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. 
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.
- GUMMY BEARS!!
Boys 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.
- 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.
- 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.
Look 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!
- 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.
My 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!)
- 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.
- 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.
In 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.
- 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.
It’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.
Rather 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.
I 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.
As 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.
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.
If you’re struggling, tell them. The more you keep your mask on and your wall up, the more your partner will think you have everything under control and that your IBD isn’t much of a “big deal” in your life.
While attending IBD Social Circle at Digestive Disease Week in San Diego, I listened to a panel with Dr. Neilanjan Nandi, MD, FACP and Dr. Aline Charabaty, MD about the patient and health care practitioner dynamic.
Switching physicians and entrusting someone new with your well-being is not easy. Trust your gut (for once!) and advocate for care that makes you feel like you have a voice. Think about how you feel leading up to an appointment, while you’re face to face with the physician and the emotions you may experience on that drive home. If anything makes you feel less than or not heard, connect with fellow patients in your area to see who makes up their care team. Do research about IBD specialists within drivable distance and take the steps you need to feel like you have your best ally against this disease.
Over the next month, I’ll be partnering with IBD Healthline. I am so excited to share my journey using the app and explain how you too can benefit from all its invaluable features.
I don’t know about you, but the more people I know with IBD, the stronger it makes me feel as I take on the disease.
and podcasts shared each week on everything from diagnosis to nutrition and self-care tips. The more educated we are about our illness, the better advocates we can be for our care.
As a mom of a 2-year-old and an almost 4 month old, I’m in the thick of motherhood right now. While it’s an amazing season of life, it definitely has its challenges. A toddler, a baby, and a chronic illness. Ah, I’m exhausted just reading that myself! While it’s far from easy—I’ve found some ways to help embrace the ups and downs and everything in between.
No one wants to be hospitalized or deal with pain. Give yourself the best chance for having feel good days and make your disease management a priority. If you feel symptoms presenting and you’re concerned, alert your GI immediately. Be proactive, nip each flare in the bud as best you can.
Yes, I know. Self care. We hear it all the time. It’s something that’s constantly talked about, that seems unattainable. But try and do something each day for yourself, whether it’s taking a shower, eating a meal sitting down, going for a walk outdoors with your little one and keeping your phone on silent, reading a book before bed, you name it. Try and find the moments in your day when you can unplug and relax. Practice yoga and meditate during nap time instead of doing the dishes or laundry. You owe it to yourself!
You were given this role and this family because you were meant to have it and you were destined to live this life.
Find the people who lift you up. Trust in the bonds you create with those who are there for you because they want to be out of the goodness in their heart, not as an obligation. Hold on closely to the relationships that spark joy and don’t extinguish your flame. Lean on those who are willing to give you their hand to lift you up, even when you don’t ask for it.
Meet Emily. This past February she received her chronic illness diagnosis. Even though she’s brand new to IBD life, she’s taking all the pain and all the setbacks in stride.
Her mom was able to reach out to fellow parents on Facebook about a pen pal program.
From a parenting perspective, the pen pal group has introduced Michelle to other mamas going through the same fears and experiences. The connections have brought her peace of mind as she navigates these new waters with her daughter.
making new friends? Friends who understand and continually cheer you on, no matter how far they are. My hope is that Emily will make life long connections and that these letters will serve as a constant reminder that she is never alone.”
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