Short-lived Soccer Star

Last night, I played in a pick-up game of soccer. First real physical activity since my last surgery in November. I only lasted about 20 minutes before I had to stop - clearly, I am really out of condition. I was panting for breath and my head was throbbing - at one point, I thought I was going to pass right out. But I put my head under a cold tap and drank over a litre of water, and I felt a little better.

I was mostly worried about how it would be, playing with a bag. I used to play soccer like it was a contact sport, and I was afraid that I would fall down flat on my face, the bag would burst and there would be poop everywhere. My husband tried to reassure me, but I kept playing the poop-everywhere scenario over and over again in my mind.

So we're at the game, and I'm going for the ball, and wouldn't you know it, I fell down flat on my face. Hard. Scraped up my knees and elbows. I got up and felt around my stomach with a bit of trepidation - but hey! Everything was still intact! Nothing burst! Hallelujah!

Does this mean that hockey is next?

Happy Anniversary!

A year ago today I had surgery to remove my colon.

Looking back on that day, which I mostly spent either completely knocked out by the anaesthesia, or completely loopy from the morphine afterwards, I realise how far I've come since being so sick last year. And I am very grateful.

I remember waiting that Sunday morning for the call that I would be going into the operating room. My surgeon had come in on his day off to do my surgery, as it seemed that it really couldn't wait a couple more days. I had spent the previous 5 weeks in hospital in the gastrointestinal unit on the 5th floor, but on the night before surgery I was moved to the surgical unit on the 3rd floor so that I would be closer to the surgical suite. I was so incredibly nervous the night before - both my husband and my mother stayed with me to try to keep me calm, as I would spontaneously burst into tears on the slightest provocation. I had had a private room on the 5th floor, but I had to share the 3rd floor room with another patient.

When I had the private room, my husband would often spend the night with me in my hospital bed. Now I'm not a big girl and I had lost a lot of weight during my hospital, but my husband is 6'4" and so the fit in the bed was very tight (but also very welcome). He climbed into bed with me the night before the surgery to try to comfort me, and one of the nurses came in and tried to kick him out of the room. Luckily, I was able to plead with her to let him stay, as there was no way I could be alone that night. I mean come on, what was I going to do with my husband in the hospital bed, another patient right next door? Remember, I was there with a bad case of colitis - it's pretty hard to feel sexy when you're running to the bathroom every few minutes with bloody diarrhea.

The next morning, I was on pins and needles waiting for the intercom announcement that I would be going in. I finally heard it around 9:00 am: "Pre-op, bed 2-1". And then everything happened very fast and before I knew it, I was on the gurney while the porter wheeled me to the waiting area right outside the surgical suite. I was crying my eyes out and clutching my husband's hand - luckily, they let him into the waiting area with me, which is a little out of the ordinary. Letting go of his hand right before I went into the operating room was the hardest thing I had ever done up to that point in time. And again with the tears.

Just to clarify - I didn't have what I've heard are the classic fears of surgery, i.e. waking up in the middle of the surgery, or not waking up at all. I was scared because I didn't know what to expect after the surgery - no colon, new ostomy, would there be pain, how much of it, that sort of thing. Although it had all been explained to me, I still wasn't sure what to think or how to feel about the whole thing. There was still a stubborn part of me that thought if I could just be patient, I could ride it out and this too would pass. Stubborn, and a bit delusional.

So I get rolled into the operating room, which was extremely bright. I didn't have my glasses on and I am extremely near-sighted, so I couldn't make out very much. I remember being rolled onto the operating table, which was much narrower and colder than I thought it would be. I had my arms spread out on the table extensions and I waited there while the prep work was being done and while the very pleasant anaesthesiologist explained what would happen next. I last thing I remember before falling asleep was a strange sensation along my arm as some sort of medicine coursed through my veins, and the plastic smell of the mask that was placed on my face...

Apparently, I was in surgery for approximately 6 hours, and then another couple of hours in the recovery room. I vaguely remember coming to every once in a while in the recovery room and trying to ask for more pain medication. I also remember having a few blood transfusions while in there, as it seemed that my blood pressure was too low or my pulse rate was too high - not quite sure, but it seemed like I was in there a while. I also remember hearing nurses talking with each other about why I was in there so long, and then finally I had clearance to leave and be put back into my room.

