Dealing with Depression While Taking on IBD: Louise’s Story

August 5, 2019August 5, 20191 Comment

No one feels their best when they are unwell, and this is no different for those with chronic illness. There is an ebb and flow to anything chronic – meaning there are good and bad days – but what happens when your bad days outweigh your good days?

In a Twitter poll I conducted this week asking fellow patients how IBD has impacted their mental health, 40% said they’ve experienced depression and it’s a struggle, while 60% said they’ve dealt with mental health issues from time to time. I found it telling that no one who responded to the poll said their mental health wasn’t impacted at all.

This week a guest post from 31-year-old Louise Helen Hunt from the United Kingdom. She was diagnosed with Crohn’s in 2011 and has undergone four surgeries in the last three years. Louise opens up about her struggles with mental health, while living with IBD and offers incredible perspective and words of wisdom that everyone in our community should be mindful of. I’ll let her take it away…

I hit rock bottom six months into my IBD diagnosis. I struggled to find a treatment plan that worked. This involved months of being in and out of hospital. I tried very hard to be positive, but I was sinking. I refused help, I didn’t want to talk about it and I certainly didn’t want any more medication.

Fast forward to 2018, six years since those first depressive episodes and I was still feeling depressed. I’d gone through two major surgeries very close together, came out with a stoma, struggled with my body image and was starting a new job. It was a stressful time and I was not coping. I needed help.

There are lots of emotions experienced by those who live with IBD, both positive and negative. Depression and anxiety come up often on patient surveys from various sources, rates of depression are higher among IBD patients as compared to the general population.

The balancing act of IBD and Depression

Depression is a serious mood disorder that causes feelings of sadness and loss of interest. Depression can make you feel exhausted, worthless, helpless, and hopeless. It can also make dealing with daily tasks difficult. Tasks associated with managing a chronic illness may even feel insurmountable.

Depression often gets worse if it is not treated. IBD specialists are encouraged to assess not just the physical symptoms, but also the emotional symptoms. These can be:

Persistent sad, anxious, or “empty” mood
Feelings of hopelessness, negativity
Feelings of guilt, worthlessness, helplessness
Loss of interest or pleasure in hobbies and activities that were once enjoyed, including sex
Decreased energy, fatigue, being “slowed down”
Difficulty concentrating, remembering or making decisions
Insomnia, early-morning awakening, or oversleeping
Loss of appetite, weight loss, or overeating and weight gain
Restlessness and irritability

Depression is treatable. It is important to seek out a counsellor who has experience in treating people who live with chronic illness. And while it can take some time for the symptoms of depression to go away, seeking treatment can help improve your mood, your quality of life, and your ability to cope with IBD.

This can be in the form of Cognitive behavioural therapy (CBT) – an evidence-based treatment for depression and anxiety, it works to identify and change negative thought patterns and behaviours which can contribute to depression – or medication management which can be used in addition to therapy.

How to handle depression when you’re chronically ill

Talk to like-minded people – this could be online, at a support group or your friends.
Keep a journal – getting your thoughts out of your head can be very taxing but ultimately therapeutic.
Take your prescribed medication regularly.
Remember there is no shame in needing or taking medication to cope with your symptoms.
Be active – whether this is running or going to the gym, even something as simple as a regular walk can help: being outside and feeling grounded – literally – can lessen some of the symptoms of depression.
If you are having a crisis, please seek medical attention. Be proactive and pick up the phone.
Don’t expect to “snap out of it.” Instead, expect to feel a little better each day.
Ask for and accept help from your family and friends.
Know that positive thinking will eventually replace negative thinking as your depression responds to treatment.

Remember that feeling better takes time, and that your mood will likely improve gradually, not immediately.

Connect with Louise on social media:

Facebook: Louise Helen Hunt

Instagram: @louisehelenhunt

Twitter: @louisehelenhunt

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

July 29, 2019Leave a comment

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. She’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. Dealing 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

I 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. Somehow 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

July 22, 2019Leave a comment

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. I 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 23^rd 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. In 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.

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?

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.

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.

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.

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.

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.

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.

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.

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.

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.

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

July 15, 2019July 12, 20195 Comments

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.

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.

GUMMY BEARS!! Boys 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.

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.

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. Look 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!

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. My 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!)

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.

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. In 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.

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.

It’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.

Rather 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

July 8, 2019July 8, 2019Leave a comment

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.

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, I 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.

As 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.

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.

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

July 1, 2019July 1, 20194 Comments

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. It 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. The 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.

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.

