I’ve been acting strange lately. I’ve been going through a lot over the past few months with my colitis and my jpouch and not blogging or telling people about it. Which is not usually like me. Since my diagnosis, I have always wanted to find a way to bring more awareness to inflammatory bowel disease, to talk to as many people as I possibly can about what I was feeling, the pain I was in, and what I have learned through my journey. I’ve shared every detail of every surgery, every infusion, every hospital stay, all of it.
Until the past few months.
One of the biggest flaws of those of us with IBD, is that we lie. You’re probably lying to yourself right now. “What is she talking about? I never lie. I always tell the truth about my symptoms and they aren’t even that bad. I’m managing my disease. I’m fine.”
We lie to our doctors because we are afraid of next steps. We lie about how many times we go to the bathroom. We lie about how bad our pain is. We lie about how much blood we are seeing. We lie about our emotions, about our depression and anxiety. We lie to our family and friends because we don’t want them to worry. We lie to ourselves because we don’t want to believe that we are living this way; we live in a constant state of denial. But sometimes facing the truth is the only way we are going to get better.
You know what my favorite lie is? “I’ll be okay.”
So, as hard as it is for me to admit that I’m actually not okay, here’s my current truth.
The past few months, probably since August, I have felt absolutely terrible. The pain in my rectum is inexplicable, my joints ache so badly that I can barely get myself to be comfortable enough to sit on the couch without a heating pad. Every time I moved I would have to go to the bathroom. If I laughed, breathed too hard, anything – back to the bathroom. “How could this be?” I thought. “I had those surgeries so I wouldn’t have to live like this.”
On top of all of my colitis symptoms returning, the never-ending list of life’s daily tasks prevent me from falling asleep. I can never stop being stressed out. I have no patience, I want to work all the time. I want to eat good food, drink vodka sodas, and be out all night without getting overly exhausted or feeling sick the next day. I long to be just like my friends.
So, I did. I worked 10-14 hours a day. I ate whatever, whenever (and I mean WHATEVER) I wanted. Pizza, carbs, fried food, I drank pop, went out to eat constantly, didn’t drink as much G2 as I should. I drank enough Tito’s to fill Lake Erie. I definitely wasn’t working out which resulted in me being the heaviest weight I have ever been in my life. (PS this is all very difficult to write and embarrassing to admit, but this is how I’m going to heal. Plus, if it means helping even one person find an answer to why they can’t manage their IBD, then it’s worth it.)
Worst of all is that I haven’t put myself first for over a year. ONE YEAR. That’s 365 days of taking shitty care of myself and telling that same lie over and over again. “I’ll be okay.” I would rather drop whatever I’m doing to rush to work, answer a client phone call, push myself to go somewhere just because of FOMO, I go out and eat terrible food from restaurants I shouldn’t be eating at, taking shots of fireball, staying up all hours of the night on my phone, and constantly stressing about things that I can’t control.
Moderation is a word I know the meaning of in a literal sense. But if you asked me what I do in my life moderately, the answer would be, “nothing.”
I’m the biggest hypocrite I have ever met. I have vowed to make it my mission in life to help those who live with Crohn’s Disease and ulcerative colitis. I blog about what’s right, how to take care and manage your disease, who to listen to, how to talk about it, what to eat, how much you should sleep. Do I currently practice any of that advice?
No. I don’t. What kind of role model is that? What example am I setting for those who look to me for inspiration?
When it came time for my yearly scope on October 13th I prepped like I normally do. Made jello, drank the Miralax and survived on popsicles for 24 hours. My boyfriend and I drove to the Cleveland Clinic. Mike knew I had been going to the bathroom a ridiculous amount of times. I told him that my cuffitis is probably just really flared.
Side Note: Rectal cuff inflammation (sometimes called cuffitis) is inflammation in the part of the rectum that is left after ileal pouch-anal anastomosis (IPAA) surgery, which is more commonly known as j-pouch surgery.
I’ll never forget when I was first diagnosed with cuffitis. Dr. Shen said to me, “When your rectum is sick, you are sick.”
That couldn’t be truer.
My boyfriend Mike, my dad, and I waited in the lobby of the Crile building at the Cleveland Clinic for over 4 hours. I was supposed to be scoped at 1:00, I wasn’t brought back into the exam room until 6:30 p.m. For those of you who don’t know who Dr. Bo Shen is, I’ll give you a small synopsis. He is the best jpouch doctor you will ever find. People travel from all over the country, even the world to see him. I had someone refer to him once as “pouch Jesus,” which is why we had to wait so long for me to be scoped. If you ever have a problem with your jpouch, you go see Dr. Shen. The wait is worth it.
