10 tips for getting past the dreaded “S” word

Today marks one year since a decade of disease was removed from my body. The dreaded “S” word being surgery. Since the day I was initially diagnosed I hoped and prayed I would never need to go under the knife. But, there’s only so much IV medication you can take and so much daily agony you can endure before that’s your only choice. When I was told I needed surgery—I started writing in a journal. Here’s my entry from the day I got the news:

July 20, 2015

The hospital room phone rings-like a siren-it makes me jump out of my skin. I hesitate to answer and receive the results of my MRI. The GI doctor tells me exactly what I was hoping not to hear. The results show a bunch of stricturing and scarring within my intestines. I am going to need an ileocolic resection and anastomosis. A what!? Basically, one foot of my intestine needs to be taken out and then re-attached to my colon (which ended up being 18 inches!). Sounds like fun, right? My first thought, will I need a bag? No. Well that’s a huge positive and something I’m immediately grateful for. I had been preparing for this news and knew for the last decade surgery was always a possibility and on the horizon—but, up until this point I had managed  to dodge the bullet. Not this time. I kept staring forward, nodding my head and telling him I appreciated the call. My mom couldn’t hear what I was being told but said I kept blinking very fast and my eyelashes were moving up and down quicker than she could comprehend. My mind was racing. Hooked up to machines and weak from my already four day hospital stay and bowel obstruction… I broke down. My mom and fiancé Bobby stood at my bedside-consoling me without needing to say a word. My cousin Bill, who has been my rock and inspiration the past 26 years decided to take a 12 hour train ride to see me for one day. Miraculously, Bill has undergone two heart transplants and a kidney transplant. So, when I need perspective, strength and courage he’s my go-to and my hero. Since we both have lived with chronic health issues and grew up four doors down the street from one another the bond and closeness we share is one that can’t be described by words. Bill happened to be visiting that very day, but had to leave for his train right after I received the call. The timing was crazy. He only had five minutes to give me a pep talk. He did not smile, he looked me straight in the eyes and told me I needed to give it six  hours to sink in and that this is all for the better. He said to think everything through. Absorb it and revisit it later tonight. As he was on the train—he sent me this text:
“You’re going to be fine in the long run. Don’t focus on the difficulties of the coming month, rather think of the lasting positives you’ll experience in the long term because of the short term struggles.”

Boom. What better advice could I have asked for!? To this day I read that saved text message when I need strength. 

For anyone who has had a major surgery—it’s scary and daunting. Especially if you’ve never had one and don’t know how it’s going to feel like and what the recovery will entail. Never having surgery before throws a whole different level of anxiety into the mix.

Here are 10 tips to get through it:

