I posted a photo of my naked stoma (sans bag) on Facebook the other day. Someone I know quite well asked me, pointing at the weird little pink think poking out of my belly, “what exactly is that?”.
That’s my stoma, I answered. My small intestine. That’s how I poop.
She apologised for being ignorant, but really it’s not ignorant at all. I wouldn’t have had any idea before Crohn’s disease and knowing that one day I might have to have one what it was either.
Good on her for asking and showing interest. Many wouldn’t. I was really pleased she asked. Although I talk about having Crohn’s and an ostomy quite freely, it made me realise that I probably use terms many wouldn’t understand, just kind of assuming everyone knows what I’m talking about. But without prior knowledge, why would they?
I post plenty of photos with my belly out and ostomy bag showing, but I’m not as free posting what’s actually under the bag! I’m sure most people get the basic concept, but sometimes I even confuse myself explaining exactly how it all works! Our bodies are beautiful but complicated things.
I tried to explain to my friend as best I could. She seemed quite amazed when she realised I’d had my entire large intestine removed! From there came more questions about how everything is connected and how we can function without certain bits.
I loved her curiosity, but it also made me realise that …
a) I shouldn’t assume people know what I’m talking about if I just say “I have Crohn’s and now I have an ostomy”
b) knowledge and understanding is power and very much a part of awareness and advocacy
c) I should better explain to anyone who is interested the what/why/where/how of an ostomy
So here is my attempt to explain simply and without too much technical jargon exactly what that little pink thing is protruding from my belly and how it all works!!
In a nut shell, I no longer have my large intestine (which includes my rectum) or anus. They were severely inflamed due to Crohn’s disease, so they have been surgically removed.
That leaves me with my small intestine. I can still eat normally, and food passes from my mouth through my stomach, and into my small intestine, where most of our nutrients are absorbed and food is digested. However, that’s where it stops for me!
Normally food would continue on through the large intestine, where it is broken down further, water is absorbed and the waste becomes more solid. It would then pass into the rectum and finally move through the anus and out of the back passage or bum hole as poo.
I cannot poo like this anymore. My surgeon created a stoma by bringing the end of my small intestine out through my abdominal wall (tummy), attaching it to the skin and creating an opening outside the body. This is the funny little pink thing in the photo, and this is now where poo exits my body. As my anus has been removed, my bum hole has actually been sewn shut. Nothing can go in or out anymore!
I have no control of the poo that exits through my stoma / ileostomy, thus I wear an ostomy bag. This adhesive bag (also called pouch or appliance) is attached around my stoma on the outside of my tummy to collect my poo. My poo is runnier than normal poo as I do not have my large intestine to break it down. The ostomy bag closes securely with velcro on the bottom so I can empty the contents (normally 4-5 times per day) into the toilet bowl, and I change the entire bag 2-3 times per week.
A few other facts:
– You cannot live without your small intestine, but you can live without your large intestine
– Your small intestine is actually longer than your large intestine at 20 feet (compared to 5 feet)
So that’s basically it! I hope this helps explain more clearly what I mean when I say “I have an ostomy” and what goes on behind (or inside) that enigmatic bag of mine! Please be curious, ask questions, the more inquisitive the better! I am happy to answer anything as best I can 🙂