lakeswim, I don't believe I ever had radiation proctitis. However my rectum was extraordinarily sensitive for at least a year after radiation finished. I was told the treatment causes the nerves to be much closer to the surface, presumably because whatever is normally at the surface got burned off by the radiation.
That sensitivity has slowly decreased over time, and the frequency of those sudden urges to go to the bathroom is greatly reduced. I have also become much better at managing those sudden urges.
Jolene, For the first year or so, when I was having quarterly follow up visits, it was pretty nerve racking. However I know the odds of a recurrence decrease as time passes, so the nerves also decreased as time passed. The odds decrease a lot after two years and that's when I was moved to twice a year visits. I wouldn't say the nerves totally disappeared at that point, but for sure I became much more relaxed about it all.
Peter, age 65 at dx
DX 4 cm x 4 cm very low rectal adenocarcinoma into the sphincters 01/15
Stage III T3 N1 M0 with two suspicious lymph nodes
26 sessions IMRT radiation with 1,000 mg Xeloda twice per day 03/15 to 04/15
Complete clincal response to the chemoradiation...the tumor shrank completely away 06/15
No surgery...Habr-Gama watch and wait protocol instead
Xelox chemotherapy 07/15-12/15
MRI and rectal exam every three months starting 07/15
MRI and rectal exam every six months starting 07/17