The steps one IBD mom and teacher takes to stay healthy, while being immune suppressed

Biologic drugs have the ability to give many of us in the IBD community a chance to live a much fuller, and well-rounded life. But there are trade-offs, especially when it comes to our immunity and the ability to fight off infections. As a mom of a 2-year-old and 6-month-old whose been on Humira for more than 11 years, I’m extremely cognizant of protecting my kids from sickness to not only protect them, but myself. I often feel as though people may think I’m over the top with worrying about illness in my household, but quite honestly, unless you or someone you love is immune compromised, it can be a difficult concept to grasp.

This week–a special feature from a Maryland elementary school teacher with indeterminate colitis. Meet Lisa Lacritz. lisaShe’s a 38-year-old wife and mom who juggles two autoimmune diseases. She also has Hashimoto’s disease. Since she started on Remicade in 2018 following her IBD diagnosis, she’s experienced the difficulty of  warding off illness while being an elementary school teacher and a mom to a young child.

“Shoes off, hands washed!”  My son knows the routine by heart. Every time we come into the house, shoes come off and hands get washed. I like to think that all of my years spent worrying about germs when I didn’t need to be, were fantastic training for when I actually needed to be concerned.

When I was diagnosed with IBD, I was hesitant to get on a biologic because of my fear of being immunosuppressed. I’m an elementary school teacher and when I started on Remicade infusions, my son was only six. I basically spend my day in a Petri dish. fullsizeoutput_269aDealing with the symptoms of IBD was more than enough–how on Earth would I be able to handle that plus avoid picking up viruses at school and in public?

Taking steps to be proactive 

After I got sick on the second day of school last fall, I decided that washing my hands frequently wasn’t going to cut it. I have always been a frequent hand washer, especially at school, but I needed more protection. At first, I was nervous about how others would perceive me. There were a lot of confused looks by coworkers and students when I would politely decline to use someone else’s pen. I started carrying a pen with me everywhere to ensure I wouldn’t have to use a communal pen. Now people know that I always have “my” pen with me and that I don’t share it with others.

Another thing I’m very careful about is touching door handles and knobs, especially the door to the main office. The main office is where you can find the school’s health room, where every sick kid passes through. I either wait for someone else to come and open the door, or I use a barrier such as a paper towel to open it and then wash my hands right away.

I never touch my face and I keep my phone in a plastic bag (quart size bags work great!) so that I keep school germs at school. Kids are definitely puzzled by that last one, but I explain that I need to keep germs away as much as possible, and if I need to touch my phone then my phone gets the germs on it so I protect it with a plastic bag.

Worrying less what others thought and making my needs a priority

fullsizeoutput_3800I really needed to stop caring about what others think and prioritize my health. One of the most surprising things to me was that people really don’t understand what immunosuppression means. Some people think I’m just a paranoid germaphobe even after I’ve explained that I’m immunosuppressed. They don’t understand that a simple cold for them, can mean days of sick leave for me due to a secondary infection. Or a fun day swimming in the bay can mean a bacterial infection for me that lasts for weeks and causes symptoms similar to a bad flare.

Yes, it is mentally exhausting to worry about immunosuppression on top of all the other things chronic illness brings. Plus being a teacher. Plus being a mom.

As much as I hate getting sick, the worst part for me is missing out on doing fun things with my son. IMG_0580Somehow my body knows when we have something fun planned and chooses those times to conk out on me. When I’m lying on the couch at home feeling sorry for myself while my husband and son are at a friend’s New Year’s Eve party or Memorial Day BBQ (both events I missed this year), I try to remind myself that Remicade is what allows me to lead a relatively normal life and be able to do things like go sledding with my son on a snow day and take him Trick or Treating. I couldn’t do those things when I was in a bad flare before treatment and definitely can appreciate them more now. I just make sure shoes come off and hands are washed right when we get home.

 

Three years of Lights, Camera, Crohn’s: 10 Tips for Becoming an IBD Blogger

Tomorrow (July 23, 2019) marks three years since Lights, Camera, Crohn’s became a reality. Three years since I closed my eyes and took a major plunge, wondering if my words and effort would make a difference. Three years since I decided it was time to stop living my IBD life in the shadows, and instead bring my personal struggles and triumphs to the forefront. A31AD785-CDF7-43D5-BA1D-BFDDC69B493EI chose to blog and become a patient advocate for several reasons. I was tired of feeling isolated. I wanted to be a voice for the newly diagnosed, as well as the veteran patient. And, as a journalist, I’ve always had a love for the written word. For me—expressing myself through writing comes a lot easier than saying the words out loud.

