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.