1. < Digestive Health

Small Intestine Bacteria Overgrowth (SIBO)

Posted by jacque6977 @jacque6977, Feb 22, 2017

My wife, after years of suffering from debilitating nausea and fatigue, has finally been diagnosed with SIBO as confirmed by a hydrogen breath test. It is estimated the bacteria has had at least two years to grow and may be well established. She has started on Xifaxan, at $35 per pill, but it is estimated that elimination of the SIBO may take up to six months. Her day now starts with her waking up with nausea and when she has a cup of tea and toast in the morning she gets sick within fifteen minutes thereafter. Her sickness is accompanied by violent belching, and at times she regurgitates liquid vile. The only drug she has for nausea is Zofran which does nothing for her. Are there any other SIBO sufferers that are experiencing the same symptoms, and what are you taking to reduce the nausea?

Interested in more discussions like this? Go to the Digestive Health Support Group.

Gee Vee | @galy | Aug 23, 2017
In reply to @kanaazpereira "Hello @galy and @jmmb, I'd like to extend my welcome to Connect; we're so glad you've..." + (show)
@kanaazpereira

Hello @galy and @jmmb,

I'd like to extend my welcome to Connect; we're so glad you've joined this group.

I see that @saucy has shared some insights (thank you), and I encourage you to read through the past messages of this discussion thread, where you’ll hear about the experiences of @doron @lighthouseceliac @jacque6977 @decosmo @lizbee78 @melaniewa @janovr @azdrew @haighsue and others. Many of them have talked about diet, including the FODMAP diet and specific carbohydrate diet (SCD).

Since diet plays a significant role, I'd also encourage you to view this conversation, https://connect.mayoclinic.org/discussion/leaky-gut-constipation-and-gluten-free/ and I'm tagging @alina151 @jacquelinek1956 @clemlaa who have shared their experiences with SIBO.

Although it focuses on IBD, you may be interested in reading this clinical update by one of the Mayo Clinic gastroenterologists:
"Small intestine bacterial overgrowth is common in Crohn's disease patients who have undergone ileocecal resection or have strictures, fistulas or reduced intestinal motility. Ileal resection and Crohn's disease itself also prevent bile acids from being reabsorbed completely into the enterohepatic circulation, with resulting secretory effects in the colon. Mayo Medical Laboratories recently developed an assay for bile acid in the feces. Until now, a diagnosis of bile acid diarrhea has been provisional and treatment has been empiric." http://www.mayoclinic.org/medical-professionals/clinical-updates/digestive-diseases/management-of-refractory-ibd-starts-with-excluding-patients-who-dont-have-it

@jmmb, you mentioned MALS, so I'd like to ask one of our mentors, @kariulrich if she may have some insight as well?
@galy, I read your message in another discussion thread, and just wanted to let you know that I truly admire your positivity. Have you had a chance to visit the Lung Health group, https://connect.mayoclinic.org/group/lung-conditions/ on Connect?

Jump to this post

Thank you Pereira....I am reading with interest and empathy many of the comments others post...
From my brief experience diet and medication is controlling my SIBO but not negating it.
I am on Phase 1 of the SIBO diet of Nirala Jacobi (which I adhere to religiously except coffee and a bit of lactose free milk in it) and have done the antibiotics protocol twice (Rifaximin and Neomycin) and for my lack of motility so have tried all types of prescription drugs which have not worked....and will go alternative soon to see if that might do something...
I have a saying which helps me (I made it up)...I live life as through there is no solution yet I strive for a solution at all times.
This helps me cope with the daily life and get on with it...but never to strive for what might be.
I exercise nearly everyday which helps me focus and I do crafts to help me calm. Its really multidisciplinary.
I suffer boy do I suffer, I cry and I smile...
If any one of your mentors might have insight on Stomach paralysis or lack of motility I would be so grateful
And I would be happy to share limited insights as a patient with "pleasure" - I would prefer to share a drink with pleasure
Smiles
Galy

REPLY
concerned mtn. mom | @concernedmtnmom | Aug 23, 2017
In reply to @kanaazpereira "Hello @galy and @jmmb, I'd like to extend my welcome to Connect; we're so glad you've..." + (show)
@kanaazpereira

Hello @galy and @jmmb,

I'd like to extend my welcome to Connect; we're so glad you've joined this group.

I see that @saucy has shared some insights (thank you), and I encourage you to read through the past messages of this discussion thread, where you’ll hear about the experiences of @doron @lighthouseceliac @jacque6977 @decosmo @lizbee78 @melaniewa @janovr @azdrew @haighsue and others. Many of them have talked about diet, including the FODMAP diet and specific carbohydrate diet (SCD).

