10 Things About Having a Stoma That They Never Tell You

10 Things About Having a Stoma That They Never Tell You


Stoma: A surgical opening on the abdomen through which the small or large bowel is brought out and attached. It’s a Greek word for opening.
  1. You will become acutely aware of your own peristalsis. In fact there should be a verb for it…perhaps there is one? Or maybe it’s sufficient to say “oh, I’m peristalsis-ing”—doesn’t really matter, because you probably will only discuss it with yourself.
  2. Trying on clothes will almost certainly be more anxiety-ridden than normal because someone might walk in (happened), the curtain will definitely not be big enough to cover the cubicle door leaving a gap large enough for someone’s child to look through (always happens) and the whole process will be pointless anyway because you realize once inside that you didn’t wear the right sort of preparatory undergarments for trying on clothes and subsequently decide you can’t be arsed anymore and well, it’s easier to just go and get a coffee instead.
  3. If you get gastroenteritis and it seems kind of bad (I mean like, longer than a day) it is so, so not worth trying to wait it out like most ordinary people can. Go to the hospital and get some IV fluids. Why the hell they don’t tell you this I don’t know. I learned it the hard way one Christmas, and I’ll never feel silly about going to hospital just for an upset stomach again because it’s considerably more preferable than renal failure.
  4. After a while the idea of pooing normally actually starts to seem a bit strange. Other people don’t go this way? They’re conventional? That’s weird. On more than one occasion I’ve found myself thinking, do I actually miss that? My friend asked me a while ago when the last time I actually went to the toilet in the usual fashion and I figured it must be over six years. Six years! So no wonder I’ve forgotten all about it. Also, it might be a bit weird coming across any sort of…non-flushed stuff (first of all, why is it not flushed?) in public toilets. More than once I’ve opened the door, walked in, looked down (why do we always do that?) and thought holy God, what’s that?
  5. You may well find yourself sat with your dinner under a spotlight dissecting it (did this last night, I really wanted spring rolls—bean sprouts, I think not).
  6. As above, except everything with mushroom in. Yes, I realize that officially there are no foods you absolutely shouldn’t eat, however I think (a) once you’ve experienced a full on vomming feces obstruction you are very unlikely to think, “What the hell, I’ll just live with the consequences of eating this,” especially if it’s something new and (b) everyone has their own list of dodgy effect foods. I can’t seem to eat mangoes, coconut, whole grain stuff, and fish pie (weirdly and annoyingly).
  7. Sometimes it is to your advantage that (at least in the UK anyway) a stoma does classify you as disabled. As far as I know (and I wouldn’t want to be held completely to this), if you declare it to your employer you are more protected than if you don’t. Also, while we’re on this, there seems to be so much super-positive stuff on the Internet convincing people, especially people new to it all, that they are not ever going to be remotely disabled. But a disability can be absolutely anything that restricts you from being able to live a “normal” life. I don’t know anyone, and I really only know a handful of people with a stoma, who have not at some point been at a disadvantage because of it. This is not being negative, it’s being realistic. Sometimes it is definitely a disability. And that’s okay.
  8. Granulated tissue around a stoma never wants to go away, no matter how many time it gets jabbed at with silver nitrate sticks. Manuka honey won’t shift it either, even though it feels virtuous.
  9. If you’re ever an inpatient in hospital for something else, you will probably be asked 20 times (1) if you’ve opened your bowels today and what consistency was it, and (b) when will you be having have your INSERT APPLICABLE WRONG TYPE OF OSTOMY HERE reversed?
  10. You might find yourself sort of sorted about the whole thing for months at a time and then randomly having a freakout about it, as if from nowhere. This happens to me a lot. I can not even really think about it for ages and then suddenly it’s all I can think about. Sometimes I even get flashbacks, if it’s really bad. Just to times when I was really frightened, or being really sick (last time I was in hospital I had to keep those awful cardboard sick bowls at a safe distance because the smell of them triggered panic) or something. But then the next day it’s back to not even thinking about again. We’re talking over six years now, which in some ways is a long time and in other ways is not long at all. A freakout every few months I don’t think is too bad, but I do wonder if that feeling will ever reaaaaally go away.
– When Leah Carvell was 17, she was diagnosed with ulcerative colitis, a form of inflammatory bowel disease. This post was originally published on her blog, The Ileo Atlas.
  • Judy

    Great article, Well written.Tells it like it is.
    wish I could have read this before my surgery.