When pain medication adds to your IBD troubles

It was one of those moments when you’ve exhausted all options for comfort and feel the need to turn to pain medication. As an IBD mom, taking pain medication is now my last resort, because it makes me feel less present and capable of taking care of my children. Luckily, this time around my Crohn’s symptoms decided to peak on Labor Day weekend while my husband was home.

I casually took a Tylenol with Codeine, expecting for the pill to take the edge off the gnawing pain in my abdomen that had been bothering me all day. Thirty minutes went by, then an hour, then a few hours, no relief. My mind started racing as to why I was feeling this way. Was it the fact I went out the night before and had a drink with friends? Was it because I had Starbucks hours before? Was it the rice cakes I ate that sometimes cause my stomach to hurt?

84910E13-824E-4856-BF44-D3BBBD5BCC1FAs the pain persisted and my little guy snuggled me on the couch, I was losing patience with the pain that was drowning out everything around me. I wanted relief and I wanted it quickly.

So, I went in my medicine cabinet and saw I had Oxycodone left over from my c-section six months ago. I grabbed a glass of water before bed and popped the pill without thinking twice. I assumed that little white pill would help me sleep and help the pain subside.

What happened was the opposite. What happened is something that still sticks with me now. I crawled into bed next to my husband and could tell something was off. I traded in my abdominal pain for much worse. It was a nightmare of a night filled with anxiety, nausea, and dizziness. I laid awake in bed for nearly six hours. I had to keep my hand on top of my chest because I was so anxious about not being able to breathe. I felt like I was suffocating. My mouth felt so dry, yet when I would try and drink water I would almost throw up. My thoughts raced. I felt so scared. So alone. Despite Bobby being right next to me. He held my hand, he tickled my back, he did everything he could to help calm me down.

IMG_9691Sure, I couldn’t feel the abdominal pain, I couldn’t really feel much below my neck, which added to my anxiety. My body felt like Jell-O. I felt like I was living an out of body experience. I was whimpering and whining at 3 in the morning that I just wanted it to be the next day.

These are the behind-the-scenes IBD moments that people often don’t hear about. These are the difficult experiences as patients and as parents that we often keep behind closed doors. Both my kids were under the weather, I felt so guilty that if they woke up, I wouldn’t be capable to take care of them, let alone hold them. Poor Bobby had to be all three of our caretakers that night.

The morning came and I woke up at almost 9 a.m. I had been dead to the world for about five hours. Never heard my baby on the monitor. Never heard my toddler across the hall. Never heard my husband get up to take care of them. When I walked into the family room, I felt the aftereffects of my stomach pain from the day before. I felt like I was still in a cloud. My head pounded. The headache persisted until dinner time.

pharmacy-3087596_1920This is not to say pain medication is always a no-go. I’m of the mindset that those of us in the IBD community should have access to opioids. At the same time, this is more of warning for patients to be mindful that the medication you take to calm your pain, may bring about side effects that are even worse than what you are dealing with in the first place. Personally, I’ll never take oxycodone again. You live and you learn. Sometimes with IBD unfortunately it has to be the hard way.

When Crohn’s Tries to Stop you from Being Super Dad: How One IBD Dad Finds Balance

The IBD community is flooded with countless female advocates. I’ve recently been vocal about the need for more men to stand up, share their stories, and be a voice for the community. If you attend a conference or an IBD patient advocate event, 90 percent of the room is female, the same can be said for social media.

This is surprising since according to the Crohn’s and Colitis Foundation, IBD affects men and women equally. That being said, in my experience speaking with men young and old with Crohn’s and ulcerative colitis—many tend to suffer in silence, downplay their pain, or prefer to keep to themselves about their struggles. While the disease may physically manifest itself and impact men in different ways, it’s the way many feel embarrassed to share their experience, that I wish could change. Colby and Hallie 1

This week—a guest post from Colby Reade. Colby is a husband and a dad who also has Crohn’s disease. He shares insight about his struggles to find a balance between IBD and family life, while offering helpful advice for how to be a “Super Dad” despite your illness. I’ll let him take it away…

I grew up believing my dad was a superhero. There was nothing he didn’t know or couldn’t fix. He would spend hours with my brother and me teaching us how to hit a curve ball or box out a defender on the basketball court. He worked insanely hard to help provide us with a comfortable life. He showed us what it meant to be a partner in a marriage. In my eyes, he was “Super Dad.”

