When Life Gives You Lemons: The Crohn's Story
Photo by Brandon Hill
I reached out to my Facebook friends about a dilemma I was facing: do I start a new blog to talk strictly about health stuff, or do I keep posting updates periodically on Sweet & Sauer? Majority rule - keep the posts here. I don't ever want to oversaturate Sweet & Sauer with health posts, as I know some people only follow for the fashion related pieces. However, and thanks to my friends for pointing this out, it gives a glimpse into my life and really helps me connect to my readers.
So here we go, the next installment of 'When Life Gives You Lemons'. I'll preface by saying this is on the lengthy side and even has a rant portion. Consider yourself warned.
I've mentioned that I have Crohn's disease in previous posts, however I haven't talked about it much because it feels like a taboo subject. I mean let's be honest, it deals with your digestive system and quite frankly, it's gross. It should be talked about though, because so many people are affected by Crohn's or some other type of digestive problem, and honestly, we're all human, right?
Let me give you a little background on my Crohn's to bring you up to speed. I was diagnosed at 18 and it turned my world upside down. I was a freshman in college and just made my first professional dance team. When I was diagnosed I was told to leave college, quit the dance team, and move home so I could get better. I hope it's no surprise that I gave that idea the middle finger and kept plugging along. Long story short, I was put on a magical IV drug infusion that saved my life and put me into remission for 9 years. Up until I was diagnosed with cancer, I was saying, "What Crohn's disease?" I ate and drank whatever I wanted and had zero problems.
The second I was slapped with the "You have cancer" label, I was off that magical drug that made life so easy and in came the problems. All the symptoms showed up (think debilitating stomach aches and the worst digestion problems you can imagine, then times by 100). And they won't go away. And I am SO mad about it. I mentioned this in my last post, but treating Cancer and treating Crohn's are polar opposite approaches. With Crohn's, you want to suppress the immune system. With Cancer, you want to rev it up. I have to find that magical middle ground where I'm treating both without unleashing either dragon. Good luck, doc's!
It's been a nightmare. They took me off that magical drug (ok fine, it's called Remicade) because it suppresses your immune system and would have potentially made the cancer worse, and with that came all the awful symptoms of Crohn's disease. I've been battling them since October. We've tried all possible drug options and nothing has worked to put my Crohn's into remission. So what does that mean? The one thing I NEVER wanted to happen since the day I was diagnosed is now happening to me. I have to have surgery, aka the end of the world as I possibly know it. Cancer doesn't scare me, but an ileostomy surgery seems like the end for me. I know, insert eye roll, what-the-heck-how-can-you-say-that expression, here. I'll get back to you when I can actually explain the reasoning behind my feelings. **Side note: there are different type of 'ostomy' surgeries (colostomy, ileostomy, etc.), they differ in placement and disease location.
My surgery is this week and I can't tell you how many tears I've shed. It's the last thing I ever wanted to happen and it will be a big lifestyle adjustment that I'm not exactly looking forward to. Before I get the, "Oh, but I know someone who has an ostomy and they're doing great, its really not that bad!" comments, let me remind you that everyone's Crohn's experience is different, and everyone processes/handles things differently (not to mention I'm still in the mad/sad/angry/what in the actual F stage of the grieving process). This is something I knew could happen (not like the cancer where I was just invincible and it just happened) and I did everything in my power to avoid, yet here I am, days away from life changing surgery with no other possible alternatives.
Enter rant portion of this post. I can't tell you how frustrating this flare has been. All I've wanted is to get out and do things - go out and party, work, workout, eat a salad, you know, normal things, but I can't because of the symptoms I deal with on a daily basis. Do you know how hard it is to sit at home by yourself every weekend while everyone you know is out having fun and you're watching Sex And The City for the 21st time? It's frustrating to have your mind there but your body won't let you do the things you want. Sometimes I don't even have enough energy to work on the computer. I have to be SO careful with what I eat. Every single food decision determines my next 24 hours. My energy level is so low. I have to be strategic about what I allow myself to do in a day. I certainly can't pack 25 activities into a 12+ hour day like I used to. I'm only allotted so much energy and I have to be careful on how I use it. If you're in a reading mood, I love this Spoon Theory and totally relate to the concept. Other people can just do things, but when you're sick you have to plan and be strategic. You have to think, you can't just 'do' anymore. Bottom line, it's so frustrating. If you know me well then you can attest to this, I HATE being limited.
Now for the positives. I know my quality of life will be better after surgery. I will have more energy, my food choices won't be as limited (hello salad and pizza and Mexican food!), I'll feel better in general, and be able to do all the things I've been missing out on for so long. My doctors, friends of friends, support groups and so on all say that people feel worlds better after this surgery, so there's that. I look forward to the days after recovery where I will feel like myself again. FINALLY. After almost a year of feeling like absolute blah, I can't wait to feel energetic and happy all the time, not just for a few hours where I'm feeling decent at best like I'm now used to. This is going to be an adjustment though. I'll have this bag attached to my stomach (should I name it for fun?) and that's going to be hard to become accustomed to, both emotionally and physically. I know things could be a lot worse though, and I'm thankful that's not the case.
I'm forcing myself to share this story and talk about my ileostomy for a few reasons. 1. I can't let this define me or bring me down. Adjusting is going to be freaking hard and I'm going to have some really tough days, but I can't let the bag win. By sharing this with all of you, I'm beating the bag and staying in control of how it makes me feel (slash, no one will read my blog anymore if I just complain about this dumb thing, right?) 2. I want to share my experience with others for both their sake and mine. I find it helpful to hear how people deal with things, or tricks they've figured out when it comes to anything (aka the world of blogging). By sharing my experience, I'm hoping to help others through their ostomy experience, and also cope with mine. Let's figure out how the heck to dress with an ostomy bag together without everyone seeing what we have going on, right?
I'm almost done I promise, and if you're still reading even, I thank you. I guess my point is this, it's not all rainbows and butterflies and "gee gosh golly this is tough but I can do it" over here. I mean yes I'm keeping a positive attitude and soaking up every single minute of good energy my body gives me. But it's hard. And this disease sucks. And I'm SO frustrated. I wanted to share that realness because that's reality sometimes. And I also want to talk about this disease a little more to break those taboo boundaries, and challenge myself to be honest about it and what I'm really dealing with. It is scary though. Putting this out there and opening myself up like this can be terrifying. I don't want people to think of me differently or judge. This stuff definitely isn't pretty.
It's so easy to make assumptions about people based on what we see on social media, or in person even. Someone can look perfectly fine, yet have some serious stuff going on. Would you have ever guessed I'm battling both Crohn's and Cancer by looking at me? Just because you can't see it, doesn't mean it's not there. Health issues are so real, and I envy those of you who don't have to deal with them. Continue to take care of yourself and be kind to everyone because you never know what someone is going through.
I'm so incredibly grateful for all the love and support I continue to receive. Before writing this post, I went back and read all the comments from my initial cancer post and they gave me the boost of strength and courage I needed. I want this surgery like I want black to go out of style (now THAT would be the end of the world as I know it), but I know I will get through it because I have so many people believing in me. And let's be honest, now that I've put all this out there it would be REAL embarrassing, and quite frankly lame, to let the health crap win. Time to put my money where my mouth is, right?
Have questions? Send them my way! Nothing is off limits here. I will continue to share updates as things progress, and maybe one day I'll even have the guts to share pictures. I promise not every post will be a college semester's worth of reading, and I assure you I will keep on fighting :)
Much love.