July 23rd is a big day on the calendar each year for me—it’s the anniversary of my Crohn’s diagnosis (14 this year!), my dog Hamilton’s birthday (He’s turning 11) and it’s the day I met my husband online (6 years ago!). If that’s not a sign that things happen in threes, I don’t know what is! Knowing this, I had to launch my blog on this day. Rather than focus on how many years I’ve been riddled with a chronic illness, it’s a way to celebrate how far I’ve come on my patient journey.

I’m going to do a little humble brag right now. Since launching my blog in 2016, I have never missed a week of posting fresh content. Through two pregnancies and being a stay at home, IBD mama with a now 2-year-old and six-month-old, I found a way to stay true to my own personal deadlines, because this blog, and this community and IBD family are so important to me. 41113C90-2C99-4252-B69B-212DB2295A33In that time, I’ve shared 171 new articles (because some weeks I post on Mondays AND Wednesdays). Over the last three years, more than 105,000 people from around the world have checked out Lights, Camera, Crohn’s. Could the articles be organized better? Yes. Could the design be snazzier? Yes. But, my focus as an IBD blogger and advocate is to give you the nitty gritty. I’d rather spend my time and energy on content vs. design.

One of the most common questions I receive is, “How do you become a patient advocate?” or “How do you become a blogger?” It obviously takes time, passion, and commitment.

Here are my top 10 pieces of advice for you, that I wish I would have known before blogging.

  1. Write for the reader and for yourself. As patient advocates and bloggers, it’s generally our own personal experiences that shape the content we share. That experience and viewpoint is invaluable, but remember—the reader isn’t here to check out your diary. They are here to learn ways to improve their patient journey, to educate themselves. When you write, write to the people reading. Don’t bore them with every.single.detail. of your doctor appointment. Use that experience as the foundation and springboard into a larger discussion that is easy for others to relate to. Think “news people can use”…otherwise, why read your stuff?
  1. Be bold. Be vulnerable. It can be very stressful and overwhelming to put your whole health story out there to the public. If you’re like me, I kept my disease to myself and close family and friends for a decade. Going from that—to sharing my story with thousands, is polar opposite. But, I can tell you, once you open up, you won’t regret it. The moment you break down your own barriers and show your true stripes, you open yourself up to endless support and quickly come to realize how many others understand your reality.
  1. It’s not a competition of the sick. Just because you haven’t started a biologic, just because you haven’t had surgery, just because you don’t have a bag, doesn’t mean your patient journey is any less significant or important. IBD impacts each and every one of us differently, but there are so many parallels along the way. Trust that what you are going through physically, mentally, and emotionally is something many people can relate to. I haven’t been hospitalized for my Crohn’s since August 2015 (before my blog went live!), but in my 14 years living with the disease I’ve experienced so many highs and so many lows, so many flare ups and so many feel good days. It all matters. And it’s all a part of it. People don’t just want to see you in the hospital or struggling, they want to see other aspects of your life, too.
  1. Be patient with yourself through the process. Writing about life with IBD can be emotional. It can be draining to bring up old memories that were the most difficult days of your life. It can also be cathartic. Write stream of consciousness-style. Rather than thinking about each word and constantly hitting the delete button, just let it flow. Edit yourself later, not in the moment.
  1. Have a thick skin. Being a patient advocate and a blogger isn’t always sunshine and rainbows. You are going to receive both public and private messages from naysayers. People may question why you aren’t “healing yourself with food” or “why you need a biologic”. The only person you need to answer to is the person looking back in the mirror, along with your physicians. No matter how much you share online, no one has the FULL story of your own personal experience. Let the judgers, judge…and keep on trucking. Keyboard warriors have a way with words, don’t allow others to bring you down or stress you out. That’s the last thing we need living with IBD. I’ve come across a few instances on Twitter, where banter got pretty heated. When my heart started racing and my stomach started hurting, I knew it was time to block them and move on. Don’t be afraid to block when needed.
  1. Remember you are a patient, not a medical professional (unless you are both!) It gets dangerous when patient advocates spout off medical advice to those desperately looking for answers. When people come to you for support or with questions about how to handle their care—always advise them to talk with their care team, and remind them you are not a doctor, but this is what has worked for you. Yada Yada Yada.
  1. Lean on others in the IBD family for guest posts/sharing your content on social media. Advocacy is not a competition. There is room at the IBD family dinner table for ALL of us. Interact with other people’s blog articles and social posts. Show them the love, chances are, that love will be reciprocated. Oftentimes, it can feel like everything you are doing is falling on deaf ears (thanks so much, Facebook algorithm)…that being said, don’t focus on the “likes” and the “comments”…if your article or your words help one person or one family, you’ve made a huge difference.
  1. Always be on the lookout for content. The former TV news anchor and reporter in me always has my eyes and ears open for the next story. Look at social media and see what’s trending in the IBD community. Ask your followers what topics they’d like to see more on. Set up Google Alerts in your email to see the latest about IBD research and news. Pay attention to people’s stories. When someone reaches out to me with a question, I often dig a little deeper and see if this is something that would make for a good article. Every single person has a story to share, it’s just a matter of discovering what that story is.
  1. Be authentic and true to who you are. Oftentimes businesses and companies will reach out to patient advocates looking for promotion or support. Don’t be a “yes-(wo)man”. Only promote causes and products that you genuinely believe in. Don’t sacrifice your hard-earned credibility for a few bucks, because your credibility is priceless.
  1. Stop selling yourself short. Your IBD life and story is valuable. Gone are the days when big pharma and businesses can tap into us as resources for free. We’ve all gotten smarter about this. Your painful journey hasn’t been easy. But, with that journey, you’ve gained a perspective that businesses are thirsty for. They NEED our insight. They NEED our input and perspective. Unless you live with IBD personally, you can’t fully grasp what it’s like. Sure, volunteer work for the Crohn’s and Colitis Foundation is one thing, but as soon as someone wants you to be an “influencer” or speak at an event, etc. know your worth and don’t ever be afraid to ask what the compensation is.

