Poor bowel habits/long term colostomy

[Jachut]

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.

[CRguy]

Reasonably often my stools are pale and oily too, though there's plenty or normal non oily ones.

Pale and oily could indicate a pancreatic enzyme digestive issue / malabsorption / malassimilation issue ...
SO ... get an opinion with an Internal Medicine digestive / GIT specialist, not just a GP or a "cancer" surgeon Doc.

There may be more issues here than just the off-handed " Oh you have a stoma ..."

" You will miss MORE for not looking ... than not KNOWING ! "
GIT specialists can and should have MORE investigations to explore for you
Get a specialist who will look at ALL OF YOUR SITUATION and not just the one specific complaint

JMO !

Cheers and best wishes
CRguy

[Soccermom2boys]

https://www.identifyepi.com/

I heard about this (Click on link above) on the radio recently and was looking it up because of some issues my dad has been having. And then when I read your post followed by CRGuy’s comment I thought this may be a place for you to at least check out and bring up to a doctor as a possibility.

I am really feeling for you—I have a permanent colostomy as well and they’re no big deal when all is well, but they definitely can ramp up the anxiety when you feel a large movement come through and rip the seal. Good luck and let us know if you find out anything definitive.

[boxhill]

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.

And this person is still your doctor WHY?? Get someone else. And I agree with the others: get someone from the correct specialty, not a cancer surgeon.

[Jachut]

I also have an upper GI specialist for other reasons and he may be the best person to speak to - I have an appointment in ten days. He is also very slow to admit a problem, he has not wanted to follow anything up either - in fact I just had an iron infusion after he ordered bloods in November. My ferritin was 7 but he never followed up, it was the GP who was merely copied in on the results who contacted me. I definitely have some sort of malabsorption going on. What is so confusing about it is that I only have a bowel movement two or three times a week - diarrhoea or any sort of IBD or any sort of malabsorption generally means frequency too.

At any rate I just need to get one of my specialists to refer me on. We are in lockdown again in Melbourne as of tonight so that makes things difficult.