Saving on prescription costs: Easing the financial burden of IBD

June 24, 2019June 24, 2019Leave a comment

This blog post is sponsored by Inside Rx. All thoughts and opinions are my own. The Inside Rx trademarks and graphics are used with permission of Inside Rx, LLC.

Sticker shock. Disbelief. Concern. If you live with a chronic illness like me, chances are you’ve experienced all of these feelings when it comes to purchasing prescription medications. The cost to manage IBD can come with a hefty price tag. Whether it’s having to purchase the most expensive insurance plan so you have the lowest deductible or having to fork over money for your daily pills and biologic drug treatments—it’s a lot to handle, from both a physical and a financial standpoint.

According to the CDC, in the past 30 days almost HALF of people (48.9%) have used at least one prescription drug. About 23% of people used three or more prescriptions.[1] This comes as no surprise when you learn that by 2020, 157 million Americans will be living with a chronic illness.[2] This is where Inside Rx comes in. Launched in 2017, the Inside Rx prescription discount card can make saving on prescription medications easy. The Inside Rx card is not insurance and offers eligible users discounts on brand and generic prescriptions. See InsideRx.com for terms and restrictions, and to learn more.

Here’s how it works:

Go to InsideRx.com to search for your medication and find the best deal and closest participating pharmacy near you. The Inside Rx card can be used at more than 40,000 pharmacies across the United States and Puerto Rico.
Download a free prescription savings card and see how much you could save on brand-name and generic medications.
Show your prescription card to a pharmacist.
Enjoy the savings and use the same card every time you pick up your medication.

Adhering to medication guidelines and following through with doctor’s orders is imperative in managing a chronic illness. Inside Rx works to ease the stress off your shoulders so you don’t have to cut back on your treatment or never fill a prescription. Rather than jeopardize your health and wellbeing, check this out and see if the savings can help you. There’s no shame in saving and it’s certainly something you should see if you can take advantage of.

Be your own best advocate

As you navigate IBD, it’s programs like this that help our community and deserve a shout out. In my nearly 14 years living with Crohn’s, I’ve found that prescription and biologic savings programs are often not articulated by medical professionals. Instead, as patients, we’re just supposed to or expected to find them on our own. This is a shame. Unless you’re told or hear from a family member or friend, you may be paying full price for a medication that has a significant price reduction.

Inside Rx for our four-legged friends, too!

Recently I had to put my 10-year-old Chihuahua Terrier, Hamilton, on seizure medication. There’s even an Inside Rx Pets card, which offers discounts on select human medications prescribed for pets. I went to one store and was told a month’s worth of pills was going to be $86, I went to another store down the road and was told the cost was $26. Now that I know about Inside Rx, I’m able to get his medication for $20 a month. Savings may vary for your pet’s medications though, so do your homework and visit InsideRx.com/Pets to see if you can save by taking advantage of these helpful tools for patients and pets. And please, communicate with your care team if you’re unable to fill your prescription, rather than not taking it at all. You’ll be thankful in the long run. Visit InsideRx.com for more information and terms.

[1] https://www.cdc.gov/nchs/fastats/drug-use-therapeutic.htm

[2] https://www.nationalhealthcouncil.org/sites/default/files/AboutChronicDisease.pdf

10 Tips for Ensuring Your Significant Other Can Handle Your IBD For the Long Haul

June 17, 2019June 24, 2019Leave a comment

This article is sponsored by Healthline. Thoughts and opinions are my own.

Dating is complicated. Dating can be stressful. Dating can force you to get out of your comfort zone.

One of my first photos with my husband, Bobby.

When you live with a chronic illness, dating can be downright daunting. When should you bring up your IBD with a significant other? How can you navigate the ups and downs that come along with your illness? How can you reach a sense of comfort when you need to run to the bathroom or cancel plans?

There’s not only one correct answer to any of those questions. But, as a woman who was diagnosed at age 21, who is now 35 and married with kids, I’m happy to share what worked for me. I recently led a Live Chat on Healthline’s IBD app about this topic. The main areas of concern revolved around significant others failing to grasp the severity of the disease. It’s difficult to fault what can sound like shortcomings, but being a caretaker isn’t easy. Not everyone is cut out for it.

Celebratory post- colonoscopy cheesecake!

And that is ok.

Here are my top 10 tips for educating significant others—whether it’s dating or marriage about what your experience as a patient is like.

Bring your loved one along to doctor appointments.