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I’m hopeful that three years from now on July 23, 2022, I’ll still be blogging and will still be a vocal voice for the IBD community. Thank you for sharing in my journey and for pushing me to be better. Thank you for reading and for caring. Thank you for being a listening ear and a watchful eye. Thank you for walking alongside me through pregnancies and motherhood as a woman with IBD. I promise to deliver more content that helps guide you through your journey and show you just how capable you are of being everything you ever hoped for. God bless.

XO,

Natalie

Another one bites the dust: My latest colonoscopy tips

Save the date, it’s time for your annual colonoscopy! Ugh. From the moment I schedule my scope I make a mental note and the dread and anguish looms over as the day of the procedure grows near. It’s so much more than a procedure to me though. The entire process—from getting the prep, to taking the prep, to getting prepped at the hospital is a painful reminder of my reality. I have Crohn’s disease. A day, not even an hour, usually passes where I don’t think about my chronic illness—but this is a stark reminder that I’m different. Different from other people my age. Different from all the “healthies” in the world.

For me, downing the magnesium citrate is physically painful. The moment I smell it. The moment the disgusting liquid touches my lip, the hair on my arms stands up and I instantly start to dry heave. Then, I remember I have 20 ounces to get down, plus 64 ounces of Miralax mixed with Gatorade…all within a few hours. It’s overwhelming and daunting. 4C27B95A-9514-472E-84F2-70A78A8AC020

If you’ve had a colonoscopy, you get it. The prep is the worst, the procedure is easy. When you live with IBD, the worry about what can be discovered weighs heavily on you. This time around—along with the prep, I had some additional “obstacles”. This time—I was home with my rambunctious (but oh so sweet) 2-year-old and my 6-month-old, while going more than 72 hours on clear liquids. Along with being an IBD mom, I’m breastfeeding. That in and of itself is exhausting and zaps your energy. Nothing like burning 500 calories while you’re not eating!

As patients, each experience throughout our journey impacts us in a unique way and toughens our skin a bit. Each test, each poke and prod, each surgery, desensitizes us. Every person is different, no journey is the same.

