Crohn's: First Few Weeks Home
Trigger Warning
This post talks about weight, medical procedures and nutrition. If these topics are triggering for you, then this post is not right for you and I’ll see you for the next one!
Disclaimer
I would also like to take this opportunity to express that I am not a doctor. This post is recounting my experiences with Crohn’s and should not be taken as medical advice. Always seek proper medical advice from a licensed doctor.
Hello fellow readers and welcome to the next installment of my Crohn’s journey. If you haven’t read my first post, ‘Crohn’s: Road to Diagnosis’, you can do so here. I highly recommend reading it before reading this post so you’re up to speed.
Recap
To recap, I came home from a week’s stay in the hospital with a new gastroenterologist (GI doctor for short), a new diet (low-residue), and a fresh diagnosis of Crohn’s disease. I was sore, on the max dosage of oral steroids that my GI doctor would allow, and jonesing for a McDonald’s sausage and egg breakfast sandwich (unfortunately, this was not on the approved food list).
Coming Home
I was discharged in the evening, had dinner at home (sausage casserole without the sausage casing) and promptly threw it up, mostly undigested. Sausage is an ‘iffy’ food with a low-residue diet (it’s OK without casing, but not OK with. Fattier sausage is less tolerated than leaner sausage). I was home for less than an hour and already I learned a harsh lesson about pushing my new boundaries. This was my reality check that I’m not out of the woods yet and the next few weeks weren’t going to be easy.
I spent the following weeks hobbling around the house. At this point my weight was hovering around 100 lbs (I’m 5’6” and normally weigh around 120-125lbs). I had little bursts of energy throughout each day, but otherwise I was confined to laying in bed and sitting. I had varying levels of pain and I was experiencing nausea every day just before dinner which signaled the likelihood of keeping my food down was 50/50.
Saving Grace
The only thing that seemed to calm my stomach/intestines at that point was broth. I was having a few cups a day, especially one before bed. After I ate, I would have a cup of broth a few hours later to help with the stomach pain. There is anecdotal evidence that bone broth in particular is helpful during a Crohn’s flare, however, I can’t attest to that since I had the regular broth that you would buy at the grocery store. This is because I had vegetable broth everyday in the hospital with every meal, so I knew that was a safe food for me to eat and I didn’t want to deviate from that.
I also tried to structure my meals similarly to the ones that I had in the hospital because again, I knew these were safe foods for me. This is a great starting point because, at the very least, there is a rotation of 4-5 meals that you know aren’t going to cause a lot of discomfort before trying other meals.
Phone Calls
A week after I came home, the phone calls started coming in. I am a stereotypical millennial and don’t like phone calls (especially when booking appointments) so I nearly jumped out of my skin every time I got an unexpected call from a medical company I didn’t know. Within a few days I had a nurse case manager, a Remicade coordinator, and a registered dietician. Along with my GI doctor and family doctor, these healthcare workers are my Crohn’s tribe. Collectively, they are my lifeline for getting my appointments scheduled on time, dealing with insurance (since Remicade is NOT covered under OHIP), deciding when it’s time to go to the ER, and making sure I’m getting the proper nutrition to help my body heal.
I am eternally grateful that I have these resources available to me and, in a later post, I will be going into specifics about the companies I use as well as public programs (more specific to Canada) that are available.
Next Steps
With my new care team, the next step of my treatment was underway. I was to start my biologic infusions in two weeks. This was my first time getting biologic infusions so I was scheduled for “ramp-up” or “induction” infusions. I would be given a 5 mg/kg Remicade infusion during week 0,2 and 6 and then once every 8 weeks for maintenance (for presumably the rest of my life). I would also be getting blood work done around the third infusion to see if Remicade was working.
A Note on Remicade
My GI doctor recommended Remicade as the best biologic for me because of the severity and complexity of my Crohn’s and also because he had the best results with Remicade with his other patients. However, like with all drug treatments, everyone is different and Remicade is not suited for everyone so please talk to your doctor if you’re considering Remicade or have any questions.
In the next installment of this series, I’ll take you through what it was like to get my first infusion and the aftermath (spoiler alert: it went very wrong!).
