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.

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Profile picture for dboesten @dboesten

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.

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@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?

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Profile picture for Lisa Lucier, Moderator @lisalucier

@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?

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@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.

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Profile picture for dboesten @dboesten

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

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@dboesten I went to the mayo clinic. They don't do the surgery. I ended up getting an ileostomy and dont have sibo anymore.

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