Patient is a Bellydancer, Part 1

Irritable Bowel vs. the Dancer

by Margaret Anne
posted 3-25-14

A few days after being admitted to the hospital, the delusion that I would be back on my feet in no time had worn away. I would have to cancel that restaurant gig next Saturday.  …and drop out of the stage show in January.

This is the story about my relationship with bellydance after illness took away my belly.

In late September of 2013, a small bout of strep blew up, and I landed in the emergency room  of the hospital after days of being unable to keep food or water down. I took more bathroom trips than I would admit in polite company, causing an initial precautionary assessment of C. Difficile. I had just moved into a new apartment but packed a bag to stay with my parents for a few days after I was sent home from work for looking so ill. After a few days, I was deliriously ill with a fever of 104 degrees so my mother took me to the emergency room. My bloodwork was a mess! Where my hemoglobin should have been at least 12.0g/dL, I hovered at 8.5g/dL, which could indicate blood loss or a systematic inability to absorb iron. I had never heard of C-Reactive Protein until the results showed a level of near 240 instead of the ideal level of zero. C-R.P. indicates the level of inflammation in the body.

Weeks later my doctor told me she had never seen it that high in anyone before. Something was very wrong.

I knew something was wrong, but my concerns were focused much narrower, much simpler than survival. I was missing work. I didn’t have a cell phone charger. I rarely gigged and wanted to finalize my playlist for next week.

Most importantly, I was missing troupe practices. Four months until the first show of its kind in our region, where the American Tribal Style, fusion and Egyptian companies would dance almost entirely to a live band. The costumes were ordered and the venue was booked, and I was concerned that I would fall behind.

The next few days are a blur in my memory, but I’m the talkative type; so play-by-play Facebook statuses logged my experience.

September 27, 2013: “I’m being treated for some kind of ridiculous infection they haven’t figured out, so I can’t even beg for visits unless you want to suit up in some barrier smocks and help me throw up.”

My mother, an R.N., was the notekeeper in all of this. Two days into my stay, I was hooked up to a forest of I.V.s and monitoring equipment. After a colonoscopy (“Can I be sedated for that?”) I was given a working diagnosis of Crohn’s disease. My colon was dangerously and visibly swollen and ulcerated, and while the doctors would attempt to placate my angry gastrointestinal tract through the medicinal route of steroid therapy before sending me off to the operating room, I was seen by the surgery team almost daily. (I guess I was a popular patient to visit because Crohn’s disease is under-researched and has an abnormally high prevalence in my home province of Nova Scotia.)

Being that I was staying at a university-affiliated teaching hospital, my poor tummy was being treated like the Pillsbury Dough Boy starting at 6:30am every day!

September 29th, 2013: “Hooked up to lots of machines and IVs but feeling better (none of my machines go ‘ping’, sadly). Was sedated a lot yesterday, so I’m trying to catch up on what’s going on. Dinner and a movie: Enter the Dragon and pre-measured glasses of watered-down apple juice.“

No, I wasn’t going to be able to make that restaurant gig, and it would be a while before I could get any use out of the new costumes coming in the mail from Egypt. One was shiny-pink and would be debuted in all of its leggy glory by another dancer for the show, and another was a leopard-print that I had ordered for myself.

October 2, 2013: “Still too exhausted for visitors or correspondence, but I really do appreciate the notes. Also I have sausage legs from the prednisone they’re giving me, so I look too hilarious to be in public. XO”

I was stabilized, given a painfully expensive medication and moved to a less intense floor. A family friend in pharmacy let my mother know that the drug they infused me with, Remicade, cost $4,000 a pop. Being Canadian, in-hospital drug costs are covered and patients are not privy to expense lists.

October 6, 2013: “Oct 6, 2013 “Prednisone pants, for all of my ten pound weight fluctuation needs. Here for a few days more, gettin’ roided up, eating soft foods and making BFFs with the x-ray techs in between naps.”

It would take a few days to know whether the Remicade had worked. I could barely eat and had lost a lot of blood, so I was hooked up to nutrition, a variety of steroids and antibiotics as well as a few blood transfusions.

