peter1 Posted March 10 Report Share Posted March 10 IBS-D here. On and off symptoms for the past two years that have continually gotten worse over time. Almost always wake up bloated and have a few bouts of diarrhea throughout the day even with Vibrezi for the past 6 weeks. Cramping and abdominal pain after most meals. I just took a SIBO breath test today and hopefully will get some information from that. I'm just so tired of feeling sick and tired all the time. I used to love eating and cooking, but now I'm generally disinterested, never hungry, and worried about the impending pain. I know that I don't eat enough, which makes me cranky, tired, and prone to foolish errors in my work. And then having to run to the bathroom in the middle of meetings or experiments is really disruptive. I just don't want to feel betrayed by my body and to feel like I have some control over my life. Quote Link to comment Share on other sites More sharing options...
Nick L Posted March 11 Report Share Posted March 11 New member here with IBS-D. Diagnosed by a Gastroenterologist via a colonoscopy about 15 years ago. Like many of you IBS is a living nightmare. My flareups are typically caused by social anxiety although I have food triggers as well. I have to work from home, rely on my wife to handle long drives while I sit in the passenger seat listening to IBS meditations on YouTube, must be near a toilet or be going to a place with immediate (and discrete) access to a toilet. My IBS has broken me. I’ve been reduced from an award winning instructor, someone who could effortlessly give lectures in classrooms and ballrooms to someone who can’t teach anymore due to the terrifying fear of having a debilitating IBS attack. It’s bad enough where I can’t hide it. Most people know I have it. The pain is too great and frequent to keep a secret. The pain. I can’t explain how painful and frightening these urges can be. They sometimes induce panic attacks. Sometimes I fear the attack is coming and then I feel my whole body vibrating and becoming warm because of the terrible timing (work event or family gathering). Not to sound dramatic but I feel the past 15 years of embarrassments, pain, lose of control, seclusion, failure, over and over again has been traumatizing. It changed me forever I fear. I’d also long given up on meds because I felt like nothing worked when I needed it most. However I’m coming back around to meds again and other treatments which surprisingly seem to be having positive results. Do I dare have hope? I’m hoping and praying the recent successes don’t amount to nothing. Anyway, there’s too much to tell. I’m here to learn how to reduce this paralyzing pain. And, who knows, maybe I can help others wherever possible too. Thanks for listening all. -Nick Quote Link to comment Share on other sites More sharing options...
CathyCat Posted March 11 Report Share Posted March 11 Hi Nick, So sorry to hear what you’ve been through. Your case sounds just terrible. I don’t wonder that it has impacted your life so dramatically. I’ve also struggled with IBSD for about 15 years. For a lot of that time I could calm it down to one fairly predictable “cow pie” per day using Imodium, but not any more. This last flare up has been very long lasting and debilitating. I have multiple episodes each day and belly pain. I feel extra fatigued and am only confident enough to leave the house in the early afternoon for a while. I’ve had every test in the world, more than once, as you may have also experienced. Including four colonoscopies and one yucky barium x-ray. Not to mention the joy of scooping poop into many little tubes with tiny implements. These just add to the overall indignity of the condition. i will also admit to having a somewhat anxious makeup, and I have a background that includes abuse, which I understand is a risk factor. For these reasons I am now trying hypnotherapy. So far it has not made a difference, but I haven’t been at it very long. Can I ask what you’re feeling hopeful about? I’m not sure medication is the route for me. I’ve had budesonide when the diagnosis was thought to be microscopic colitis (apparently that wasn’t right). I’ve tried cholestrymine for excess bile acid with no luck either. I’ve been wanting to try Xifaxan but the pharmacy wants $750 for it, so I have not used it yet. Any further thoughts you’d like to share would be welcome on this end. Best of luck. Cathy Quote Link to comment Share on other sites More sharing options...