For as long as I can recall, I wanted to live up to that image and a little over four years ago, I got my opportunity when my wife gave birth to our daughter. Nothing is more important to me than being a solid dad and husband. Fatherhood is undoubtedly the most rewarding experience of my life, but also the hardest thing I’ve ever chosen to tackle largely because it is so important to me to be good at it. Ethels Birthday

Unfortunately, life through us a curveball in 2017. What I thought was a case of nervous stomach from a stressful stretch at work turned out to be a Crohn’s flare that lasted 10 months. Not only was I terrified about all the symptoms (digestion issues, pain, fatigue, weight loss), but I felt myself struggling to take on the most important “job” I had.

I was too tired to play or engage when I came home from work…flopping on the ottoman in our living room, trying to pry my eyes open.

I was in pain all the time and struggled to find joy in daddy-daughter games.

I was terrified to be more than five feet from a bathroom so outings to the mall, the zoo or the beach were on hold.

OrchidIt took time and some trial and error, but as I navigate my somewhat new diagnosis, my wife and I have learned how to best monitor my symptoms to try and avoid future flares and take Crohn’s on as a family. In addition to my medical care, this includes some key strategies to how we approach parenting.

Here’s 5 ways we tackle parenting with Crohn’s:

  • Explain to your kiddo what’s going on. This has to be done age-appropriately of course, but it’s important that you don’t hide from your children that you are sick. It is not a failure to admit that you have an illness. Communicate to them that you are under the weather and need their help to adjust your usual routine until you feel better. My kiddo LOVES playing nurse and taking care of her mom or me when we are sick so we can make it into a game.
  • Create activities that don’t involve a lot of energy. While the digestive problems were hard, the fatigue was the worst for me. We started a list of low-energy activities I can do if I find myself mid-flare, such as board games, playing with my daughter’s doll house, and working on crafts.
  • Communicate with your significant other and boss. ThanksgivingMy wife is amazing and understands the physical impacts of a flare, but it’s my job to share with her if I’m feeling Crohn’s-y. Similarly, I have started a dialogue with my boss, so if I flare, I don’t have to pour every ounce of limited energy I have into work and come home completely empty.
  • Find an online community. It can be tempting when you are sick to start Googling your symptoms. This can be a big mistake with IBD because everyone’s case is different and the treatment plan for one person will be greatly different from another’s. However, engaging with an online community either on Twitter, through a Facebook group or an online forum, can be a great resource to gather measured feedback and share your experience.
  • Be kind to yourself. As modern, involved dads we put ourselves under tremendous pressure to be both provider and nurturer. When our bodies are compromised, it can feel like we are failing, weak, and less than. Whether you talk with a counselor, join a support group, or meditate… or all of the above, it’s important to find ways to remind yourself that just because your body is taking on IBD, you are still Super Dad.

You can connect with Colby on Twitter and Instagram (@colbyreade).

 

IBD Travel Tips You Won’t Want to Leave Home Without

It’s a scary feeling when you’re traveling or away from home and your IBD symptoms flare. As we all know, chronic illness never takes a vacation. Oftentimes the change of scenery and schedule is the perfect storm for disease activity to peak. 

mT3tVteyRCOz2s4mbzraGAThis week–Megan Murray from Balanced Life and Travel shares her top tips for staying in your comfort zone so you can make the most out of your time away. Megan is 37-years-old and was diagnosed with Crohn’s disease in 2013. She’s originally from Oklahoma City, but now she lives in Spain with her husband. She’s passionate about travel and not allowing her disease to hold her back from exploring the world.

Drink water all day, every day

I used to experience painful gas and constipation when I traveled. I don’t like taking laxatives or stool softeners if I can avoid it, so I’ve learned that drinking plenty of water is the best way to avoid/fix constipation on the road. I always carry my stainless-steel water bottle. Single-use plastic bottles of water are convenient, but their cost adds up financially and environmentally. 

Know how to find a restroom quickly

This can be pretty easy when you are traveling in America, because you can usually duck into any store, restaurant, supermarket, museum, hotel, etc. and use the bathroom that is available. Always make sure you have your I Can’t Wait card from the Crohn’s and Colitis Foundation. I’ve only had to use mine once, but boy did it save me from an awful situation.

