Frequently Asked Questions

What is SIBO? 

What causes SIBO? 

The small bowel should be a fast-flowing organ. SIBO occurs in instances when the small bowel does not clear itself properly by flowing or draining as it should. SIBO is not a primary disease, but rather a consequence of another condition that causes slowing of the small bowel—most often, food poisoning.”

 

—Mark Pimentel, MD

My personal experience

1. What protocol finally worked for you?

Xifaxan (Rifaxmin) + Flagyl( Metronidazole).
I took Motegrity (Prucalopride ) immediately after completing antibiotic treatment, and was able to discontinue it after one year.

2. Did you have a reaction to the antibiotics?

I didn’t feel great, but I generally don’t feel good when I take any antibiotic for any disease.

3. What’s it like to work with Dr. Pimentel?

I often get asked about what it’s like to be a patient of Dr. Pimentel’s. First, I want you to know that I know that I am incredibly lucky and blessed. I never thought in my wildest dreams that I would travel for health care. My appointments are very short, considering it takes me all day to fly there from another state, but I don’t take a minute for granted. I get emotional when I leave the clinic. I think it’s partly relief, partly that someone who knows GI motility has thoughtfully listened and tried to help, and maybe a tiny bit sad that it all went by so fast. He’s VERY tall. He’s thoughtful, smart, and a great listener. He’s also great at using stories and analogies to convey a scientific explanation. His clinical care and research revolve around helping patients. When patients get well, that’s his reward. After he listened to my story, he said, “You don’t scare me.”

4. After reading your story, I was curious about what kind of SIBO or gas you had. What were your breath test numbers before you took the antibiotic protocol at Cedars-Sinai?
Hydrogen: 276; methane: 13. I didn’t have hydrogen sulfide. I was considered to have and treated as having what is now called IMO (intestinal methanogen overgrowth).
5. How did you get your story published on the Cedars-Sinai website? (Thank you, as it has helped me, so I know it will help others.)

Thank you so much. I volunteered it as part of the Cedars-Sinai Gratitude Program.

Read About it Here

6. Did you have constipation or diarrhea with SIBO?

I actually had neither from SIBO. (I know, a total weirdo!) I will get loose stool from carbohydrate malabsorption (dairy, fructose, fructans), which in my case, began when I was younger. While this was not from SIBO for me it’s not uncommon to have dairy and fructose intolerances with SIBO. I also developed some acid/bile issues post-surgery and my stools were looser from that until medically managed.

7. How do I donate to help further the research and a cure?

The donation links for iGive, something I started in 2017, are on my contacts page. You automatically donate (for free) as you shop, but you can also donate directly to Dr. Pimentel’s lab, Mast Program.

8. Did you take any herbal supplements or herbal antimicrobials to get rid of SIBO?

No, I did not. However, I worked with a Functional Medicine Doctor for years at an earlier time. Given that I don’t really know when my SIBO started its a hard question to answer, but ultimately antibiotics were what helped.

9. Where are you at with your disease today? Do you still go to Cedars? How are you doing?

I haven’t had SIBO since November 2016, but I suffer from acid/bile GI issues, which are managed, as well as my lactose, fructose, and fructan issues. I believe the acid/bile was coming on prior to surgery, but became more prominent since gallbladder removal.

I’m still a Cedars-Sinai GI Motility patient. I have accepted that most likely I will always be a sensitive GI patient.

10. Will your SIBO return?

My SIBO won’t return for the same reason as explained on the Cedars-Sinai blog post (Read Here). However, there are many reasons/diseases that pre-dispose us to SIBO.

11. How did you know you had carbohydrate malabsorption? What tests did you do?

I did breath tests at a different center years earlier. There are separate breath tests for lactose and fructose. There is also one for sucrose, which is not a problem for me. Additionally, there is also one for fructans at some centers.

12. Did you take a fiber supplement such as Sun Fiber or PHGG with your drug protocol?

No, I did not.

13. How can I go to Cedars-Sinai? What advice do you have regarding getting an appointment?

While I can’t speak directly for them, I am happy to give you some guidelines for academic centers in general and some contact information below for Cedars-Sinai Medical Center GI Motility Program in Los Angeles. 

  1. Whether its Cedars-Sinai or another center, check to see which academic center is closest to you. These are typically big teaching hospitals in your state or region.
  1. Check with your insurance provider to see if you are covered at that center. You can also pay cash at most centers. Contact their business office.
  1. Call the center to see if they have a dedicated GI Motility department or GI Motility doctor who takes new patients and specializes in SIBO (small intestinal bacterial overgrowth) and related motility diseases/testing. Ask specifically if they do breath testing for SIBO.
  1. Ask that center if you will need a general gastroenterologist referral. This is required at many places with GI motility centers, as motility is a GI sub-specially, although some do not require it. Cedars-Sinai does require a referral from your general gastroenterologist. This is because their GI Motility Dept is a tertiary care center and you are required to have a general gastroenterologist near your home town for routine GI care and emergencies.
  1. If a referral is required, ask your local primary care doctor to recommend or refer you to a general gastroenterologist in your city if you are not seeing one, and get started. The longer you wait to take this step, the longer the wait will be for the GI motility appointment.
  1. I tell patients to plan now for later. If you want to see another provider in the meantime, that’s fine; no one should suffer or have medical issues that go unchecked, so this is encouraged, but you will be glad you have the GI motility appointment set up for later. It took me about 6 months to get my appointment, and times will vary depending on a number of factors that cause delays.
  1. This is not something you can do on an urgent care basis, so do not wait until it’s critical. You should go to the ER for underlying disease or pain only if it is an actual emergency. Do not go unchecked if you are sick.
  1. I often advise fellow patients to make the most of your appointment time, and to ask your general gastroenterologist to refer you for both a breath test and consultation at the bigger center for that first appointment.

Above all else: Do not use SIBO as an excuse. You may have SIBO, but you may need to address a more urgent medical issue(s) causing SIBO. You should not ignore something that might be detrimental to your health or life. 

Note: Dr. Pimentel does not see or consult with new patients. However, other GI Motility Program physicians at Cedars-Sinai’s GI Motility Center are available. Once you have the referral, you can contact their clinic at 310- 423- 6143.

Disclaimer: I do not work at/for Cedars-Sinai. I created lifeaftersibo.com, a blog of my story and my experiences, solely for guidance and enjoyment. The information included on this site is not a substitute for professional medical advice. 

Always seek the advice of your physician or other qualified health care provider.

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