Permanent SIBO due to removal of ileocecal valve

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?

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?

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

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?

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.

In July 2022, I randomly had a partial bowel obstruction at age 22. I went to the ER and I was told that the reason for this partial bowel obstruction was due to adhesions from when I had surgery as a 4 year old for diverticulitis and intususpeption. I had a colonoscopy to test for Crohns since my dad has it. They said I had no signs of Crohn, but my GI also said my intestines were so narrow that he would barely put the camera through the bends in my intestines. Fast forward to September of 2022 when I got a laparoscopic procedure to get rid of my adhesions/scar tissue. Not even a week later I was back in the hospital for another bowel obstruction and was admitted for emergency surgery. I woke up and found out that 15 inches of my small intestine was removed, including the ileocecal valve and cecum. Doctors said that the removed intestine was sent to pathology and no signs of Crohns was detected. Doctors also told me I would have IBS like symptoms for 6 weeks but that it would go away.

10 months later and I have never felt worse. Each day that goes by, I feel worse. Prior to my surgery, I have never had any GI issue. Now, all my bowel movements are liquid water or straight diarrhea. I go about 3-5 times a day. I get horrible gas ALL day EVERY day. Gas x provides no relief. It seems that no matter what I eat, I am constantly extremely distended and in pain. In the evenings, I am so inflamed that I can barely push out a fart. I’ve lost some weight but my clothes are all too tight for me because my stomach is constantly distended. I’m exhausted all the time. I’ve had to give up weight lifting to preserve my energy. Often, I find mucus in my poop. My procedure was on the lower right part of my abdomen, but it still hurts 10 months later.

My GI told me my reason for this pain was due to stress. I went to an endocrinologist and they did a breath test and said I had hydrogen based SIBO. My blood levels tested positive for inflammatory bowel disease but she didn’t seem too concerned. Instead, she put me on low dose naltrexone to help with inflammation and had me go off gluten and dairy. I started lauracidin for SIBO (a more natural remedy). I still feel extremely inflamed at the end of the day, so I don’t know if my anti inflammatory is working or if it’s strong enough. Being GF the last two months had felt no different then when I was eating gluten. I switched to a new GI that is supposed to be better but I don’t see him for another month. This is the worst I have felt since my surgery. My dad wants me to get an endoscopy and do another colonoscopy because he thinks crohns could still be a possibility. I don’t know if this is crohns or just a horrible case of SIBO but nothing seems to be working. I feel so hopeless and my quality of life has decreased in so many ways since I had this bowel resection. Has anyone had something similar and has found remedies that have helped? Or does anyone have any advice or opinions? Thanks

In July 2022, I randomly had a partial bowel obstruction at age 22. I went to the ER and I was told that the reason for this partial bowel obstruction was due to adhesions from when I had surgery as a 4 year old for diverticulitis and intususpeption. I had a colonoscopy to test for Crohns since my dad has it. They said I had no signs of Crohn, but my GI also said my intestines were so narrow that he would barely put the camera through the bends in my intestines. Fast forward to September of 2022 when I got a laparoscopic procedure to get rid of my adhesions/scar tissue. Not even a week later I was back in the hospital for another bowel obstruction and was admitted for emergency surgery. I woke up and found out that 15 inches of my small intestine was removed, including the ileocecal valve and cecum. Doctors said that the removed intestine was sent to pathology and no signs of Crohns was detected. Doctors also told me I would have IBS like symptoms for 6 weeks but that it would go away.

10 months later and I have never felt worse. Each day that goes by, I feel worse. Prior to my surgery, I have never had any GI issue. Now, all my bowel movements are liquid water or straight diarrhea. I go about 3-5 times a day. I get horrible gas ALL day EVERY day. Gas x provides no relief. It seems that no matter what I eat, I am constantly extremely distended and in pain. In the evenings, I am so inflamed that I can barely push out a fart. I’ve lost some weight but my clothes are all too tight for me because my stomach is constantly distended. I’m exhausted all the time. I’ve had to give up weight lifting to preserve my energy. Often, I find mucus in my poop. My procedure was on the lower right part of my abdomen, but it still hurts 10 months later.

My GI told me my reason for this pain was due to stress. I went to an endocrinologist and they did a breath test and said I had hydrogen based SIBO. My blood levels tested positive for inflammatory bowel disease but she didn’t seem too concerned. Instead, she put me on low dose naltrexone to help with inflammation and had me go off gluten and dairy. I started lauracidin for SIBO (a more natural remedy). I still feel extremely inflamed at the end of the day, so I don’t know if my anti inflammatory is working or if it’s strong enough. Being GF the last two months had felt no different then when I was eating gluten. I switched to a new GI that is supposed to be better but I don’t see him for another month. This is the worst I have felt since my surgery. My dad wants me to get an endoscopy and do another colonoscopy because he thinks crohns could still be a possibility. I don’t know if this is crohns or just a horrible case of SIBO but nothing seems to be working. I feel so hopeless and my quality of life has decreased in so many ways since I had this bowel resection. Has anyone had something similar and has found remedies that have helped? Or does anyone have any advice or opinions? Thanks

I do not know either. Ir seems to be something nobody understands enough to address

🙁

In July 2022, I randomly had a partial bowel obstruction at age 22. I went to the ER and I was told that the reason for this partial bowel obstruction was due to adhesions from when I had surgery as a 4 year old for diverticulitis and intususpeption. I had a colonoscopy to test for Crohns since my dad has it. They said I had no signs of Crohn, but my GI also said my intestines were so narrow that he would barely put the camera through the bends in my intestines. Fast forward to September of 2022 when I got a laparoscopic procedure to get rid of my adhesions/scar tissue. Not even a week later I was back in the hospital for another bowel obstruction and was admitted for emergency surgery. I woke up and found out that 15 inches of my small intestine was removed, including the ileocecal valve and cecum. Doctors said that the removed intestine was sent to pathology and no signs of Crohns was detected. Doctors also told me I would have IBS like symptoms for 6 weeks but that it would go away.

10 months later and I have never felt worse. Each day that goes by, I feel worse. Prior to my surgery, I have never had any GI issue. Now, all my bowel movements are liquid water or straight diarrhea. I go about 3-5 times a day. I get horrible gas ALL day EVERY day. Gas x provides no relief. It seems that no matter what I eat, I am constantly extremely distended and in pain. In the evenings, I am so inflamed that I can barely push out a fart. I’ve lost some weight but my clothes are all too tight for me because my stomach is constantly distended. I’m exhausted all the time. I’ve had to give up weight lifting to preserve my energy. Often, I find mucus in my poop. My procedure was on the lower right part of my abdomen, but it still hurts 10 months later.

My GI told me my reason for this pain was due to stress. I went to an endocrinologist and they did a breath test and said I had hydrogen based SIBO. My blood levels tested positive for inflammatory bowel disease but she didn’t seem too concerned. Instead, she put me on low dose naltrexone to help with inflammation and had me go off gluten and dairy. I started lauracidin for SIBO (a more natural remedy). I still feel extremely inflamed at the end of the day, so I don’t know if my anti inflammatory is working or if it’s strong enough. Being GF the last two months had felt no different then when I was eating gluten. I switched to a new GI that is supposed to be better but I don’t see him for another month. This is the worst I have felt since my surgery. My dad wants me to get an endoscopy and do another colonoscopy because he thinks crohns could still be a possibility. I don’t know if this is crohns or just a horrible case of SIBO but nothing seems to be working. I feel so hopeless and my quality of life has decreased in so many ways since I had this bowel resection. Has anyone had something similar and has found remedies that have helped? Or does anyone have any advice or opinions? Thanks

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?