Outside of North America, it can get trickier depending on where you are and how high the language barrier is. If you don’t speak the language and English isn’t widely spoken in your destination, make “May I use your restroom?” the first thing you learn. Research if there is a Crohn’s and Colitis Foundation in that country and see if they have an I Can’t Wait card in the language of the country. fullsizeoutput_1690

Traveling through Asia and Europe, I’ve never had trouble stopping in at hotels. If it’s a big hotel, especially if it’s an international brand, I just confidently waltz in like I’m staying there and use the lobby bathrooms. If it’s a smaller place, front desk staff will most likely speak English, so you can politely ask to use the bathroom. I’ve never been denied.

Museum lobbies are also a good choice. The one drawback being the security line you have to go through to get to some lobbies. Also look for banks and other businesses that have lobbies. Check out my post on spending a weekend in London with a chronic illness to read about how some very friendly bank employees saved the day for me.

Research food options before you go

My favorite tool on Google Maps is marking restaurants “Want to go” before I visit a city. This helps me avoid finding myself in the middle of fast food restaurants with nowhere to get a meal that won’t trigger my symptoms. IMG_1226

I eat a vegan diet, so I find all of the places that are vegan, vegetarian, and have vegan options before I go and tag them all. In places where I don’t find as many options (usually more rural locations), I pack food that works for me. I love Oh She Glow’s Glo Bars, so I always make a batch or two, wrap them up and throw one in my bag each day. Then I know I always have a snack that will keep the hangry away and won’t make my Crohn’s hurt! Glo bars won’t work for everyone (hello, low-fiber diet I was on for two years), so brainstorm a hearty snack that is portable to take with you. 

Pace yourself

When planning your itinerary, it’s tempting to cram every last activity into your days. Resist this urge! SPq9iyQkSv2CpXItQzKRWgMake a list of everything you’re interested in and then prioritize, cutting out what you don’t have your heart set on. Trying to do it all sets you up for exhaustion, frustration, and disappointment. 

  • Consider how much energy each activity/sight will take and then begin to plan your days
    • Museums are sneakily draining because you are on your feet the whole time.
    • Balance a demanding activity with a laid-back activity on a given day
  • Think about transportation
    • There’s nothing like a 20-minute uphill walk to zap your energy. Budget for taxis. You save time and conserve energy, so they’re worth the cost.
  • Hop-on, Hop-off buses
    • They are super touristy, but they allow you to see and get around a city without the stress of navigating and/or walking to them all.
  • Take breaks
    • I always need a midday break. I either go back to my hotel to decompress and rest or, at the very least, find a cute cafe and have a cup of tea as I read. I love the Kindle app on my phone. Afterward, I’m refreshed and ready to see or do more. fullsizeoutput_f9

I firmly believe that while a diagnosis of Crohn’s or ulcerative colitis is life changing, it’s not a life sentence. I have always loved traveling, so I haven’t stopped. My travels just looks a little differently than they did before. 

“My mom has Crohn’s and I do, too”: Why Sam doesn’t allow IBD to take over her life

Motherhood provides perspective. Motherhood shapes us in a way we didn’t know possible. When you’re a mom with IBD, your past and current struggles make you look onward to the future in a different way. Meet Sam Zachrich. _ADP6012She’s a 30-year-old mom and wife from Utah, who works full-time outside the home. She’s battled Crohn’s disease since December 2011.  

Even though she was officially diagnosed a week before her wedding (imagine that!), Crohn’s is something that was a part of her life long before that. Her mom, also has the disease. This week–Sam shares her experience taking on motherhood and marriage, while juggling everything that comes along with a life of chronic illness.

Like someone with a bad knee before a rainstorm. I knew I was not feeling well and the results of my colonoscopy would reflect that. More medication and more doctors is all I heard from my GI. My husband Nate will tell you a different story. He is always my biggest supporter and remembers way more than I do after waking up from a scope. He heard “Sam things look better… your colon is healing… but there are some issues.” All I heard was “issues”. As a Crohnie, it’s easy to focus on the negative of our disease. It’s easy to forget to celebrate how far we’ve come and the milestones we’ve accomplished throughout our journey.