Since diet plays a significant role, I'd also encourage you to view this conversation, https://connect.mayoclinic.org/discussion/leaky-gut-constipation-and-gluten-free/ and I'm tagging @alina151 @jacquelinek1956 @clemlaa who have shared their experiences with SIBO.

Although it focuses on IBD, you may be interested in reading this clinical update by one of the Mayo Clinic gastroenterologists:
"Small intestine bacterial overgrowth is common in Crohn's disease patients who have undergone ileocecal resection or have strictures, fistulas or reduced intestinal motility. Ileal resection and Crohn's disease itself also prevent bile acids from being reabsorbed completely into the enterohepatic circulation, with resulting secretory effects in the colon. Mayo Medical Laboratories recently developed an assay for bile acid in the feces. Until now, a diagnosis of bile acid diarrhea has been provisional and treatment has been empiric." http://www.mayoclinic.org/medical-professionals/clinical-updates/digestive-diseases/management-of-refractory-ibd-starts-with-excluding-patients-who-dont-have-it

@jmmb, you mentioned MALS, so I'd like to ask one of our mentors, @kariulrich if she may have some insight as well?
@galy, I read your message in another discussion thread, and just wanted to let you know that I truly admire your positivity. Have you had a chance to visit the Lung Health group, https://connect.mayoclinic.org/group/lung-conditions/ on Connect?

Jump to this post

I have no experience with gastroparesis, but I followed a young person's blog who has it and there is a gastric pacemaker that some doctors place in patients. I gathered that you need surgery to change the batteries every year or two and it's not a perfect solution but it offered her some relief for longer spells. The doctors at Cleveland Clinic place these pacemakers in children, don't know if there is a Mayo solution for adults, but worth asking about??
I am sorry for your suffering and wish you the very best and lots of courage. This is a good group for sharing ideas.

REPLY
Kanaaz Pereira, Connect Moderator | @kanaazpereira | Aug 24, 2017
In reply to @kanaazpereira "Hello @galy and @jmmb, I'd like to extend my welcome to Connect; we're so glad you've..." + (show)
@kanaazpereira

Hello @galy and @jmmb,

I'd like to extend my welcome to Connect; we're so glad you've joined this group.

I see that @saucy has shared some insights (thank you), and I encourage you to read through the past messages of this discussion thread, where you’ll hear about the experiences of @doron @lighthouseceliac @jacque6977 @decosmo @lizbee78 @melaniewa @janovr @azdrew @haighsue and others. Many of them have talked about diet, including the FODMAP diet and specific carbohydrate diet (SCD).

Since diet plays a significant role, I'd also encourage you to view this conversation, https://connect.mayoclinic.org/discussion/leaky-gut-constipation-and-gluten-free/ and I'm tagging @alina151 @jacquelinek1956 @clemlaa who have shared their experiences with SIBO.

Although it focuses on IBD, you may be interested in reading this clinical update by one of the Mayo Clinic gastroenterologists:
"Small intestine bacterial overgrowth is common in Crohn's disease patients who have undergone ileocecal resection or have strictures, fistulas or reduced intestinal motility. Ileal resection and Crohn's disease itself also prevent bile acids from being reabsorbed completely into the enterohepatic circulation, with resulting secretory effects in the colon. Mayo Medical Laboratories recently developed an assay for bile acid in the feces. Until now, a diagnosis of bile acid diarrhea has been provisional and treatment has been empiric." http://www.mayoclinic.org/medical-professionals/clinical-updates/digestive-diseases/management-of-refractory-ibd-starts-with-excluding-patients-who-dont-have-it

@jmmb, you mentioned MALS, so I'd like to ask one of our mentors, @kariulrich if she may have some insight as well?
@galy, I read your message in another discussion thread, and just wanted to let you know that I truly admire your positivity. Have you had a chance to visit the Lung Health group, https://connect.mayoclinic.org/group/lung-conditions/ on Connect?

Jump to this post

Hi @galy,

We have a few recent discussions on gastroparesis which might interest you:
– https://connect.mayoclinic.org/discussion/hi-all-does-anyone-else-out-there-have-gastroparesis/
– https://connect.mayoclinic.org/discussion/linz-procedure/?pg=1#comment-65753

I would like to invite @nanny23 @danybegood1 @delicht @jlfisher56, @robatk17, @katmandoo @dandl48 @ryman @lizwhite80 @jafd, to this discussion as they have mentioned gastroparesis and/or esophageal issues on Connect, and may have some ideas about diets and foods that help. I'm also tagging one of our Digestive Health's mentor, @kdubois, to see if she has more insight.

