CathyCat Posted March 9 Report Share Posted March 9 For those with gall bladder issues—have you investigated whether you might have bile acid malabsorption? The Mayo Clinic has info on it here: https://www.mayoclinic.org/medical-professionals/digestive-diseases/news/identifying-diarrhea-caused-by-bile-acid-malabsorption/mac-20430098 My doctor says it occurs most often in patients with gallbladder issues, which I don’t have. He tried my on cholestrymine anyway. It didn’t help. I still have not found anything that works for my IBSD. Four colonoscopies, X-ray, CT scans, medications… Now trying hypnotherapy out of desperation. Cathy Quote Link to comment Share on other sites More sharing options...
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 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...
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