My thoughts on a colonoscopy pill prep as a first timer

‘Hello darkness, my old friend. I’ve come to talk with you again’. Ahh, the dreaded annual, routine, colonoscopy. I got a little spoiled because my last scope was July 2019. I decided to hold off in the thick of the pandemic out of safety concerns and did a fecal calprotectin test instead. Then, I got pregnant…so I had quite the enjoyable hiatus.

This time around, I decided to try SUTAB, a 24-pill prep + Magnesium citrate, rather than my typical Miralax-Dulcolax-Magnesium citrate. Without insurance and utilizing the patient savings card that’s online, SUTAB can be costly. I went here and printed out a coupon, I was able to get it from the CVS Pharmacy in Target for $50. While it’s more expensive than most preps, to me, it was worth the try.

Thoughts on doing a pill prep

So, this entire experience was a bit complicated for me. The night before my scope, I was miserable from the Magnesium citrate and the initial 12 pills. First off, I’ve come to learn that most GI’s do not make you take magnesium citrate on top of the typical prep. I’m just one of the lucky ones. Magnesium Citrate has always made me vomit, even if I take Zofran before. Prior to this prep, I always did the lemon flavor. I switched to the cherry flavor this time, GAME CHANGER. I had no problem getting it down…but it only stayed down for about an hour or so.

I threw up an unbelievable amount multiple times and never had a bowel movement. After not eating a solid meal for three days I was anxious and worried that I wouldn’t be cleaned out enough and that I was going through this hell for nothing. Sadly, Reid and Sophia witnessed it all go down and it broke my heart that they had to see me so sick and weak on the bathroom floor.

I relied on many members of the IBD community and medical professionals on social media to help guide me through the unknown. I took a Zofran and went to bed. I never woke to use the bathroom. I set my alarm for 3 a.m., took another Zofran, did NOT take the second 10 ounces of Magnesium citrate, and timed the remaining 12 pills every 3 minutes (rather than taking them back-to-back). I found that tip on Twitter and it made a huge difference! I decided not to take the second bottle of Magnesium citrate because in the medical instructions from the SUTAB box it says *not* to take any additional laxatives.

My scope was scheduled for 8:30 in the morning. I finished the pill prep at 4 a.m. and between then and 6:45 a.m. when we got on the road to hospital, I got completely cleaned out. I didn’t get nauseas, and everything fell into place. Now, I credit this with the fact I barely had anything in my body, which makes the prep much easier in my opinion.

If you would have asked me my thoughts on SUTAB vs. my typical go-to, Miralax + Dulcolax + Magnesium citrate the eve of the scope, I would have told you I would never do a pill prep, again. But once I took the Zofran, didn’t take the Magnesium citrate, and timed out the pills, only having to chase with pure water was amazing and very simple. All you have to do is drink 16 ounces of water with the 12 pills, and then an additional 32 ounces of water spaced out after. You can have more water if you want it.

My mom was laughing because she was watching me do multiple loads of laundry, make my son’s school lunch, pump milk for my 4-month-old, shower and get dressed…all on 4 hours of sleep, while in the middle of colonoscopy prep. As an IBD mom, I felt empowered in that moment of all I was capable of doing in the midst of what previously had been a nightmare.

Unfortunately, what is generally the “easy” part of the process—the hospital portion and the actual scope was very emotional and painful for me. My GI had ordered my usual routine labs to be drawn through my IV (to try and save me a trip) but I was so dehydrated from the prep and breastfeeding that the nurses could not get any blood. It took sticking me 8 different times. I felt like a human pin cushion. The IV was placed in a very tiny vein in my hand and the Propofol burned SO badly going in that I almost couldn’t handle it.

I kept asking for my husband Bobby to be allowed in recovery and felt like no one was listening to me. The nurse was gruff and kept poking me, even after I told her I would just go to a lab this week once I was hydrated. The blood pressure cuff even bruised my arm. I cried a lot of tears and the experience brought me back to a traumatic 2008 hospitalization for an abscess in my small intestine that involved 8 tries to get an IV.

My recommendation—do NOT allow labs to be drawn after you are done prepping for a scope. Save yourself the pain and the prodding. I overhead the nurses talking (outside the curtain) of my “room” saying they refuse to ever do this again to a patient and that we should all just go to labs to get bloodwork, rather than trying to get it done when we’re all terribly dehydrated. I had so many band-aids and gauze all over both my hands and arms, the nurses even sent me home with more gauze and band-aids in case I bled in the car. Fun times.