REPLY
nobleone | @nobleone | Sep 12, 2017
In reply to @lizbee78 "I was diagnosed at the Mayo Clinic this past November with SIBO, small bowel damage, and..." + (show)
@lizbee78

I was diagnosed at the Mayo Clinic this past November with SIBO, small bowel damage, and Exocrine Pancreatic Insufficiency. After 25 years of suffering I am finally feeling well. The Mayo put me through a round of 3 different antibiotics to kill the bacteria. I was told to begin taking Align Probiotic daily. Probiotics are very important in keeping the bad bacteria from taking over. I include probiotic rich foods in my diet daily in addition to the Align, such as Kefir, yogurt, Kombucha, supplemented juice blends. I no longer really need anti-nausea medicine, but I used to take Promethazine, which I found to work better than Zofran. I also found that a simple Gas-X chewable would often help with belching and bloating. SIBO creates an excessive amount of gas. I hope this helps, and that your wife feels better soon!

Jump to this post

I went to a Holistic Dr. He put me on natural antibiotics. They are called CandiBactin-AR and CandiBactin-AR. This has worked for me. I was taking the other antibiotics and I didn't like how I felt taking them. That was from my G.I. Dr. I also did the low Fodmap diet for 2 was. I also did 3 rounds of Hydrochloride therapy. I am in my 10th week of doing this with 2nd round of natural antibiotics. Was not fun going through the die off process. Today I feel sooooo of much better.. I also take a drink called Inflamacore. It heals your stomach. It is a LONG healing process.

REPLY
julier123 | @julier123 | Sep 12, 2017
In reply to @lizbee78 "I was diagnosed at the Mayo Clinic this past November with SIBO, small bowel damage, and..." + (show)
@lizbee78

I was diagnosed at the Mayo Clinic this past November with SIBO, small bowel damage, and Exocrine Pancreatic Insufficiency. After 25 years of suffering I am finally feeling well. The Mayo put me through a round of 3 different antibiotics to kill the bacteria. I was told to begin taking Align Probiotic daily. Probiotics are very important in keeping the bad bacteria from taking over. I include probiotic rich foods in my diet daily in addition to the Align, such as Kefir, yogurt, Kombucha, supplemented juice blends. I no longer really need anti-nausea medicine, but I used to take Promethazine, which I found to work better than Zofran. I also found that a simple Gas-X chewable would often help with belching and bloating. SIBO creates an excessive amount of gas. I hope this helps, and that your wife feels better soon!

Jump to this post

I'm doing a similar regimen with my holistic dr...working well!

REPLY
Kanaaz Pereira, Connect Moderator | @kanaazpereira | Sep 12, 2017
In reply to @lizbee78 "I was diagnosed at the Mayo Clinic this past November with SIBO, small bowel damage, and..." + (show)
@lizbee78

I was diagnosed at the Mayo Clinic this past November with SIBO, small bowel damage, and Exocrine Pancreatic Insufficiency. After 25 years of suffering I am finally feeling well. The Mayo put me through a round of 3 different antibiotics to kill the bacteria. I was told to begin taking Align Probiotic daily. Probiotics are very important in keeping the bad bacteria from taking over. I include probiotic rich foods in my diet daily in addition to the Align, such as Kefir, yogurt, Kombucha, supplemented juice blends. I no longer really need anti-nausea medicine, but I used to take Promethazine, which I found to work better than Zofran. I also found that a simple Gas-X chewable would often help with belching and bloating. SIBO creates an excessive amount of gas. I hope this helps, and that your wife feels better soon!

Jump to this post

Welcome to Connect, @nobleone,

Thank you so much for sharing; this is what Connect is about: learning from one another's health journeys, struggles and experiences.
@jmmb @saucy @ginpene05 have also discussed the holistic approach to finding relief from such chronic conditions, and I hope they return with their thoughts as well.

@nobleone, may I ask if you would share a few more details? When were you diagnosed with SIBO? Has the FODMAP diet helped?

REPLY
clemlaa | @clemlaa | Sep 12, 2017
In reply to @kanaazpereira "Hello @galy and @jmmb, I'd like to extend my welcome to Connect; we're so glad you've..." + (show)
@kanaazpereira

Hello @galy and @jmmb,

I'd like to extend my welcome to Connect; we're so glad you've joined this group.

I see that @saucy has shared some insights (thank you), and I encourage you to read through the past messages of this discussion thread, where you’ll hear about the experiences of @doron @lighthouseceliac @jacque6977 @decosmo @lizbee78 @melaniewa @janovr @azdrew @haighsue and others. Many of them have talked about diet, including the FODMAP diet and specific carbohydrate diet (SCD).

