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?
As 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.
Sure, 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.
This 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.
This week–
Make 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. 
She’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. 
My 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.
I 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.
This week a guest post from 31-year-old Louise Helen Hunt from the United Kingdom. She was diagnosed with Crohn’s in 2011 and has undergone four surgeries in the last three years. Louise opens up about her struggles with mental health, while living with IBD and offers incredible perspective and words of wisdom that everyone in our community should be mindful of. I’ll let her take it away…
Remember that feeling better takes time, and that your mood will likely improve gradually, not immediately.
She’s a 38-year-old wife and mom who juggles two autoimmune diseases. She also has Hashimoto’s disease. Since she started on Remicade in 2018 following her IBD diagnosis, she’s experienced the difficulty of warding off illness while being an elementary school teacher and a mom to a young child.
Dealing with the symptoms of IBD was more than enough–how on Earth would I be able to handle that plus avoid picking up viruses at school and in public?
I really needed to stop caring about what others think and prioritize my health. One of the most surprising things to me was that people really don’t understand what immunosuppression means. Some people think I’m just a paranoid germaphobe even after I’ve explained that I’m immunosuppressed. They don’t understand that a simple cold for them, can mean days of sick leave for me due to a secondary infection. Or a fun day swimming in the bay can mean a bacterial infection for me that lasts for weeks and causes symptoms similar to a bad flare.
Somehow my body knows when we have something fun planned and chooses those times to conk out on me. When I’m lying on the couch at home feeling sorry for myself while my husband and son are at a friend’s New Year’s Eve party or Memorial Day BBQ (both events I missed this year), I try to remind myself that Remicade is what allows me to lead a relatively normal life and be able to do things like go sledding with my son on a snow day and take him Trick or Treating. I couldn’t do those things when I was in a bad flare before treatment and definitely can appreciate them more now. I just make sure shoes come off and hands are washed right when we get home.
I chose to blog and become a patient advocate for several reasons. I was tired of feeling isolated. I wanted to be a voice for the newly diagnosed, as well as the veteran patient. And, as a journalist, I’ve always had a love for the written word. For me—expressing myself through writing comes a lot easier than saying the words out loud.
In that time, I’ve shared 171 new articles (because some weeks I post on Mondays AND Wednesdays). Over the last three years, more than 105,000 people from around the world have checked out Lights, Camera, Crohn’s. Could the articles be organized better? Yes. Could the design be snazzier? Yes. But, my focus as an IBD blogger and advocate is to give you the nitty gritty. I’d rather spend my time and energy on content vs. design.
It feels like a fiery pain inside my rib cage that travels all the way down my stomach. The gnawing makes me feel raw internally and externally. I put my glasses on and as I’m standing up and rocking my daughter in her nursery, I try to think of her warm little body as a heating pad.
The fact that so many people without IBD are under the assumption that our pain and symptoms are self- imposed upsets me. We already beat ourselves up mentally as it is. My husband and I took our son for ice cream last night, so immediately I wonder if all of my pain is a result of the choice to have ice cream with my 2-year-old.
To the person nervous to open up in a relationship and disclose they have this disease…
To the person worried about passing this dreadful disease onto their children…
Now, nearly 14 years later—her and I have come a LONG way. She’s on Remicade. I’m on Humira. We are both mothers. We are both wives. Alisa didn’t allow her disease to stop her from following her personal or professional dreams. In 2013, she left corporate America and founded 
I multi-task everything, stay on top of my biologic infusions, rest when possible and, plan my diet loosely around a mix of SCD and low gluten eating. Getting help is difficult, but I feel lucky to have a supportive husband and local family network. My travel schedule wears me down– but thankfully most of my disease symptoms are well controlled.
Babywearing helps me effectively multi-task and meet my all children’s needs at the same time. It also helps address postpartum depression, by syncing mother and baby, and raising oxytocin levels. I believe babywearing is a necessity that should be taught to every single expecting parent and caregiver!
As a bonus, a variety of baby carriers can be adjusted to accommodate an ostomy or j-pouch.
It’s not easy to be in constant battle with your body. It’s a challenge to feel pain often. It’s exhausting to always have a worry and a wonder in the back of your mind about how you’re going to navigate and overcome the next hurdle or setback thrown your way. This is why self-love is so important.
Since being diagnosed, this body of mine has still served me well. I managed to work full-time and live out my dream of working in television for the first ten years I had Crohn’s. I trained for and ran in 5ks, 10ks, 15ks and a half-marathon. I felt completely healthy and on top of the world on my wedding day (didn’t have one bathroom break!). My body was a safe haven for my children throughout pregnancy and allowed me to bring a healthy son and daughter into this world.
It’s when I felt invincible if only for a moment, whether it was crossing the finish line or holding my babies on my chest for the first time. It’s the victories along the way that help me push through on the difficult days and through the flares. Because while those times push me to the brink of breaking, I tell myself there’s only one option—and that’s to bounce back.
Pat yourself on the back for all the steps you’ve taken to rise up. Smile through the tears with the confidence in knowing you will get through this—one day, sometimes one hour at a time.
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