  1. Find your happy zen—think of this as a fresh start
    • The days leading up are huge (obviously if it’s an emergency surgery you don’t have time to think—(even better in my opinion!)—But, if you have the time—mentally and physically build up your spirits and strength so that the recovery is not as much of a challenge. It’s a mindset and a state of calmness and peace that go out the window the minute they are prepping you for surgery and saying goodbye to loved ones. But for now, it’s about finding that happy zen, the peace within. Several doctors and surgeons told me the surgery would offer a “fresh start” and that I would feel like a “rockstar.” One year later—and I must agree I’ve had more “feel good” days in the last 12 months than I have in the last 10 years.
  2. Make check list and purchase some pjs and comfy clothes without waist bands
    • This is much easier for my fellow female Crohnies… but, hospital scrubs are great, too! I “spoiled” myself and got a bunch of new pajama dresses. Highly recommend finding clothes that are comfortable and make you feel pampered when you’re at your worst. Take care of errands and shopping ahead of time so you don’t have to worry about anything as you recover.
  3. Enjoy nature
    • It’s no surprise nature is truly said to be the best medicine. Do your best to STOP thinking, STOP wondering, STOP analyzing or planning what’s going on for the rest of the day, week, or month. Just breathe in that fresh air. Smile. Look at the clouds, stare at the flowers and how they manage to brighten the day, look at the trees and how they provide shelter and shade. It’s all a comfort that can’t be replicated. It’s easy to lay on the couch and think “woe is me” and not feel strong enough to do anything. I know there are days like that—and that’s “ok” too—and necessary. But, when you get the itch to go outside—do it.
  4. Stay away from Google
    • It’s human nature to want to learn and educate yourself when you’re told you need to undergo surgery, while it’s helpful to ask questions to medical professionals… sometimes Googling for details and seeing pictures of the procedure and incisions can make the days leading up all the more scary. I know I read plenty of commentary from people who made the whole process sound terrifying. Talk to people you know who have gone through surgery, ideally IBDer’s. One of my former interns and a friend from college who had both underwent resection procedures called me the week leading up and THEIR advice was incredibly helpful and spot on.
  5. Talk to your doctor about the incision beforehand
    • The night before my surgery, my surgeon visited me and asked me how I would like my incision to look…from talking to fellow Crohnies…this doesn’t seem all that common. But, ask for it! I asked for the incision to be made as low as possible and horizontal…he listened. Now, I can wear a bikini and the only incisions that are visible are from the laproscopic part of the procedure. The first few months I couldn’t look at myself in the mirror below my belly button without getting upset, but a year later the scars have become part of me and my story. I consider them battle wounds.
  6. Get inspired
    • When trying to stand and walk for the first time post-surgery think of all the people out there who are paralyzed and would give anything for the chance to feel the ground beneath their feet. When getting poked and prodded think of all the little kids battling illnesses and how they face adversity and pain and don’t shudder. No matter what you are battling—use the strength of others to lift yourself up-in doing so, the cycle of inspiration and positivity continues. You are likely someone else’s source of strength without even knowing it.
  7. Lean on others, don’t worry about being independent
    • You’re going to need family members or friends to help you through the recovery process, don’t be too proud to ask for help or feel like you’re a burden. They are by your side because they care and love you—and if the roles were reversed you know you’d do the same. It’s easy to get frustrated during the recovery process and lash out because of the unbearable pain—try your best not to. Your caretakers are your lifeline and help you heal in so many ways. At the same time, make sure you slowly start to walk around the house and start doing things for yourself as you’re able, the more you can move the quicker you will heal and have a sense of normalcy. Challenge yourself to walking for 5 minutes, then 10…keep building up time. The key is not doing too much, too fast. Allow yourself to ease into life again.
  8. Celebrate the small victories
    • As you challenge yourself you’ll slowly start to do everyday tasks that seem like a REALLY big deal. I remember the first time I tied my shoes post-surgery and didn’t need my mom to dry my hair. It was a BIG deal, celebrate those accomplishments. Sometimes even just putting make up on while you convalesce on the couch can make you feel more like yourself.
  9. Guard your belly
    • The most pain felt when recovering is laughing, sneezing, coughing and driving. I remember my mom and I watching TV or her and Bobby talking and making me laugh and it would hurt so badly that I would cry from laughing. Keep a pillow or body belt close by so that you can cradle your stomach and ease some of the burden. One of my old “TV tricks” is to think of the smell of fish if you have to sneeze…if you do so, you won’t sneeze.
  10. Share your story on social media.
    • This advice is coming from someone who dealt with the disease in secrecy for a little over nine years. I kept my struggles to myself because I didn’t want to be labeled as a “sickly” news anchor or garner sympathy from the public. The moment I shared my personal battle on social media in November 2014, it felt like a weight was lifted. The support, love, and prayers from friends, family members and complete strangers has meant the world to me. As I was going through the hospital visits and surgery in 2015 and even now, having that foundation of help behind me makes me feel like I can overcome anything. At the same time—there has to be a balance. Try not to be negative and post daily about the pain, no one wants to hear that (to be quite honest).

Until you’ve actually experienced something it’s impossible to know how you are going to react or respond. I think it’s safe to say most people don’t like the thought of having surgery—but, taking in that news, absorbing what this means not only right now… but for years down the road provides a unique time for clarity and introspection. While you’re sick or in the hospital or recovering at home—the sun keeps shining, people live their lives, the clock keeps ticking. While you may feel like your world is coming to a halt—it’s all in motion and you are moving towards better days without even realizing it.

Be well,

Natalie

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