Artificial ileocecal valve surgery

Posted by blbanner @blbanner, Mar 27 6:19pm

I have been SUFFERING with SIBO and yeast in my gut ever since I had my ICV removed from my bowel resection in October 2022. I am currently trying to get a referral from my GI to meet with the Mayo Clinic team in Phoenix. I’ve heard of a nipple valve surgery where they intussuscept part of your small intestine into your large intestine and they create a valve that way. Has anyone looked into this? Has anyone had a surgery like this? I only feel somewhat normal when I take Diflucan and Xifaxan at the same time, but it’s not safe to take diflucan long term and my insurance company won’t approve Xifaxan long term. My symptoms return immediately upon stopping. I’ve tried all the diets. I’m feeling like surgery is my last resort. I’d love to do it if there is a team of doctors out there that can help. Any thoughts?

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

I have the same issues, ileocecal valve removed in bowel resection surgery in 2003 and SIBO started 2014. I have never heard of the type of surgery that you're describing but my how I would consider it too! I'm very interested to hear if anyone else has info on it. Thanks for posting. I know the misery you're dealing with and I'm so sorry that you're going through all of this. Also, I did a round of Xifaxan and neomycin in November and Medicare and Medicaid wouldn't cover the Xifaxan so my GI doctor helped me apply for the pharmaceutical company's patient assistance program so I could get it at no cost. I'm not certain how often the company would approve low or no cost Xifaxan.

REPLY

Hi
Did you find a fix of any surgeon / clinic that can rebuild artificial a valve ? I have same issue

REPLY

I have same issue and SIBO getting worse and more debilitating. I cannot find a US surgeon who does this My GI doc just scoffs when I mention that. I would even travel internationally if I knew of a credible surgeon doing this. Love to hear of any updates

REPLY
@kafka82

Hi
Did you find a fix of any surgeon / clinic that can rebuild artificial a valve ? I have same issue

Jump to this post

I have learned to hate gut issues!
My husband had cancer in his ileocecal valve, 4 years ago. There was no mention of rebuilding the valve. His surgeon said that he had very specific locations that he would use for the two cuts, had to do with where the veins were, I think. He is doing great. The SIBO that you mentioned, is bacteria overgrowth or bowel obstruction?

REPLY

The University of Pittsburgh Medical Center does small bowel replacement (but you have to be very, very ill to qualify). Not sure what they do with ileo-cecal valves.
My ileo-cecal valve was removed 2001. Very healthy before removal. After removal I daily experience fatigue, flu-like symptoms - especially upon waking, 4-10 bms/day (mostly very loose and urgent) and live on a very limited diet of mostly white rice, avocado, sweet potatoes (Stokes are my favorite) and soup broth - - otherwise symptoms worsen. In 2001, I was 5' 10" and 150 lbs of muscle - today I am 123 lbs. I appear yellow in sunlight and have high bilirubin but the medical profession says its a red herring. Things that help: IBgard (OTC enteric coated peppermint oil); Visbiome (probiotic); herbal teas (elderberry, cats claw, nettles, echinacae, astragalus and several others); other items most naturopaths recommend; sticking to my limited diet; and keeping stress low (meditation helps). The road is challenging and there may not be anyone around you who understands - the ill ones have their own challenges and the healthy ones have a different focus. I wish you a quick and full recovery - - however - - if that does not happen - - I wish you strength and courage to bear your illness as best you can.

REPLY
@damardru

The University of Pittsburgh Medical Center does small bowel replacement (but you have to be very, very ill to qualify). Not sure what they do with ileo-cecal valves.
My ileo-cecal valve was removed 2001. Very healthy before removal. After removal I daily experience fatigue, flu-like symptoms - especially upon waking, 4-10 bms/day (mostly very loose and urgent) and live on a very limited diet of mostly white rice, avocado, sweet potatoes (Stokes are my favorite) and soup broth - - otherwise symptoms worsen. In 2001, I was 5' 10" and 150 lbs of muscle - today I am 123 lbs. I appear yellow in sunlight and have high bilirubin but the medical profession says its a red herring. Things that help: IBgard (OTC enteric coated peppermint oil); Visbiome (probiotic); herbal teas (elderberry, cats claw, nettles, echinacae, astragalus and several others); other items most naturopaths recommend; sticking to my limited diet; and keeping stress low (meditation helps). The road is challenging and there may not be anyone around you who understands - the ill ones have their own challenges and the healthy ones have a different focus. I wish you a quick and full recovery - - however - - if that does not happen - - I wish you strength and courage to bear your illness as best you can.

Jump to this post

Have you tried to look into artificial surgery? Look up "nipple valve" or ileocecal valve reconstruction surgery on chat gpt. It does provide some information. I have a surgery consult with someone who specializes in intestinal reconstruction, but he has not specifically done this surgery. I am surprised that this surgery has not been done more, but I do not think it is common procedure to have your ileocecal valve removed. There is some limited research on surgeons that have done this surgery, but I am hoping that with advanced expertise and research that this surgeon I am meeting with can help me. Even with a referral from my GI, it will take me about 7 months to get in. I was able to meet with a surgeon fairly quickly with the Cleveland Clinic, but they were absolutely stupid, for a lack of better words. I am in Salt Lake City, and this surgeon is in this area. I am feeling somewhat hopeful for this procedure. It helps that I have the support of my GI in this.

REPLY
Please sign in or register to post a reply.