← Return to Permanent SIBO due to removal of ileocecal valve

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pknw (@pknw)

Permanent SIBO due to removal of ileocecal valve

Digestive Health | Last Active: Aug 8 6:44pm | Replies (159)

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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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Replies to "Rachel, I think I tried 3 rounds of a month of Xifaxan--550mg 3 x day and..."

Hey @tiss, thanks so much again for taking the time to reply! I really really appreciate it. Like you were saying, it's so easy to feel alone in all of this so it means a lot to me to have help and support (especially from someone who had the exact same surgery as me, since it's pretty rare!) The other thing that's been a bit disheartening is that the doctors don't seem to know all that much about this problem, unfortunately. My docs are really nice and everything, and I feel lucky to at least have doctors that even believe me (because I know some think this kind of stuff is made up), but at the same time they seem to have run out of ideas and aren't sure what to try next.

I've been working with a registered dietitian for about a year. She actually works specifically within the gastroenterology clinic, so she knows even more about these kinds of issues than a general RDN, which is cool. It's been helpful for learning how to do the low FODMAP diet correctly and things like that, but she said that as far as research goes the best evidence for treating SIBO is the low FODMAP diet with meal spacing and antibiotics. However, since the combination of those things still hasn't worked for me, it seems like she might be out of ideas too.

Right now I'm taking 1 550mg Xifaxan in the morning and 1 550mg at night. I'll ask my doc at the next appointment if we could try bumping it up to 1 in the morning and 2 at night like you're doing, and also trying Align. I'll also ask about B12 shots – the docs haven't mentioned anything about that before and I didn't know that about B12 being absorbed in the cecum, so I never thought to get them.

I'm not on Facebook, but maybe I can ask my boyfriend to join the group for me if that's allowed. If you don't mind sharing the name of it, that would be great 🙂

Thanks so much again for taking the time 🙂 Like you said too, despite the after effects of volvulus surgery, we are definitely lucky to be alive – that's for sure ❤️

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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