Growing up with a parent who has IBD

I knew my mom had Crohn’s from an early age, but I didn’t fully understand how much pain and hardship it caused her, until I was in college. I had a wonderful childhood, filled with amazing memories. I don’t remember my mom being sick very often. There were hospital visits here and there, I just always had faith that she would get better.

48397243_10213280363469781_8737081387036704768_oMy mom did an amazing job making sure our lives did not revolve around her disease. She did her best to stay healthy and support us. I want my daughter to have the same experience as I had growing up. I don’t want her to ever feel the burden of my disease. I want her to know that no matter how difficult life gets, there is always hope. My mom is the one person I can call who fully understands my struggles. To have another family member that has and is dealing with the same chronic health issues is a huge support. I am very grateful for her.

A mother’s love

My mom was with me for every scope and doctors appointment leading up to my diagnosis of Crohn’s. She was a shoulder to cry on and a listening ear because she completely understood. Feeling guilty is not something we do easily in our family. We try to stay the course and figure out next steps. I think to some degree she had guilt, but she wanted me to stay strong and knew I would be alright. She has always told me to focus on what I can change in the moment.

To this day, she reminds me: Crohn’s will always be apart of your life, it’s what you do with it that matters. 405889_2533476622399_548286302_n

I try not to focus on passing this disease to a third generation. I know that one day I might be in the doctor’s office with my daughter listening to the same talk I received December 2011. Hopefully we will never have to go there, but if we do, I know that the support and perspective that I’ll be able to provide my daughter can make or break a diagnosis.

In sickness and in health, literally

My husband, Nate, was there from the start of my Crohn’s journey. samI remember explaining to him at one point that this disease would be something I will deal with my whole life and it was okay for him to leave me. It’s really hard to put my relationship with my husband into words. When it comes to Crohn’s, the thought of all he does to support me, makes me tear up. He knew that after our wedding day he would take my mom’s place at all my appointments and be my sole caregiver. Nate never shied away from the challenge and it makes me love him more and more everyday. He is my number one and having support from him means the world to me.

Despite receiving the IBD diagnosis a week before getting married, our wedding day was amazing! I look back and don’t remember being sick (thanks to the steroids!). Throughout our lives there will be days we get to be “normal” and we try to embrace those times as a couple and as a family. Don’t allow for this disease to control all aspects of your life. Have that amazing wedding and find a spouse who loves you regardless of your illness. You deserve that and so much more!

Finding peace through support and letting go

Fast forward to this month. Following my scope, I had surgery to remove an abscess. My husband and I had planned a date night for that evening and already had a sitter. We traded our dinner and play tickets in for a night out at the hospital. This was my second surgery to remove an abscess. It doesn’t get any easier, but I have a different mindset now that I am a mom.  _ADP6466

It’s always hard to leave our daughter Kamryn. We are very blessed to have an amazing support system that we can rely on. It’s so helpful to know that when you are going through a medical procedure, the person taking care of your child loves them as much as you do.  We do not have any biological family in Utah. However, we have an amazing church family that really loves and takes care of us just as well.

My advice to fellow IBD parents is to find peace in knowing that your child will understand one day how much sacrifice you have made to fight this disease. There will come a day when they will ask you questions and you can share your experiences with them.  

I am healing well and my doctors are monitoring things to make sure my Crohn’s stays under control. I have had routine blood work since the surgery and it looks like I will be going in for an MRI this week to check on my liver. While these unexpected twists and turns in my patient journey don’t get easier, I’ve learned not to focus on what I can’t control.

The bright spot of my journey

I was blessed to be able to have a baby girl in January. After so many years of hating my body and being sick, my body finally showed me what it’s capable of. I know that my journey with Crohn’s has made me the best mom possible for my sweet Kamryn. Even though my body may be riddled with illness, it was still able to create a perfect miracle. sAM

I have learned to deal with life in a completely unorthodox way, because of my disease. I am a better mom, wife, daughter, sister, coworker, employee, and friend. Don’t get me wrong, there are days I wonder ‘God, why me, why this disease?’ But I know deep down I am stronger for it and He will see me through the tough times and setbacks. As someone who grew up with an IBD mom, it’s my hope Kamryn will someday look at me the same way I look at my mom.

