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.

IMG-4462

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.

Saving on prescription costs: Easing the financial burden of IBD

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.

Inside RX

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.

Inside RX2

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

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.

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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.

FullSizeRender (37)

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.

  1. 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.

  1. 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.

  1. Communicate when you’re in pain—don’t sugarcoat or downplay your symptoms.
    If you’re hurting, say it. IMG_7446If 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.
  2. 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.
  1. 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.

  1. 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.

  1. 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.

  1. 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.

  1. 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.

  1. Take them along to local Crohn’s and Colitis Foundation events. IMG_8059

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

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. photo (17)

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
Natalie runningIt’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. nataliepackhealth2As 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

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.

AbbVie article

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.

The patient physician dynamic: 5 tips for finding your match

Raise your hand if you’ve considered switching physicians. Raise your hand if you’ve driven more than an hour to seek care. IBDSocialCircle2While attending IBD Social Circle at Digestive Disease Week in San Diego, I listened to a panel with Dr. Neilanjan Nandi, MD, FACP and Dr. Aline Charabaty, MD about the patient and health care practitioner dynamic.

It was an enthralling discussion that opened my eyes to the medical care available to the IBD family. They talked about how physician and patient relationships should not feel like speed dating. Seek a physician who truly cares about how IBD is impacting your life, someone who wants the context behind your symptoms. Rather than a physician wearing a white coat and sitting in front of you, look for one who sits next to you and leaves the white coat off.IMG-2081

If you’re constantly feeling like your GI is being complacent with your care or that you are just a number, you may want to consider finding a physician who’s a better fit. When doing so, it will take some effort on your part. Here are some tips to make the transition a bit less stressful.

  1. Look for a GI who specializes in IBD. Not every GI is passionate about Crohn’s or ulcerative colitis, it may not be their specialty. Finding an IBD specialist will put you in the hands of a care provider who knows the ins and outs of your disease.
  2. If you’re making a road trip to attend the appointment, let the office know. Before you drive hours for an appointment, let the nurses in the practice know that this isn’t a run-of-the-mill appointment. Maybe they can allot more time.
  3. Have your records sent over before you go. Provide the new physician with your back story, so they can familiarize themselves with your patient journey before your first face-to-face.
  4. If tests will be needed, see if they can all be arranged in one day. Save yourself a trip (or two) and check with your physician to see about them getting preauthorization for any tests or procedures ahead of time. This way insurance is notified and it’s one less headache to deal with down the road.
  5. Build a rapport with the nurses in the office. Don’t be afraid to lean on nurses for support. They are often the “middleman” between you and the physician. I rely heavily on the nurses in my GI office. Nurse Penny and I are buds!
  6. BONUS TIP: See if a family member or friend can attend the appointment with you. As the patient, sometimes it can feel as though the teacher from Charlie Brown is talking while we’re sitting in an appointment. So much is being thrown at us, so much is being said—but we’re not comprehending what it means for the present and the long term. By having a loved one by your side, they can take notes—so you can focus on asking the questions you need answered. That extra set of ears and eyes works wonders.

IBDSocialCircleSwitching physicians and entrusting someone new with your well-being is not easy. Trust your gut (for once!) and advocate for care that makes you feel like you have a voice. Think about how you feel leading up to an appointment, while you’re face to face with the physician and the emotions you may experience on that drive home. If anything makes you feel less than or not heard, connect with fellow patients in your area to see who makes up their care team. Do research about IBD specialists within drivable distance and take the steps you need to feel like you have your best ally against this disease.

Healthline unveils new IBD app: What you need to know

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

I met my husband thanks to a dating site nearly six years ago. I never dreamed I would one day be able to connect with fellow IBD warriors through an app, but hey thanks to Healthline, it’s now possible! IBD_Facebook_Ads-1200x628_Real-Life_5Over the next month, I’ll be partnering with IBD Healthline. I am so excited to share my journey using the app and explain how you too can benefit from all its invaluable features.

When I was diagnosed with Crohn’s disease at age 21 in 2005, I felt incredibly isolated, alone and scared. Like anyone with chronic illness, it can be difficult to not only articulate theses stresses but find people who genuinely care and empathize. The IBD Healthline app addresses this by providing a safe space to conversate with those who live your reality. By communicating with others in the IBD community, it empowers us and is a reminder that there’s a huge network of support right at our fingertips, 24 hours a day.

My favorite functions of the app

One of my favorite parts of Healthline’s IBD app is how it connects you with one new member each day, based on your disease, age, and lifestyle interests. You can check out fellow member profiles and request to connect, too! IBD_Facebook_Ads-1200x628_Real-Life_2I don’t know about you, but the more people I know with IBD, the stronger it makes me feel as I take on the disease.

