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.

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

@thull

Have been on low residue diet, now introducing new foods slowly, as surgeon says I can eat normally since Deloyer procedure. I am trying to still be careful as I think I have some PTSD where certain foods are concerned. Things seem to be going ok, had some ground beef, onions and avacado. Didn't seem to bother me other than bm was a little looser. As I am only 4 weeks out from surgery, not sure what my new normal will end up looking like. I am definitely keeping track of my intake and my reaction

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It has taken me 2 1/2 years to get more comfortable trying new , or old foods that aren't on my 'safe' list. Your surgery was very recent. Please give it time. It's good you are keeping track of what your intake is. It can take up to a full year to fully recover from bowel surgery. And even then, many of us are not the same. Manageable but not the same. Everyone is different in their recovery rate and what they can, and cannot tolerate. Good luck!

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@tiss

It has taken me 2 1/2 years to get more comfortable trying new , or old foods that aren't on my 'safe' list. Your surgery was very recent. Please give it time. It's good you are keeping track of what your intake is. It can take up to a full year to fully recover from bowel surgery. And even then, many of us are not the same. Manageable but not the same. Everyone is different in their recovery rate and what they can, and cannot tolerate. Good luck!

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Thanks. Looking forward to feeling somewhat normal again!

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@thull

Thanks. Looking forward to feeling somewhat normal again!

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@thull best of luck to you. It took me a long time as well. I pretty much only ate homemade soup for the first year! Like tiss said, it's a lot of trial and error to figure out what works for you and what doesn't. Please keep us updated!

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@hopeful33250

Hello @rachel_b

I would also like to recommend that you read through the Connect discussion at, https://connect.mayoclinic.org/discussion/sibo-diet/ and also https://connect.mayoclinic.org/discussion/tips-for-managing-chronic-small-bowel-obstructions/?orderby=DESC#chv4-comment-stream-header. If you click on these links you can read what others have reported. I would especially like to invite, @thull, @nancybev and @drpepper. They have been actively discussing diet and lifestyle changes as a result of their surgeries.

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@teresa2017 Awesome, thank you so much for these resources! I will check out those other discussions you linked for sure. It's really great to be on here and connect with others. The advice I've gotten from people on this forum so far has already helped me sooo much. Really appreciate it 🙂

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@tiss

This is an old post but I found it from searching illeocecal valve and SIBO on google. On August 22nd, 2016 I had emergency surgery due to a bowel obstruction caused from a cecal volvulous. Had a right hemicolectomy with 18" of small intestine removed including the cecum, Illeocecal valve, appendix up to transverse colon which was resected into large intestine. Since then have had problems with SIBO since I have a wide open anastomoses in resected area. No way to keep bacteria from backing up into small intestine. Drs put me on align probiotics 2 months after my surgery which probably made situation w bacteria worse. Anyhow, found a great GI dr who ran some tests and diagnosed off the chart SIBO. Put me on Xifaxan daily and it's a life saver. Today he told me to go off the probiotics since you really don't want bacteria (even the 'good' bacteria in your small intestine. I have been on Xifaxan daily for 1 1/2 years and will be on it lifelong. It's improved the quality of my life 100 fold. Have pretty regular BM with occasional acid bile stools but not very often anymore. I do eat heaithy and stay away from things I can no longer digest like beans. Good luck to all.

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Hello,
I am new to this group. Back in Oct. 2015, I had an emergency surgery due to a volvulus, which resulted in the removal of the ileocecal valve, appendix, small amount of small intestine removed and 2 ft. of the large intestine. I have been on a healing journey with many ups and downs. It is good to know that I am not alone. I have tried elimination diets, but have found that most food affects me the same . I take dicyclomine liquid 3 times a day, with some relief. I realize SIBO is an issue for us, however, I was diagnosed as having borderline SIBO 2 yrs. ago. I was wondering if you had any suggestions for using a different medicine that could help with the cramping and pain. I wish you well, and if you have any good advise , I would welcome it. Thank you! Beth

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Hi @bethy1962 and welcome to Connect. That must be so frustrating to continue having cramping and pain after your surgeries and that most food affects you negatively.

I wanted to introduce you to @tiss @rachelb and @thull as they may have some suggestions for you and may be able to offer you support as you move forward.

Back to you @bethy1962 you mentioned that most food affects you the same way, are their any foods that you are able to eat that doesn't cause any side effects?

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@drpepper

I had ileocecal valve removed as part of terminal ileum removal in 1999. I did not start having excessive belching for several years (2015). Anyone else have this kind of time delay?

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I had a subtotal colectomy for slow motility of the large intestine in 1994. The took all of the large intestine except a stump which enabled the anastomosis of the small intestine to the large intestine. I have been experiencing severe bloating and gas for the last several months which led me to trying digestive enzymes that a friend is selling. This led me to the discovery of SIBO which I was never aware of. I now have at least 2 loose stools every day, and as mentioned, lots of horrific gas. I've been modifying my diet to see what I need to eliminate (no pun intended). One thing that increases my symptoms is ice cream 😭. I try to self-treat as much as I can, but I realize that finding a good GI Dr is something I need to do now. Long story, but this is my history. Here it is 25 years after my surgery and now I am having these problems. SO glad I stumbled across this group, I'll be staying tuned!!