After about 5 different nurses trying 30 different times to get an IV in, I was finally able to be wheeled back. I was ready to hear the usual, “Your cuffitis is flared, your rectum is red, stop eating carbs, eat lots of lean protein, red meat, no sugar, stay on your Canasa and Hydrocortisone suppositories.”
None of us were even remotely ready to be told what we were. While in the recovery area, even though I was drugged on versed and valium; the concerning look on Dr. Shen’s face said it all. When he pulled my dad to the corner to show him the pictures of my jpouch, I knew it was bad. Mike and I sat there, trying to listen. Mike’s face went from emotionless to concern. I could hear snippets of the conversation, “not good” – “weight is high” – “cutting off blood flow to the pouch.”
My dad rushed to my bedside, he wasn’t angry, but stern. “You’re done with the pizza, done with the drinking. You’re done living a life that you know you aren’t supposed to be living and making the choices you aren’t supposed to be making. Your weight is the highest it has ever been and it’s cutting off blood flow to your pouch.”
My jpouch is dying. I have what’s called ischemia of the jpouch. Ischemia is an inadequate blood supply to an organ or part of the body. The tissue that surrounds my bowel is inflamed from the fatty and high carb foods I had been eating, which caused that tissue to swell and cut off circulation to my pouch. As if that wasn’t enough to hear, I also have severe pouchitis and the cuffitis from my rectum systematically moved up to my distal pouch (the lower part of my jpouch).
My dad kissed me on the head and left. Mike and I sat there in silence. I immediately felt a wave of extreme anger come over me. “How could they be sitting here calling me fat? How could they possibly think that this is my fault? This is bullshit.”
I wanted out. I wanted out of that recovery room, I wanted out of that hospital, and I definitely was not going to make the effort to listen to what anyone had to say.
I spent two days feeling sorry for myself. Refusing to eat. All I was focused on was the fact that they called me fat and were blaming me for the state that I was in. I turned off my phone, I cried, I screamed in anger. I felt humiliated. I was sick and incredibly pissed. I didn’t want to talk to anyone and I didn’t want to hear any advice. I needed to have that meltdown.
I finally realized that hiding under my covers was not going to solve anything and it certainly wasn’t going to save my jpouch. I thought back to the day I found out I had to have an ostomy. How embarrassed I was for acting like such a brat to my surgeon and nurses; when in fact, that ostomy is the best thing that ever happened to me.
That’s exactly how I was acting then, too. Like a stubborn, ignorant brat.
Enough was enough. I took a deep breath and turned on my phone. I had at least 50 texts along with an epiphany. All of these people love me. All of them care about me and my health. Every single one of them was worried about me when they hadn’t heard from me after my scope.
I called my dad and Mike and apologized to them. Seeing the look on my dad and Mike’s faces when Dr. Shen explained what was going on is something I will never forget. It’s one kind of pain to actually physically live with and feel IBD. It’s another to hurt the people that you love the most because you aren’t managing it the way you are supposed to. I made so many poor choices that I gave colitis the power to rule my life. I was no longer in control, my disease was.
I had to figure out how I was going to get the control back. It’s similar to a drug addict or an alcoholic hitting rock bottom. I hit my rock bottom. I HAD to hit my rock bottom, I’m glad I did. I hurt the people who love me the most and that is a selfish way to act.
When you are sick with a chronic illness, it’s not just about you and your pain. It’s also about the people that you love and the pain that they feel. When you are sick, your entire support system suffers.
I woke up the next morning and went to work. I sat down with my boss and my co-workers and explained to them what was going on. Admitting that I was sick again. Admitting that I am out of control and have made poor choices. Admitting that I was ready to change and most importantly, admitting that I need help. Seeing the sadness in their eyes as I explained to them how sick I am was hard, and it made me realize how much they all love me and want me to better. They listened, they asked questions, and they offered advice. Now every single day since then they have helped push me forward.
I’m so blessed to work for a company and for a boss who understands – who knows that I’m going to have bad days and that fixing this is going to be a journey. My boss and co-workers don’t judge me for it, and they don’t make me feel like a burden. They make me feel loved and accepted.
I work in downtown Cleveland at a PR agency in the Galleria. Across from my office is a brand new YMCA. I walked over there, explained to the person at the front desk that I wanted to start working with a personal trainer twice a week. I know how to run and I know how to work out so that I lose weight. I don’t know how to work out to heal my body. I need to strengthen my core and learn how to build myself up so that I can feel the very best I can.