The best news

Luckily, the heaviness of this entire ordeal lifted a bit when my GI walked into the recovery room and said, “your small bowel and colon could not be more gorgeous. It was so pretty in there!” Best compliment you can give a gal with IBD!

She said even my anastomosis site (where my large and small intestine were reattached in 2015) …looked perfect. She explained how ulcers develop and indicate lack of blood flow. No ulcers, mucosal healing, and no biopsies needed. I feel incredibly fortunate that I have been lucky enough to hold onto my remission that came about because of my bowel resection surgery in August 2015.

I understand that “remission” is a complicated term in the IBD world. It doesn’t mean symptom-free, it doesn’t mean a cure…to me, it means I have many more days that I feel well than when I don’t. It means my Crohn’s disease doesn’t have to dictate or rule my life and that I’m able to be present for my family and for myself. It’s knowing that remission can go away in the blink of an eye. It’s happened to me before, and I know it will happen again. But for now, I’ll take a deep breath and enjoy this reprieve from the havoc I know my disease is capable of causing and continue to do all I can to stay well by staying on my biologic, keeping tabs on my lab work, and checking in with my GI whenever I feel like something may be starting to go awry. Remission is not something to be taken for granted. I often get asked what I do to “stay” in remission, I honestly don’t feel like I deserve much of the credit other than being a compliant patient and being very in-tune to how my body speaks to me through symptoms.

Moments that helped me get through

When my kids kept bringing me play food to help me feel better when they realized I couldn’t eat “real food” all week.

How my mom flew in from Chicago to help with the kids and to be an added support (like she does for every scope, procedure, and hospitalization).

When my husband, Bobby, came home late from work and rather than sitting at the kitchen table to eat, I caught him standing at the sink with his dinner plate and back turned so he wouldn’t be eating in front of me.

Knowing I was going to have a breakfast date with Bobby at our favorite spot and keeping my eye on the prize after going so many days without eating solid food.

Using my frozen breastmilk stash the day before and day-of the procedure to ease the burden of having to use energy and my body to feed Connor.

Reading all the comments on Instagram and hearing from friends and family near and far over text message and through phone calls really helped lift my spirits and conquer this as an exclusively breastfeeding mama.

Long story short—Aside from checking with your GI and getting a prescription for SUTAB, I would recommend trying the pill prep and from a patient perspective remind you to do the following:

  • Have your GI provide you with a prescription of Zofran (if you don’t have one already).
  • Take Zofran 30 minutes prior to taking the pills.
  • Set a timer on your phone and take one pill every three minutes.
  • While the pills are large, they are no bigger than a Prenatal vitamin and are doable.
  • For my self-imposed liquid diet this is how I plan it out for a Friday morning scope:
    • Last solid meal Monday evening
    • Tuesday-Wednesday full liquids
    • Thursday-Friday am clear liquids…and don’t forget my favorite tip of all…GUMMY BEARS! They are considered clear liquids, just steer clear from the red and purple ones.

IBD Motherhood Unplugged: Scopes, Scans, and Breastfeeding

The date for my next scheduled colonoscopy is on my calendar. Even though my scope is one month away, I’ve already started the mental prep of what’s to come. When you’ve had too many colonoscopies to count you know what to expect…which is both a blessing and a curse. This time around I’m exclusively breastfeeding my 3-month-old son. So, like any IBD mom may wonder, how does that correlate when you’re taking prep that cleans out your system and are put out for the procedure?

I checked in with Dr. Aline Charabaty, Assistant Clinical Director of the Division of Gastroenterology at Johns Hopkins School of Medicine, and Clinical Director of the Inflammatory Bowel Disease Center at Johns Hopkins-Sibley Memorial Hospital, as well as my own gastroenterologist (GI) so I knew what to expect and so I could pass along the information to you.

Juggling Kids and Prep

I’m already anticipating the hustle and bustle that I’ll be dealing with as I guzzle down the disgusting concoctions with my 4-year-old and 2-year-old running around as I care for our newest addition. Luckily, my mom flies in for every single colonoscopy (even before I had kids!) to offer emotional and physical support. Now, she gives me a hand with my kids, and this allows my husband, Bobby, to take me to the procedure and celebrate with me after it’s over. Highly recommend you line up childcare when prepping for a colonoscopy so you can focus on yourself and not deal with the stress of mom life on top of it.

