Permanent SIBO due to removal of ileocecal valve

Posted by pknw @pknw, Jul 16, 2017

Is there anyone who has no cure options for SIBO due to the removal of the ileocecal valve? If so, how do you minimize possible long term damage to your intestinal tract? Do you find that digestive enzymes, L-Glutamine, Enteragam or any natural supplements aid in a healthier immune system? if so,
please pass along your best advice. Thanks.

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Hi Everyone I just recently had right hemicolectomy surgery and reomval of illeocecal valve in Nov 2020. It was emergency surgery for a twisted cecal volvulus so I did not ask alot of questions. Now unfortunately I have lots of questions. I just got my first SIBO diagnosis. If you have not been diagnosed with SIBO but have all the symptoms make sure you get the TrioSmart Breath Test. There are 3 kinds of SIBO and Hydrogen Sulfide does not show up on a standard SIBO test, only the Trio Smart Breath TEst. That is why mine was not showing up. It did finally show up on an endoscope. My new GI did that scope. Had to fire my old GI; his knowledge was very poor in ths area. Cant find alot about artificial cecal valve replacements / nipple surgery but think that is a new surgery that you should ask about before getting the cecal valve removed. I am feeling anxiety now that I think this will be a permanent condition. The IBS symptoms are bad but the fatigue is alot worse. Surgeon did not say 1 thing about complications when he came to see me every day in hospital after surgery. Had to do my own research online to try and figure this out. Sure many of you experienced the same thing. Just started the Xifaxan; hope it works. Have been on a low FODMAP diet for 2 months will no results. Elemental Diet supplement is decent and I use it as a meal replacement for at least one meal. Very expensive though so for me not a good long term solution. Hate that we are all in this situation but glad we can "Connect"

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I had some surgery. With cacaflaxin also take Flagil had massive adhesions

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SIBO is not permanent. With me it was more frequent in first year Then subsides
Eat less carbs

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@nova1976

SIBO is not permanent. With me it was more frequent in first year Then subsides
Eat less carbs

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Hi Nova. Did you have the cecal valve removed? I so hope this is not permanent.

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I had massive adhesions from multiple surgeries after Gastric Bypass This included multiple resections of small intestine
the last resection included removing appendix, a piece of small intestine, ileocecal valve and a piece of colon
the intestines were basicly telescoped into each other I woke up after surgery and it was Gone
the SIBO followed numerous times regimon of xaxaflaxin and flagyl controlled it It subsided after a year when it started i limit all carbs i eat things like tuna, eggs for protein and it subsides It causes explosive diarrea when it starts as a warning I hope this helps

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@nova1976

I had massive adhesions from multiple surgeries after Gastric Bypass This included multiple resections of small intestine
the last resection included removing appendix, a piece of small intestine, ileocecal valve and a piece of colon
the intestines were basicly telescoped into each other I woke up after surgery and it was Gone
the SIBO followed numerous times regimon of xaxaflaxin and flagyl controlled it It subsided after a year when it started i limit all carbs i eat things like tuna, eggs for protein and it subsides It causes explosive diarrea when it starts as a warning I hope this helps

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Thanks so much nova that is helpful I follow the FODMAP diet now and have really worked hard to limit carbs. after treatment I hope I see some significant improvementYou have had quite a journey good luck to you

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@tiss

Rachel,
I think I tried 3 rounds of a month of Xifaxan–550mg 3 x day and it worked well within a week as best I can remember. But SIBO kept coming back so my dr finally said to stay on it indefinitely. I was relieved. Still have flare ups but not like I used to. I started taking it about 9 months after my surgery.

The drs put me on Align 2 months after my surgery (8-22-16). Once a day. Last time I saw my GI he suggested a trial off of it because even though it's 'good' bacteria, it's still bacteria. After 4 days I was a mess. Constant loose stools, discomfort, etc. Went back on the Align and things evened out within a week or so. I take 1 550mg Xifaxan in the morming, Align during the day, and 2 550mg Xifaxan at night. That seems to hold things pretty steady.

As far as food, it's been a real trial. I hardly ate anything the first several months. Red meat is very hard for me to digest so I avoid it unless I'm dying for it and willing to pay the uncomfortable price. I do eat grilled fish once a week although I don't like fish 🙂
Veggies– very soft cooked. Some I tolerate, some I don't. I eat a lot of yogurt, avocado, V8 juidce, peanut butter, eggs, and a little granola and 1 or 2 bottles of Ensure Max– 30gms of protein, 1 gm of sugar. Food is a constant trial and error thing so when I feel brave, I might try something new, otherwise I stick to what doesn't upset my stomach.

I'm not sure if you get a monthly b 12 shot but this is necessary as the body only absorbs b12 through the cecum. So I get monthly b12 shots, and also take sublingual vitamin d.

Please ask any question you want. One of the worst feelings I felt after my surgery was that I was completely alone because I knew no one who had experienced this. I don't know if you are on Facebook, but I found a very good, closed, private group for colectomy patients. I get more good advice from that group than any doctor. One of the best pieces of advice I got from a group member was to see a registered dietician. I did that and she was fabulous. If you would like the name of the group, let me know. The administrator is very careful about allowing only colectomy patients and family members on it. I wish you the best of luck. I wouldn't wish this on anyone but then again, you and I are lucky to be alive. Figuring out how to manage is tough. ❤️

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Hi Rachel,
I read your post and would like to know the Facebook group for people with our similar issues (I had my appendix, secum, illeocecal valve, and 13 inches of colon removed). I'm suffering daily digestive problems and my GI has done many tests plus an endoscopy. I'm hoping she will agree to prescribe xifaxan for me to try. This misery has got to stop!
Thanks,
Jackie

