Permanent SIBO due to removal of ileocecal valve

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

Jump to this post

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

Jump to this post

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. ❤️

Jump to this post

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

Jump to this post

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"

Jump to this post