Healthline’s IBD app is a great gathering place for our community to share experiences, learn from one another and offer support. Many of us tend to sugarcoat our day-to-day experiences, here you can be honest and trust that you won’t be judged for your struggles or setbacks. It’s intuitive and easy to use, whether you’re a patient or a caregiver.

Along with the personal connections, there are medically approved wellness articles IMG_0811and podcasts shared each week on everything from diagnosis to nutrition and self-care tips. The more educated we are about our illness, the better advocates we can be for our care.

Check out the Live Chats

Another great aspect of the app is the “Live Chat” function. Each Healthline Ambassador will be hosting chats in the coming weeks. Save the date—I’ll be hosting a live chat Monday, June 3 about dating, relationships and marriage with IBD. I’m thrilled to have the opportunity to share my personal insight on this subject matter with you and lead the discussion. It’s my hope my words and patient journey will comfort you and give you hope as you navigate life with IBD.

This free app is brand new and was just launched this month. You can download it onto Apple and Android devices by searching for “IBD Healthline”. As patients we are up against so many unknowns, this app is a great constant to have as you deal with the feel-good days and the not so good days. I look forward to connecting with you all!

You can access the free IBD Healthline app here: https://go.onelink.me/LOC7/6dae5800.

My Tribute to the IBD Family: You are visible

The theme of World IBD Day (which was yesterday, May 19) was to make the invisible, visible. Here’s my tribute to my fellow IBD warriors and their caregivers.

To the newly diagnosed…

To the person going through their first procedure whether it’s a CT scan or a colonoscopy…colonoscopy

To the parent of a child battling this disease…

To the person being wheeled in for their first surgery…

To the person taking their first steps out of the hospital bed while on the road to recovery…

To the person glancing at their incision for the first time…

To the person looking in the mirror and not recognizing the reflection looking back…

To the person on a liquid diet because it’s too painful to eat actual food…

To the person on a steroid feeling unattractive, irritable and high strung…

To the woman wondering if her body is strong enough to carry a baby…IMG_3723

To the man who’s concerned about being able to be a source of strength for his family…

To the pregnant woman worried about flaring and how it will impact her unborn child…

To the person beginning a biologic or a new medication, who’s petrified of the laundry list of side effects…

To the person crying themselves to sleep because they feel alone in their struggles…

To the mom who feels like she’s waging a never-ending war against her fatigue…

To the teen wondering if they’ll be able to go to college…

To the college student embarrassed of going to the bathroom in the dorms…

_F6B4724To the person nervous to open up in a relationship and disclose they have this disease…

To the person who had to get out of a relationship or was left because the support was lacking…

To the bride or the groom worried about having disease symptoms on their wedding day…

To the person shaking with fear in the parking lot of their doctor’s office, nervous to walk in and face the music…

To the person boarding an airplane nervous about symptoms and being around germs…remedy-nsmith-stlouis-1284

To the person who’s just been told another medication has failed them…

To the person lacking a genuine support system…

To the person who feels misunderstood, frustrated, and judged…

To the person sitting on the toilet contemplating whether a flare is starting to strike…

To the person in the passenger seat being rushed to the emergency room, yet again…

To the person getting their blood drawn staring at a focal point on the wall…

To the person who is constantly approached with the latest and greatest “fix”, “cure”, or way to “heal” …

natalie mothers dayTo the person worried about passing this dreadful disease onto their children…

To the person with the bad veins dealing with their eighth IV poke…

To the person who feels lost and misses who they were prior to being diagnosed…

To the person lying in the fetal position trying to get through this moment…

To the community who feels like home to me.

I see you. I hear you. I believe in you. I’m here for you. I love you.

We’ve all been these people. We all know this is the reality of life with IBD. It’s not easy. It’s scary. It can be overwhelming. The emotional pain can oftentimes be worse than the physical pain. Living with a chronic illness, no matter what your age or circumstance is tough. There’s no sugar coating it.

At the same time, I want you to whole-heartedly believe that while this disease can rob you of joy, it can also provide you with perspective, strength, empathy, understanding, gratitude, patience, and clarity. You my friends, are far from invisible.IMG_3434

I see you. I hear you. I believe in you. I’m here for you. I love you.

Thank you for helping me to see the light on the dark days, inspiring me when I need it most, and showing me that there’s much more to life than being a patient. I hope I do the same for you, always. Use your journey. Use your story. Use your setbacks. Use all that you are, to inform, educate, and implore others to want to better understand your reality. I promise, you won’t be disappointed.

XOXO-Natalie