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Living With SIBO


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#1 Iris49

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Posted 06 September 2010 - 02:50 PM

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I am a 61-year old female with SIBO. This article contains graphic descriptions of bathroom issues, so if you're squeamish you'll want to skip it.In March 09 symptoms began as dizziness, vertigo, inability to regulate body temperature. In April, added nausea and fecal color of pale yellowish-green. In May, added projectile vomiting, putred-smelling gas, and foul-smelling watery diarrhea that sometimes evacuated without warning. In June, added lower back pain, fatigue, muscle aches, depression, brain fog, and painful rectal pressure. Started seeing doctors in June 09, saw 12 doctors total. Had Colonoscopy, Upper GI, MRI, CT, ultrasound, a dozen stool studies, many blood tests, urinalysis, Crohn's biopsy, Celiac test, and poison screening. No issues were found except my gall bladder was dead and was removed, and bleeding ulcers developed that cured with antibiotics. My underactive thyroid has been successfully controlled for years with meds. All symptoms raged. Was treated with Cipro, Z-Pak, Amoxacillin, and two rounds of Levaquin with no relief. Ate gallons of yogurt, probiotics, Pepto, Imodium-D, and Gas-X with little help. No improvement after trying diets including fat free, lactose free, and bland gall bladder diet. I was very sick for 16 months with all symptoms raging and exacerbated, lost 40 pounds, hair fell out, fingernails got ridges and sluffed off, unable to function without help. Spent 4 days in-patient and went to ER 3 times for IV fluids. Spent weeks in bed and nearly died from low blood pressure. Finally, my GI doc had me swallow a camera that took 5000 pics of my GI tract, and a doc at Johns Hopkins diagnosed SIBO. After 7 days of Xifanax, I finally felt like I wasn't going to die, but I wasn't well yet. After another 7 days of Xifanax, I felt great. I was symptom free for a month, then this week the killer backache returned along with alternating diarrhea and constipation. Chiropractor says fix the diarrhea, and my back will be fixed. GI doc prescribed Xifanax for life, but I'm afraid constant Xifanax will become ineffective. I am trying cyclical approach, and after three days of the magic pill, symptoms are almost gone. I'll continue Xifanax 4 more days. I can't survive another illness like that. I eat a regular diet and have good appetite, but when it's time to eat I feel like I'm starving to death again, and I'm plagued with insomnia. We need a cure!


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#2 Hester

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Posted 06 September 2010 - 04:24 PM

Ditto, ditto and more to all of it. I have been cycling through Tetracycline for the last year and it has been GREAT. Then I decided to go back to school and POOF! I am sick again. Not sure how to control it this time but feeling that weakness, brain fog, exhaustion and the yellow burning diarrhea with unbelievable tummy sounds!! I bet you can hear me across the room. So far the Tetracycline is NOT stopping the issues like last time. This is getting scary as, like you, I do not think I can live through 2 years of Hell again where I never leave the bathroom and cannot get out of bed. I truly felt like I was just getting my life back, even bought a Kayak and was enjoying the outdoors again. Now it's back. I have a new doctor at a teaching hospital and some more tests next week to look at "dumping" and motility. This is really a horrible way to live. I get so much grief from family members who tell me it is ALL in my head and I'm doing it to myself. I'd like to give them a week in my shoes. Really. People do NOT understand how serious this gets, how debilitating and how IT IS NOT IN MY HEAD!!! Thanks for sharing your story. Let me know what works for you. I was bad the last couple of weeks, not watching my diet and I am hoping that is the case but the grumbling, hot flashes, nausea and tiredness seem to indicate the overgrowth is back. . .

#3 Iris49

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Posted 06 September 2010 - 04:38 PM

Oh yes, I can hear you! Pun intended -So why is it so many docs think we're making this stuff up? And why in the world would we??? And the family - do I have stories, and they're not funny stories.I am really scared the beast will come back full force and take me out. I really felt like I would die, even brought my will up to date. This is scarey.I wish those docs would go to work shining shoes who tell us to go home and eat more yogurt. Gimme a break.

