CW: gut disease and ostomies
I have told you how I used to be a very sick human. Those of us with gut disease have a difficult time finding people who can understand what we’re going through, and be supportive without making awful body comments or trying to give us their magical homemade cures.
Having recently moved to a new city, dealt with a sick pet, and gone through three months of unemployment and depression (though by Woodhull I had finally been working for a few weeks), life had thrown a lot at me. As for my physical health, I had stopped taking my pills (a new prescription, costing me $500 with insurance for every refill) my ulcerative colitis was rearing its ugly head, and I needed a doctor. But I just didn’t have the resources for a doctor or medication until I was employed long enough to pay bills.
On top of all this, I had been getting sick for nearly a year. I would wake up in the morning feeling nauseous. Sometimes I would throw up. I tried working on a sleeping schedule, changing my diet, reducing my alcohol intake (not that I was much of a drinker to begin with), and not eating after 7pm. Nothing helped. Rather than being supportive, friends, family, and coworkers told me I must be pregnant (I had been tested multiple times). They told me to eat something (believe me, swallowing while feeling nauseous will only bring up problems).
By the time I got to Woodhull, I was looking forward to being with people who understood what it was like to be dealing with physical and mental difficulties, people who wouldn’t diagnose me with a baby, who would tell me it’s my own fault for being sick because of the way I ate or slept or spent my time. And the people at Woodhull WERE great, and supportive, and lovely, and some of the best humans I’ve ever met.
One of the seminars I was really looking forward to was Dr. Normallove or: How I Learned to Stop Worrying and Love the #ostomybomb. Having had ulcerative colitis since I was 9, as well as several other physical health problems, I had been through a lot and was terrified of eventually needing an ostomy. I was determined to find out all that I could about ostomies and, because it was the Woodhull Sexual Freedom Summit, sex and gut disease.
Jessica Mijnssen, the speaker for #ostomybomb, opened the seminar with a discussion of the days leading up to her ostomy at 15, including nausea and vomiting nearly every day. For her to start with something that I had been dealing with for months immediately hit a nerve. I began to tear up as she continued her talk, discussing gut disease, ostomies, sex, and body positivity.
But while the seminar was emotional, it was inspiring as well. Mijnssen talked about her #ostomybomb art project, where she placed ostomy bags on statues, hoping that someone just like her 15-year-old-self will pass by the beautiful statue with the ostomy bag, and know that they are beautiful too.
She told us about athletes, models, and others with ostomies, such as Blake Beckford, fitness model and body builder, or Pip Ramsey, tattoo artist, and Zoey Wright, a weight lifter, fitness instructor, and fitness model. We learned about Jasmine Stacey lingerie for ostomates, and Vanilla Blush lingerie, with internal pouches for ostomy bags.
Mijnssen taught us about the difference between Irritable Bowel Disease, which affects a targeted area (Crohns, Ulcerative Colitis), and Irritable Bowel Syndrome, which causes general inflammation. She discussed her own cycles of sickness and remission, and how
she is currently in a good place, and has energy to devote to exercise, and is hoping to have kids one day.
Throughout the seminar, I tweeted thoughts, emotions, and quotes, and stated that I would need a hug after the talk. Kait Scalisi, who was sitting in the back row, offered up her hugging services (for the record, Woodhull attendees are worldclass huggers), which I accepted. Kait, Mijnssen and I after the seminar about our various experiences, how we were sick of people blaming us for our own health problems, shaming our bodies, trying to fix us with home remedies. I had finally found the people I had been searching for nearly my whole life, the support that was lacking from my day-to-day interactions.
When I got home, I finally went to the doctor. I told her my symptoms, how I was scared. She told me to take Prilosec twice a day for a month and get back to her. As I write this, my symptoms have all but vanished, because apparently I was lucky enough to have nothing worse than bad heartburn. I’ve been given an affordable prescription, and my ulcerative colitis is creeping toward remission. I’m not so scared anymore, because I have access to information that I didn’t have before. Knowledge being power, I feel comforted that, if something does come up, and I do need surgery, I know what to expect and who to go to if I need to talk.
These days, I am mostly healthy. Whatever that means.