After being discharged from the hospital, I was still being fed intravenously, but was allowed to have two things by mouth: Boost nutritional drinks and white bread. Literally… Boost nutritional drinks and white bread. I downed loaves of bread like it was my job. To this day, I could happily eat an entire loaf of white bread in probably (okay, definitely) one sitting. The Boost shakes, let’s just say I’ll happily leave those in my past.

Additionally, my parents were instructed to keep me on a strict medication and IV-nutrition schedule, which included overnight shifts, and they had to administer the medications and food via my PICC-line. They’d been taught how to do it all by the hospital staff, but it was still nerve-wracking because we had to be very careful to avoid infections. My PICC-line threaded to a vein near my heart, so any infection in the line would’ve been life-threatening. We had to make sure it was super well maintained and clean at all times. I wore a cover (a sock with the end cut off…. not sure why a better solution didn’t exist) over it. When I wanted to shower, my mom had to string a whole plastic cover over it and tape it down on my arm. Pools were definitely off limits.

Amidst this rigorous schedule, within a few days we had to leave to pick up my sister, Rachael, from her dance intensive in NYC. Everyone was exhausted. Luckily, we were able to stay at my grandparents’ house about an hour and a half outside of the city, and just drove into the city for Rachael’s performance and move-out.

On 7/31, back at home, I had the ultrasound, which was meant to assess how the drained abdominal abscess was healing. It showed no active abscess (great!).

August 5th through 17th, I was scheduled to attend “band camp” for my high school dance team. These were 2 weeks of 8am-5pm days, full of intense physical activity in which we learned all the routines for our half-time show and parades. We were required to be present for all of it in order to be on the team, but I luckily had the most understanding and compassionate coach who let me sit out of anything I wasn’t feeling up to. Remember, I was allowed to do physical activity again since I never actually had mono, but I had also just been gravely ill for over a month. I was extremely weak and it absolutely showed.

I got lucky having the most supportive teammates, though, too. Lots of high schoolers can be nasty, judgemental people, but I never felt judged or ridiculed by any of them for what I was self-conscious about at the time: being sickly-skinny and crazy weak, wearing a sock on my arm, only eating bread and Boost shakes, and needing special accommodations. I’m not sure what they were told about my illness, but they were always positive and never intrusive.

Unsurprisingly, everyone understood when I had to miss half a day of band camp on the 14th to have my MRE done. It didn’t quite go as planned, though. Halfway through, the radiologists needed to use my PICC-line to administer IV contrast. Unfortunately, they didn’t notice that the IV attached to my PICC-line was wrapped around the IV machine, so when they started rolling me back into the tube, the PICC-line started coming out. I shouted at them to stop and was left with a half-removed line. 

I had to wait while they got a hold of my doctor. The PICC-line was inserted under general anesthesia, so it wasn’t trivial to just re-insert it; I would have to be put under to do so. Ultimately, my doctor decided that it could be removed completely since I had a colonoscopy scheduled for the following week. If I needed it re-inserted, it could be done while I was under anesthesia for that. This did mean that I would have to up my Boost shake consumption (definitely not my ideal situation) in the meantime since I wouldn’t be getting IV nutrition. I also had to start taking all my medications orally and/or via injections (another thing my parents had to learn how to administer).

After all this chaos, I still went back to band camp, and the MRE results came back a few days later. It showed 12 cm of active inflammation in the ileum (bad) and no abscess (good).

The last day of band camp, 8/17, was “Kennywood Day”, in which we spent the day at Kennywood and marched in their parade in the evening… But I didn’t make it to the parade. A little while beforehand, I came down with heat stroke, dehydration, or something up that alley and ended up vomiting and almost passing out, so my dad had to come pick me up. Not my shining moment, but everything going on had just been depleting me.

The 20th was colonoscopy/endoscopy bowel prep day. If you’ve never had to do bowel prep, consider yourself lucky. For the Average Joe, it’s recommended to get a colonoscopy every 5-10 years starting in your 40s. For Crohn’s patients, the recommendation is every 1-2 years, so I likely can no longer count on two hands the number of scopes I’ve had. It really is true what they say, though – the bowel prep is much worse than the actual procedure.

The prep itself has changed slightly over the years, and each hospital sometimes does it differently. For the sake of this story, I’ll tell you what I had to do this time, and in later blogs I’ll note if the prep changed significantly. 

I was restricted to clear liquids for the entire bowel prep day (this aspect has never changed). Clear liquids include almost any liquid you can see through (water, juices without pulp, lemonade, broths, etc.), hard candy, popsicles, Jell-O; you have to avoid all solid foods, anything red (during the scope, this can be mistaken as blood in your digestive tract), opaque liquids like milk, and even applesauce. 

If we’re looking at the silver lining here, technically the clear liquid diet offered some things I couldn’t normally have back then, when I was on the ‘bread and Boost’ diet.

Sometime in the morning – I can’t remember the specific time – I had to take 4 Dulcalax laxative tablets and mix 238g of Miralax laxative powder with 64oz of Gatorade (and I hate Gatorade). II had to drink an 8oz portion of that mixture, plus 8oz of water, each hour for the next 8 hours.

To put this in perspective:

    14 doses of laxatives (238g of Miralax)

+  2 doses of laxatives (4 Dulcalax tablets)

= 16 doses of laxatives

…. in one day.

If you aren’t peeing out of your butt by the end of it (or more likely after the first drink), you’re doing it wrong.

Once I got through all of the drinks, I could have clear liquids up until midnight, and then I was on an NPO (‘nothing by mouth’, AKA no food or drink at all) diet until after the procedures. Luckily, mine were first thing in the morning, so I got them over with and got to eat earlier in the day. One of the most brutal things is having a late procedure or having your procedure pushed back, because whether yours is at 7am or 4pm, you still won’t be allowed to eat or drink anything. And that’s a rough difference.

Anyways, the colonoscopy and endoscopy both went fine, and the results supported all the other tests I’d had. They showed a narrowing and blockage of the ileum (the last part of the small intestine), so much so that they couldn’t even pass the camera through. Problems in the ileum are very common in patients with Crohn’s Disease, and this was the final nail in the coffin for my diagnosis. We now knew that I would need to have surgery to remove the blocked part of my intestine and ongoing treatment for Crohn’s Disease.

*This post is not sponsored by Boost Nutritional Drinks.*