Hours ago, it wouldn’t have been possible for me to use that term to address people; it’s a new world. I’m a 22 years old student and English is my second language, so sorry in advance for mistakes. I’ve been diagnosed with Ulcerative Colitis just last December, and ever since I’ve been trying to adjust my already messy life to this new…development. I live in Canada but am currently on an exchange program in Australia (it’s a bit of a risk, the doctors were quite reluctant to send me away with everything that went on). But I’m determined not to let my dreams go down the drain.
I don’t really have a story worth writing, but thinking about all the other people on the internet reading stories, just like me, secretly hoping to find someone just like them who is making it–or at least who can openly tell their story–I decided I should add mine.
It all began last Summer, when I decided, ironically, to take more care of my health. I was jogging about thrice a week, eating loads of veggies and salads throughout the week, and resisted the temptations of cookies and brioches–my favourite desserts. And then the pain began. Sudden cramps for just half a minute, everyday. As a woman, cramps are a domain I’ve learned extensively about through puberty, so I knew these types of cramps were not normal.
But I was getting so much healthier a bit fast, so I thought I was putting too much pressure on my body (which was kind of true). And then after three weeks of cramps in August, the diarrhea began. I wasn’t alarmed at first; I had heard of many people who had suddenly changed their diet and were jogging a lot had this condition. After 2 weeks, it stopped. The pain was always there, and growing, but there was nothing else–until November. That’s when the cramps became unbearable. I couldn’t walk or even stand. Breathing hurt, so eating was not even crossing my mind. I always hated taking medication and seeing doctors: I had a very strong faith in my body’s capacity to heal itself. When I saw blood in my stool, however, I had to admit defeat. I wasn’t getting better–I wasn’t getting way, way worse. It was time to alert the family (they tend to overdramatize and panic easily, so I kept all this for myself, just in case it was nothing) and seek a doctor. The first doctor I saw t old me I probably was lactose intolerant and was desperately trying to send me home as quickly as possible, no matter how hard I explained that I haven’t drink milk in months (it made the cramps worse, I had noticed). So I had a talk with my family and we all gave my body an ultimatum: if there was still blood in 4 days, we would go to ER.
You all know about this part of my story. I went to the ER. They made me drink a horrible orange concoction that ‘washed’ (emptied) my entire digestive system, so that I’d be ready for a colonoscopy on the next day. I will avoid the details, but this has been the hardest, most painful and most tiring night of my entire existence. If I thought I had seen blood before, this was the red sea in its literal meaning. You have no idea how often I thanked whoever’s up there for sending my mother away on this first night in the hospital. I’m sure she didn’t get much sleep, but no parent should ever witness their child in the state I was. It’s just mean.
A week later I was diagnosed, and high doses of cortisone were injected directly in my veins–I loved it, it freaked my mom. The medication worked right away and the pain lessened. So I rested a lot for the next month, tried desperately to find a cure diet and to understand my condition–went on to check the research made in Belgium, the US, Canada and more…only to feel quite lost amidst it all. People didn’t know much more than I did, or that my doctors told me. And worse, the more I read, the more I realized that in most cases, the UC’ers had the same symptoms, which had created the diagnosis, but the cause of these symptoms differed. Basically, I felt like someone, faced with thousands of sick people, decided to create a category (the somewhat diarrehea-pain-bleeders), and got stuck at the labeling level. Those thousands of sick people are leading such different lives–what’s the link? That was my obsession for the following weeks. And then I began to feel much better. U ltimately the disease wasn’t so bad. I booked my plane tickets for my semester in Australia, and started working on the projects I had missed in school. I had to carefully monitor the amount and type of fibers I ate. It wasn’t the end of the world, right?
Well, not exactly. A week before my flight, and exactly a week after my last dose of cortisone, the pain started again. I knew what was in store for me. I had lost weight. I slept more. I was weakening. And I was about to leave the country, where my doctor should be monitoring me. I had a long conversation with him, and he made it clear that in my state and probably for the first 6 months after my diagnosis, no one knew how severe the disease could become. Basically I was going to the land Down Under (where, let’s face it, most stuff can kill you) and I was going there with an immune system that wanted to bring me down. Could I face it all?
So far so good, I would say. Sure, my state is not perfect, and I’m still taking cortisone, but I’m traveling and experiencing new things–like having a parrot on my shoulder and feeding koalas–and I think that’s what matters. It was after a bad night (I ordered some fast food–I knew I shouldn’t have! But eh, I’m a student…) that I stumbled on this website, and was blown away. So many people, who knew exactly what I meant by ‘abdominal pain’ and who shared their stories openly! I was amazed and inspired. I needed to be able to do it too! To reach out instead of trying to deny what I had. This has been the hardest part for me until now. Revealing this ‘silent disease’. And accepting it as part of my life. I’m still trying to get over the ‘geez all those people don’t realize the chance they have to be able to eat chocolate every day’ phase, and must admit that this year’s Easter Break has been particularly difficult because of that.
Enough with my rant. I have some questions too! Do you guys feel like you are obsessed with sweets while taking cortisone? I just have rages and weird cravings–like a pregnant woman. Like I can crave honey sundaes (who has honey sundaes? Do honey sundaes even exist?).
And what do you do in a ‘crisis’. Do you follow the B.R.A.T diet like a normal diarrhea? Do you keep on following the SCD for those who abide to it? If so, do you vary it slightly to avoid some fibers? Do you eat clear soups? What’s your trick?
Also, do you tend to sleep more since you were diagnosed? And do you wake up soaked in sweat? I’m sorry to ask so many questions but, who else can I ask?
Thanks for reading this! -sends love and fictional chocolate to you all-