Since diet plays a significant role, I'd also encourage you to view this conversation, https://connect.mayoclinic.org/discussion/leaky-gut-constipation-and-gluten-free/ and I'm tagging @alina151 @jacquelinek1956 @clemlaa who have shared their experiences with SIBO.

Although it focuses on IBD, you may be interested in reading this clinical update by one of the Mayo Clinic gastroenterologists:
"Small intestine bacterial overgrowth is common in Crohn's disease patients who have undergone ileocecal resection or have strictures, fistulas or reduced intestinal motility. Ileal resection and Crohn's disease itself also prevent bile acids from being reabsorbed completely into the enterohepatic circulation, with resulting secretory effects in the colon. Mayo Medical Laboratories recently developed an assay for bile acid in the feces. Until now, a diagnosis of bile acid diarrhea has been provisional and treatment has been empiric." http://www.mayoclinic.org/medical-professionals/clinical-updates/digestive-diseases/management-of-refractory-ibd-starts-with-excluding-patients-who-dont-have-it

@jmmb, you mentioned MALS, so I'd like to ask one of our mentors, @kariulrich if she may have some insight as well?
@galy, I read your message in another discussion thread, and just wanted to let you know that I truly admire your positivity. Have you had a chance to visit the Lung Health group, https://connect.mayoclinic.org/group/lung-conditions/ on Connect?

Jump to this post

Galy, I adore what you wrote: 'living as if no solution'. This is so interesting and profound to me and strikes a chord resonating inside me. Being an over achiever is interesting, I try with all my might to get well and my mind goes down slopes and keeps sliding down tunnels to get myself well and It's not a healthy wholeful way to live. For me I have a framework I like to live my life by: eat for nutrients, sleep and exercise and expose my brain to things that make me feel peaceful, laugh and learn. I cannot obsess for the solution. It's absurd to think I can begin to know how complex a body works so mysteriously. All I can do is listen to any symptoms (without obsessing) and stick to my framework then let everything else go and enjoy the life in front of me. <3. Thanks again for sharing your thoughts they have really helped me.

REPLY
clemlaa | @clemlaa | Sep 12, 2017
In reply to @kanaazpereira "Hello @galy and @jmmb, I'd like to extend my welcome to Connect; we're so glad you've..." + (show)
@kanaazpereira

Hello @galy and @jmmb,

I'd like to extend my welcome to Connect; we're so glad you've joined this group.

I see that @saucy has shared some insights (thank you), and I encourage you to read through the past messages of this discussion thread, where you’ll hear about the experiences of @doron @lighthouseceliac @jacque6977 @decosmo @lizbee78 @melaniewa @janovr @azdrew @haighsue and others. Many of them have talked about diet, including the FODMAP diet and specific carbohydrate diet (SCD).

Since diet plays a significant role, I'd also encourage you to view this conversation, https://connect.mayoclinic.org/discussion/leaky-gut-constipation-and-gluten-free/ and I'm tagging @alina151 @jacquelinek1956 @clemlaa who have shared their experiences with SIBO.

Although it focuses on IBD, you may be interested in reading this clinical update by one of the Mayo Clinic gastroenterologists:
"Small intestine bacterial overgrowth is common in Crohn's disease patients who have undergone ileocecal resection or have strictures, fistulas or reduced intestinal motility. Ileal resection and Crohn's disease itself also prevent bile acids from being reabsorbed completely into the enterohepatic circulation, with resulting secretory effects in the colon. Mayo Medical Laboratories recently developed an assay for bile acid in the feces. Until now, a diagnosis of bile acid diarrhea has been provisional and treatment has been empiric." http://www.mayoclinic.org/medical-professionals/clinical-updates/digestive-diseases/management-of-refractory-ibd-starts-with-excluding-patients-who-dont-have-it

@jmmb, you mentioned MALS, so I'd like to ask one of our mentors, @kariulrich if she may have some insight as well?
@galy, I read your message in another discussion thread, and just wanted to let you know that I truly admire your positivity. Have you had a chance to visit the Lung Health group, https://connect.mayoclinic.org/group/lung-conditions/ on Connect?