Nick L Posted March 19 Report Share Posted March 19 Hi Cathy - Thanks for the reply and sorry for my late response. Your case sounds absolutely dreadful and I'm really sorry to hear. Outside of the colonoscopy I received 15 years ago that "found nothing remarkable", I had a cat scan about a year ago that was also clean. Although I'm happy no colon cancer was detected, I was hoping they'd find something. They also did a SIBO test a couple of years ago that came back positive, although treatment didn't reduce any symptoms. I haven't gone back for another colonoscopy because, quite frankly, I'm not sure I can make the drive after consuming 128oz of a prescription laxative. Plus, I've become quite indifferent to going to Gastroenterologists. They never find anything, the medications don't help (Bentyl anyone?), and you get a bill for $500. The hope I mentioned in my previous post was regarding a peppermint oil tablet supplement called IBGard that I recently started taking 3x a day. It seems to help a little bit but not every time. I'm not sure how much hope remains at this point. I think I'll try a Gastroenterologist one more time and go through the colonoscopy drill again. More importantly, I want to revisit Viberzi. I had some success with that medicine in the past although that was several insurance plans ago and I'll need to verify my insurance covers it. Very expensive medication ($1500 before insurance). Thanks for your support. It's good to be around folks with similar issues. Nick 1 Quote Link to comment Share on other sites More sharing options...
Renee kerckhove Posted March 20 Report Share Posted March 20 On 1/22/2020 at 10:32 AM, ANDREW SAVAGE said: Hi I'm a new member and initially I had IBS D for years but then after a two year break I now have IBS C with the very rare attack of IBS D. I am 67 now and I can honestly say NOTHING WORKS to change that. I have tried everything; prescribed and non prescribed drugs, Yoga, meditation, Fodmap diet, etc, etc, etc. I have to take mild laxatives' every other day (Fibrogel) just to ease the symptoms. Can anybody give me something NEW please ?? Andy I do feel for you. I’m to be 69 and 22 years with IBS. I rub lightly in a clockwise manner all around my abdomen. It wakes up my gut and soothes me at the same time and I can work and do that at the same time too. Don’t give up. I research a lot about different ways to make IBS tolerable. I’d rather have IBS than cancer or diabetes etc. those are life threatening. I don’t believe IBS can kill us. But! I do understand reaching frustrating points. Quote Link to comment Share on other sites More sharing options...
Dee920 Posted April 4 Report Share Posted April 4 Hi everyone, I have IBS-D and have been treated for SIBO. I am 64 and have been dealing with this for most of my life. When I was in my 30 and 40's I thought it was normal, but as I got older it got worse and worse, to the point of hospital ER visits thinking I was dying of something. They thought I was drug seeking because I complained of severe pain and unstoppable diarreha, the test were all negative. I finally saw a gastro who diagnosed me with SIBO and treated it...over and over again for 2 years with massive antibiotics and Imodium. He gave up and referred me to the head of the GI department who, after a careful history, diagnosed me with IBS-D and prescribed Alosetron. It has worked wonders. It is a serious medication and only available to women due to dangerous side effects but it has been the best thing that ever happened to me. I still have flare ups that can be debilitating but the are much, much less frequent and I can eat like a normal diet ( more or less). I have to mindful of greens, fruit, gluten and some grains, and less sugar. I did the FODMAP diet, the nutritionist, lived on white rice and broth. Tried the mint pills and Imodium. Some helped, some didn't. I exercise and watch my diet. I want to offer support and encouragement to others suffering with this disease. And I want to say I am sorry for the suffering you are experiancing and i wish there was more help out there for all of us. Quote Link to comment Share on other sites More sharing options...
Divya Sharma Posted July 29 Report Share Posted July 29 IBS-D = Diarrhea predominant IBS Quote Link to comment Share on other sites More sharing options...
Debra B Posted August 7 Report Share Posted August 7 I have undiagnosed IBS C. I have had symptoms for many many years. I have bowl pain from gas production especially after eating dairy. And I have chronic constipation. As I am getting older it is getting worse. I am looking for a dr in the north Houston area to start with the breath test. I listened to the Dr. Mark Pimental interview, and a light bulb went off that maybe I could be helped. Any recommendation? Quote Link to comment Share on other sites More sharing options...
