Christmas Day 2016. I have recovered from the liver transplant in May that I needed to stop my primary sclerosing cholangitis, a degenerative liver disease that, without a transplant, can cause cirrhosis and eventually death.
Now I face repeated hospitalisations because of my other health problem, ulcerative colitis, a bowel disease, since September of that year. I’m yellow, breathless and staggering around in a restaurant with my family, who are all clearly convinced that I’m going to collapse at any moment. Ulcerative colitis has blighted my life for nearly 25 years, and I think it’s finally killing me.
Ulcerative colitis is a chronic condition in which the colon and rectum can become inflamed and painful. Symptoms are typically absent between flare-ups, which was the pattern I had had since I was diagnosed about age 11. Stressful life events seem to make it worse. The primary symptoms are abdominal pain, diarrhoea and what they call in the trade “urgency,” which basically means “I have to get to the toilet right now.”
It can also cause anaemia, and it did in my case, sometimes severely, leaving me feeling very tired and breathless. Still, it was sort of manageable my whole life, and I had never been hospitalised with it until after my liver transplant. A few months after that, it was the worst it had ever been, and I was in and out of the hospital until the surgery in August 2017, when they offered me a “cure.” An ileostomy.
“Well, Mr Beeley, we can cure you. We’re going to cut out your bowel and you’re going to poop through a tube sticking out of a hole in your abdomen. The surgery recovery period is usually about five days, but you will damn near bleed to death, not eat for five days and be in for 2½ weeks.” (I had some other stuff going on in my surgery. Normally the procedure is pretty simple, so don’t worry if you’re ever going to have it. You’ll be fine.)
“The first time you do it solo, you feel like you’ve just ridden your bike for the first time or passed your driving test. But then within three months, you don’t even think about it.”
“The tube will fart loudly in meetings at work with no warning, and you’ll have no idea whether to explain to everyone what the noise was. You’ll poop all down your suit in the car on the way to a wedding and have to go to the whole event in a Slayer T-shirt. The bags stick really well, but within four months you’ll have a big swelling around the tube (parastomal hernia), and the bags won’t fit nearly so well. You’ll go away with your wife for your anniversary and ‘leak’ (that is, poop) all over the bed in the night.”
“You will have to wake up at 3:30 in the morning every day forever because the bag will not hold enough to keep you going through the night. And if your liver acts up (which it will for me, sadly, because the ileostomy isn’t the only medical problem I have), the bag will fill up ridiculously quickly and you’ll have to empty it up to every hour. You were obsessed with knowing where toilets were for 25 years, and this cure will do nothing to help that.”
“What do you think about that, Mr. Beeley?”
“You know, I’m not sure about this ‘cure.’ I think I’m going to get a second opinion.”
That’s honestly what I would have said. I’ve had my ileostomy for 3½ years now, and I still think that it sounds awful. The first thing to get used to is changing the bag. You do that in the hospital while you’re recovering from surgery, and they send a nice nurse to talk you through it and see how you’re doing.
“So basically, Mr. Beeley, you need to just take the bag off and then BE CAREFUL because you could poop down your front at any moment, with no warning.”
There are no nerves in it at all, so you can’t feel a thing. It really will just poop with no warning whatsoever.
“Then you need to clean all around the skin like this and then whip a new bag on sharpish.”
The first time you do it solo, you feel like you’ve just ridden your bike for the first time or passed your driving test. But then within three months, you don’t even think about it. Get all the materials prepped first (this is the key learning, really, do everything while the bag is still on) and then just whip it off, clean everything and put on a fresh one.
And that’s just as well, because inside of three months you’re going to wake up with a leaking bag. It sounds pretty dreadful, and it is. But you get used to that, too. I had a week recently where I woke up with a leaking bag three times in five days. Wake up, whip it off, slap the new one on and go back to sleep.
By now you’re probably wondering about sex. That’s got to kill the mood, right? Having a bag of waste stuck to your front. It’s pretty far down your abdomen, too. Near the important stuff.
I certainly count myself lucky that I was married when I got mine, so I didn’t have to sell it to a new partner. As with changing a bag, preparation is the key. You certainly want to empty it first. I like to put a large, elasticated belt over mine. (It’s to help prevent the parastomal hernia I mentioned above, but it wraps the bag up nicely.)
At first I thought I would absolutely always have to have the belt on, so neither partner is thinking about the bag, but to be honest, you really just get used to it. Having sex with an empty ileostomy bag is no worse than having sex with an empty bag of crisps stuck to your stomach. It flaps about a bit and makes a weird crinkly plastic noise, but, really, who cares?
I guess perhaps there are people out there who would be weird about it, either the person with the bag or the other person, but honestly I find it hard to remember I have a bag all the time, in the bedroom and out of it, and so does my wife, and I suspect so would 90% of other people.
I’ve come to love my ileostomy. Most people have an option to get something called a J-pouch, which is like a bag but inside your body, and they connect your bottom to it so you don’t have to poop out of your front anymore. I can’t have one of those because of my medical history, but I’m not sure I would want one anyway. I’m proud of my bag.
It was a hell of a thing getting it, and it’s a reminder that I’m a survivor. Everyone with an ileostomy has started off being ashamed and frightened and confused, and we’ve all come out the other side strong, and proud, and amazed at what we can achieve.
My bag is a constant reminder to me that I can face my fears and not only survive but thrive, and I’m proud to be a part of a global community of people with ileostomies who have all done the same.
This article first appeared on HuffPost Personal
Have a compelling personal story you want to tell? Find out what we’re looking for here, and pitch us on firstname.lastname@example.org