 

Breastfeeding with Crohn’s: What I wish I would have known

Breastfeeding. Before I became a mom, I had no idea what a loaded word it was. So many emotions, so much controversy, so much judgement. As an IBD mom of two little ones, my journeys with my kids differed greatly. Ironically, World Breastfeeding Week wrapped up (August 1-7) and so did my breastfeeding journey with my daughter. IMG-5717 Whether you’re a chronic illness mom or not, one of the first questions you often get asked is “are you breastfeeding?” It’s such a personal choice and decision, that really isn’t anybody’s business. Yet, men and women alike act as though it’s just casual conversation.

For many of us in the IBD community, breastfeeding is complicated. We have a lot more to consider than our milk supply coming in and a proper latch. We have to weigh the pros and cons of how our biologic drug passes through the milk, whether or not to pop a pain pill or struggle through the day so we’re able to feed our babies, along with the stress and exhaustion that comes along with the postpartum period, while navigating motherhood with chronic illness. We have to worry about what’s going to happen if we’re hospitalized and unable to feed our baby, our minds race with the what-ifs, even when we’re in “remission”.

My son, Reid, will be 2.5 in September. IMG-5411Before I ever became pregnant with him and up until the moment he was born, I was adamant on feeding him formula. I personally felt there were too many gray areas with the medication I am on and didn’t want to find out down the road that I put him at risk for dangerous long-term side effects. I ended up nursing the first three days in the hospital so that he could get the colostrum. Even though I was confident in my decision at that time, I sobbed when he got his first formula bottle in the hospital, because once again my Crohn’s prevented me from feeling like a “normal” person. Each time someone questioned my decision to formula feed or assumed I was breastfeeding, it pulled at my heartstrings and made me feel a bit embarrassed and less than.

My daughter, Sophia, will be seven months this week. During her pregnancy, it was like a light switch went off. I did my research and I was determined to give breastfeeding a go. IMG-7340I learned about how breast milk would benefit her microbiome, lower her chance of one day developing IBD, improve her immune system, and that Humira was considered safe for nursing, among other remarkable benefits. Many friends and family members offered invaluable advice and support to prepare me for what was to come once she entered the world. No matter how much I thought I was ready, it was still overwhelming and emotional.

Looking back—here’s what I wish I knew as a breastfeeding mama who has Crohn’s.

Just because it’s natural, doesn’t mean it’s easy

To go from making a formula bottle with my son to pumping and syringe feeding a newborn was a bit of a shock to our family. As you can imagine—it was all new and foreign to us. The first night home was an absolute nightmare. Sophia was cluster feeding the entire night. Didn’t sleep a wink. Her latch was off. I was bleeding. She’d only nurse on the right side. Tears were falling and I didn’t know how I was ever going to breastfeed. I felt like I was letting myself and my daughter down. The IBD piece of it all made me feel the pressure to push through. IMG-0998I wanted to do all I could to protect her and felt guilt for not doing the same for my son. I remember lying in bed with her on my chest that first night, my husband sleeping, and texting a bunch of fellow breastfeeding moms for advice in the middle of the night. They all responded in minutes and comforted me. Initially, I had been told not to use my breast pump the first few weeks. I ended up using my pump the first week and it was the best decision I made. If I hadn’t done that, chances are I would have never made it through that initial week without changing my mind and formula feeding. If nursing is painful or difficult, don’t hesitate to break out the pump and relieve your engorged chest. Whether a baby is nursing or receiving breast milk in a bottle, it’s all the same at the end of the day.

Introduce the bottle early on

When you live with IBD, you rely heavily on others being able to help you when you’re stuck in the bathroom or fatigued beyond belief. Some days other people are going to need to feed your baby, whether it’s a spouse or your mom. If you wait too long to introduce a bottle, you increase the likelihood of your baby refusing a bottle, which puts added pressure on you. IMG-3793 We gave Sophia a bottle the first week home, since I needed to pump. For the past seven months she’s gone back and forth from breast to bottle beautifully. It eased up the pressure on me and helped make it easier on both of us! We still got to bond and be close, but others are able to feed her as well.

