Margaret’s Belly – Guest Post for #IBDawarenessweek

December 6, 2014
| No Comments
I was first diagnosed in September/October 2013. For years before, I was being treated for low B12, low Vitamin D, and especially for mystery migraines. Looking back I can tie almost every issue I’ve had into the constellation of IBD events. IBD kicks the shins of every part of your body. I’m still reeling over the laundry list of things that no longer make me “randomly” ill. For example, when I donated blood for the first time at 17, within minutes I lapsed into showcasing signs of being extremely anemic. The walk-in clinic doctor must’ve thought I was being dramatic because they offered no help. Later in high school I thought I had appendictis, but the walk-in doctor assumed it was some kind of ovarian issue or at least Chemistry Exam-itis. Regardless, I was written off and told I was fine. Air travel made me sick to the point where I accepted that getting on a plane meant I’d be throwing up when I reached my destination. Lots of people get sick flying, right? Turns out altitudes can cause flares.




Because I was flipping back and forth between my GP at home, walk-in clinic doctors at home, walk-in clinic doctors at my university, and emergency room doctors, nobody had a very fair chance of connecting the dots until I got sick. Really, really sick. I was sent home from work one day for looking so ill and was in the hospital a week later after hitting a fever of 104 F. My C-Reactive Protein was over 240, I was dehydrated and I had to learn how to use bedpans very quickly because I had so many IVs in my arms that I physically couldn’t leave my bed.

Due to the severity of my illness, the initial diagnoses was Crohn’s disease (Only Crohn’s could possibly cause that kind of suffering, right? Colitis is supposed to be the “good” bowel disease, isn’t it?). They couldn’t scope me properly because I was so damaged on the inside. After putting me under for the scope I woke up with a doctor installing a central line into my neck. I spent three weeks in the hospital and by the end of it I had so many collapsed veins that blood collection was a painful twenty minute process and one of my TNP bags soaked me because my last useful vein gave up mid-infusion.
After Remicade failed, I spoke with the head GI doc. He said I was five years too early for the drugs that could actually help me. I just wanted to go home, and a colectomy was the fastest way to get me out of there. So they took out my 11.5 pound colon. My surgeon compared the tissue to the mushy bruised banana peel on my hospital tray table two days later. The pathologist declared that my “inky black” organ showed the definitive pattern of colitis, NOT Crohn’s.

I cried after my surgery because I didn’t realize I was being choked out with pain for so long that I thought it was normal. It was like someone had turned the lights on after years of being in the dark.

Were you a dancer before your ostomy?
Yes, I started dancing when I was 18 and away at university using early Youtube and beloved sites like Shira.net. I heard the music and wanted to do the thing that went with the music. The first dancer I ever saw online was Aziza. This (https://www.youtube.com/watch?v=YWz5SwheE-8) was my first real exposure and I’ve been swept away ever since. I’m attending one of her workshops in a few months and I’m losing my mind already.
Actually, when I was admitted to the hospital and covered in IVs I was very worried that I wouldn’t make a gig I had booked for the next week! My teacher Laura Selenzi was in Toronto and couldn’t make her usual Saturday gig at a local Turkish restaurant so I was stepping in. How could I cover all these bruises when I’m a foot away from the diners? I really believed that I’d be out of there that quickly. I was trying to edit my set-list on my laptop but again, I had so many IVs I could barely type.
When the concept of an ostomy was floated toward me, the place in my heart I had tucked away for my lifelong love of bellydance fell out. 
What made you decide to pursue belly dancing despite your ostomy?

My surgeon’s report to my GP summed up my desire to recover: “Patient is a bellydancer.”
I quit dancing for all of thirty minutes. After consenting to my colectomy I asked to be left alone and wrote two notes to myself on my laptop, one accepting my fate and quitting bellydance, and one accepting my fate and continuing to bellydance. One was sad, one was positive.
I had studied philosophy at university and the Socratic format of reductio ad absurdum is lodged firmly in my brain. You start by taking a declaration and then you tease it out to see if its full implementation is ridiculous. If the premise “I will quit bellydance” requires ridiculously stupid changes in the long run, then I oughtn’t quit.
If I quit bellydancing, I’d still have my dance friends. They were so supportive throughout my illness, and they’re not just my dance friends but my actual friends. And I can’t give up the social aspect. Not every bellydance get together means we’re dancing. Why would I give up friends? Or even classes? On reflection, bellydance classes do not require a colon. They don’t require a particular size or age, either. Lots of dancers have had babies and even C-sections. Heck, some bellydancers are male. The further I took it, the more I realized that a colon removal isn’t a lobotomy or even that devastating of a physical injury. Social media and the internet confirmed it for me. Google showed me lots of women in their 20s doing things that women in their 20s like to do.
The night before my surgery I listened over and over to one of my favourite songs, Cairo Balady. I had never found a way to dance to it but it sounds exactly why I started dancing in the first place. (https://www.youtube.com/watch?v=sDgAc4JaHlo) I didn’t start dancing on the condition of “no ostomy” and couldn’t find a reason to stop now that I had one. All I had to do was cover it if I was dancing at a gig.
At events mostly populated by other dancers, especially at Serpentine Studios in Halifax (serpentinestudios.com), I just plain glued sequins on my ostomy and wore the same kinds of costumes as everyone else. I started dancing because I love the music. I still love the music, so I still dance.
As a belly dancer, how have people reacted to your ostomy?
Dancers have been very positive about my ostomy, especially with my adventures in decorating it! We love dancing and think bodies are interesting so conversations can be graphic (and educational). Some of my belly movements look outright bizarre on inspection because I’m missing the framework of a colon. Since my costumes have to accommodate to cover an ostomy, I’ve found a personal style and costuming niche. Dancers tend to gravitate toward the same cut and style of costuming based on the type of dance, personal preference and what flatters their style.
I danced at a “real” gig a few weeks ago. The client was told that I’d be covering part of my tummy if that’s okay. And it was. Having a “normal” tummy is easy, but providing memorable entertainment is hard. A client pays for quality entertainment, first and foremost.
The main issue since the start was ostomy and diet management and getting an appliance I feel comfortable enough to tuck into my outfit and not have to touch or rearrange during a performance. When I found equilibrium using Coloplast’s products, I knew I could start actually dancing as an Actual Dancer again and called them to tell them I love them. They took a chance and offered to send me to St John’s, Newfoundland for an Ostomy Canada convention and in July 2014, seven months post-op I danced a 25 minute set at their Thursday night dinner.
The crowd was great, and with the stage lights and my bright pink costume, people sitting further back couldn’t even SEE that I was wearing an ostomy.
***
A HUGE thank you to Margaret for this interview. She’s just one example of the many people who suffer from Inflammatory Bowel Disease that have made a conscious effort to make sure that her disease doesn’t rule her life. Such an inspiration. Thank you Margaret! Be sure to follow Margaret on Twitter (@MargaretsBelly) and visit her website (http://www.margaretsbelly.com). Keep smiling, dancing and raising awareness, girl! 🙂
Categories: #IBDawarenessweek, #IBDNinja, colitis, Crohns, IBD, inflammatory bowel disease