Ford Posted August 7 Report Share Posted August 7 Debra, hi there our symptoms sound similar. Can you post a link to the Dr. Pimental interview? Thank you and sure hope you find relief soon. Quote Link to comment Share on other sites More sharing options...
Jeffrey Roberts Posted August 8 Author Report Share Posted August 8 6 hours ago, Ford said: Can you post a link to the Dr. Pimental interview? It might be this podcast: Quote Link to comment Share on other sites More sharing options...
Claire Posted August 12 Report Share Posted August 12 IBS-D Quote Link to comment Share on other sites More sharing options...
CathyCat Posted August 12 Report Share Posted August 12 On 3/19/2023 at 10:37 AM, Nick L said: Hi Cathy - Thanks for the reply and sorry for my late response. Your case sounds absolutely dreadful and I'm really sorry to hear. Outside of the colonoscopy I received 15 years ago that "found nothing remarkable", I had a cat scan about a year ago that was also clean. Although I'm happy no colon cancer was detected, I was hoping they'd find something. They also did a SIBO test a couple of years ago that came back positive, although treatment didn't reduce any symptoms. I haven't gone back for another colonoscopy because, quite frankly, I'm not sure I can make the drive after consuming 128oz of a prescription laxative. Plus, I've become quite indifferent to going to Gastroenterologists. They never find anything, the medications don't help (Bentyl anyone?), and you get a bill for $500. The hope I mentioned in my previous post was regarding a peppermint oil tablet supplement called IBGard that I recently started taking 3x a day. It seems to help a little bit but not every time. I'm not sure how much hope remains at this point. I think I'll try a Gastroenterologist one more time and go through the colonoscopy drill again. More importantly, I want to revisit Viberzi. I had some success with that medicine in the past although that was several insurance plans ago and I'll need to verify my insurance covers it. Very expensive medication ($1500 before insurance). Thanks for your support. It's good to be around folks with similar issues. Nick Hi Nick: I regret that so much time has passed since you responded to my post (and thanks much, by the way). I hope you have made progress in this IBSC journey. Did you try Viberzi? Turns out my new primary care is kind of helpful! I don't think I will visit a gastro again any time soon. I have had more luck with other professionals who have some interest in the gut than doctors who have been specially trained to scrutinize poop and perform colonoscopies. My PC encourages exploration of the mind-body connection, saying there are not many stronger links in our beings than the brain-gut superhighway. So I'm reading books about chronic pain, ACES, forgiveness and so on. Plus doing breathing exercises and trying to re-program the way my insides work. I seem to be making a little progress but I want to make more. My PC and I had a discussion about medication too. I've been taking an SSRI for anxiety/depression for about 15 years, about the same time my IBCS roared to life. She encouraged me to research SSRIs vs TCAs, and lo and behold I found this quote in two papers from leading gut health medical schools: "The tricyclic antidepressants (TCAs) help with diarrhea and the serotonin reuptake inhibitors (SSRIs) help treat constipation." Imagine that! I have been taking a medication that may have contributed to IBSD for years! One that might help IBSC sufferers, but not me! No one ever thought to mention that! She is switching me over to a TCA, saying that class of medication works well for anxiety too, and I am hoping that move will make a difference. I've come to think that everyone suffering from IBS is a unique case. For some, like me I think, perhaps trauma is the leading cause. Others probably do have a strong negative reaction to certain foods. And for most of us, the cause is probably a mixed bag and relief may come from trying a bunch of different things and finding the right combination. That's what I'm doing now. Best regards to you...please reply if you're so inclined. I'm grateful for this platform but it does seem wonky. Months go by and I get no notifications in my mailbox, then I get a few in a flurry. Maybe I'm doing something wrong? Cathy Quote Link to comment Share on other sites More sharing options...
diana j Posted August 17 Report Share Posted August 17 On 9/17/2016 at 2:46 PM, Jeffrey Roberts said: Choose the type of IBS which best describes you. ibs d Quote Link to comment Share on other sites More sharing options...
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