Setback and a Stoma

I wake up with stomach pain. The cramps, located below the upper abdomen, come in waves. The alarm clock gives 3:00. I put on my slippers, walk to the bathroom, drink some water and take a Burana. Then I hurry back to bed.

But I can’t sleep anymore. The pain gets worse, and I gradually start to feel nauseous. I get up again and sit on the edge of the bed with my hands pressed to my stomach. The pain is better manageable that way. My husband, awake meanwhile, brings me a bucket. It isn’t long before I start vomiting.

I try to think what the cause of the pain might be. A stomach flu or food poisoning? We had an oven dish with eggplant, tomatoes, and mozzarella. All ingredients were fresh and cooked well. No dessert, only a cup of coffee. Or is this a side effect of the chemo? But my last chemo was already two and a half weeks ago. This should have been my “glorious” (long walks with friends and pizza on Friday) week before chemo nr 8 would start on Monday. I feel anything but glorious. Could it be tumour growth in my abdomen? I can’t figure it out and decide to take another painkiller, Targiniq this time as it’s heavier stuff.  The pain only intensifies.

I feel sick and worried.

You should call when you have fever or serious pain, the words of the nurse are imprinted in my mind. I don’t think I have a fever, but I certainly would classify this as serious pain, so I decide to call the hospital. 

A male voice on the phone. He tells me to come to the emergency at 8:00 in the morning. 

I take a shower and get dressed. With a plastic bag between my knees and a towel in my hand, my husband and I take off to the emergency room. 

Luckily, there are no other people in the emergency hall. I’m called in by a nurse. I don’t need to explain why I’m sitting in her office. She quickly gives me a disposable vomit bag and I’m swiftly put in a separate room where blood, urine and vital functions are tested by other health staff. Meanwhile the pain is excruciating, I feel cold and keep throwing up. 

The blood tests soon reveal that my leukocytes are too high. I’m receiving pain medication and the CT scan taken around 11:00 shows an obstruction in my bowels. Shortly after, a nurse comes with a cup of water and a straw. He tells me to drink the water while he tries to insert a nasogastric tube through my nose into my stomach. “Maybe this will remove the content above the obstruction and relieve your stomach, " he says. 

I gag and tears are running down my cheeks, but he manages to get the tube in place. Unfortunately, no fluids or gas escape through the tube. The bowel stays blocked.

It doesn’t take long before the doctor comes in. “You need immediate surgery,” she declares. I nod. I’m exhausted and feel I’m losing ground. I text my husband who was sent away earlier and ask him to come back.

At 15:37 I’m off to the operation room and at 2:50 in the morning  I’m back to the familiar gynaecological ward with a stoma glued to my stomach.

*

Hospital

In the morning the gynaecological and gastrointestinal surgeons come by my bed and tell me that the intestinal obstruction was caused by abdominal adhesions. After the previous surgery my bowels had begun sticking together and caused a blockage. They also explain that abdominal adhesions are a common complication of surgery.

“We first tried to perform a laparoscopy but your bowels were a mess,” one of the doctors tells. “So, we decided to perform an open surgery and use the previous surgery incision to release the adhesions and relieve the intestinal obstruction. Altogether it took us six hours and as you were informed about before surgery yesterday, we needed to insert a stoma.” 

“You will get 4 weeks to recover from this surgery before we continue with the last three chemos,” the gynaecologist added before leaving.

Stoma

Back in June, the reason I was so relieved upon hearing that I did not have to get a stoma was due to my previous experience as a nurse at an internal diseases ward.

For four years I had treated stoma wounds and changed the bags of various patients in the Netherlands and Germany. I didn’t mind cleaning pee and poop and was meticulous at wound care. It was a professional thing;I never felt I wanted to practice or experience stoma care on a personal level. 

I might have been technically good at stoma care but writing this epistle, I wonder now whether I, as a young nurse, had enough eye for the psychological impact of a stoma on my patients. 

I’ve been back home for ten days now and rationally understand I should learn to accept the thing on my stomach but so far, I only feel embarrassed, handicapped, ashamed, irritated, and uncomfortable.

I had no idea that a stoma would have so much impact on my lifestyle. The bag completely took over my life. It determines what I eat, where I eat, how much (or little) I eat and when I eat. For instance, I’ve noticed that it’s better for my night rest not to eat at all after 18.00 anymore.

Also, my clothes choices are affected by the stoma as the bag sits just under my waistline. All my jeans and skirts can stay on the shelves. I’m currently wearing sweatpants. Like hospital gowns, they make me feel shabby and untidy. For many this may sound like a small thing, but after I was diagnosed with cancer, I swore to myself that every day I would make an effort to get up and take care of my appearance and dress properly! For me, sweatpants just don’t classify as proper (or flattering) clothing.

Concerning my social life, I now need to carefully plan my walks with friends. Ten days after the surgery I’m back to three-kilometre walks, which is great, but gas, cramps and bloating can easily spoil my stroll. Also, afraid of leaks, I’m carrying a bag with stoma supplies and extra clothes with me all the time.  

Since January, I’ve been on sick leave, spending my time at home on most days, which gives me time to quietly get used to my new toilet routines. But I wonder how I will deal with my discomfort once I’m back to the office, or even worse: back to public life. Emptying the smelly pouch in a public toilet? Travelling by plane? Eating in a restaurant? Going to concerts or to the gym? How then? 

I know there’s a huge mental barrier here. It’ll take time to learn to cope with the thing on my stomach. But farting in public? Just writing this makes me feel embarrassed. I simply was not raised that way.

*

On the positive side, before my release from hospital the surgeon came to see me and informed me that my stoma might be temporary. “Once the cancer treatment is finished, you should come back and we’ll see if your stoma can be reversed,” she said. 

I know it might take a while as breast surgery might also be in the planning next year but in contrast to previous surgeries, this might be an operation to look forward to.