Permanent SIBO due to removal of ileocecal valve

Well, your timing is good, but the news is not. During their initial tests, a mass was found on the outside of his stomach. This is not causing his ongoing diarrhea, but it is likely the cause of recent appetite loss. So, this obviously has to be tackled first, and we just had our first appt with the surgeon today. The topic of ICV surgery is on hold for now.

@dboesten - well, I am glad to hear you are getting some answers, though it does not sound as though they are pleasant. I'm glad there is something concrete that can account for your husband's appetite loss, but a mass is definitely not fun.

In my very first colonoscopy two years ago, they found a cancerous mass (neuroendocrine tumor) that had been removed during the procedure, thinking it was a polyp like a couple of others they found and removed. But the lab told something different. The good news with this story is that after a few months of testing, they finally determined that all the cancer was removed from my body with that initial tumor, leaving no remnant at all.

How did the appointment go with the surgeon? Will he be having surgery? Would they biopsy this mass at the time of the surgery to learn more about it?

I am not giving up hope of finding a surgeon who performs ICV replacement surgery for my husband. I found an article from Boston Medical Center on it and others as far back as 1981. It's not a new idea and there has to be someone who does it. We are currently scheduled for a consultation at Mayo, but I know it is a first step at best. I'll post an update once there's something to share. db

@lisalucier There was a needle biopsy and they're certain it's a return of the same type of cancer as the appendix cancer. It doesn't spread quickly and seems to attach to the outside of organs. The fix is surgery, but the risks are scary. He just needs to think this through.

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.

@tiss I just found this website! I had a resection in early 2010, with removal of lexical valve, 1’ of large intestine, and 15’ of small intestine. My gut is pretty sensitive but, for the most part, I’m ok. I recently switched to a different gastrointestinal doctor and the symptoms I described to him were SIBO. No other doctor EVER mentioned this to me. I’m certain I’ve be dealing with this for years and trying to manage my ‘new normal’. My new doctor prescribed Xifaxin and that has certainly helped!! I’d rather not take meds and manage with probiotics and diet. I really need to find a qualified practitioner in the Atlanta area. Gastro docs focus on drugs and surgery…
I did find a great book by William Davis, Super Gut. I am reading his book and going to follow his diet plan.
Has anyone else with similar circumstances followed his protocol and had success?
Thank you.

@lall ileocecal**

@lall
Yes - resection in 2008 tool ascending side and part of small.
So far Xifaxan helps it, but like now; after off it 3 days my symptoms start again.

@dt61 have you had success with diet management and/or managing triggers? Yes, the antibiotic has helped me too. This was my first round and this morning was the last dose. I am hoping it lasts. I will add specific strains of good bacteria, mentioned in the book Super Gut, by William Davis, and cut out grains (except for sourdough)🙂 I have modified my diet significantly in the past few years too.
I’d really love to find a functional doc near me that can help with management. I’m in a north Atlanta suburb.

@dboesten - well, I am glad to hear you are getting some answers, though it does not sound as though they are pleasant. I'm glad there is something concrete that can account for your husband's appetite loss, but a mass is definitely not fun.

In my very first colonoscopy two years ago, they found a cancerous mass (neuroendocrine tumor) that had been removed during the procedure, thinking it was a polyp like a couple of others they found and removed. But the lab told something different. The good news with this story is that after a few months of testing, they finally determined that all the cancer was removed from my body with that initial tumor, leaving no remnant at all.

How did the appointment go with the surgeon? Will he be having surgery? Would they biopsy this mass at the time of the surgery to learn more about it?