There was another young girl standing at the opposite end of the counter. She had overheard me explaining my medical issue and needs and how I have ulcerative colitis. She told me that she is a nutritionist and her brother has Crohn’s. Perfect.
It’s now the end of November and I already feel so much better. It’s incredible. I had to complete a round of Tindamax, which wasn’t easy. A few days of vomiting, everything tasted like metal, blah. But my bathroom trips immediately lessened once the round of antibiotics was over. I’ve been working with my personal trainer, Nikki, for 6 weeks now. She has made me realize working out is so fun and stress relieving. She listens carefully to me and knows exactly what I should be doing to strengthen my core so that my body can heal.
A very large portion of my diet is now organic. I eat a lot of baked chicken, sweet potatoes, and turkey. I LOVE turkey bacon. My favorite breakfast is 2 egg whites, a few pieces of turkey bacon and greek yogurt. I love making protein pancakes. I’ve stopped drinking alcohol completely and we don’t eat out at restaurants nearly as much as we used to. We pick one night a week to eat out. I have cut out all carbs. My stomach and face have thinned out. I’m already down 10 pounds. My goal is 10 more.
I’ve changed my entire life and I’m starting to feel so amazing. Part of my treatment plan is Hyperbaric Oxygen therapy, which I start today. I get a lot of anxiety thinking about being in one of those chambers, but I have to do it to get better. Just like working out is literally one of my medications, so is this hyperbaric chamber.
Hyperbaric oxygen therapy (HBOT): is a medical treatment which enhances the body’s natural healing process by inhalation of 100% oxygen in a total body chamber, where atmospheric pressure is increased and controlled. We are trying to increase the oxygen and blood flow to my jpouch.
Nothing is ever easy, I’ve had some roadblocks along the way. I was in the hospital last week from passing a kidney stone. I had hand, foot, mouth disease. (Gross). I had blisters all up and down my throat, throughout my voice box and on the tops of my feet. I couldn’t eat or swallow for 3 days. People with no colons get dehydrated WAY easier. Your colon is responsible for drawing the water out of the food you eat and replenishing it into your body. I don’t have that. Which is why I have to drink G2, which has the right amount of sodium and electrolytes that my body no longer retains from the food I eat. Too much water can actually dehydrate me further because it flushes everything out.
I cannot thank my parents, sisters, and friends enough for the support that they have shown me over these past 6 weeks. It’s been tough. I honestly think it’s even tougher than when I was going through the surgery process. You get one chance at having a jpouch. I’m so disappointed in myself, but at the same time, I’m proud of myself because I am working really hard to fix this.
Mom and Dad: thank you for always loving me and supporting me, even when I eat too much pizza 🙂 I’m sorry that I let this get so bad, I promise to continue working really hard every day to make you proud. Seeing you two upset and knowing that you feel helpless is awful. I promise to turn this around. Everything I do is to make you proud. I love you both more than words could ever say.
Mike: You came into my life at the perfect time. I have spent the past 5 years looking for someone who would care enough about me to understand what its like to love someone with a chronic illness. I know this hasn’t been easy for you, but you are the strongest person I know for loving me. You’re my best friend and you make me want to be a better person. You motivate and inspire me every day. Thank you for all that you do for me. If we can make it through this, we can make it through anything. You have completely changed your life to accommodate mine and that is the truest love I have ever felt.
Christine and my Studiothink family: There aren’t enough words to thank all of you for how much you support me. I can’t imagine how hard it is to work with someone who has been absent quite a bit lately, who may be angry because of pain, or who may be difficult to read because I don’t want to put you through any more stress than what we deal with when it comes to our work. I know I can always count on every single one of you. Eleanore – to sit in the ER with me just so I didn’t have to be alone. Christine– for taking me to my HBO orientation because you knew how afraid I was to face those chambers. Steve, Tony, Meg, Missy, Bev, Kara, and Sue – thank you for lifting my spirits, listening and truly trying to understand what I’m going through.
Kristin, Gaylyn, Rasheed, and Emma: No words needed. Our bond is one that will last a lifetime and I consider you family. All of you saved my life and taught me compassion, understanding, and have given me a love for life with IBD because it brought us together.
To all of those who I’ve met through mentoring, Pfizer, or social media – the bond that we have is incredible. I stay positive and fight as hard as I do so that you know that no matter what, you’re going to be okay. You have to work hard and take care of yourself. The fact of the matter is that we are different. If you don’t feel good, don’t push yourself. Listen to your body and always take care of it. We get one chance at this thing called life, let’s make the best of it.
Most importantly, let’s stop lying and start asking for help when you need it.