Postby Surroundedbylove » Mon Apr 09, 2012 12:18 pm
There have been several questions recently about clustering so I thought I'd try to recapture what I've learned from my surgeon and rad onc about the clustering and solutions:
In layperson terms, the clustering happens because your colon is designed to move waste along while a rectum is designed not to do that but instead to act as an expandable "storage tank" until approximately 1/2 cup of waste is collected and then your brain is signaled that it is time to go and release that waste. Your brain can signal back "wait" for a little more waste in normal circumstances with a rectum. Once you've had rectal cancer surgery though, we don't have a complete rectum to function as a holding tank. The colon that is used is still pushing the waste along, hence the clustering with small amounts releases and the constant need to "go." Over time the portion of the colon that needs to adapt to being a neo-rectum will generally slow down and function more like a rectum. In talking with my surgeon, the key to that adaptation - at the right point after surgery - was NOT to use high insoluble fiber foods (whole wheat, etc.) because those foods push the waste along. The key is soluble fiber foods which will expand, and thus stretch out the neo-rectum - whether it is a colonic j-pouch or a straight connect. The soluble fibers work to expand the tissue helps the adaptation as a neo-rectum and eventually in most cases the neo-rectum will then function more like a rectum (holding "tank") and less like the colon that it is.
I'm now able to eat high insoluble fiber foods - but keep in mind that some of that is because of the Entocort EC (mentioned above). Now I actually need the insoluble fiber to push things along. If I ever am able to go off the Entocort EC I'll have to adjust again and see what combo of soluble fiber and insoluble fiber works best for me.
Surroundedbylove
Rectal Cancer @ 43, '08
Clinical: T3,N2a,MX (IIIB)
6 wks XELOX & radiation
LAR, colonic j-pouch, & temp ileo '09
Surgical: ypT3,ypN0,ypMX (0 of 20 nodes)
FOLFOX; XELOX
Ileo Takedown ‘09
LARS for 10 years before learning it is finally being studied
InterStim Sacral Nerve Neuromodulator 2019