I had a bit of trouble while I was waiting for the porter to take me back to the unit. I was on a PCA pump - which stands for "patient controlled analgesic", I think - with morphine to control the pain. The way it works is that an IV tube is in the patient which is in turn connected to the pump. The patient decides when to receive the morphine and presses down on a button to have the morphine pumped into the IV tube. But there is a hospital policy that you can't have any more pain-killers within 20 minutes of being transported, so the nurse had to stop my morphine for 20 minutes before the porter could come to take me back to my room. But unbeknownest to everyone, the porter decided to take a break and I couldn't receive any more morphine, so I was in quite a bit of pain. The nurse was very apologetic and gave the porter hell on his return. And that's how I left the recovery room.

I remember seeing my husband and my family waiting in the hall for me as I was being wheeled to my room. The porter asked me if I wanted to stop and say hi to them, but seeing as I was hurting, I told him to take me directly to my room so that I could be hooked up to my PCA as soon as possible. So, I wound up in my room, the nurses were waiting for me to do all the post-op workup, and after another 20 minutes or so, I was allowed to see my family. I confess that I don't remember much of who was there or what was said - I don't think I talked very much as my throat was so dry and I had tremendous difficulty even trying to form words with my mouth. I just remember the look of relief on my husband's face. And I'm thankful that he spent that night with me, although it was cramped between two hard chairs.

Afterwards, I got a glimpse on what it was like for my husband and the other members of my family. Apparently, the whole family was there, including all of my inlaws, for most of the 7 or 8 hours I was in there. My husband couldn't eat a thing the entire time. My sister, who was so tough and upbeat right before I went in, trying to cheer me up and comfort me, broke down into tears as soon as I was wheeled into the surgical suite. It seems that she was pretty inconsolable throughout the surgery. I guess I didn't really appreciate the seriousness at the time, but everyone was incredibly worried. I still feel somewhat guilty over putting that, regardless of whether or not it's reasonable to feel that way.

So, that was a year ago today. Good times. But I am incredibly grateful for the last year, despite the hard times that followed. I did get my life back. And that's a pretty big deal.

I should really send my surgeon some flowers.

Support Groups

Just a quick note - the Edmonton Ostomy Association, a member of the United Ostomy Association of Canada, is having its next meeting on Tuesday, March 6th, at 7:30 pm. The location is the St. Andrews Centre, 12720-111 Avenue, Edmonton. The meetings are on the first Tuesday of the month, except for the summer.

If you have an ostomy and feel that you can't relate to anyone, try to make it down to one of the meetings. Sometimes it helps to meet others who have gone through the same thing as you, and now live healthy and productive lives. Having an ostomy is not the end of the world - in most cases, it actually saves your life.

So come on by, feel better - I dare you.

Sally's Story

One of the things that I would like to do with this blog is to post stories of other people's experiences with ulcerative colitis. The following account was written by Sally Bellerose, whom I first mentioned on this blog on January 16th. You can find a link to her site under "other good stuff" on the right.

And now, in her own words:

One of my very first memories involves ulcerative colitis, the disease that, as a teenager, I came to think of as ‘the dreaded bowel disease’.

At a very young age I learned to scout out the nearest ladies’ room and carry plenty of tissue. My first memory of the consequences of not making it to the bathroom on time involves pink snowsuit with suspender pants and my Mom’s face red with fury. I was four years old, playing in the back yard on a winter day, all bundled up to keep out the cold. Under the direction of my older brother, I bent over a huge snowball, trying to help push it toward the ‘snow fort’ he was building. I got a pain in my belly and ran for the house. As I fumbled to take my mittens off and turn the knob to ge t inside, I yelled, “Mommy, I gotta go.”

Mom, busy changing my baby sisters’ diaper, told me to “hold it a minute.” Experience and the pediatrician told Mom it was not unreasonable to ask a four year-old to control their urges for sixty seconds. But this four year-old could not and did not comply.