But, I want to share a few helpful “work arounds” I used this time.

  1. GUMMY BEARS!! IMG_5276Boys and girls, this is a game changer. Gummy bears are considered a clear liquid because they liquify upon digestion, much like Jello. In the days leading up, you can eat all the colors, but 24 hours before your scope stay away from any red, orange or purple as those colors are not allowed during prep. I used gummy bears to chase the magnesium citrate, two bears for every sip! It was also a nice treat and it felt good to actually chew something after only having liquids for days.
  1. 72-hour liquid diet. This is aggressive, it’s not easy. But, it can be done. I impose this on myself and for years have seen what a difference it makes with my prep. Much less to pass, and if you aren’t able to drink all your prep—less chance of needing to redo the scope.
  1. Daydream about that first meal, eyes on the prize. There’s nothing quite like that first morsel of food you get to eat after your colonoscopy. Use this as a reward and something to look forward to. IMG_5286Look up menus and decide where you want to treat yo’self. Along with that first meal, I try and plan something fun to do. This time around my husband and I went shopping after breakfast and then we went out to dinner and to a light show at the Botanical Gardens (where we got engaged!). Knowing I had that to look forward to, helped me a great deal!
  1. Lean on your village. It’s nearly impossible to go through this process alone. My husband took my toddler out for dinner this week so I wouldn’t need to see them eating or smell food. (Greatly appreciated). My mom flew in from Chicago to take care of my kids the moment I started prep and so that my husband could take me to the procedure. I shared my experience on Instagram and connected with hundreds of people publicly and through private messages. People shared their “tricks”, offered words of encouragement and made me feel empowered. IMG_0913My compassionate little 2-year-old even held my glass of prep with me and didn’t want to leave my side when I went to the bathroom. (lucky him!)
  1. Rather than lemon lime Gatorade, check out the Cherry Frost flavor! I learned this from a virtual friend. The mixture of the Miralax is SO much better this way. Much more palatable and I tolerated it much better. It allows you to enjoy a “red” flavor, without drinking something that is red in color.
  1. If you’re breastfeeding, get ready to pump and dump and supplement if you don’t have a stash in the freezer. The day of the prep, I pumped and dumped and then 24 hours after the procedure you need to do the same, so the anesthesia is out of your system. IMG_5214In the days leading up, my GI recommended I drink whole milk or chocolate milk to get some protein for the baby. (I chose not to do this because my stomach can be sensitive to dairy.) I made sure Sophia got a couple bottles of formula each day, since my breastmilk was probably lacking it’s normal nutrients.
  1. Wear a robe or a dress on prep day. It’s much easier to make a mad dash and not have to pull your pants or shorts on and off every time. I wore a casual summer dress that didn’t press on my stomach or slow me down in the bathroom.

The play-by-play of how this colonoscopy experience measured up to others

Overall, I handled the prep much better than normal. I was able to get about 90% of it down without a problem. I slept four hours and was on the toilet from 2:15-3:30 a.m. At 3:30 a.m. I tried to take the remaining 10 ounces of magnesium citrate. This is where things started going downhill.

Up until this point, I hadn’t shed a tear or vomited. This was a first for me! As soon as I held my nose and started pacing in the darkness of my kitchen as I tried to get it down, I puked in my kitchen sink and started crying. I felt miserable. Exhausted. Nauseous. Weak. I was ready to wave the white flag and just be done with it. When I puked again, I decided I couldn’t take anymore. I was nervous about being cleaned out, but physically and emotionally I had checked out.

As the nurses prepped me for the procedure, I told them about my bad veins and horrible IV experiences. (At one point, during a hospitalization for an abscess the size of a tennis ball, it took 4 people, EIGHT tries to get my IV)…ever since, I have slight PTSD about getting IVs. The nurse grabbed a vein finder and decided to go through my hand. She tried getting four tubes of blood drawn through my IV, but it was making me too weak, it burned, and the blood wasn’t flowing, so they waited to draw labs until after my colonoscopy.

A9483E68-0059-4CA4-94C8-B37217FBF6FDIt’s in these moments where I pause and reflect with positive internal self-talk. I think about family members and friends who inspire me. I pray to God for a smooth procedure and good results. I try and breathe and relax the best I can.