#4 searching4answers

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Posted 08 September 2010 - 03:11 PM

Ditto me too! People who don't have this have NOOOOO idea how excruciating it is to live with this. The embarrassment from symptoms. We need a SIBO awarness day or something because not enough is known about this. I've had almost exact experiences. And again i get the stress of going back to school now. I really thought i would be able to enjoy my senior year and i'm trying but this is always on my mind 24/7 and how can it not be. Noisy bowel and tummy, leaking gas from the end uncontrollably, and cant eat like a normal person. I've been through antibiotic treatment twice. 1st time "cured" me but came back 10 days later. 2nd round of antibiotcs this time twice as long but had no "curing" affect on me whatsoever this time. Follwing currently with probiotics that arent helping. When your SIBO is at it's highest with bacteria you really do feel like you're going to die and i'm tired all the time and get hot flashes or hace freezing hands and feet when nobody else is cold. What's the cure?

#5 searching4answers

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Posted 08 September 2010 - 03:12 PM

So why is it so many docs think we're making this stuff up? And why in the world would we??? And the family - do I have stories, and they're not funny stories.I wish those docs would go to work shining shoes who tell us to go home and eat more yogurt. Gimme a break.

Agreed. So most definately agree.

#6 Iris49

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Posted 08 September 2010 - 09:39 PM

And, I'm weary from putting on a happy face. I know my friends and family don't want to hear me say I feel bad again - or should I say STILL. They don't understand. They think they do, but they don't. Another couple of days of Xifanax on board. Yesterday was good, today wasn't so good. Slept with a bucket at-the-ready last night, just in case. What a roller coaster ride.

#7 Iris49

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Posted 08 September 2010 - 09:42 PM

Ditto me too! People who don't have this have NOOOOO idea how excruciating it is to live with this. The embarrassment from symptoms. We need a SIBO awarness day or something because not enough is known about this. I've had almost exact experiences. And again i get the stress of going back to school now. I really thought i would be able to enjoy my senior year and i'm trying but this is always on my mind 24/7 and how can it not be. Noisy bowel and tummy, leaking gas from the end uncontrollably, and cant eat like a normal person. I've been through antibiotic treatment twice. 1st time "cured" me but came back 10 days later. 2nd round of antibiotcs this time twice as long but had no "curing" affect on me whatsoever this time. Follwing currently with probiotics that arent helping. When your SIBO is at it's highest with bacteria you really do feel like you're going to die and i'm tired all the time and get hot flashes or hace freezing hands and feet when nobody else is cold. What's the cure?



#8 Iris49

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Posted 08 September 2010 - 09:43 PM

So sorry. It's bad enough to be older and have this embarrassing stuff, but to be so young and have this to contend with just isn't fair. Bless you. We need a cure!

#9 Marcus A

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Posted 09 September 2010 - 04:29 AM

Hello,I have SIBO. I was diagnosed at Cleveland Clinic by hydrogen/methane breath test. I have the constipation variation of SIBO. My symptoms started about 18 month ago when I has put on antibiotics for UTI infections. I developed reflux, gastritis, constipation and severe bloatig int he stomach and lower intestines. Air or gas constantly comes up my throat. I have a hard time passing gas and having BMs. At the Cleveland Clinic I took Rifaximin (Xifaxan)and was put on a low bulk diet. It has not worked to eliminate my symptoms. I need to take another breath test. I live in the Pacific Islands. I am wondering if anyone knows where I can find a hospital or clinic in Hawaii that does the breath test. Thank you.