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@bethy1962

Hello,
I am new to this group. Back in Oct. 2015, I had an emergency surgery due to a volvulus, which resulted in the removal of the ileocecal valve, appendix, small amount of small intestine removed and 2 ft. of the large intestine. I have been on a healing journey with many ups and downs. It is good to know that I am not alone. I have tried elimination diets, but have found that most food affects me the same . I take dicyclomine liquid 3 times a day, with some relief. I realize SIBO is an issue for us, however, I was diagnosed as having borderline SIBO 2 yrs. ago. I was wondering if you had any suggestions for using a different medicine that could help with the cramping and pain. I wish you well, and if you have any good advise , I would welcome it. Thank you! Beth

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@bethy1962 oh, I feel your pain! If you read up through the posts, you can read my story after my right hemicolectomy. I have chronic SIBO and take Xifaxan very day, which has been a God send. Seeing a registered dietician was a huge help also. Food is a challenge even after 2 1/2 years. Best of luck. You aren't alone!

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@bethy1962

Hello,
I am new to this group. Back in Oct. 2015, I had an emergency surgery due to a volvulus, which resulted in the removal of the ileocecal valve, appendix, small amount of small intestine removed and 2 ft. of the large intestine. I have been on a healing journey with many ups and downs. It is good to know that I am not alone. I have tried elimination diets, but have found that most food affects me the same . I take dicyclomine liquid 3 times a day, with some relief. I realize SIBO is an issue for us, however, I was diagnosed as having borderline SIBO 2 yrs. ago. I was wondering if you had any suggestions for using a different medicine that could help with the cramping and pain. I wish you well, and if you have any good advise , I would welcome it. Thank you! Beth

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@bethy1962 I totally feel for you! I'm glad you joined the forum – the people here have been super helpful to me (I had the same surgery as you when I was 24). Re: elimination diets – have you done them under the guidance of a registered GI dietitian? I'm just wondering, because I tried them for a long time too without success, but when I tried the low FODMAP diet again recently with a super knowledgeable dietitian, there was a ton of stuff I realized I was doing wrong. Once I started doing it the right way, I found that it did help (it's not perfect, but symptoms are still better for me than when I'm not following it). The multitude of resources online can be really confusing, contradictory and sometimes wrong – so I'd definitely recommend trying diet manipulation under the guidance of a good dietitian if you haven't already. I learned so much from mine! Best of luck 🙂

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@rachel_b

@bethy1962 I totally feel for you! I'm glad you joined the forum – the people here have been super helpful to me (I had the same surgery as you when I was 24). Re: elimination diets – have you done them under the guidance of a registered GI dietitian? I'm just wondering, because I tried them for a long time too without success, but when I tried the low FODMAP diet again recently with a super knowledgeable dietitian, there was a ton of stuff I realized I was doing wrong. Once I started doing it the right way, I found that it did help (it's not perfect, but symptoms are still better for me than when I'm not following it). The multitude of resources online can be really confusing, contradictory and sometimes wrong – so I'd definitely recommend trying diet manipulation under the guidance of a good dietitian if you haven't already. I learned so much from mine! Best of luck 🙂

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Hello,

Thank you for your kind response. The ironic part of this journey is that I am a Registered Dietitian. I have tried the low fodmap
Elimination with a coach. I also eat pretty clean.
It helped somewhat, but still have the afterlunch cramping. I am willing to revisit the diet with a GI dietitian. I just despise the thought of restricting at this stage in my life. I guess I am searching for a magic pill that can ease my anxiety, stress and pain with food. I have gained some weight, I exercise, and feel good up until 2pm. (After lunch I experience the cramping).
I also experiment with CBD and Medical Marijuana. Has helped somewhat, but can “feel a little spacey at times. I appreciate all of your feedback, thank you.

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@bethy1962

Hello,

Thank you for your kind response. The ironic part of this journey is that I am a Registered Dietitian. I have tried the low fodmap
Elimination with a coach. I also eat pretty clean.
It helped somewhat, but still have the afterlunch cramping. I am willing to revisit the diet with a GI dietitian. I just despise the thought of restricting at this stage in my life. I guess I am searching for a magic pill that can ease my anxiety, stress and pain with food. I have gained some weight, I exercise, and feel good up until 2pm. (After lunch I experience the cramping).
I also experiment with CBD and Medical Marijuana. Has helped somewhat, but can “feel a little spacey at times. I appreciate all of your feedback, thank you.

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Oh wow, you are an RD! Sorry to hear that the low FODMAP diet didn't help – it's only helped me somewhat – it's definitely not perfect. Have you tried herbal antimicrobials at all for SIBO (like berberine)? I haven't yet, but I have heard they can be good – even as good as an antibiotic. I've tried CBD as well, but I didn't notice any difference unfortunately. If only someone would come up with a way to replace the ileocecal valve 🙁 !

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@rachel_b

Oh wow, you are an RD! Sorry to hear that the low FODMAP diet didn't help – it's only helped me somewhat – it's definitely not perfect. Have you tried herbal antimicrobials at all for SIBO (like berberine)? I haven't yet, but I have heard they can be good – even as good as an antibiotic. I've tried CBD as well, but I didn't notice any difference unfortunately. If only someone would come up with a way to replace the ileocecal valve 🙁 !

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@rachel_b , are you feeling better? Are you on the Xifaxan every day now?

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