I'm Getting surgery
Welcome back to those of you who read my last post in January about my battle with ulcerative colitis and hello to anyone hearing about this for the first time. The past five months since that hospital stay have been a complete blur and have flown by faster than I could’ve ever imagined. Each day, I’ve woken up thinking about my symptoms, my diet, my medicine, or my new lifestyle, and wondered when all of the burden will become a thing of the past. In the simplest terms – the struggle is real.
By far and away, 2017 has been the hardest year of my life. I’ve felt hopeful that new medications I’ve tried would put me into remission. Inevitably, I’ve then felt disappointment as time passed and I didn’t see results. I’ve shed a lot of tears in sadness and frustration that despite doing everything I’m supposed to do, I haven’t gotten better. However, the real battle is trying to keep my mind off of the disease when almost everything triggers a reminder. Walking by a mirror and seeing how thin I’ve gotten or adjusting my belt a notch tighter to keep my clothes up reminds me that I’m sick. Though I am lucky to have an appetite back, catching a whiff of anything that isn’t rice, chicken, shrimp, eggs, banana, peanut butter, or bread reminds me that I can’t digest anything else. Lastly, hearing stories from friends about their drunk endeavors of the past weekend reminds me that I’ve been involuntarily sober since December. (Disclaimer – I did get drunk for a St. Patrick’s Day bar crawl and had one mixie at Storyville the weekend after). Otherwise, I strictly stick to ginger ales. I want to stress the fact that I would never want anyone to change their behavior around me for the sake of my feelings. Though it’s tough at times, it’s fine if people eat good food around me, have a drink, or ask me questions about UC, how I’m doing, or what I’ve been going through. I think it’s important to recognize how different my life has been this year – but not necessarily dwell on what I’ve missed out on. I’ve slowly watched my priorities shift from where they once were. Mainly, the biggest adaptations I’ve had to make are in the categories of friends, food, and fun. #1. Friends – Since I’ve been sick, the last thing I’ve wanted to do is bring anyone else down. Even though I have to deal this shit (pun intended because I have Inflammatory Bowel Disease), it doesn’t mean that I should redirect my frustrations. My friends have been some of the closest people to me during these hard times and I could never thank them enough for the endless support. However, I don’t see them nearly as often as I used to or as much as I wish I could. When I say “it’s not you, it’s me,” it’s actually true. Being fatigued, sober, and following such a restricted diet has made it harder for me to enjoy socializing. I refrain from meeting guys because I don’t want to burden anyone with my “baggage” or explain my situation. Once I start feeling better, I can’t wait to do more things with my friends and have a life again. #2. Food – I will never take food for granted ever again. It sucks to feel burdened at birthday parties, grad parties, happy hours, restaurants… you name it. I find myself staring like a hungry dog at cheese platters, burgers, calzones, mini weenies, chicken wings, fruits, veggies, dessert, etc. and knowing that I can’t touch any of it without upsetting my stomach. If you know me well, you know how much meat I used to eat on a daily basis. I’ve literally been given bacon for a Secret Santa gift. Most likely, if a food tastes great or has any flavor, I probably can’t digest it. I’m not in a “2 week diet” situation where I can just cheat, grab a cookie, and hit the gym afterwards. Physically being unable to eat anything I love has been one of, if not, the hardest pill to swallow during this struggle. I’ve saved free beverage coupons on the Dunkin’ app months ago thinking that I’d be able to drink iced coffee by now and only been disappointed once they expired. I miss being able to go anywhere and eat anything at any time without a second thought. My eyes automatically skim right past the salad, steak, burger, and dessert sections of any menu because I know those options are out of the question. I’m now “that girl” at restaurants asking for a sandwich without toppings. “Yes … I’ll just have the chicken on a roll.” Premeditating every meal, rotating through the same 5 dinners, and thinking about every morsel of food I put into my mouth has become exhausting. I promised myself that once I have a normal diet again, I’m making it a point to eat out at least twice a week. Food is important. #3. Fun – I’ve shied away from going out every weekend like I used to and it’s really taken a toll on me. The girl who was once a