Oftentimes, people have no clue how severe and debilitating IBD is. Let your partner hear it from the horse’s mouth (i.e. the doctor). By sitting in on appointments, not only is it a source of support for you, but a chance for them to ask questions, listen to the discussion, and hear about all that goes into managing your chronic illness.

Have a social worker or counselor speak with you both so that you’re on the same page.

Oftentimes a loved one isn’t acting maliciously; they just don’t know how to cope with what life with IBD entails. Talking with a professional gives you a safe space and an even playing field to ‘air your dirty laundry’ and gather advice about actionable ways you can improve your relationship.

Communicate when you’re in pain—don’t sugarcoat or downplay your symptoms.
If you’re hurting, say it. If you’re struggling, tell them. The more you keep your mask on and your wall up, the more your partner will think you have everything under control and that your IBD isn’t much of a “big deal” in your life.
If your feelings are hurt—articulate why. Resentment leads to stress and can activate symptoms. Be brutally honest and open. You can’t expect your lover to be a mind reader. By bottling up your frustration you may take out your anger in a big way, when an issue could be solved and nipped in the bud before it becomes bigger than it needs to be.

Connect with fellow IBD patients on Healthline’s IBD app.

Whether it’s a live chat, reading articles, or matching up with fellow patients, Healthline’s new IBD app is a space where we all get you. We’ve all been there. We’re all standing ready. Ready to lift you up. Ready to answer your questions. Ready to listen to you vent and share advice. Advice that can make a major impact in your most personal and important relationships. Because at the end of the day, you want someone who loves you for all of you, and that includes your IBD.

Share blog articles and social media posts from fellow IBD advocates that may be able to articulate what you’re going through.

Sometimes as patients, we’re going through so much but it can be difficult to put into words. While each person’s disease presents uniquely, chances are we’ve gone through similar experiences. If you read an article that resonates or see a post on social media that hits close to home for you—share it. This is an easy way to casually show the person you love that this is what you’re going through. A simple email with a link to an article—works wonders.

If you want your person by your side at procedures and during hospitalizations, say it.

During the live chat, there was some discussion about fiancés and husbands not going to procedures or being by the bedside during the hospitalization. That a put a lot in perspective for me, as my husband has never left my side when I’ve been hospitalized (not even for an hour) and has gone to every colonoscopy.

Photo by J Elizabeth Photography www.jelizabethphotos.com

Photo cred: J. Elizabeth Photography

I’ve never had to ask. Bobby just does that because he wants to. If you want your significant other there, tell them. The disease is isolating enough, the last thing you need is to be lying alone in the middle of the night with your racing thoughts and the beeping machines.

Be with someone who you can be vulnerable with.

IBD isn’t pretty. There are days where we’re cooped up in the bathroom. There are times we’re in the fetal position for hours. If you feel at ease at your worst with your person, that’s a good sign. Recognize how you feel when you’re at your lowest point and at your best. Pay attention to how they respond when the going gets tough.

When the red flags are waving feverishly in front of your face, don’t be afraid to walk away.

Listen to your gut. You know deep down if you constantly feel like a second thought or if your partner repeatedly lets you down. If they make you feel guilty, less than, or put off by your patient experience, time to say buh-bye. Trust me, you will count your blessings in the future.

Take them along to local Crohn’s and Colitis Foundation events.

By attending local events you’ll be able to connect face-to-face with fellow couples and families living your same reality. You’ll discover how much you have in common right away. This also enables your partner to have someone who “gets” what it’s like to be a caretaker. Set up a double date or a time to hang out outside of public events.

Accountability & Chronic Illness: How Pack Health is leading the charge to empower patients

June 10, 2019June 9, 2019Leave a comment

This article is sponsored by WEGO Health, opinions and thoughts are my own.

Accountability can be a tough pill to swallow when you battle chronic illness. Often times it feels as though the only person who can improve our overall wellbeing, is the person you see looking back in the mirror. But, Pack Health and CME Outfitters is looking to offer support to patients like you and me every step of the way to make our journeys less lonesome and isolating. Pack Health in partnership with CME Outfitters does this by providing one-on-one support, over the phone and online, to help people regain control over their health.

Right now, Pack Health’s work spans across more than 20 chronic conditions, including inflammatory bowel disease. Not everyone has a support network. Not everyone has a spouse or a significant other they can lean on. Not everyone feels like they can take on the beast that is chronic illness alone. Get this—the average patient is only with their doctor 1 of the 6,000 hours that they’re awake each year! Pack Health works to fill in those gaps.