Once Mom got me cleaned up, she spanked me. I had never been spanked before. I have no visceral memory of the slaps hurting. Probably there was little physical pain from the ‘punishment’. I remember Mom’s eyes wide with anger, the frustration in her voice, the sagging disappointment in her shoulders when it was over. I am not down-playing the all too real physical pain of UC. But for me, fifty years after that first (and last, bless her, Mom was a good mother who made a mistake) spanking, the worst memories of the disease remain the shame, embarrassment, isolation and self esteem prob lems that the need to conceal the awkward ‘urgency’ created.

I can still feel her shame and mine, as I write about it, this very moment. I can feel her fear; that I was out of control; that she was out of control.

This was the beginning of my education about the power of fear of loss of control as it relates to disease. Obviously, this thought didn’t come to me as a four year old. All education, including prejudice, is influenced by ‘feelings’ and starts with the very young.

But even at four, the message - if I didn’t want to get walloped it was best to keep my lack of bowel control concealed - was clear. With age I learned that the symptoms of the dreaded bowel disease could not only make Mommy spank, but could induce boys on the playground to taunt, and teenage girls to titter.

People need to feel safe. I sure do. Who wants to be reminded that we are soft- skinned vulnerable creatures? For security sake we need to feel in control of our environment and our selves. All kinds of conditions threaten that control. What could be more basic than the need to feel safe in our bodies? That we are born dependent can’t be denied, but a few years after birth, control of bodily function is a given for most people. Disease, disability, any condition that takes away that baseline of corporal control is a kind of body betrayal to the person affected and an unsolicited reminder to the well and the unwell that humans are vulnerable and that (forgive the very bad pun) ‘shit happens’. But things do go wrong. All bodies refuse to work as desired at some time or other. As humans, we don’t want to be confronted with the fact that no amount of research, medical break-through, or new technology is going to keep our bodies from eventually breaking down.

We are at risk, some more than others, but not just four year-olds getting spanked for a situation beyond her control, or old folks with a confirmed diagnosis, all of us, at one time or another. Most people are not happy to be reminded of their own frailty. I think most chronic illness, but especially conditions like UC, which exposes the messiness of life, scare people because they are forced to consider their own tenuous bodies. People who are well want to believe that disease happens to other people, other people who have somehow lost control, older people or people with less access to care, people unlike themselves.

But it’s not just UC that people fear. My real life dad has Alzheimer’s. I write, sometimes, about a demented dad. People often ask, “How do you feel about exposing your father in print?” They mean, “How could you possibly disrespect your dad by portraying his dementia?” For expedience and self protection I lean on the, “I write fiction,” answer.

I really “feel” that dad suffers from an extreme of a universal condition. All people in the real and imagined world are a bit doddering. Our minds, like our bodies, just don’t always do what we want them to do. This is not news to anyone with an iota of self awareness. No one escapes this human condition. If you think you are never weak-minded, you are, at the least, in jeopardy of being a bore.

Say you won a Pulitzer in Literature at 30, and died in a car crash at 32; some part of you died mentally frail. You may have been successful at keeping your fragility from your editors, publishers, and readers, but something in you was teetering and foolish.

Like failures of our GI tracts, whether in a big way as happens with UC or in a more contained and only occasional way, as happens with an intestinal virus, all our systems fail all of us, in greater and lesser ways.

As a writer, the danger is presenting a ‘Dad with Alzheimer’s’ character as only infirm. No writer is talented enough to convey the exact complexity of a human being. This is no reason to settle for a stock portrayal of “the Alzheimer character”. A living person and any character worth reading about can’t be summed up by a diagnosis.

In fiction and life, the way a person’s body and mind function are facets of who they are. A danger for the person with UC is buying in to the belief that we are the disease. A danger for us all is lack of education and understanding. The medical community is becoming more informed, new pharmaceuticals, and surgeries exist. The general public is more awake to many illnesses and our own fears about our mortal bodies. Disease or fear of disease is one of many challenges that inform our lives.

I am a whole person. I had ulcerative colitis. I have an ileoanal anastomosis. I have a sense of humor, loving friends and family, a new grand daughter, empathy, a body that gives me joy and trouble, food on the table, heat in the winter, and a mind that I hope stays open, strong and frail and doddering though I may sometimes be.

Great words, Sally. Thank you for sharing your story.
And I hope the rest of you are as inspired as I am.