June Updates: MRI’s, Gutsy Walks, and Ostomy Eruptions
Gutsy Walk Team “Semi Colons” from 2012
So here I am, finally getting to write a post after quite the hectic couple of weeks. I have felt a myriad of emotions from heart-aching sadness to sheer horror, to mad happiness and uncontrollable giggling. And I couldn’t be more grateful. After being glued to a bed for months and unable to really live, I am happy to experience life, even if life throws lemons at my face instead of on my lap.
This being said, I am also experiencing anxiety. I have recently been able to ween off pain medication, and to my dismay the abdominal cramping I was free of the last while has returned, although only occasional, making me worry about the return of my Crohn’s symptoms. There is still a large section of my bowel that has active disease, and I’m hoping the disease wont rear its ugly head again this summer. I see my IBD specialist next Thursday, and we will be discussing Crohn’s treatment, to which I will be requesting Helminthic Therapy. I’m hoping that starting treatment will prevent any more future flares. I’ll be keeping you posted!
I am still recovering from a very difficult heartbreak, and I may or may not have ordered myself a gluten free pizza topped with crispy bacon and pineapple last night and ate it in bed binging on Netflix series telling myself that I’m not cheating on my diet because the pizza is gluten free. I am quite good at lying to myself- but although it may not have been good for my gut, it was sure good for my soul. What happened next sure wasn’t. I passed out in bed and awoke at 2:30 in the morning to find myself in deep sh*t. Literally. I was covered in it. My ostomy had completely exploded in the night and my entire abdomen, my pajamas, and my poor pale blue sheets, had turned a light shade of brown. That will teach me never to eat after 6pm again. I had to get up carefully, make my way to the bathroom, peel off the defective bag, and take a quick shower at 2:30am. I put on a fresh new bag and walked groggily back to my bed only to realize it was still covered in poop. It was everywhere. Instead of dealing with it right there and then, I grabbed a clean blanket and passed out on the couch and awoke at 8:15am. I had a volunteer shift at the hospice at 9am. Crap. By the time I had gotten myself presentable to the outdoor world, I did not have time to clean up my bedroom mess. I’m currently now typing this post at my desk at the hospice knowing what awaits me at home, imagining the oozing brown mess seeping through my sheets into the mattress. Ohhhh Crohn’s disease. Looking on the bright side, if I was still with my boyfriend, he would have been covered in my poop as well, quite possibly traumatizing us for life. Today, I am happy to be a single woman.
This was not the only Crohn’s related conundrum that happened recently. The picture at the top of the page is my team from the Ottawa-Gatineau Gutsy Walk a few years ago. After not attending last year, I decided last minute I’d show up and walk amongst my fellow Crohnies this year at their new location. After getting a touch lost, I saw some tents and some walkers so I headed over and joined in. I realized a few minutes later I was at the wrong walk. I was at the brain tumour walk. Swearing under my breath, I had to sprint 2k to the adjacent park to the right walk. I arrived and joined the Gutsy walkers out of breath huffing and puffing. By the end of it, I was exhausted but had accidentally managed to support two causes in a two hour period. A typical Jess scenario. In a way though, it worked out well. My stepmothers late husband died due to a malignant brain tumour and I had known him since I was a child. I took a moment to remember him that day, as well as supported the cause that changed my life so drastically.
The third event this week was an MRI. I didn’t worry too much about it- thinking I’d just lay on my back in a white tube for 20 min and then get right outta there. I should of known something was fishy when they called me to tell me that I had to come an hour early instead of 30 minutes. I had to force down two full glasses of a chemical-flavoured fluid and then lay on my stomach for half an hour in discomfort, worrying that my ostomy bag would explode as it filled with the foul-tasting drink I choked down minutes prior. To make matters worse, they injected me with something called Buscopan to prevent my bowels from moving too much as they did the imaging. An unfortunate side effect of this drug is blurry vision. Like, I couldn’t read something if it was inches from my face. They also injected me with a contrast that made me convinced I’d toss my cookies at any given moment. So, I was laying there, for a good thirty minutes, my ostomy bag on the verge of exploding, my vision completely skewed, concentrating with all my might to not vomit in the pearly white MRI machine, following it’s instructions to breathe and hold my breath every minute or so. All the while my claustrophobia was kicking in and a headache was coming on from the machines continuous beeps and boops that probably resonated throughout the entire floor. Uncomfortable doesn’t even begin to describe that experience. I hope I don’t have to do that again for a really, really long time.
That’s about it in terms of updates. I have worked my way up to 105 pounds now and hoping I’ll get to 115 in the next month or so. I’ll have more to tell on Thursday after my appointment with my IBD specialist, where I’ll get the results of my MRI and discuss an action plan to keep any flares at bay.
