SIBO and Ileostomy: Tips and Advice Needed

Hi everyone,
I was recently diagnosed with SIBO and would love to hear from anyone who has had SIBO with an ileostomy. Any tips or advice on managing both would be really appreciated.
Thanks in advance!

Small intestinal bacterial overgrowth? SIBO. Never heard of it.

How do you feel about this diagnosis, which I read as similar to IBS?

The doctor explained it like this: she said that my microbiome in my colon is gone since my ileostomy surgery, and my small intestines are working hard to take over and produce the bacteria I need to keep me healthy. The problem is it's doing too much too soon, and that led to SIBO - small intestinal bacterial overgrowth.
SIBO causes nausea, sickness, bloating, slows transit, but the worst is that the small intestines are supposed to absorb nutrients from the food we eat, but in my case, the bacteria overgrowth is blocking that and stopping the absorption of nutrients.

I was put on a course of antibiotics, but the doctor said it can take as long as 18 months to heal from SIBO.

I was hoping to find some tried and tested tips for faster healing, but my thoughts now are that this isn't as common as I imagined it to be.

Hi. Well, thank you for explaining. Don't give up. You will find people here if they have it.

I mean, it doesn't sound too common. If it were, we would hear more about it.

I think the issue was when you said you were doing too much too soon? That caused SIBO.

If you feel comfortable explaining what that means, others would be educated and learn what not to do.

This is a rare symptom because many of us have had their colon removed, yet don't suffer from SIBO.

Thanks in advance. Just sit tight, hon.

Hi Warrior

Allow me to clarify, I meant my small intestines are trying to do too much too soon. Instead of slowly building up a new microbiome, it's been overloading, which caused SIBO—small intestinal bacterial overgrowth. I can control how much I do or don't do, but I haven't figured out how to control my intestines yet 😂

I haven't found any helpful answers yet; I'm still hoping that someone will chime in with some experience and advice here.

Living with Your Ostomy | Hollister

They will chime in if they are out here. Good topic starter to catch their 👁 eye.

Hmm 🤔. An overactive small intestine. 😟

Hello Clara, I've had an ileostomy for 41 years and have managed to stay healthy and maintain a good weight until 3 years ago when I was diagnosed with SIBO by my gastro doctor. I started losing weight and couldn't figure out why, so my doctor did an endoscopy. He thought it was Crohn's, and so did I, although I wasn't having any symptoms of recurrent Crohn's like in previous years. The pathology report came back positive for H. pylori. I was prescribed the gold standard treatment of Flagyl, doxycycline, and Prilosec. I could not tolerate the Flagyl, so I was given amoxicillin, rifabutin, and Prilosec. That regimen worked as stool test results were negative for H. pylori. Great! No more nausea, loss of taste, etc., but then I began to have lots of gas. My pouch would blow up like a balloon, especially overnight. I saw my GI doctor and was diagnosed with SIBO, although no test for SIBO was done to confirm. Xifaxan antibiotic was prescribed, which did nothing. I was also put on a low FODMAP diet, which did nothing. I then decided to see a functional medicine doctor who ordered many blood and stool tests, which showed an overgrowth of Klebsiella pneumoniae bacteria. She suggested an antimicrobial called Biocidin along with some enzymes and other natural gut barriers. I have improved but still have gas and have not been able to gain my 20-pound weight loss back. I have read extensively about SIBO to learn all I can, and it's discouraging to say the least because it's very difficult to get rid of. Have you ever had the breath test, which is the only way of diagnosing SIBO? Many say it sometimes isn't 100 percent accurate as false negatives and positives occur. The doctors weren't sure how having an ileostomy would affect the test. There is a book written by a world-renowned SIBO specialist, Dr. Mark Pimentel, that gives great insight into SIBO. When I took all those antibiotics, they wiped my microbiome out, killing the good bacteria that fights the bad, so the bad grew out of control. I don't know why your doctor would tell you what he did about antibiotics helping in 18 months. If you read any of the forums people post, like Reddit or Quora, you can learn a lot from people who have battled it. I think it is worse than any Crohn's problems I've had, which resulted in 4 surgeries, because at least I could always get better and actually thrived, but not so with SIBO. I hope this helps and doesn't discourage you. I have just basically learned to live with it. Rhonda

Hello Clara. I have a urostomy and had SIBO diagnosed in the summer of 2024. I cannot answer questions regarding ileostomy. However, maybe I can help with SIBO.

What is SIBO?

Read the text from the top. Not just the title.

Thank you, Rhonda.

I'm sorry you have had such a rough time with your SIBO. I hope you recover from it soon and don't have to live with it forever.
I appreciate your message very much; knowing I'm not the only one experiencing this is comforting.

I was diagnosed via biopsy, not breath test. I was on a short 10-day course of antibiotics and felt better while I was on it, but since I've finished the course of the antibiotics, I have been feeling very lousy.

Thank you for your recommendations. I have done some research on the low FODMAP diet and read through some suggestions on Reddit. I hope to start the diet and see if it can help me recover.

Thank you for taking the time to reply; I appreciate it.

Hi wearingit

Thank you for replying. Have you recovered from your SIBO? Any tips on how to get rid of it or what to avoid while recovering?

Any suggestions will be greatly appreciated!

I was having a lot of really bad abdominal pain, and I was also tested for SIBO. Fortunately, I didn't have it, but until the results came in, I started eating as though I did. Your doctor should give you a SIBO diet to follow. Basically, you can't eat whole grains, whole wheat, and you should avoid roughage. I was told to eat only white bread. This went against my grain because I thought the SIBO diet wasn't healthy. You might be able to Google it if your doctor didn't give it to you. I think there is also some strong antibiotic that you can get that will get rid of it. Hope you feel better soon.