Here’s how it works—the service is more than just a health coach. By teaming up with an IBD coach, you can have someone texting you when you need a reminder, helping your find ways to make healthy living easier and more enjoyable, and someone who has your best interest at heart, every step of the way.

Finding Your Motivation
You’ll map out your goals for the months ahead. Where do you want to be in 3 months? 6 months? One year? Your personal IBD Health Coach will bring this goal into focus so it’s attainable and less overwhelming.

Setting Weekly Goals
It’s not always the big goals, it’s getting through the day-to-day. Your IBD Health Coach will help you stick to weekly goals through calls, texts, and emails, based on how you like to communicate. Support will be right at your fingertips.

A Network of Resources
Rather than wasting hours on the internet trying to find dietary information or drug discount cards, the IBD coach will get you what you need to succeed.

By working with an IBD Health Coach patients are more likely to take their medications, stay on top of recognizing symptoms and improving their overall health and well-being. As a chronic illness patient, myself, even though I try and manage my Crohn’s the same each day, sometimes life and being a mom gets in the way. I tend to put my needs and my care at the bottom of the totem pole. As a parent, I know I’m not alone in that. Having a Health Coach standing by ready to listen, educate and inspire me, is a reminder that I’m not in this alone.

Click here to learn more and try it for yourself.

How Sharing Your Narrative as a Patient Benefits You and Your Care Team

June 3, 2019Leave a comment

This post was sponsored by AbbVie Inc. Personal opinions and thoughts are my own.

I recently attended Digestive Disease Week (DDW) in San Diego, California as a patient advocate. The experience was much more than a conference—it opened my eyes to all the work being done on a global level to understand this disease, ease the burden on patients, and improve quality of life.

At DDW, I had the opportunity to sit down with Dr. Miguel Regueiro, Chair of the Department of Gastroenterology, Hepatology, and Nutrition and Vice Chair of the Digestive Disease and Surgery Institute at Cleveland Clinic, to discuss our respective points-of-view on clinician-patient communication. I share more about our conversation below, along with a video of part of our discussion. You can also find resources to guide your conversation with your own doctor here.

There’s something special about being a Crohn’s patient and witnessing firsthand all the research, advancement and dedication for inflammatory bowel disease (IBD). While the exact cause of Crohn’s disease is unknown, it is believed to be caused by an overreaction of the immune system. As a result, damaging, chronic inflammation can occur along the GI tract and lead to symptoms. Crohn’s isn’t contagious, and, as far as we know, it isn’t caused by anything a person has done or eaten.

During my time at DDW, Dr. Regueiro and I had a chance to discuss the importance of patients and their physicians creating an ongoing, healthy dialogue about everything the patient is going through physically, mentally, emotionally, and financially.

We talked about the importance of goal setting. In this age of personalized medicine, treatment plans are tailored uniquely to each person’s needs, which often go beyond the inflammation in our bodies or our latest symptoms.

“When I meet a patient initially, I sometimes ask ‘what are three things you want out of this visit? What are the three problems that you’ve had?’ Some of it may be related to their IBD, but a lot of it might be related to ‘I’m feeling depressed,’ or issues with sexual activity and intimacy. As a physician, and as a healthcare team, we not only want to treat your IBD, we want to treat the whole person,” said Dr. Regueiro.

One of the biggest stresses associated with IBD can be the unpredictability factor and the progressive nature of the disease. As patients, we never know what the next hour or the next day will bring. Symptoms might worsen or change altogether. Physicians want to hear about changes. Changes in our symptoms. Changes in something that may be related to our medication. And changes in our health beyond our digestive tracts that help our care teams treat us and not just our IBD. By recognizing these changes, your doctor can address them and make sure there’s not a bigger problem festering.

Crohn’s is a lifelong disease, it’s not just about thinking about tomorrow or the next few weeks, it’s really looking at the long-term. If you live with IBD, it’s important to be open about all your symptoms and meet routinely with your doctor to ensure active monitoring of your disease, regardless of symptom severity. Create a proactive treatment plan and set goals that are right for you.

The narrative you choose to share with your care team can truly shape the type of care you receive and your ability to improve your quality of life. Prepare for your next trip to the doctor by visiting CrohnsandColitis.com for tips on managing your appointments and working closely with your gastroenterologist.

Disclosure: This post was sponsored by AbbVie Inc., a biopharmaceutical company, and should not be construed to constitute medical advice. Personal opinions and thoughts are my own. I am not a medical professional and am not qualified to give medical advice. Please talk with your doctor about your individual medical situation.

lights camera crohn's

an unobstructed view