I was worried about whether I was cleaned out enough. My GI rated my prep a “9” on the Boston Bowel Preparation Scale (BBPS). It’s the scale used to judge the quality of bowel cleanliness and replaces subjective terms such as “excellent”, “good” and “fair”. Three segments of the colon are looked at for this, with the highest rating being a 3. I was pretty pumped to get a 9 this time around, despite throwing up the last 10 ounces of mag citrate! Now, in the future, I’m not going to beat myself up the morning of if I can’t get it down.

Drum roll please…The Results!

Honestly, I could not ask for better results. My ileum and entire colon looked “normal”, no specimens were collected, and I am in mucosal remission. Hearing you’re in remission is amazing, and something I don’t take for granted. I take that word with a grain of salt though. To me, remission is fleeting. It can be robbed from you quickly. I was once told I was in remission after a colonoscopy and then less than a week later, I was hospitalized with a bowel obstruction.

IMG_5282Rather than rely so heavily on achieving remission, focus more on how you feel each day. Are you having more “feel good” days than symptomatic days? Are you able to function and complete tasks personally and professionally without your health getting in the way?

I am sensitive to the fact that many people in the IBD family won’t ever be told they are in remission. It took nine years for me to ever hear that word uttered out of a GI’s mouth. So, trust me, I get it. Don’t beat yourself up over this. Trust in how you feel. You know your body best.

Coping with the fear of loss while living with IBD

It was love at first sight. From the moment he entered the room, I knew there was something special about him. He was shy, yet grabbed the attention of everyone around him. Timid, but gentle. So handsome and regal. His name was Hamilton. He had been sold on the street for $10 by his original owner to little girls in the neighborhood. Their mom brought him into the animal shelter, and he landed a spot on the weekly Humane Society segment on my morning show, desperately looking for a new home. IMG-4343

We went from being strangers to family in a matter of minutes. During that segment, I announced to thousands of viewers tuning in that I was going to adopt this dog. Here I was, 26-years-old, had never owned a dog in my life, but in that split second, he stole my heart and changed my world.

Fast forward nearly 10 years later, and Hamilton James (as I call him), has been my sidekick through the good, the bad, and the ugly. We’ve lived in Wausau, WI, Chicago, Springfield, IL and now St. Louis. Whether it was waking up at 2 a.m. with me when I worked morning shows or cuddling me on the couch during break ups, flare ups and post-surgeries, he’s been such a source of unconditional comfort and happiness in my life.

It’s difficult for me to imagine navigating life with Crohn’s and my day-to-day with my family, without him. Obviously, I knew the time would come—but not this soon. Hamilton has recently started having seizures and breathes laboriously at times. After he took a terrible tumble down 13 stairs last weekend, IMG_4315I took him into the vet and a chest x-ray showed he has congestive heart failure. The vet gave him a day to a year to live. When I saw the size of his enlarged heart in his tiny body, my heart sank. My world stopped. The tears flowed. And immediately, I felt my Crohn’s symptoms return.

Since starting his seizure medication and being put on Lasix (oh joy, a chronic illness dog—just what I need!), he seems very much like his old self—but the thought of what’s to come and knowing his health is not what it used to be, cuts me deeply. He’s my first baby. I can’t fathom what it’s going to be like to wake up and not see him. This week I’ve been struggling with anxious thoughts about what his final moments will be like. Those anxious expectations translate into gnawing pains in my abdomen that last for hours.

A6865E4F-A38B-4277-B771-2BA1F5AAC900As a mom of two and a wife, I know I need to reel it in and start coping so I don’t land myself in the hospital. But, the sadness, stress, and worry only feed my illness. What’s a girl to do? Whether you have a chronic illness or not—losing a four-legged family member is devastating and heart-wrenching.

Here’s helpful advice I’ve received from family members and friends about dealing with the pain of having a sick pet and knowing their days are numbered:

 “One day at a time. Don’t think about losing him, only think about how much you love him and how you have both enhanced each other’s lives. Key point—live in the moment, otherwise, you will make yourself sick and drive yourself crazy.”

“He’s been by your side and comforted you when you were sick, and now it’s your turn to be by his side, comfort him, and make sure he’s not suffering.”