Jump to this post

And my experience with stomach paraylsis and constipation was frightening but it seems all over. When my health declined and gut issues blew up I had severe gastroparesis and doc wanted to put me on meds whose #1 side effect was it could stop your heart. I hesitated because I didn't have gastroparesis my whole life it had just started. So I decided to be strict on diet and see over time what happened. My naturopath said it could take 6months to a year or longer to heal and she was right. Whether I had SIBO, parasites, candida, histamine gluten intolerance, mast cell activation issues, other bad guys in my gut and lack of good guys, it didn't all matter I was sick from multiple factors and had to be very basic. Getting the right supplements and food in place was a tricky game but seems one year later my gut is running fast (no gastoparesis bloating belching or constipation). eating was strict on Elaine Gotschalls SCD diet (she was scientist who came out with diet in 1950's to heal her sick daughter). Before i found this I kept getting sick again and it was clear even 'what looked to be okay foods for me' like rice and potato were indeed beyond my ability to digest. Elaine was right. Once I gave up the hard to digest starch molecules my gut worked better. What seemed to help me the most was eating 24hr homemade SCD yogurt. My gut got much stronger eating this daily. The next piece of the puzzle was mayo figuring out I had issues with mast cells in my gut and I learned about histamine intolerance. Now I follow my five hand rule: no sugar, no wheat, no preservatives, limited specific dairy items, foods low in histamine and I am finally thriving.

REPLY
ginpene | @ginpene05 | Sep 12, 2017
In reply to @lizbee78 "I was diagnosed at the Mayo Clinic this past November with SIBO, small bowel damage, and..." + (show)
@lizbee78

I was diagnosed at the Mayo Clinic this past November with SIBO, small bowel damage, and Exocrine Pancreatic Insufficiency. After 25 years of suffering I am finally feeling well. The Mayo put me through a round of 3 different antibiotics to kill the bacteria. I was told to begin taking Align Probiotic daily. Probiotics are very important in keeping the bad bacteria from taking over. I include probiotic rich foods in my diet daily in addition to the Align, such as Kefir, yogurt, Kombucha, supplemented juice blends. I no longer really need anti-nausea medicine, but I used to take Promethazine, which I found to work better than Zofran. I also found that a simple Gas-X chewable would often help with belching and bloating. SIBO creates an excessive amount of gas. I hope this helps, and that your wife feels better soon!

Jump to this post

So since I was diagnosed with Non Hodgkin Lymphoma after a small bowel resection in July, I mostly spend my time trying to get my GI system working. I have had 2 more obstructions. The plan is for me to progress to a relatively normal diet while we treat the Lymphoma. I am fairly freaked out but dealing with it.
Thanks for your interest. Ginny

REPLY
nobleone | @nobleone | Sep 12, 2017
In reply to @lizbee78 "I was diagnosed at the Mayo Clinic this past November with SIBO, small bowel damage, and..." + (show)
@lizbee78

I was diagnosed at the Mayo Clinic this past November with SIBO, small bowel damage, and Exocrine Pancreatic Insufficiency. After 25 years of suffering I am finally feeling well. The Mayo put me through a round of 3 different antibiotics to kill the bacteria. I was told to begin taking Align Probiotic daily. Probiotics are very important in keeping the bad bacteria from taking over. I include probiotic rich foods in my diet daily in addition to the Align, such as Kefir, yogurt, Kombucha, supplemented juice blends. I no longer really need anti-nausea medicine, but I used to take Promethazine, which I found to work better than Zofran. I also found that a simple Gas-X chewable would often help with belching and bloating. SIBO creates an excessive amount of gas. I hope this helps, and that your wife feels better soon!

Jump to this post

I was diagnosed with SIBO 5 years ago from my G.I Dr. Did several rounds of antibiotics. Didn't help me. Wanted to put me on more. I decided against it. I just gave up on it. Two years ago I started feeling worse. All kinds of different symtoms. Achy joints, mood swings, depression, not being able to focus, couldn't sleep full nights, tired, sick stomach, and back pain. I just thought I was going through menopause. The biggest thing I was having was anxiety. That was so not me. My gyno wanted to put me on estrogen pill and cream. Did not want to take the chance of getting cancer from it. That's when I went to a Holistic Dr.He did a test on my hormone levels. They weren't that bad for the way I was feeling. We got to talking and I knew this Dr specialised in the GUT. Told him I had SIBO. It all clicked to him. Sibo has all the side affects I listed plus more. Did another breathe test. A normal reading was 20 and mine was 88.He also did blood work to see if I had any food allergy symptoms and did a poop test. Those came back good. I have been treating in for almost a year now. Just took another Breathe test and I was down to a 30. It's been a long and expensive process. Insurance doesn't cover Holistic Dr. At least mine doesn't. I had to pay for every test.
The Fodmap diet does work just really hard to stay on. I am very confident that this journey is about to end. SIBO takes a long time to treat. My heart burn is gone. I have regular bowel movements and my anxiety is gone. I hope u find relief cause I know what u are feeling. Good luck.

REPLY
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