fun-loving, bar-hopping, table-dancing partier now stays in bed on weekends watching That 70’s Show reruns and wishing things were different. I found it almost impossible to say no to a night out whereas nowadays it’s become habitual to stay in. It’s challenging to be around food and alcohol that everyone is enjoying while I can’t, so I eliminate myself from the situation. I head home early or convince myself that I should get some rest when I’m really subconsciously trying to save myself from the frustration. When friends complain about hangovers, I’m on the opposite end of the spectrum forgetting what they feel like. I’ve gone out sober and ended up bored by 11 while everyone else was just getting started. I’ve also made the conscious decision to stay home and live vicariously through snapchats. Both situations have left me feeling sad, left out, and given me the realization that if I want my life back, things need to change. FOMO is real. I’m giving my current medication, a biologic known as Humira, (the one in the commercials with the scary list of possible side effects), up to 3 months to work before giving up on it. After about 2 months of bi-weekly injections, so far I haven’t seen strong enough results to eat and drink normally, sleep through the night without going to the bathroom four times, or consider myself in remission. Recently it’s hit me that I need to take back control. I’ve denied too many plans, too many nights out, too many foods, too many drinks, and too much happiness to deal with this anymore. I’ve realized that I don’t deserve to live my life at 50% when I should be living it at 100%. Therefore, after considering the opinions of multiple doctors, ultimately I’ve made a decision to undergo a major two-part surgery to remove my colon, rectum, and appendix (dun dun dun). Aside from my family, my roommates, my girls at work, and a few close friends, I haven’t told anyone about my decision to undergo surgery. With part one taking place on June 26th, I’m counting down the days, (not necessarily in excitement) and constantly thinking about how my life is going to change. Since ulcerative colitis only inflames the colon and rectum, subsequently the only actual “cure” is removing both organs. The appendix is attached and just along for the ride. The surgeon then makes the bottom of my small intestine into a J-shaped pouch inside of me. Kangaroos are now my new spirit animals. To be honest, this doesn’t feel real to me. It doesn’t feel real that I’ve fallen victim to a chronic autoimmune disease. It doesn’t feel real that six months have already passed since my symptoms returned. Lastly, it doesn’t feel real that I’m dedicating a chunk of my summer to recovering from two serious surgical procedures and going on short-term disability at work. Nothing will feel real until I’m back in that hospital being wheeled around about to be knocked out for four hours while I put all of my trust in my surgeon to build me a perfect J-pouch. Despite my fears and apprehension about possible complications, I think back to a pivotal conversation I had with this surgeon. He began describing the details of this “life-altering surgery”, but he ended in saying “you won’t have colitis anymore.” Tears welled up in my eyes when he told me I’d be able to incorporate normal foods (and alcohol) back into my diet once I begin outpatient recovery. I cannot wait to start gaining weight again and getting my body back. I’ll start bawling when I take a bite of my first burger literally out of sheer joy. There will be a strong vodka soda in my hands ASAP. I toss and turn at night thinking about foods I can’t wait to eat once I have my freedom. I know the hospital stays are not going to be peachy - but I’ll have a lot of time on my hands to think about getting back everything that this disease has taken from me. Despite everything, I know things could be worse and at the end of the day and I’m still both happy and lucky. I’m lucky that among the surgical options for IBD, there’s a surgery fit for me that can give me back a fulfilling life and relief from a chronic condition. I’m lucky to have an amazing family and the greatest friends (who I now ask to give me music, movie, and book recommendations to spice up my time in the hospital). Lastly, I’m so lucky and thankful for everyone who made donations on my behalf to the Take Steps Walk for Crohn’s & Colitis. ($650 for IBD research!) This year has taught me that I’m a lot stronger than I could’ve ever imagined when faced with adversity. I’ve realized that life is short and people go through tough times that do get better. I’m making the absolute most out of these last 3 weeks before surgery. Though I’ve been down for a while, I’m not down and out just yet. Comeback szn in the works. |