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.

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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.