Enterocutaneous fistulas 101

I'm going to explain the mechanics of Rich's fistula without showing pictures of his flesh. I feel like this is better for everyone involved. First, a definition. A fistula is generally a generic medical term for a leak between any two areas in the body that wouldn't normally connect. It can either be a connection to some other place inside the body or a new opening in your body. For example, women in developing nations who labor for multiple days without medical assistance frequently get vaginal fistulas from the baby's head pressing in the birth canal for way way way too long. It leads to an abnormal connection between the vagina and either the rectum or the bladder. Both are very bad. You could also develop an anal fistula where your rectum decides to create a new exit ramp so that in addition to your original exit path, you end up with a new leak on your butt. Also no fun and very painful.

But you can also get fistulas anywhere. You can have one where blood doesn't flow right in your skull. You could have one in your heart where there's a tear in an artery or something. They just mean that body fluids are moving outside their designated area because of a breach.

Rich, however, has an enterocutaneous fistula, caused when they tried to investigate inside him but the cancerous slime had stuck his small bowels to the front of his abdominal wall. They moved one little thing and his bowels tore. Now there is a hole in his intestines and it's leaking to the outside. Sometimes that happens if the intestines end up coming to the surface of the skin (like nature's ostomy). But in our case, there is a small hole in his small intestines just after his stomach and it is leaking into his abdominal cavity. The reason he's not going septic is because it's able to easily exit out the incision down his front as the path of least resistance. While it's annoying to have small bowel fluid coming out a hole in your chest, it's way better than it being trapped inside him causing infection.

Your body produces fluid in your intestinal tract all on its own. According to the surgeon, you make up to 6 liters of fluid a day. So even if you don't eat or drink a thing, there is still lots of fluid in there. Your large intestines are primarily responsible for removing the water from your digested food. That means that the contents of your small intestines are extremely watery. It's not quite straight water, but it's maybe like soup stock. It only takes the tiniest hole to make a lot of output. Small intestines are very delicate, so repairing them can be like sewing together wet toilet paper. Let's use this exam glove as an example.

It's health and sealed and full of water. We put a tiny nick in one finger of the glove.

Once we turn it over, the glove is empty within five seconds just from gravity.

The output is also extremely acidic, since the small bowels are where the majority of digestion and nutrient extraction takes place. Inside the magical make up of your intestines, it's safe. But if it leaks out, it eats away at the weaker tissues.

That's why it's critical to have the skin protected around the fistula exit. When Rich's incision was still very new (and very deep in some places), the bowel fluids were coming out of all kinds of exits. It meant we had to do a lot of arts and crafts to cut just the right size opening to protect as much skin as possible. Now, we have migrated to just one opening, smaller than a q-tip, halfway between his sternum and belly button.

That's why we have moved from the original high output wound pouch ...

... to a new urostomy style pouch.

There is only enough real estate on that skin barrier to cover an area the size of your palm, but it allows more of your healthy skin to stay exposed. Hypothetically, it should also provide a better seal as it gradually goes from wafer that's a few millimeters thick to something the thickness of a thin fabric band-aid. The flange then attaches to a separate pouch that can either contain the output or connect to a foley bag and drain there.

Seems easy, right? Take a second and look at your own belly. Is it perfectly smooth? Hairless? No creases when you lean forward? Now imagine two surgery's worth of scar tissue winding along there. It may be a bit of a jagged valley instead of a smooth beach. It is imperative to get as tight of a seal as possible to prevent leaks. Water in any form is incredibly sneaky and will find a way to infiltrate, erode, and create its own paths. Just look at the Grand Canyon. Water did that.

The best surface to bond to is clean, dry, healthy skin. But after surgery, wound packing, and six weeks of fistula output, the skin may be anything but healthy. Now you have to decide the best course of action. A hair dryer will get the skin dry but the wafer skin barrier will not want to stick to raw skin versus healthy skin. You can add stomahesive powder to the skin which will create a barrier, but it may also allow for leaks as it is eaten away. You will need to use more of the barrier rings as well as some other random bits of wafter cut into odd shapes to fill in the valleys on the skin surface. That skin barrier is not very flexible, despite its thinness and the plastic flange makes it all the more stiff. We have to build up all the places where we can't force the wafer down.

But as the bowel fluid comes in contact with the wafer, the wafer swells and eventually turns to jelly as it's eaten up. It's the ostomy version of sandbags but only lasts so long.

You can add paste if you're feeling particularly sadistic. It's like medical caulk but it feels like caulk when you're trying to pull it off. And it too is only but so resistant to the constant onslaught of acidic bowel fluid.

Most stomas from colostomies, ileostomies and all the other ostomies bulge away from the skin a bit so that the output will flow down from that mushroom cap into the pouch. In our case, since it's a leak in the valley of an incision, it naturally wants to pool in that little valley versus flow out into the pouch.

All that is to explain what we're doing these days. We try not to obsess over the milliliters of output each day because it could mean it's healing or could mean it's trapped inside him for a day. Or it could just mean nothing. But hopefully, the tear in his small bowel will heal and he'll stop leaking. Then we can move on with our lives.

And if you happen to know anyone with an ostomy pouch, whether they're the patient or a caregiver, send them a card reminding them how awesome they are at literally keeping their shit together.