#10 searching4answers

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Posted 12 September 2010 - 11:44 AM

All SIBO people! I found this site with foods we can actually eat after searching the internet for a year and a half. It has breakfast, lunch, dinner and dessert ideas. It's http://cavemanfood.b...1_archive.htmlI am so excited to try this! also there's a list of foods/spices you can and cannot have @ http://www.breakingt...illegal_a-c.htm

#11 Hester

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Posted 12 September 2010 - 08:13 PM

All SIBO people! I found this site with foods we can actually eat after searching the internet for a year and a half. It has breakfast, lunch, dinner and dessert ideas. It's http://cavemanfood.b...1_archive.htmlI am so excited to try this! also there's a list of foods/spices you can and cannot have @ http://www.breakingt...illegal_a-c.htm

Basically it is just eliminating breads, grains, complex carbs, and sugar. . . looks good, but too much dairy for me to eat some of the recipes. I like all the fish and nuts. Actually, that is what I eat now except I do eat four to five servings of fruit per day with some nuts.

#12 faze action

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Posted 13 September 2010 - 08:53 AM

Hello,I have SIBO. I was diagnosed at Cleveland Clinic by hydrogen/methane breath test. I have the constipation variation of SIBO. My symptoms started about 18 month ago when I has put on antibiotics for UTI infections. I developed reflux, gastritis, constipation and severe bloatig int he stomach and lower intestines. Air or gas constantly comes up my throat. I have a hard time passing gas and having BMs. At the Cleveland Clinic I took Rifaximin (Xifaxan)and was put on a low bulk diet. It has not worked to eliminate my symptoms. I need to take another breath test. I live in the Pacific Islands. I am wondering if anyone knows where I can find a hospital or clinic in Hawaii that does the breath test. Thank you.

Sorry I can't help you with a clinic rec, but have you had an upper GI endoscopy (or gastroscopy)? I have had SIBO for a number of years (D, not C), and I'm not sure that constant belching (or "air coming up your throat") is a typical symptom. You may want to rule out other things like H. pylori, etc. Also, false positives are possible with breath tests.

#13 searching4answers

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Posted 20 September 2010 - 08:57 PM

Just had visit w/the doc. In my case for SIBO that problems are stemming from the stool backed up in the intestines. So no matter what i eat it's going to create gas and even sometimes the sharp pain. The bacteria are having a feeding frenzy and there's not much that can be done to get rid of them until i get that stool moving out of the small intestine. I've been on the Specific Carb diet for 4 days and yes i felt a little lighter like carbs werent bulked weighing me down but as for my symptoms-NO CHANGE. So with the SCD you're basically eating alot of protien, no grains and he told me that it will make ur gas smell worse and with leaky gas i realized that's something i ABSOLUTELY DO NOT WANT. Makes sense right? Carnivornes like lions have stinkier gas. But i wasn't sure if i stuck with it if it would help. so i just flat out asked him if i should keep on it or not. He didnt really have an answer. He just said it wouldn't help or hurt, it was up to me. So i was like well just tell me that I dont need to and I'll drop it. So he did. And I dropped it and went home and ate some real food. yum.History: Done the antibiotics twice, 1st time worked then came back, 2nd time did nothing. Still on probiotic-doing nothing for me, and tried exercise, and diet changes- no difference in symptoms. Had rectal exam and everything there is normal. Hydrogen breath test positive for SIBO. Taking miralax everyday 2x a day. 2 different dates from xray show i'm still really backed up.Point being: symptom-wise it doesnt matter what u eat or if you eat, with SIBO you're still going to get the symptoms if you have stool backed up (of course certain foods might make it worse, but each of us know our own limits for that). So get rid of the stool then if there's still a problem something can be done to sweep out the bacteria.Advice for me was to go on a heavy dose of miralax when I have some days off, then stay on it for 6-12 months to get all the stool out from up there. That's no big deal because i've been taking 8oz of water per 1 cap in the morning and 1 in the evening anyways since like 4 months ago anways at their advice because constipation was my problem. So what's an inc. in dose for going to the bathroom more to get rid of this, and 6-12 months is nothing compared to feeling like everyday is forever with an illness? They say diarrhea is actually a good thing is this case.





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