Interested in hearing about people's long term bowel function after radiation.
By way of brief review, I had rectal cancer ten years ago, had ULAR after chemo radiation, then six moths 5FU, thankfully all cured. My ileostomy was reversed but that eventually failed, I developed obstruction and could not defectate without an enema, probably due to radiation damage. I had a rectocele as well.
I elected for a colostomy in 2013 which I was happy with (and still am for the most part). However my problem has been steadily worsening bowel function. I tend to not go at all for 3 or 4 days, but in that time I have bouts of stomach discomfort, and lower tummy cramping, feeling as if I am about to pass a stool, but it doesnt happen. Then on day 3 or 5, I will have explosive diarrhoea, usually 2 or 3 bags full within ten minutes, and very often, the first is so forceful and copious that I have major blow outs. Reasonably often my stools are pale and oily too, though there's plenty or normal non oily ones. And it STINKS. Really bad, not that anyone's sh*t smells good. There is always some discomfort, sometimes mild, sometimes awful.
I avoid lactose which has solved bloating and pain/flatulence issues, but no other dietary measures have been successful. I usually have to take immodium afterwards as I feel really queasy and unsettled. Low iron is a constant problem for me too.
What I dont understand - how do you have frankly liquid stools after they've been inside you for three days? I cant really control it with immodium as I never know when its coming, and if I take too much, I just dont go at all. I have anxiety over disasters happening, as luck would have it, I always feel it coming on right before say, a hairdressing appointment, or just as I am about to leave for work. I teach Phys Ed and have been stuck up on the soccer oval miles from a bathroom with 30 kids as I feel the firehose erupt more times than I can count. The absolute terror of knowing it may blow at any minute but not being able to do anything about it is awful. I'm really at the point of quitting work and finding something I can do from home.
I'm just wondering if anyone has had similar long term outcome (particularly after chemo/radiation). To be honest, most doctors I've spoken to are pretty disinterested and just say "well, you have a colostomy, what do you expect?". But I was led to believed that with a sigmoid colostomy I'd have semi formed output. And that's what I had early on.
I know I have to speak to my surgeon which I have not done so far because he gets annoyed and thinks I'm a hysterical woman. He made me wait two and a half years before he accepted something was wrong and sent me for tests prior to my colostomy.