Snuggling with my son, Reid, while I did my prep in 2019.

Dr. Charabaty understands what a challenge this can be and has fantastic advice for IBD moms on prep and procedure days:

  • Tell yourself you are doing the right thing taking care of your health, to stay well for you and for your kids.
  • Explain to the kids why mommy is a bit tired today, why she is not sharing their food and why she is going to the bathroom a lot.
  • Enlist help!! Have someone you trust, and who the kids know well, to keep them company and look after them while you are prepping the day before and on the day of the procedure. You need a responsible adult who is fully awake and alert to be with the kids and keep them safe during these days.
  • If your child is old enough to understand, have them play an active and fun role in this prep, for example reminding you to drink fluid during the day from a special cup they chose for you.
  • Hug your children often in between trips to the bathroom, to keep you going.
  • Give yourself plenty of rest after the procedure so you can be fully present to your children the next day.
  • Skip co-sleeping the first night after the procedure, as you might not wake up as usual in the night.

In the days leading up to my scope, I put myself on a self-imposed liquid diet 3-4 days ahead of time to ease the prep. It’s hard enough when I’m not trying to nourish a little person, along with myself. Anyone who has breastfed a child knows how hungry it can make you. My GI told me that despite only having liquids I would not need to supplement with formula. At the same time, she suggested I drink Ensure Clear Protein, which will not affect the prep and will help it. To combat dehydration, she reminded me to drink plenty of water up until two hours before the procedure.

“Breastfeeding women lose an average of 25 ounces of fluid a day through their milk. During the colonoscopy prep, make sure you drink plenty of fluid to keep the prep going and the milk flowing! Consider breastfeeding or pumping just before leaving for the procedure and as soon as you are recover and are awake after the procedure, to minimize discomfort of full breasts and minimize disruption in the usual breastfeeding/pumping schedule and optimize the volume of milk recovered,” explained Dr. Charabaty.

If nursing gets to be too much while I’m in the thick of my prep, I plan to tap into my freezer supply of milk so that my mom or husband can feed the baby while I’m holed up in the bathroom. By being proactive and thinking of these moments ahead of time, it’s one less thing to worry about and stress over.

Is Pump and Dumping Necessary?

Since we all know what colonoscopy prep makes us do, my initial thought was that I would need to pump and dump so my son wasn’t pooping up a storm along with me. I envisioned myself on the toilet with my pump nearby…talk about a living hell! Luckily, my GI said there’s no need to pump and dump with the prep or with the procedure since my care team uses Propofol and Dr. Charabaty agrees.

“Preps like Miralax, Golytely, Moviprep, Fleet phosphosoda, and Dulcolax, are not absorbed from the gut and do not enter the breastmilk; so, no need to pump and dump with preps, save every drop of this precious liquid! There are older recommendations to pump and dump the milk 4 hours after receiving anesthesia; however, review of the data show that most drugs used for anesthesia (midazolam, fentanyl, propofol, ketamine) do not cross into the breastmilk or if they do, the concentration for the drug in the breast milk is too low to affect the baby.”

Click here to lead the latest recommendations from the Association of Anesthetists that supports this guidance.

What about prep for MRE’s and CT scans?

“Radiological contrast agents used in CT and MRI are safe during breastfeeding, but be cautious with Technetium containing contrast that is used for nuclear medicine procedures. Some recommend pumping and dumping for 12 hours; other recommend pumping for 72 hours. Store the milk and only give it to the baby after it has been stored for 72 hours.”

The bottom line

“You can continue to breastfeed baby as usual following the colonoscopy (or endoscopy), as soon as you have recovered from anesthesia, and you are awake enough to hold the baby! Talk to the anesthesiologist before and after the procedure for advice, in case different or unusual medications were needed during the procedure. If you feel tired or sleepy, let someone else handle the feeding. Kudos for taking care of both your GI health and baby’s health!”

As an IBD mom having this intel is extremely comforting and puts my mind and heart at ease as I prepare for another colonoscopy, this time with another little one in tow.

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.