TINA
Tina is one tough chick.
And her tough chick nature started young. At age twelve, a dose of hepatitis triggered a family history of bowel disease. Her teenage years saw multiple bouts of irritable bowel resulting in three or four trips to hospital with diarrhoea-induced dehydration. Not your typical teenage years to say the least.
Years later, in her twenties, a trip to Europe saw Tina’s weight grow, like so many who visit the land of pasta, bread and beer.
“I came back from Europe vastly overweight and decided to start WeightWatchers.”
While you may be inclined to think that a high-fibre, low-sugar diet would do anybody good, that simply wasn’t the case. Instead of a bit of healthy weight loss all of the rouffage, the fibrous part of food that can’t be fully broken down, caused a flare up of irritable bowel. For over a year this continued ending with six weeks, yes six weeks, of diarrhoea. She visited her doctor every week for those six weeks but he continued to brush it off. At the end of the six weeks, enough was enough. Her husband Theo took her to the doctor and put his foot down.
“She’s dying. I’m not taking her home. She needs to go to hospital.”
And good thing he did too. Tina explains that things happened pretty quickly from there.
“The next day I was in theatre having my IUD removed, having a scrape of my insides done and being told I had septicemia.”
An infection had spread throughout her entire abdomen and resulted in blood poisoning. She was in hospital three and a half weeks and was diagnosed with non-specific ulcerative colitis. Good thing Theo took her in when he did I’d say.
“They wouldn’t let me out of hospital until I got my weight up to 50 kilos. I lost a week of my life. I have no idea what happened that week. I was so sick.”
Three weeks later, Tina was released from hospital and told she must avoid getting pregnant. She was much too sick. So from then on, as is so often the case we are told we can’t do something, that’s all she wanted.
In the end it took three years for Tina to fall pregnant with her first baby. And, despite expecting to be quite unwell during pregnancy, she wasn’t. And she took full advantage.
“I remember laying on the floor of the kitchen, on my back, belly in the air, painting the kitchen cupboards. And then, a week before I had Christopher, I dug the edges of our corner section with a spade. I ended up with a blood clot in my leg but the section looked good and I knew I wouldn’t be able to do it after the birth.”
Over five years she had three babies via cesarean-section. Those pregnancies however left her uterus fibrous and bulky. At age 32, Tina underwent a hysterectomy, which made it four abdominal surgeries in six years. Her body had been through a lot and she suffered with ongoing bouts of diarrhoea.
From her twenties, Tina’s bowel problems were a common occurance and she had colonoscopies every two years. It was the norm. Throughout it all though, she kept it quiet.
“I never even told my mum what I was going through. You just don’t tell people you have diarrhoea.”
At age 45 however, the regular colonoscopy found more than they had bargained for and Tina’s choice to keep things quiet was taken away. They found pre-cancerous lesions and that the colitis had rotted Tina’s bowel. She had also developed Chron’s Disease. All of a sudden she was faced with her options, none of which sounded very appealing, and all of which included surgery of some kind.
“I never mentioned the c-word to the kids. The doctors were convinced I had cancer. But I got lucky. It hadn’t turned yet.”
At the time Tina was working at the local hospital and, as she always had, she wanted to keep what she was going through quiet. She didn’t want to have her surgery there. She went to a specialist who cut to the chase.
“He told me that all of the options I had been given wouldn’t work. That I needed an iliostomy. In only six months, I was having my surgery.”
For those of us unfamiliar, an iliostomy is a surgically-made opening that connects the lower part of the small intestine to the abdominal wall creating a stoma. Intestinal waste then passes through the opening and collects in an external pouch or bag that adheres to the skin.
Between the specialist appointment and the surgery Tina underwent a battery of tests. Again though, she kept so much of her experiences to herself. She’d send Theo and the kids off camping while she spent three days at the hospital having tests. Eventually though, she had to tell the kids what was coming.
