-Blinded Parallel Group Study to Assess Efficacy of Eluxadoline in the Treatment of Irritable Bowel Syndrome with Diarrhea (IBS-D) in Patients who Report Inadequate Control of IBS-D Symptoms with Prior Loperamide Use (RELIEF). Location: Beavercreek, Ohio Gender: Both Female and Male Age: 18 to 80 years Study Duration: 18 Weeks Complete info here.

At Digestive Disease Week (DDW) in Chicago, I met with the new pharmaceutical (Sebela Pharmaceuticals) that will be marketing Motofen. Motofen is primarily used as an anti-diarrheal medication and has been on/off the market since 1978. Motofen contains difenoxin and is considered a Schedule IV medication which means it is unlikely to be habit forming; however, it needs to be managed very closely. Atropine is added to help the drug not become habit forming. The drug was recently acquired by Sebela and they are in the imminent process of marketing it. For some, this medication will work similar to Lomotil. You can read more about Motofen on its website, http://www.motofen.com