Permanent SIBO due to removal of ileocecal valve

@tiss thanks so much for your reply and the information 🙂 You're right, it's extremely frustrating and I'm just dying to find something that works because it affects quality of life sooo much 🙁 A couple questions:

Did it take a while for Xifaxan to start working for you in the beginning? I tried a two-week course a couple months ago which didn't seem to make a difference, and now I'm trying it for a month (or longer) to see if it kicks in eventually, but I'm not sure if that will happen or not.

Does the Xifaxan on it's own clear things up for you a lot, or is it only when you also take the Align with it?

Do you pretty much eat what you want or do you also follow diet restrictions in addition to the Xifaxan and Align in order to keep things working?

I'm willing to try any combination of things - just want to find something that works 🙂

Thanks again!

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. ❤️

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 ❤️

The name of the Facebook group is, "post colectomy... the roller coaster of debilitating discomfort and pain".

Sounds like you are getting good care. Please google b12 injections after loss of ascending colon-- it is a must to have. Also, have other vitamin and mineral levels checked. I don't absorb vitamin D well now this the sublingual. You might be able to tolerate the a tablet.

I am not sure why, but when I drop to 2 Xifaxan a day, it doesn't work as well. Three seems to be the magic number for me. The reason I take 2 at night is to allow the Align get absorbed during the day before my night antibiotics. You can get Align over the counter. It's the only probiotic I tolerate. It makes a big difference for me to use it every day.

FODMAP seems to be helpful for many people. I haven't delved into it that far. I eat what I can and what agrees with me. Much of what I eat is FODMAP safe because my diet is fairly limited. The thing about FODMAP is that it probably works great for those who have all of their colon. You and I are missing crucial parts which affects our overall digestion, with, or without, FODMAP.

Please don't let the doctors intimidate you into thinking it's all in your head kind of deal. Doctors are used to being heroes and fixing problems and ours is a management issue-- for life. Most aren't so great about that. I ditched my old GI after he threw up his hands and I found a fantastic new GI who listens with empathy, reads articles I send him, tries things that are not typical such as indefinite use of Xifaxan . It's a quality of life issue.

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.

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

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!

Thanks. Looking forward to feeling somewhat normal again!

@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!

@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 🙂