“It was the hardest thing I ever had to do in my whole life. The three kids sat there in a row and each one reacted differently. Rachel wanted to ask a million questions. Maria was quieter than ever and wanted Rachel to ask questions and fill her in. Christopher just blocked the whole thing out.”
All of the kids dealt with what was coming in their own way but what helped Tina deal with it was being in touch with a nurse dedicated to ostomy procedures. Tina refers to her as ‘my angel.’ She was also put in touch with people who already had ostomies. They became a support network that she still has contact with today, fifteen years later.
Surgery day came around and, while Theo waited in the carpark for ten hours, Tina was cut from breast bone to pelvic bone to have her large bowel and part of her small bowel removed. They created her stoma and then recovery began. For the whole first week after surgery, Tina had an epidural that blocked out a section of her abdomen and a lot of her pain. The only trouble was, they put the epidural in one vertebrae too high so the block didn’t cover the entire painful section. Nevertheless it was better than nothing and, having been a nurse, Tina knew that the best thing for her recovery was to keep her pain under control.
Finally Tina was sent home but only lasted ten days before ending up back in hospital. An infection caused a large abscess that burst and required yet another surgery to scrape out her insides. The graphic details of this experience is probably the most horrific part of what Tina told me. However, in true Tina fashion, she’d rather I keep that bit to myself. So, take it from me when I say you don’t want an abscess to burst.
Tina had six weeks off work to continue her recovery.
“I told work I was having ‘a woman’s operation’ so nobody asked me about it.”
Slowly but surely Tina could begin to do things. It started with simply managing to walk to the letterbox. Then maybe to walk to the closest light post. It was slow going and frustrating.
“Theo would come home and ask how the washing got hung out when I wasn’t supposed to be lifting anything. But they were so supportive. Theo and the kids used to trick me into taking my medicine. It became a game where every morning the girls would bring me my ‘juice’.”
With her now thirty-something son sitting next to her, Tina looked at me and, with a wink, explained that she “never knew” they were tricking her.
Over time, Tina regained her strength and, recovered without too many mishaps.
With candour Tina talks about her experiences. A woman who, for fifteen years, has carried medical supplies everywhere she went. Who empties and changes her ostomy bag like it’s second nature. She is brave and to the point.
“You work your way around things and just get on with it. Theo always said that as long as I coped, he could cope. So I did.”
It’s inspiring to hear Tina talk about her life post-surgery. She reflects not on what she can’t do but what she can. That for a long time she was limited by not wanting to be far from a bathroom. She didn’t hike or adventure throughout her twenties. Now, Tina and Theo adventure by motorbike. They go camping. She lives a life she is proud of.
“I don’t have the stress of worrying about an accident anymore. The fear of embarrassing myself held me back. I would have liked to get outdoors more but I had to work on having interests that allow me to be close to home. Now though, I can do more. The motorbike is the thing that lets me get out there.”
Tina’s perspective on what she can and can’t do is one we can all take ideas from. She talks about learning to say “you know what? My body can’t do that.”
“I can’t eat the so called ‘healthy’ bread with the grains and nuts. I have to eat white bread. I can’t drink wine...”
Tina doesn’t look too bothered by the inability to drink wine and as she finishes her sentence with a smile I understand why.
“...but I can drink whiskey.”
And that’s Tina’s advice for anyone who has limitations. And it’s quite simple.
“Instead of worrying about what you can’t do...focus on finding something you can do. Accept that you’re not the same as your sister or your best friend and move on.”
Three times throughout our conversation, Tina referred to herself as ‘lucky.’ She was lucky her lesions turned out not to be cancerous. She was lucky to have not had too many mishaps with her bag post surgery. And she was lucky to have not needed any more treatment since surgery. Yes she still takes daily medication and yes she has a bag instead of a bowel but you know what...she drinks her whiskey. And perhaps even more interestingly, she’s now starting to talk about it.