Craig Posted November 1, 2022 Report Share Posted November 1, 2022 I'm looking for a support group for my IBS-C. At times, when the IBS-C flares up, I fall into a depression that scares me. I do take daily medication for clinical depression, and it is very well controlled. My IBS-C, however, flares up at least once a week and is unpredictable. The flare-up usually triggers a depressive episode which is the scary part of the condition. I take Amitiza twice daily I have been diagnosed with IBS-C for over two years and am also lactose intolerant. I take a lactose enzyme tablet when I consume dairy and often the tablet doesn't seem to help. Bloating, gas, and diarrhea result. I'm retired and had hoped to travel. The IBS-C has stopped that. I wouldn't characterize myself as housebound, yet I am always aware of where the bathrooms are when I'm not at home. My spouse is very patient and understanding, for which I am grateful. I live in Central PA and participate in the IBS clinic at the Penn State Medical Center in Hershey. The staff at the clinic have had prescribed an endoscopy, a colonoscopy, and a gastric-emptying study. I do have gastroparesis. The endoscopy and colonoscopy found nothing related to my IBS-C. I'm looking for supports I can use when the depression caused by my IBS-C hits. Thanks for reading my post! Quote Link to comment Share on other sites More sharing options...
Jeffrey Roberts Posted November 1, 2022 Report Share Posted November 1, 2022 Hi Craig, Thanks for sharing your story. I'm sorry to hear how flaring emotionally affects you. IBS can be a pretty lonely illness. It's good to hear that you have a supportive spouse. I'm lactose intolerant too and I really just stay away from lactose completely. I only take the lactase enzyme if I feel I might have inadvertently had some lactose. I think it's because I have the same side effects as you even with the enzyme. I truly understand how IBS prevents you from traveling. It can be done with lots of planning and a more open mind to roll with the bad stuff and live for the good stuff. Have you considered talking to a therapist about your fears and depression? The FDA approved a new digital app for Cognitive Behavioral Therapy to treat IBS. The app is from Mahana Therapeutics. You can read about it here, https://www.mahana.com/treatments/ibs It's difficult to find a therapist that understand the gut, but I have found it very helpful for managing my thoughts to realize that I'm going to have bad days. I'm also going to have good days. Welcome to our community! Jeff Quote Link to comment Share on other sites More sharing options...
DJD Posted January 17 Report Share Posted January 17 Craig and Jeffrey, I am new to this support group and was diagnosed with IBS when I was 18, before they had sub groups. I’m now 48! I suffer from what today is called IBS-C. I also suffer from anxiety and depression that 100 percent is caused by IBS. Then again, it’s fair to consider that anxiety and depression may have started IBS. Nevertheless, all my anxiety and depression today is IBS related. I worry about it, and it’s various effects on aspects of my daily life. I do not feel right unless i have a bowel movement in the morning. On the days that i do not, I’m miserable. I wanted to let you know i relate to the mental anguish that IBS causes. About a year and a half ago i was having problems with regularity and it caused such anxiety that something happened in my brain and i was in a state of panic for about a month. I couldnt eat. Couldnt sleep. Couldnt have reg bowel movements. It was only when my old psychiatrist got back to the country and prescribed an anti anxiety med that this panic ended and i got my life back. I’m on anti depressants and have access to my ant anxiety pills when needed, which i use when things just start getting out of hand. I can share some tips on how i get by daily if i get a response. Again my first day on. Not sure how this works Quote Link to comment Share on other sites More sharing options...
Jeffrey Roberts Posted January 18 Report Share Posted January 18 Thanks DJD for sharing your story. Glad that you are finding some relief from the anxiety and depression. The added benefit of a certain class of antidepressants is that they can also help relieve constipation. I truly do understand that your anxiety and depression may have caused been your IBS. IBS is tough to have to deal with. I'm not sure everyone understands that. Quote Link to comment Share on other sites More sharing options...
DJD Posted January 18 Report Share Posted January 18 Hi Jeffrey nice to meet you. You are correct, most people don’t understand IBS. At 18 i didnt understand it. To quote my younger self after a bunch of tests, “the doctors don’t know so they gave it some stupid name” Thankfully i have a supportive wife who is somewhat of a therapist- however, she doesn’t have any stomach problems so she doesn’t fully get it. how many ibs patients have heard, “it’s all in your head” Quote Link to comment Share on other sites More sharing options...
Jeffrey Roberts Posted January 18 Report Share Posted January 18 34 minutes ago, DJD said: how many ibs patients have heard, “it’s all in your head” Well, there actually might be some truth to this now that the brain-gut axis has been studied more. IBS has always been characterized as a Functional GI Disorder. The Rome Foundation has changed this to Disorders of the Gut-Brain Interaction (DGBIs). Still, we do hear that many doctors aren't aware of the gut-brain component and make patient's feel like all of their problems are caused by their own brains implying a self-imposed psychological cause. We need better awareness and education for patients and healthcare professionals. Quote Link to comment Share on other sites More sharing options...
DJD Posted January 18 Report Share Posted January 18 I couldn’t agree more. So it’s strange. When they said “it’s all in your head” they were probably right…. Though they meant it in a dismissive way. Quote Link to comment Share on other sites More sharing options...
Jeffrey Roberts Posted January 18 Report Share Posted January 18 Yes, that's the impression that I get when doctor's suggest that. With that in mind, there is also research being conducted by Dr. Mark Pimentel at Cedar Sinai in Los Angeles that is in a very different direction. His focus is on SIBO and a bacterial imbalance perhaps as a cause for some patient's IBS. IBS is complicated and more than a suggestion that it's all in our heads. Quote Link to comment Share on other sites More sharing options...
Craig Posted April 1 Author Report Share Posted April 1 I'd like to know other folks' experience with Mahana. I tried the program for about ten days and then got caught in a loop where I was asked to share my email address to sign in. When I did this, I received an email about fifteen minutes later, clicked on the link provided, and was back at the screen where I was asked to share my email address. Staff at Mahana said I needed to download the most recent version of the software, which I did, and I was caught in the loop again. This happened another time. I am requesting a refund from Mahana because, while IBS is its own frustration, I don't need the frustrations of what seems a bad software program. I look forward to hearing about other folks' experience. Quote Link to comment Share on other sites More sharing options...
Jeffrey Roberts Posted April 1 Report Share Posted April 1 That doesn't sound good Craig. I agree that would be very frustrating on top of dealing with IBS. Quote Link to comment Share on other sites More sharing options...
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