“Exercise and focus on your stomach when you breathe, not your chest. Limit caffeine, alcohol and chocolate.”

“Some local shelters have pet loss support groups if that’s something that might help you.”

“Find a healthy outlet in which you can express your emotions, if you do any kind of mindfulness practice, do it. Stay on top of your symptoms and check in with your doctors often.”

When I think of managing my IBD, Hamilton has been and continues to be a big part of my patient journey.

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Post bowel resection snuggles

Calming my anxiety and coping with the pain that is ahead is not going to be easy and something I know I will continue to struggle with—but in a way it helps to know the reason behind my symptoms and why they may be present.

Much like life with Crohn’s, there’s no sense in waiting for a flare up or a hospitalization to happen. Rather, it’s all about celebrating the good times, taking everything a day at a time, and making the most of the calm before the storm. Instead of dwelling on the inevitable and being miserable, I want to soak up the beauty of the right now. Instead of letting the sadness seep into the remaining days we have together, I want to continue to discover the joy he brings to my life. IMG-4460

I plan to use that perspective and that strength to be a rock for Hamilton and bestow upon him the same love and support he’s given me since we crossed paths that unforgettable January morning on Wake Up Wisconsin.

Why you shouldn’t put ‘self-heal’ and Crohn’s in the same sentence

This article was written earlier this month, while getting my hair done. 

I hear her cry. I glance at the clock that reads 4:55 a.m. I clutch my abdomen. The pain I went to bed with hours earlier is amplified. IMG_4409It feels like a fiery pain inside my rib cage that travels all the way down my stomach. The gnawing makes me feel raw internally and externally. I put my glasses on and as I’m standing up and rocking my daughter in her nursery, I try to think of her warm little body as a heating pad.

I wrestle with my thoughts about how to handle my pain. Last time I took pain medication I couldn’t breastfeed my daughter for 20 hours. I decide to take one 600 mg ibuprofen left over from my C-section recovery, with the understanding that as someone with IBD I shouldn’t be taking that. But I’m desperate. Desperate to get a reprieve from the pain and the inner monologue racing in my head as I lay back down. While at the same time, trying to keep my painful moans quiet so I don’t wake my husband.

I wake up and the pain is still there, but I have no choice but to take on the day. Thanks to my mom being in town, I’m able to head to the hair salon for a much needed hair cut and color. The stylist asks me questions and my Crohn’s comes up fairly quickly in the conversation. Her response—“one of my best friends has Crohn’s and she’s completely self-healed herself by eating very strictly”. She goes on to say her godmother has Crohn’s, too—and constantly posts pics on social media eating and drinking, so it’s no wonder she struggles, acting almost disgusted by her godmother’s lifestyle and patient journey.

I bite my tongue. The pain from the night before and the worries weighing heavily on my mind and heart are still fresh. Self-healing and Crohn’s, if only it were that easy, that simplistic. But I don’t have the energy to get into that discussion. IMG-3099The fact that so many people without IBD are under the assumption that our pain and symptoms are self- imposed upsets me. We already beat ourselves up mentally as it is. My husband and I took our son for ice cream last night, so immediately I wonder if all of my pain is a result of the choice to have ice cream with my 2-year-old.

As a mom who’s battled Crohn’s for nearly 14 years, the background noise and ignorant comments about IBD tend to bounce off me. I have thick skin, now. But, it’s worrisome at the same time. What if the girl getting her hair done wasn’t me? What if she was newly diagnosed and struggling? What if she chose to go off all medications and “self-heal” because someone cutting her hair told her it was possible? This is what we’re up against as patients. Everyone tries to relate and thinks they are offering “words of wisdom” or assurance, when really they’re just contributing to the hurt and feelings of being less than. IMG-4410

Luckily, I’m not that girl. But—if you’re reading this, know that your patient journey is unique to you. What works for one person, will not necessarily work for you. Needing medication to manage symptoms and keep your disease from progressing is not a sign of laziness or weakness. You need to take the steps necessary to improve your quality of life and overall health. Living with IBD is not black and white. There is so much gray area. Trust in your physician. Trust in the support available both online and in your community from fellow patients. Be patient in discovering what works for you, be flexible, and do what you need to do to self-heal.