October 7, 2013: “P.S. everyone who donates blood is awesome. I grow strong from the pints you trade for cookies and juice.”

Before I was ill, I was volunteering furiously for an upcoming provincial election. When I asked about how to vote in hospital, I was told that I would not be able to vote because I had missed the early ballot last week, even though I was half-dead and unconscious when they came around with the ballot box. I begged, and I begged, and was eventually given a two-hour pass. My IVs were removed. My semi-permanent IVs were taped-up and tucked under my sweater so I wouldn’t look like the escaped patient that I was. My parents drove my sweaty self back home so I could see my dog and collect some books before they took me to the polling station. I hobbled in, marked my X and hobbled out. The fresh autumn air was lovely, but I felt miserable and was taken back right after.

October 8, 2013: “Watching the election in a patient lounge at the hospital with two crackheads muttering about their drug addictions in the corner.”

But gumption isn’t a cure. I kept deteriorating. I was having such a hard time moving around without help that I started to look forward to the daily field trips to the x-ray department.

I had been hospitalized for two weeks, and after an honest talk with the head of gastroenterology, I agreed that the best option was to have my colon removed. Funny how I can spend all afternoon trying to decide what to have for supper but can agree to life-changing surgery in thirty minutes.

I had the option to refuse, but surgery was rapidly turning into the only option. I signed the consent papers and asked to be left alone.

October 10, 2013: “The drugs didn’t work, and I’m scheduled to have my colon removed on Tuesday. I can handle so much, but I have to quit dancing, and it’s so overwhelming I can’t breathe.”

My constant companion had been my laptop where I kept sane by watching “Star Trek” and “Doctor Who,” but after signing off on the surgery, I opened a word document and wrote two scenarios for myself.

My surgery was soon moved up to October 11, 2014. I knew now that by the next afternoon I would be out of surgery and would wake up with a huge scar on my stomach…  …and an ileostomy.

This is what I wrote to myself that night:

“I have to quit dancing. I’ll sell my costumes and keep a veil, hip scarf and cymbals for when I want to dance alone for myself. Even if I keep dancing at home, I have to quit my troupe. Even if I keep dancing, if I wore a Saidi dress at a hafla they’d still stare at my midsection looking for the ruffle of an ostomy. Every compliment  ‘…even with the bag!’ ‘…especially after your surgery!’ will end differently and useful criticism will dry up out of pity.”

Then I wrote:

“I can’t quit dancing! I’ll never quit dancing! This is an adjustment. A very unusual, ironic adjustment for a belly dancer, but until they tie me down and chop out my soul it’s impossible to stop dancing. Is this supposed to stop me? I could’ve died and I’d like to celebrate daily by dancing like a maniac about how well I’m going to recover. I don’t know when I’ll have the courage to dance in public next, but that’s my own issue to work through. My dance friends have overwhelmed me with support and want to see me back in the saddle. I’m not the first dancer to deal with this, and I’ll never be the only dancer who still chooses to dance through the rough times. Yeah, there’s going to be some changes. I can’t continue with the troupe right now and I will definitely lose my edge by dropping out of lessons for a while. But I’ll still tag along to all the social scenes and there’s always new music to explore. I should still probably sell a few costumes because I won’t be needing them for a while. Not the new leopard-print from Egypt, though. That’s mine.”

The next day, October 11, I had my 11.5lb colon removed with no complications. They told me that a full recovery would take at least five months. A week after surgery, I was so happy to be finally leaving the hospital! Having spent three weeks in a Johnny Shirt, I saw myself in a mirror for the first time wearing my old clothes, now loose. My best friend came to visit and she helped keep me standing steady while my father went for the car. It was chilly. Autumn was almost over and the leaves were on the ground. I’d have to deal with a winter of recovery, and by next spring, I’d be back on my feet. But would I be dancing again?

Stay Tuned for Part 2: How Insanity Became “The New Norma.”

Resources:

• Author’s bio page