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Feeling down could use some suggestions

  • By Great2beme

    Hi all
    I am new here and I am a pretty positive person despite 20+ years of severe IBS-d ( since I was 30). My problem started about the same time as I developed PTSD from a very abusive marriage. I got out of the relationship but as anyone who has been in this type of situation can attest the abuse only gets more violent after the split. My PTSD has actually gotten much better over the years and I no longer have panic issues though at times I still have some issues with insomnia due to hyper vigilance. But overall I am a pretty balanced and happy person.

    I have been happily remarried for about 15 years and have been dealing with IBS-D pretty well until about 3 years ago. I had pretty much figured out the fodmap diet instinctively pretty quickly because most of those foods are killers for me and will land me on the T for hours on end. I have blessed in the fact I do not get cramps or pain like some others. Just that horrible feeling and i am rushing to the restroom. Up until 3 years ago I was teaching. I would wear male incontinence pads backward(they just seemed more absorbent and had less leaks) so just in case I did not make it in time. But I my boss knew and put me in the only classroom that had an adult restroom in the room and since I taught KG I always had an Assistant in case I had to “run”.

    I have tried all the meds i have heard mentioned here and a few others. I can not take any of the anti-depressents because they give me insomnia something fierce. Bentyl was the same. I tried off label use of Welchol (a medication for Cholesterol that absorbs bile ) And that helped for a while but it started causing me to bounce from D to C in even low quantities and that is soooo much worse and caused internal bleeding.

    But 3 years ago even as the PTSD came under control the IBS when insane. I have not had a D free day in years. Imodium no longer helps. And it has become so acidic my rear is literally burned from the constant problem. I have had to stop working out of the home(i work online for chump change now). I can not risk not making it to the restroom and having the acid burn get worse it anymore so pads are out of the question.

    “staying Hydrated” has become an almost impossible task. I think I would almost have to drink 3 gallons a day to make up for the fluid loss of having D 7-8 times a day. I now have various vitamin deficiencies due mal-absorption. The vitamin issues have caused painful muscle spasms in my legs and now I have nuro and breathing symptoms also that may be related to the dehydration.

    I had a colonoscopy at gastro about 10 years ago when they officially decided it was IBS-D and sent me packing back to primary with no advice or solutions. I am planning to have another this year. I am also planning on switching doctors for a new perspective and I hope some solutions, but that has not helped in the past. I live in GA and the fact is any decent docs here are taken up by the CDC. Of the doctors that are accepting new patients in the area far to many have board actions. The few good ones are never taking patients.

    I am just lost. I was hoping for some advice. My main advice is a little embarrassing. Has anyone else had the burned bum issues and is there any solution. Vaseline seems to make it worse not better as do diaper rush ointments. Any other meds that help. Diet just does not work anymore. Though some foods make it worse, nothing makes it better. I have eaten nothing but rice for days at a time and still the problems persist. I feel like I am at the end of my rope.

    Just feeling lost. The funny thing is IBS has disabled me. I can’t do anything anymore. My life is tied to the restroom. Yet despite that my doctors act like nothing is wrong because I am fat. I am fat because I am ALWAYS hungry because everything i eat goes right through me. And to be honest since All of my weight is in my stomach I suspect a large part if it is simply bloat. My doctor actually acted shocked to see the sores on my bottom when she did my last pap. I asked her what she expected after years of D. I think she thought I was lying all this time. In her imaginary world if I really had IBS D I would have to be skinny.

    Sorry for blowing off steam I just feel lost and I am soo tired of feeling like this.

  • By Chris Hall Keymaster

    Hi, @great2beme – welcome to the site. We’re so glad you’re here! I just wanted to say that you never have to apologize for venting. That’s what this forum is for! It certainly seems like times have been troubling, and I’m so sorry to hear that you had to endure that kind of abuse. That’s just awful. So glad you’re in a better situation now.

    Figuring out diet management can be really difficult. Have you ever considered consulting a dietitian to develop a personal diet plan? I really hope you’re able to find a new doctor who understands that IBS isn’t made up. Hope you’re having a good day so far! – Chris, Team