It’s not a dark night. The moon is high over the water and the sky is inky. There’s a breeze, just enough that you feel it on your skin. Cool, but not cold.
I’m standing tall on the edge of a cliff; my toes are over. I’m steady, but I’m waiting for someone else to push me so that I can fall, silent, down, into some blue void.
Maybe I’ll float.
Stoma.
Colostomy.
Bag.
Ileostomy.
Surgical resection.
Minimally invasive. But possibly a laparotomy.
I may not be able to save the rectum, in which case it will be permanent.
Procedure: proctocolectomy with ileostomy.
Complications: wound infection, bowel perforation, pneumonia, embolism, abscess, permanent stoma.
Conversations I wasn’t ready to have.
We’ve talked about this before, this beast of inflammatory bowel disease. It comes and it goes, and you know I’d been waiting for it to come back. In August last year it did. Oh, did it. It wasn’t so bad at first. A scope said only 15cm inflammation... not so extensive. Here, said the stupid, patronising German doctor: take these steroids and avoid dairy. Let me do a few thousand dirham of unnecessary tests to bill to your insurance, and it will get better. It did for a few weeks, until the steroids tapered down. Ok, let’s try a new drug. Let’s give it a few months. Nope, not working. Maybe you’re a delayed responder, we’ll wait. Still not working. I’ve read the studies; it should be working by now.
Switch doctors. Good move. Switch back to old drug that worked before, remicade. Can’t mix it with azathioprine unfortunately, because of the pancreatitis in 2015. That old chestnut.
Fly home for a month of r&r in August. Not feeling well. Flare, flaring. Time to get back on the steroids. Well you know what that does? Immunosuppression. Double kidney infection. What the actual fuck.
I’m standing tall on the edge of a cliff; my toes are over. I’m steady, but I’m waiting for someone else to push me so that I can fall, silent, down, into some blue void.
Maybe I’ll float.
Stoma.
Colostomy.
Bag.
Ileostomy.
Surgical resection.
Minimally invasive. But possibly a laparotomy.
I may not be able to save the rectum, in which case it will be permanent.
Procedure: proctocolectomy with ileostomy.
Complications: wound infection, bowel perforation, pneumonia, embolism, abscess, permanent stoma.
Conversations I wasn’t ready to have.
We’ve talked about this before, this beast of inflammatory bowel disease. It comes and it goes, and you know I’d been waiting for it to come back. In August last year it did. Oh, did it. It wasn’t so bad at first. A scope said only 15cm inflammation... not so extensive. Here, said the stupid, patronising German doctor: take these steroids and avoid dairy. Let me do a few thousand dirham of unnecessary tests to bill to your insurance, and it will get better. It did for a few weeks, until the steroids tapered down. Ok, let’s try a new drug. Let’s give it a few months. Nope, not working. Maybe you’re a delayed responder, we’ll wait. Still not working. I’ve read the studies; it should be working by now.
Switch doctors. Good move. Switch back to old drug that worked before, remicade. Can’t mix it with azathioprine unfortunately, because of the pancreatitis in 2015. That old chestnut.
Fly home for a month of r&r in August. Not feeling well. Flare, flaring. Time to get back on the steroids. Well you know what that does? Immunosuppression. Double kidney infection. What the actual fuck.
Take more steroids. Feel better for a bit. But then, unexpectedly a terrible bout of gastro. So painful that I ended up in hospital on IV pain relief, again more steroids, antibiotics. A few bumps in the road, said the specialist. We’ll try a double dose of the remicade, we’ll do it early. But it didn’t work and whatever control I had over the inflammation in my colon remained was gone and suddenly I was so unwell. So very unwell that I couldn’t sit up, couldn’t walk, couldn’t function. For a few weeks I thought, it’s just the gastro, it’s hit me hard and it’s taking a bit to get over it. But it wasn’t that. It was my colon, the ulcers and inflammation so bad that protein was leaking out the surface, spreading into my tissue, my feet swelling grotesquely, my face puffy and pale.
Emergency admission to the hospital; an urgent scope showed it to be much worse than expected and then out of nowhere a surgeon started to visit me to talk about what needs to happen next.
This is the loneliest, most confronting conversation I have had in my life. In the quiet, dark hospital room. A stranger in a crisp white coat, “You are very unwell and the longer we leave it, the more at risk you are of serious complications. I would remove the entire colon, with an ileostomy, and because there is so much inflammation I can’t say for sure, but it may be a permanent stoma. You need to start preparing yourself mentally.”
That night I spiked a fever and my inflammatory markers climbed, and things started to look pretty serious.
Then we waited and hoped that the new magic drug might start working. We waited. They gave me more drugs. More antibiotics. Four blood transfusions. And then, my CRP came down. And then it came down again.
I signed the forms for the surgery, and I waited for them to tell me that it had to be done, and I told myself that I was ready and I didn’t know exactly why I was so scared. I wanted them to make the decision so I wouldn’t have to, because I knew that I would wonder for the rest of my life, what if I’d just waited one more day for the drugs to start working?
But then my CRP came down even more.
So now I’m back at home, and we’re waiting. Waiting to make sure it doesn’t get worse, waiting for it to get better. For now, no surgery, but if anything changes then there’s no choice.
I was ready, you know. I’d started to imagine what it would be like. I pictured being taken to theatre and having the anaesthetic. I spoke to the stoma nurse and she showed me the bag, how you stick it on, how it fits the skin, the logistics. I thought I was ready, and then I wasn’t, but I didn’t need to be, and now my brain doesn’t know what to do.
I was at the edge of the cliff, and I took a step back. Slowly, I’ll take another.
❤
Emergency admission to the hospital; an urgent scope showed it to be much worse than expected and then out of nowhere a surgeon started to visit me to talk about what needs to happen next.
This is the loneliest, most confronting conversation I have had in my life. In the quiet, dark hospital room. A stranger in a crisp white coat, “You are very unwell and the longer we leave it, the more at risk you are of serious complications. I would remove the entire colon, with an ileostomy, and because there is so much inflammation I can’t say for sure, but it may be a permanent stoma. You need to start preparing yourself mentally.”
That night I spiked a fever and my inflammatory markers climbed, and things started to look pretty serious.
Then we waited and hoped that the new magic drug might start working. We waited. They gave me more drugs. More antibiotics. Four blood transfusions. And then, my CRP came down. And then it came down again.
I signed the forms for the surgery, and I waited for them to tell me that it had to be done, and I told myself that I was ready and I didn’t know exactly why I was so scared. I wanted them to make the decision so I wouldn’t have to, because I knew that I would wonder for the rest of my life, what if I’d just waited one more day for the drugs to start working?
But then my CRP came down even more.
So now I’m back at home, and we’re waiting. Waiting to make sure it doesn’t get worse, waiting for it to get better. For now, no surgery, but if anything changes then there’s no choice.
I was ready, you know. I’d started to imagine what it would be like. I pictured being taken to theatre and having the anaesthetic. I spoke to the stoma nurse and she showed me the bag, how you stick it on, how it fits the skin, the logistics. I thought I was ready, and then I wasn’t, but I didn’t need to be, and now my brain doesn’t know what to do.
I was at the edge of the cliff, and I took a step back. Slowly, I’ll take another.
❤
