Permanent SIBO due to removal of ileocecal valve

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 had about 5 feet of my ileum removed along with the ileocecal valve and part of my cecum due to a cecal volvulus. I was put on Immodium for many months post-op to control the diarrhea, but perhaps this is not advisable for you due to your narrow intestines. I was recommended a book called "A Patient's Guide to Managing a Short Bowel" by Carol Rees Parrish. It is free to patients and was a great guide. Prior to my volvulus/emergency surgery, I struggled with constipation issues, so my picutre is quite different from yours, but since my journey began I have been treated for SIBO four times. Three times I was put on Xifaxin, this last time I tried an herbal antibiotic combination. SIBO symptoms can be pretty intense, so along with treatment you can try a low FODMAP diet to help things calm down. One of the most helpful things I did was to connect with a RD who specialized in GI issues. Mine is out in CA (I live in WI) but we conducted our sessions via Zoom. I was able to expand my diet and understand what foods would work best for my unique set of challenges. I pray that your new GI doctor is helpful and for relief; I know that feeling a hopelessness!

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

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 am glad a group like this is here. I have no ileocecal valve after twisted colon surgery.3 years ago My surgeon denied it caused SIBO but my GI doctor ( in same hospital group) confirmed it did and said surgeon was "old school" and wrong. Could he have saved the valve? I will never know but surgeons need to be more educated in this area if they are going to continue to perform these procedures. My SIBO is hydrogen sulfide sibo which now, in addition to the intestinal issues, it appears to be creating even more systemic issues ( neuropathy fatigue rashes etcThe xifaxan stopped working and am getting ready to start a new treatment called Alinia, which insurance does not cover, but I dont care about that now. Would love to hear from others esp those who have Hydrogen Sulfide SIBO Thinking about elemental diet; hate to give up food again but getting desearate. Wishing Mayo Clinic did ileocecal valve replacements. Maybe one day.

My ileocecal valve was removed in 2019 as part of an emergency surgery.

In 2020 I got extremely ill, and multiple GIs thought it might be Crohn’s. I was put on a course of xifaxin given I definitely had sibo without the valve. I got better fast

Since then I have had to take a course every 4-7 months. My Mayo GI makes jump through hoops everytime to prove it isn’t another infection (labs, office visits, absolutely miserable stool tests) despite the symtoms being exactly the same everytime and it being her office that told me this would reoccur multiple times a year.

So there is hope, xifaxin for me (I know it doesn’t work for everyone) makes me feel better every time but the fact I am going to have to be turned inside out at least twice a year or more to get the medication we know works, is an absolutely terrible prospect, and if I ever lose my health insurance, I will be back in 2020, a shell of myself and unable to leave my house.