Short Gut Syndrome Parents' Support Group
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February 27, 2010
10:30 a.m.

Taylorsville Library
4870 S. 2700 W.
Salt Lake City, UT
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Bacterial Overgrowth

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By: Jess          (8:38 PM 08/20/2010)
Hey everyone
Does anybody else out there have as many problems with bacterial overgrowth as we seem to? We've had 16 septic infections stemming from this but have recently discovered Primal Defense, which contains good bacteria. It actually seems to be working and has even helped slow down my daughter's stools.
Re: Probiotics
By: seth          (9:01 PM 10/15/2010)
curious to know if this is still working for you. we have had numerous overgrowth issues. our problem tended to be vomiting alot. vancomycin for long periods of time was the solution, but thats a catch-22.
By: courtneyd          (2:57 PM 01/13/2011)
We have tried several different Probiotics and we haven't seen tremendous improvement with any of them. Is the Primal Defense still working for your daughter? We also cycle our son on antibiotics, he gets 2 weeks on Gentimicin and 2 weeks off. Do any of you cycle antibiotics? If so which ones?
Re: Probiotics/Antibiotics
By: jessica o          (9:22 PM 09/20/2011)
my daughter has this problem also. she was on gentamycin for a while. the drs also will swtich her to rifaximine for the first 2 weeks of the month. they have also used flagyle for a week once a month but at different times. the drs can do a biopsy on the fluid in the small intestines to see which type of bacteria is more prone and can go from there.
OMGosh, I could write a BOOK on this.... yet with very few answers. :(
By: Nick's_Mom          (12:22 PM 02/04/2011)
I'll inroduce myself and my son in a moment under that different thread, but right now I wanted to discuss the bacterial overgrowth.

Recently (May 2010 - Oct 2010) my son was hospitalized over a dozen times for his CO2 dropping too low. A couple days of IV hydration, he was back out. Then would soon relapse. It's thought to be due to bacterial overgrowth, which we've battled for the past 6 years. He was rotating antibiotics, but then did well on the probiotic Florastor for 2 years. Now this. He doesn't seem to be responding to antibiotics well this time...... neomicin, xifaxin, keflex, cipro, flagyl..... I'm sure I'm missing some. Every time his CO drops, his belly is distended. Sometimes he has the really smelly poos and gas, but not always. Anyways, he now has a PICC to get his nightly IV hydration. We've tried stopping this once, and 2.5 weeks later he relapsed. So he went back on. We're about to try the probiotic VSL3. Anybody ever try it?

I've never heard of Primal Defense.... but I'm doing a bunch of research on it now! :)

I also just had him tested for his thiamine (vit b1) levels. I thought for sure that was the answer. He had so many symptoms of that being low..... but results came back thismorning as normal. (just throwing that out there if anybody else wants to try testing for it)
Re: Low CO2 levels dropping dangerously low
By: joelsmom          (10:41 PM 08/31/2011)
Hi~ I'm glad I ran accross this support group, my son is 4 and has SBS since birth. A few weeks ago he was admitted due to dangerously low CO2 levels. Normal is between 22-31 he was an 8. His skin was somewhat gray, I had a hard time waking him up from a full night sleep and then couldn't keep him awake. by 11:30 am I called his pediatrician and were admitted that day. They can't figure out why his levels dropped so low as he's never had any trouble with it before. I'm seeing his GI team in Nebraska the week after next and they are testing for bacterial overgrowth. Have you found out any reasons why their CO2 levels drop so drastically? thanks for the information... What have you used to help.
Dang Bacteria!!!
By: skysmom          (5:28 PM 02/07/2012)
Hi! My daughter is 6 months old, was a gastroschesis baby which turned into short gut during her surgery the night she was born. It is so difficult trying to figure her out, one day she is eating great and we are ready to advance her feeds and then the very next she is so bloated (or doctor word distended, I HATE that word, probably because I am just sick of hearing it), she vomits a little and just doesn't want to eat. The doctors say it is bacteria overgrowth but none of the medicines seem to work on her. Bactrum and flagyl are not strong enough and augmenton caused her to end up back in the hospital because it just tore through her. We are about to start gentromycin and I am so nervous. Have any of you recently had any success with probiotics, other antibiotics, or any natural remedies? I have read that peppermint oil, garlic oil, and grapefruit oil are supposed to help but our doctors seem very reluctant to try any of these natural remedies and since she is only 6 months I don't think I should try them on my own. Any advice would be greatly appreciated!!!!
Drop the CO2 every 4 weeks!
By: Tana          (7:37 PM 06/14/2012)
Boy have we had a year of it! Bacterial overgrowth is definitely the bane of my existence, but our real problem has been with this CO2 drop. My 4 year old has been hospitalized 8 times for a dramatic CO2 drop which causes her to basically appear drunk. She stumbles and has slurred speech. She even changes her behavior and becomes very mean. We have become very adept at recognizing these symptoms, so we go to the hospital get fluids with Sodium Bi-Carb in it for a couple of days and we are out for about 3 weeks then here we go again. It has been sooooooo frustrating. Here is what we are finding out. We believe we are facing a Recurring D-Lactic Acidosis cycle. Apparently this is a rare complication in SBS kids. Most doctors don't check this regularly. It does start with bacterial overgrowth, but it also has to do with the way a SBS kid handles carbohydrates. Apparently they end up setting in the colon and fermenting because most SBS kids do not have enough small intestine to digest them. Also, anything with lactate can promote D-Lactic growth. So we will not be using Cuturell or any other probiotic that has Lactobacillius, and almost eliminating dairy at this time, eventhough we have never eaten much dairy other than 2% cheese. Also, we are cutting the carbs completely for 3-5 days. This is still a work in progress. Most of you parents understand how your life often feels like a science experiment. We try this and try that and pray all the way. The way I understand the cutting of carbs which feed the bad bacteria, allows the antibiotic to do a better job of cutting down those bad colonies of bacteria, and the cutting of lactobacillius and other lactates help to get rid of that d-lactic acidosis so that the child does not drop their CO2 in the osmotic exchange of the blood stream. So, if you are experience recurring CO2 drop ask your doctors to take a blood gas and check the D-Lac acid, not just the Lactic acid. This will help to determine if your child has D-Lactic acidosis. Hope this helps someone!
Bacterial over growth regiment
By: MrsFitz          (9:26 AM 01/04/2013)
We too are dealing with that. My daughter is still in the nicu she is 4 months old on the 5th. she has had 3 surgeries and each time after her surgeries it is like 3 weeks post op she gets sepsis. So what we are trying is a antibiotic regiment. We are doing one week of flaggel, off one week, one week of agumentin, off one week, then one week of a probiotic. We are now officaially 4 weeks post op and we have not had sepsis yet. So I am praying this will work. My daughter had ileal atresia. Her intestins were not connected when she as born so we have had a reconnection surgery after she was born, at 2 months she had zig zag surgery where the fix her dialated bowel and gave her more length, and then we had a feeding tube with a fundo put in 4 weeks ago.
By: Greg          (9:37 PM 04/20/2014)
We were on vancomycin and Gentimycin for 4 months until my son's intestines could be re-connected due to recuring e-coli. He had been doing well and all the docs commented on how he was exceeding all their expectations. Recently, he outgrew my wife's capacity to provide breast milk for his entire diet and we had to make the switch to formulas. We are off of try #1 and using hypoallergenic now. Probably will go to prescription soon where everything is in it's elemental form. We keep thinking it is his formula, but the docs keep insisting that it is a bacterial overgrowth. We had not had this concern until recently and all I've read here makes it sound like it could be a long road. They are talking about trying the elemental formula to be sure it is not protein allergy related. They give flagyl for bacteria--we get diarreah. Now we are putting Gent in his J tube (on the heels of 14 dys of intravenious Gent for a central line infection) and ta-da---we get worse diarreah. Now some blood is showing in small amounts in some of his stools. I thought it was the formula all along. Some days it feels like the docs are clueless, but I am trying to trust their expertise. Todays via phone reccommendation was a venious saline bolus and replacing his enteral feed with Pedialyte. Hoping things smooth out for him soon. I think his stools have been water for over a month now.
Re: Scary
By: Baby Aiden          (11:30 AM 04/29/2014)
Hello Greg,

