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Small Bowel Overgrowth?

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LaurieEyeBee
LaurieEyeBee

Has anyone in these "gut" groups been diagnosed with "Small Bowel Overgrowth Syndrome?" (Also known as BOS.) My problem started 3 - 4 years ago with what I assumed was Irritable Bowel Syndrome, except I wasn't getting constipated. I noticed first that I was having lots of excess gas and it was unbelievably, indescribably foul smelling, and my poop was getting softer and softer and was always a bright yellow color. After awhile it got to the point that I'd be standing in the kitchen, feel the urge to go and not make it down the short hall to the bathroom. At this same time I'd get queasy and had chills every day (but no fever) and started losing my appetite. I felt very run down and clinically terribly depressed. Finally after a year of this I made an appointment with a gastro doc. When I described my symptoms he ordered all sorts of tests - stool samples, a colonoscopy, bloodwork - and everything came back normal. I thought my jeans were loose but found out I'd lost 20 pounds in a year without trying. Finally he decided to test me for BOS. I don't think he is necessarily a bad doc or not thorough but I later found out my symptoms were SCREAMING this diagnosis.

The test involves fasting and then several hours blowing into a tube after injesting a sugary laxative. They then graph how much of a certain chemical shows in your breath. My test was positive and he prescribed me an antibiotic called Xifican. (spelling?) A short course of this drug and I had a 100% reversal of symptoms. Unbelievable!!! A short time later I relapsed and he reluctantly refilled the medication once.

Several months went by and I was MUCH better, but knowing my own body I felt that things were still not right. At this point the doctor scoffed at me and told me two courses of this drug would cure this. If I wanted any more I would have to retake the test. I did so and was still positive for POS. ("Told you so, doc.") So I got my 3rd script for Xifican and have been pretty well ever since. I had gotten to a point where I didn't want to leave the house for fear I'd poop my pants - that poop moves VERY fast with POS. Although it is not necessarily diarrhea, I would get this too - once I had to jump out of the shower to sit on the toilet and it was just water pouring out of me.

The weight loss is because fat was not being absorbed into my body - it was staying in the poop and turning it yellow. The bad smell was bacteria - BAD bacteria. There are several reasons why someone would develop BOS, including antibiotic use, immune dysfunction, muscle disease, diverticulosis, and a high carb diet (I fall into every one of these categories). I've been faithfully taking a probiotic every day and eating as much yogurt as I can, but recently feel like it's come back, and it often does recur. I have an appt. with my PCP tomorrow morning as I've asked him to take over care of this for me - I don't think I want to go back to the specialist who scoffed at me.

Has anyone heard of this disorder or been diagnosed with it? I will never forget the tremendous relief when the medication helped.

0 likes, 5 replies

5 Replies

  • sam52768
    sam52768 LaurieEyeBee

    Posted

    Never heard of this but I am interested in finding out more about it. Is there any food that you can think of you have eaten that precedes the problems? I do not understand docs being so put out to prescribe something that helps or want to do anything other than operate.
    • LaurieEyeBee
      LaurieEyeBee sam52768

      Posted

      Hi Sam, I have been trying to think what the trigger may have been this time, but this thing tends to already sort of be in place before you realize it's back so it's hard to pinpoint. Carbs are very aggravating to this disorder and I do eat way too many carbs (I live cheap and unhealthy when it comes to food, sadly). I also do have diverticulosis, found in one of my colonoscopies, but it's never flared up. I also have inflammatory myopathy, a muscle disease that can affect any part of the body, as well as an immune deficiency for which I have to get IV gamma globulins. I unfortunately still get lots of sinus infections for which I have to take antibiotics. Any of these can trigger BOS. As I understand it the trouble happens when too many bad bacteria take over in the small intestine where they're not supposed to be.

      Because I was so nauseated from this and reduced to eating baby food, the doc did prescribe Zofran, an anti-nausea med. He would not refill it, even though I still get bouts of tremendous nausea out of the blue. My PCP has had no problem keeping this Rx going, and taking one occasionally is a lifesaver. I don't understand doctors either...I hope I make out okay tomorrow...thanks for the reply.

  • sam52768
    sam52768 LaurieEyeBee

    Posted

    There is an over the counter liquid medicine you can get for nausea. I cant think of the name of it and it would be deleted anyway. I would check for something non Rx. I think more research needs to be done in the area of bowels and intestines. It affects us more than we think. Maybe you can start a food diary and see what might upset your system. It would usually be within 24 to 28 hours to feel effects. I wish you luck in learning how to doctor yourself as a lot of us have had to do. Keep me posted with your progress.
    • LaurieEyeBee
      LaurieEyeBee sam52768

      Posted

      Just to follow up, I did see my doc day before yesterday. He agreed that the symptoms sounded like a BOS flare ("if it walks like a duck and quacks like a duck" - lol), and didn't see any reason to put me through another breath test when I've already shown positive twice for this syndrome, and we don't know when I'll be able to get scheduled for it anyway. He went ahead and ordered the medication, Xifaxin, 2xday for 2 weeks. However, this time my Rx insurance is balking at paying for it. It is very expensive, $500 for a 7-day supply. Not MY fault, not the DOC'S fault or the PHARMACY'S fault or even the INSURANCE company's fault. The fault lies with the greedy pharmaceutical companies.frown So we are now faxing papers back and forth, preparing for appeals, trying to justify the coverage (there is no cheaper alternative) while I walk around with e. coli making me miserable. That's all.

      Oh by the way. Because I've been on steroids since Xmas for an extremely bad muscle flare, the doc surmised this suppressed my immune system just enough for this to take hold again.

       

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