Digestive Issue: Gut dysfunction following traumatic brain injury

Hi @iamcherylb and welcome to Mayo Clinic Connect. I added your question to the Brain & Nervous System group as well as the Digestive Health group. I did this to include other members who have experience with TBI and may have also encountered GI issues as a result. You'll find members like @dawnpereda @kw1904861 @lakelifelady @oceanfun1 and others talking about life with traumatic brain injury here:
- Adult Life after a Traumatic Brain Injury (TBI) https://connect.mayoclinic.org/discussion/adult-life-after-a-tbi/

Cheryl, as for finding a doctor, I might suggest inquiring at Mayo Clinic where medical experts work in multidisciplinary teams across different specialties, such as neurology and gastrointestinal experts.

What type of gut dysfunction are you experiencing? When did you suffer a brain injury and how?

We have a son that was in an accident in 2009 and has a severe brain injury. He is a quadriplegic because of the brain injury not spinal cord. He has seen number gastro doctors but none that understand the gut brain axis. He is non verbal so he can’t tell us what’s happening, but when he has these gut attacks he screams in pain. He has been on all the ppi drugs but some caused seizures. We are trying probiotics which have helped a bit but we really need some good medical direction.

Hello Cheryl @iamcherylb, I would like to add my welcome to Connect along with @colleenyoung. I found an article that may be helpful at explaining the connection between TBI and gut dysfunction.

Excerpt from article below: "Traumatic brain injury (TBI) can lead to several physiologic complications including gastrointestinal dysfunction. Specifically, TBI can induce an increase in intestinal permeability, which may lead to bacterial translocation, sepsis, and eventually multi-system organ failure..."
--- Traumatic Brain Injury and Intestinal Dysfunction: Uncovering the Neuro-Enteric Axis: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2989839/

@colleenyoung mentioned the multidisciplinary approach used at Mayo Clinic, if you would like to seek help from Mayo Clinic, contact one of the appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

Hi @iamcherylb Any word on your son's condition? Just checking up to see how all is going?

Nothing has changed. Still trying to find a doctor near Hilton Head, SC. Would you have any recommendations for a doctor at Mayo Clinic in Jacksonville?

Hi @iamcherylb, While I realize your question was directed to @amandaburnett but I just wanted to step in and direct you to the appointment department at Jacksonville. If you call there and explain your son's condition they will direct you to the correct specialist. Here is the link to appointments at Mayo, http://mayocl.in/1mtmR63.

I admire the way you are advocating for your son. I look forward to hearing from you again.

@iamcherylb - I know the Hilton Head area well- live here. I am sure there isn’t a doctor nearby that would have the knowledge. For my own difficult GI problems I went to Mayo in Jacksonville. I don’t have a specific name of a doctor there.
I also went to MUSC in Charleston- they are very good too.
I would contact Mayo as suggested already by @colleenyoung and @johnbishop.

Hi @iamcherylb Mayo Clinic actually has a Enteric Neuroscience research program geared around this. I have add the link here. https://www.mayo.edu/research/centers-programs/enteric-neuroscience-program

If you click on patients and care, it will allow you to select "make an appointment". It may be further to travel, but to have someone that specializes in what you are looking for is sometimes priceless.

@amandaburnett - I had no idea this research program existed! Fantastic!! @iamcherylb - It sounds perfect for you. According to the link the program is available in Jacksonville too. Jacksonville is not that far to drive to. I had many visits. Each visit is planned ahead of time, sometimes stretching over 4-5 days. There is good lodging nearby too- with shuttles to the clinic.

@iamcherylb Cheryl l highly recommend the Mayo clinic for a second opinion. i had a TBI in 1997 and had memory issues and also was put on a lot of harmful medications because where l live they didn't know to much about viral encephalitis. Then in 2017 the Lord Gave me my memory back but than l had liver problems. So l came to the Mayo clinic in 2017-2019. And l tell everyone if you want a second opinion that's the place to go. And no l not getting paid by them to say that. And now after not working for 23yrs l am now working at a hospital and also taking care of my grandson. So don't ever give up.