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@jackiegem

Hi Rachel,
I read your post and would like to know the Facebook group for people with our similar issues (I had my appendix, secum, illeocecal valve, and 13 inches of colon removed). I'm suffering daily digestive problems and my GI has done many tests plus an endoscopy. I'm hoping she will agree to prescribe xifaxan for me to try. This misery has got to stop!
Thanks,
Jackie

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Hi Jackie, sorry for your suffering. There are a couple of Facebook support groups that I am in. Both are private. The bigger one is called Total Colectomy Survivors– Colectomy Support Group.
Has your dr done a methane or hydrogen SIBO breath test? Easy test. Non invasive. I feel your pain. It's not easy. ❤️

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@keetafox

Hi Everyone I just recently had right hemicolectomy surgery and reomval of illeocecal valve in Nov 2020. It was emergency surgery for a twisted cecal volvulus so I did not ask alot of questions. Now unfortunately I have lots of questions. I just got my first SIBO diagnosis. If you have not been diagnosed with SIBO but have all the symptoms make sure you get the TrioSmart Breath Test. There are 3 kinds of SIBO and Hydrogen Sulfide does not show up on a standard SIBO test, only the Trio Smart Breath TEst. That is why mine was not showing up. It did finally show up on an endoscope. My new GI did that scope. Had to fire my old GI; his knowledge was very poor in ths area. Cant find alot about artificial cecal valve replacements / nipple surgery but think that is a new surgery that you should ask about before getting the cecal valve removed. I am feeling anxiety now that I think this will be a permanent condition. The IBS symptoms are bad but the fatigue is alot worse. Surgeon did not say 1 thing about complications when he came to see me every day in hospital after surgery. Had to do my own research online to try and figure this out. Sure many of you experienced the same thing. Just started the Xifaxan; hope it works. Have been on a low FODMAP diet for 2 months will no results. Elemental Diet supplement is decent and I use it as a meal replacement for at least one meal. Very expensive though so for me not a good long term solution. Hate that we are all in this situation but glad we can "Connect"

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Hi KRF,
I had an emergency right hemicolectomy including removal of the ileocecal valve in 2015. I have been suffering with chronic diarrhea, bloating, gas, fatiue, brain fog, joint and bone pain, muscle tenderness and weakness. I didn't have a quality of life. I had no life due to symptoms. My provider has told me I have gluten sensitivity, I gave up gluten, and leaky gut syndrome, I gave up dairy, meat, simple sugars, etc. Finally, in December 2021 she ordered a CT which showed mild colitis. I had been begging her for a course of antibiotics. Finally, and I was on Cipro 500 twice daily and Metronidazole 500 three times daily for 8 days.
It was a miracle! My mind became sharp and bright, my diarrhea went away, my bone pain went away, muscle weakness went away, etc….until it came back 4 weeks later.
My provider finally referred me to a gastroenterologist who explained SIBO and SIFO after right hemicolectomy with removal of ileocecal valve.
Now on a different antibiotic and I have follow up with doctor in 1 month.
Fingers crossed.

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Thanks Rocknrobbn. Let’s keep each other posted on updates I have now had Sibo twice after surgery. A prescription called refaxin helps. I am now using a prokinetic called Motegrity fingers crossed this gets better over time my G.I. doctor thinks I’ll probably have it the rest of my life but I’m not sure I want to accept that just yet by the way where did you find a G.I. doctor that believes in SIFO mine does not but I believe in it? Best of luck to you

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@keetafox

Thanks Rocknrobbn. Let’s keep each other posted on updates I have now had Sibo twice after surgery. A prescription called refaxin helps. I am now using a prokinetic called Motegrity fingers crossed this gets better over time my G.I. doctor thinks I’ll probably have it the rest of my life but I’m not sure I want to accept that just yet by the way where did you find a G.I. doctor that believes in SIFO mine does not but I believe in it? Best of luck to you

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I found him through the referral my Family Nurse Practitioner put in when she couldn't figure out what was wrong with me. I had so many blood and stool tests with no finding to explain my chronic diarrhea and feeling unwell everyday.
I am in an HMO and on medicare advantage plan. I cannot self direct my care. Just by luck I had my consult with a gastroenterologist who understands SIBO/ SIFO in post hemicolectomy surgery with removal of the ileocecal valve.
My doctor also said it will be life long. I have had this for several years so I believe him.
I was on Cipro and Metronidazole and now on Augmentin.

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I had an emergency right hemicolectomy and ileectomy in 2016 from a cecal volvulus. It's been a rough ride. I too had problems with chronic SIBO. My GI dr did a hydrogen breath test and it was sky high. He put me on several weeks on xifaxan,(rifaximin) and I did great. But, it always came back after a few weeks. Finally he put me on xifaxan 3x daily indefinitely. I had incredible insurance that paid 100% of the cost. Two years ago I was able to get the dosage down to twice a day and am still doing well although I still have a lot of irregularity flareups but I just live with that. Now, I am on Medicare. It is a tier 5 drug which is the most expensive. We got the best drug plan we could find in order to get this drug covered although it will still be expensive until we meet the catastrophic coverage amount. Xifaxan honestly has allowed me to have a better quality of life overall. I can't imagine what it would be like if I was forced to go off. I suffered with IBS since I was a child — always had intestinal problems and now I know that I had a bowel deformity (rotated cecum) that wasn't detected until I obstructed, I'm pretty sure my dr prescribed it for IBS since it is approved for that. Without the IV there's just no way to keep bacteria out of the small intestine. I wish all of us who have had to have this surgery would get a special rate for this crazy insane cost medicine!

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