Before you take a pain pill, talk with your GI

Like many IBD moms, the fear of a postpartum flare and flaring in general weighs heavily on my heart and on my mind. I noticed symptoms start to creep up when Sophia was about two months old. I took a pain pill and reached out to my GI, only to find out I couldn’t breastfeed for the next 14 hours. At another point, I had to be put on Entocort for a week to help combat a small flare. Rather than try and be a superhero, I reached out to my GI immediately. While on the Entocort I had to pump and dump in the morning. It pained me to pour the “liquid gold” down the drain, but it’s what I needed to do to prevent a hospital visit. My kids needed mama present more than my baby needed a bottle of breast milk.

Supplementing is not failing

Whether you’re pregnant now, aspire to one day breastfeed, or if you’re in the thick of your journey, don’t make yourself feel like it’s all or nothing. For the first three months, Sophia was exclusively breastfed. Once I started introducing formula here and there, it took some of the stress off my shoulders. Was my diet providing her with the proper nutrients? Was she getting enough milk? I have my hands full with a toddler, so sitting next to a breast pump by myself with him running around isn’t all that conducive to my lifestyle. By making Sophia a flexible eater, it made breastfeeding seem like less of a struggle for me and a lot more doable for our family life.

Put your mental and emotional health first

59421BB3-A402-4678-819F-2A1751174DF6As a mom, it’s easy to beat ourselves up about how we choose to feed our babies. There is SO much background noise. Everyone has an opinion. As a mom who has formula fed and breastfed, I’ve had the opportunity to witness both sides. I’ve witnessed a shift within myself. Saying I breastfed felt and still feels like a bit of a badge of honor. Now that I’ve done it, I’m proud, because it was such a labor of love for me. Breastfeeding was blood, sweat and tears and so much effort. While traveling to San Diego I had no choice but to pump in a public bathroom at the airport, right at the sink, while a line of women stood staring at me. I had no choice. I think back to how drained and emotional I was on Sophia’s first night home and can’t believe we made it this far on our journey.

When we took our kids to the zoo last week and I mixed a formula bottle in the food court, I felt a sense of worry—that other parents would look at me and judge my decision to feed my baby this way. Even though in my heart, I know fed is best. There are so many mind games associated with it all!

In the end, if you’re struggling mentally and emotionally, it’s going to take away from the type of mom you are. Don’t allow yourself to get so caught up in the pressure that it’s detrimental to you or your family life.

Lean on fellow IBD moms

While I was pregnant and breastfeeding I found it incredibly helpful to touch base with fellow moms, specifically IBD moms who related to my journey. Do your “homework” and don’t be shy about sending private message or sending an email to ask questions to fellow parents who are patients that you see online. We are all a resource for one another. IMG-7814

In my case, breastfeeding ended up being something I’m so grateful I was able to do for nearly seven months. Unfortunately, once my period started after Sophia was six months, my supply plummeted greatly. I went from making 30-35 ounces a day, to five. Prior to that happening, we had gotten into such a comfortable, easy groove, I was planning on breastfeeding her until her first birthday. My body had different plans, and I’m fine with that. Flexible feeding brought me to this mindset. Pregnancy gave me a renewed love for my body, despite my illness, and now I can say breastfeeding did the very same.

BONUS TIP! Be proactive and set yourself up for success prior to your baby’s arrival. Order your breast pump ahead of time. Have nursing tanks and bras, hands-free bras for pumping and to sleep in, pads for your bra, nipple cream, a Haakaa for catching let down milk, and storage bags. If you’re dealing with extreme nipple pain or discomfort, alert your OB and see about getting a prescription for All-Purpose Nipple Ointment (APNO). This is mixed by a pharmacist and contains an antibiotic, an anti-inflammatory, and an anti-fungal. I used this and it worked wonders!

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

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.

IMG_1807This 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.Helen Blog

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.

fullsizeoutput_1edfRemember 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

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

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

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

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

Taking steps to be proactive 

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

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

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

Worrying less what others thought and making my needs a priority

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

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

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

 

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

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

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

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

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

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

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

D6DF8E56-4DAE-4531-A7A6-77BBAAA1E545

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

XO,

Natalie

Another one bites the dust: My latest colonoscopy tips

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

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

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

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

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

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

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

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

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

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

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

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

Drum roll please…The Results!

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

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

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

Coping with the fear of loss while living with IBD

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

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

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

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

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

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

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

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

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

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

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

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

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

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.