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Very painful IBS


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I've been dealing with ibs for about 3 years now, and I feel like it is getting worse and happening more frequently. Every time I eat, it hurts, and I already eat super healthy, because I have to.

I've wanted to try things that can improve my ibs, but everything that can I can't have due to having acid reflux, gluten intolerance, and dairy intolerance. One thing that can help one issue, harms another.

I don't know if others feel this kind of pain, but when I go through an episode, I'm in the bathroom, on the toilet, with overwhelming dizzyness and nausea. I go through it in waves. My body goes through hot flashes where suddenly I'm caked in sweat as I go through these episodes. I've come close to blacking out a few times as the pain is immeasurable and it seriously feels like I'm dying because it hurts so much. I end up vomiting and having diarrhea at the same time and this goes on for about an hour till I'm exhausted from the excursion and have to stay home.

I was finally able to get into the doctor to see if they could help me figure out what was wrong, but he told me to just get on miralax and benefiber. I was so upset that he didn't take me more seriously since that only makes going to the bathroom easier, but doesn't ease the pain that I go through.

I am prescribed a medicine called dicyclomine that is used for IBS to help with the muscle spasms in my intestines, and it does help sometimes, but not always. Sometimes it makes it worse by speeding the process of the episodes up, so they are 10x stronger, but don't last as long. I consider it a double edged sword.

Please, if anyone goes through the amount of pain I feel, or if there is any way to help, please let me know. I know of the low FODMAP diet, but my acid reflux prevents me from having lots of those things. Is there anything I can do? Or do I have to live with this for the rest of my life?

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  • 4 weeks later...

I dont have the solution but I feel your pain.  I have been incapacitated lately by belly cramps all day long.  The noise coming from my gut sounds like a squeaking balloon.  It's gotten worse since I lost my job.  I've suffered off and on for years, since I was a teen.

Simethicone doesn't work and neither does peppermint capsules.  Those make me need to find a commode.

 I will go through bouts of cramping and then it goes into remission.  Haven't been able to pinpoint exactly how that happens, seems like it stops out of the blue.

 Exercise, like going up and down stairs takes the edge off.  Gets the gas out for me which helps with cramping.  Also, I avoid dairy during my active phase as it exacerbates cramping.  Sour cream is an exception; must be the probiotics.  Cant say that about yogurt though.  I hate yogurt and so does my gut.  Go figure.

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  • 4 months later...

I have the exact same episodes and actually passed out a couple times from the pain. The only difference is that I'm hot at first, then as the episode is ending, I get very cold. Ive also had diarrhea for the past year - only diarrhea with no solid poops. This happens no matter what I eat (I started not eating anything after a while) or the amount of physical activity I did. My PCP labeled it IBS and prescribed Immodium and Bentyl for the cramps. 

Went to a gastro and he did a colonoscopy and found nothing, so labeled it IBS. Wanted a second opinion and the next gastro ordered a CT scan and found large amounts of poop and a few other things that probably aren't related. He prescribed Linzess, so I hope that works. I literally wish for death during those episodes :(.

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I am so sorry you are in so much pain and that your body is reacting so strongly. You deserve a new doctor, one that will validate your suffering and your pain. There is absolutely more that an expert doctor or naturopath can do. This was a whack-a-mole situation for me where my naturopath and I have treated sibo, sifo, now gastritis and acid issues. It feels like we are peeling off layers of symptoms, a few at a time. I have had symptoms like yours but less intense for three years and have been actively working with this doctor since January. Do try the fodmaps diet if you can - it is very hard to follow advice online, pay for the monash app as it is worth it. I struggle with the more acidic or fatty fodmap foods so i make sure to balance each meal with rice or quinoa or potato to soak it up. It's a huge PITA. If the diet doesn't help, it's not going to solve the problem on its own and you need more treatments. For stomach acid/ heartburn alone, i take a supplement called GI Encap, I take two with every meal and I feel it when I don't. It helps build and maintain my mucosal lining, which i'm pretty sure my body is always trying to expel. Pepcid AC 20mg/twice daily has helped me as well (it's over the counter) but it wasn't enough on its own without gi encap. Hang in there and keep advocating for yourself. Finding my new doctor was a game changer for me.

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