Please see my post below named "Poster Child for C-diff & bacteria our Doctor says!"
I think our situation is very similar and maybe our story can provide some helpful information.

-My son also had blood in his stool...when he was very symptomatic with c-diff. Have they tested your son for c-diff?
Poster Child for C-diff & bacteria our Doctor says!
By: Baby Aiden          (11:22 AM 04/29/2014)
Doctors at Boston Children Hospital have saved my son. Aiden was born with Gastroschisis 11 months ago, which turned into severe Short Gut Syndrome. Currently, he has a Broviac catheter that is feeding him TPN nutrition and he is also receiving Omegaven(Omega 3 fatty acids) to counter act the damage the TPN
causes to the liver. Omegaven is not FDA approved YET, but hopefully it will be soon. This Omegaven is the reason why my son is here today!

On top of everything else, we have been battling with c-diff and bacteria overgrowth. We have done all the antibiotics that our doc recommended, but have also decided to add our own natural spin on things with our docs approval.
Because I no longer produce breast milk, we have switched over to an Organic Formula called "Baby's Only". I have done extensive research in comparing all formulas and this seems to work best for us. I also add 10 ML of Aloe Vera Juice to his formula (diluted with 1 drop of stevia as a natural sweetener). Aloe Vera is good for many different things, but we use for inflammation purposes. We also add 4 drops of grapefruit seed extract to his formula (natural anti-bacterial). This combination seems to work for us with keeping him from vomiting so often...but we still have a long way to come. We have recently added "Raw probiotics for kids" which also has a Organic fruit & veggie prebiotic blend as well as the probiotic once a day to his formula. Due to my son having a Broviac catheter, our Doctors have warned us of the possibilities of getting a line infection because of the live bacteria in probiotics. Currently, we are looking into a procedure called Fecal Microbiota Transplantation (FMT) and consulting with ours GI Doctors in BOS to see if this is something that would be beneficial for our son, to replenish the damaged flora and hopefully significantly improve and/or get rid of the colonized c-diff and bacteria over growth. Let's hope this is something that will work for SBS as it is also not FDA approved. Wish us luck!!

Re: Poster Child for C-diff & bacteria our Doctor says!
By: Greg          (10:02 AM 07/26/2014)
Thanks for pointing me to your post. Yes we did look into C-dif and they told us it was not C-dif in our case, but bacterial overgrowth nonetheless. We are still fighting with it, but have traded out Gentemycin (Which we suspected he was becoming tolerant to) for a different drug. Flagyl works best for him, but they tell us it needs rotated to stave off building a tolerance.
Our cases are indeed similar, as we too used Omegaven. We were fortunate to get his central line removed 3 weeks ago and we get to see if he can tolerate enteral feeds alone without the intravenous ones and still retain his weight. We are holding our breath that that chapter is behind us. Still seeing blood in his stools, but hopeful that the change in drug regimen will help. I hope this reply finds your family in a better place than they were before.

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