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  • IBS? Or wildly misdiagnosed? Or something else?

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    Old 08-17-2017, 10:42 PM   #1
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    Unhappy IBS? Or wildly misdiagnosed? Or something else?

    I'm at my wit's end. I am a 17-year-old male who exercises VERY regularly (I play football) and eats a healthy diet, as background. For the longest time, I would wake up, and use the bathroom one time for the day. 95% of the time I would only need to go one time, no matter what and when I ate. That started to change, at first I went 3 times in the morning, still very manageable. It slowly crept upwards till I was using the bathroom 10 times a day. I always felt like I just wasn't quite done. I had no food intolerances at this time. I finally saw a doctor who said I had IBS-D, and put me on yogurt, and Metamucil, and had me remove fruit and juice from my diet (mostly anything with fructose). I started to rapidly improve, but then I caught Hand-Foot-Mouth disease which was misdiagnosed as Strep throat. I took Unnecessary antibiotics for 2.5 days before I realized I didn't need them. Immediately after I recovered from HFM I realized milk and cheese made me feel very nauseous. I had no idea why I would suddenly become lactose intolerant but life went on. Slowly my time in the bathroom crept up again and I began to have stomach pain and nausea all the time, I felt like garbage almost every minute of every day. After almost a year of this, I went to a dietician who had me do a "Whole 30" cleanse diet. I felt amazing. I was still in the restroom often, but after eliminating gluten, corn, milk, and soy I felt 1000x better and my pain was all but gone. After the diet ended and some experimentation, I discovered soy did not bother me but all three others did (Gluten was assumed I never actually tried it). Throughout the ordeal I was tested for almost everything. I came back negative for everything under the sun, there was no blood in the stool, no Celiacs (I was eating gluten intensive for years during the test, it was before the elimination diet), no parasites, no bacteria, no anything. I was healthy according to tests. I continued on with occasional pain from accidentally consuming triggers, but the consistent symptom being stuck in the bathroom all the time. It became a constant feeling of having to push very hard and not being able to get it all out. Recently my doctor said I was most likely constipated, not having diarrhea and had me do a cleanse similar to colonoscopy prep. I was mostly pooping clear liquid by the end of that, which meant all the stopped up poop was out of me. She said that plus a fiber filled diet which I adhered to should help me go once a day. At this current time, I still visit the bathroom nearly all day, having bowel movements that feel urgent, then take forever to come out, even whilst eating fruits and vegetables with no trigger foods every day, and taking a fiber supplement. Im a kid, I have friends, and a girlfriend. This seemingly undiagnosable and unfixable mess has left a sour taste in my mouth and nearly defined the last two years of my life. Nobody can recommend anything that helps with the excessive trips to the bathroom, my stomach can no longer handle many foods since the antibiotics. This is my hail mary pass that someone sees this and notices an inconsistency and it's something I can fix and move on with my life. Any help and suggestions are greatly appreciated, thank you so much.


    Extra Info: I eat fermented foods every day, including Kefir and Kombucha. I take VSL #3 as advised by my doctor, I have taken probiotics for a long time now. I mentioned I get a lot of exercise, in addition to that I drink a huge amount of water. I avoid my trigger foods like the plague.

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    Old 09-30-2017, 02:04 PM   #2
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    Re: IBS? Or wildly misdiagnosed? Or something else?

    Hi! I'm so sorry to hear about what you're going through but I can totally relate. I've had a severe IBS-d for over 15 years myself. Mine actually started when I was around your age. I was also diagnosed a few years ago with SIBO (small intestinal bacterial overgrowth) which has further complicated my symptoms. I too have taken many rounds of Xifaxan with no success.

    Have you been tested for SIBO (tested via breath test)? Long story short, if you have SIBO both the fiber intake and the probiotics Can really aggravate symptoms and are not recommended. A low fodmap diet or low fermentation diet is generally recommended. Personally I have found that I can't eat any grains, dairy, sugar, soy, starch or legumes. Everyone has different tolerances and trigger foods of course but for me I found the most successful way to figure out what was setting me off was to go on a very strict elimination diet. I should also mention similar to ibs there are people with SIBO-c (chronic constipation) and SIBO-d (diarrhea). These diagnoses are fairly new and treatments are still emerging but you may want to look into it further. You can find info and "virtual" SIBO support groups if you search.

    If you still have chronic diarrhea attacks - Have you tried bentyl or levsin? They are two common rx medications that can help with the cramping and urgency. Levsin and imodium together have helped me. My most recent doctor also mentioned Viberzi. I haven't tried it yet, but I'm considering it. I have read on some support groups that some ibsd patients have had success with it though some side effects have concerned me. One other medication I had some luck with for almost 2 years was cholestyramine (also known as questran). You may want to ask about that. It is an off label use to treat chronic diarrhea.

    I hope you feel better soon.

    Last edited by Tweety22; 09-30-2017 at 06:40 PM.

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    Old 09-30-2017, 06:24 PM   #3
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    Re: IBS? Or wildly misdiagnosed? Or something else?

    Have you had a colonoscopy done yet?

    Stool sample testing?

    It's all a matter of perspective!
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