Making the decision to go on remicade was a difficult one. It's a complicated situation, being pregnant (surprise!) and really, really sick. There aren't a lot of good options for someone like me. I'm sharing my experience (and joining a remicade + pregnant mama study) in hopes that my story might make someone else's decision just a little bit easier.
When I left the hospital in April of this year, I made the decision to defer remicade treatment in order to pursue more natural ways of managing my illness. After all, I had been able to more or less keep my colitis in remission for 7 years through careful diet and asacol (another, less potent colitis drug). We thought it was worth a try before committing to a lifetime of infusions.
Then, God surprised us with a third baby. Change of plans. Within a few weeks of finding I was pregnant, I went from feeling really quite good to totally flaring. We waited on additional medication throughout the first trimester to avoid exposing my developing baby to unnecessary chemicals. It was a really rough 9-10 weeks. I felt AWFUL.
For my colon to stay in its sick state is pretty much the worst thing for me and for the baby. Going to the bathroom eight or nine times a day is super inconvenient for a mama of two. Losing an alarming amount of blood and not being able to absorb nutrients is painful to me and harmful to my baby. My gastroenterologist explained it like this:
No further treatment (sticking with autoimmune protocol and diet, naturopathic supplements and asacol) = broken, diseased colon = feeling awful PLUS possible miscarriage, preterm birth, small for gestational age infants and complications in labor and delivery (high risk to baby)
Steroid/prednisone treatment = improved physical symptoms, but with not-so-fun side effects = healthier colon but increased risk of steroid dependency and possible adrenal issues in my baby, increased risk of gestational diabetes and having a big baby (medium risk to baby)
Remicade treatment = improved physical symptoms, possible side effects = lowest risk to baby during pregnancy, but crosses placenta during 2nd and 3rd trimester and shows in cord blood and remains in system of baby for 6 months. (low risk to baby, as far as the studies go, but the studies don't go far. Babies born to moms who used remicade statistically have no increased risk of infection but must still be monitored closely.)
Today was my first infusion. I didn't have a lot of time to process it all. Our lives have been crazy. I've felt awful. I honestly just want so badly for remicade to work for me, to be the "miracle drug" that it has been for lots of other folks with this disease. Today I was pretty emotional and a little nervous when I got to the UCSF infusion center.
There's my pump, infusing my blood with 400 mg of rat protein. Yep, rat protein. Look it up. I used a Halloween font because it sounds pretty creepy. But if it works, I'll take it!
The infusion starts with a saline rinse, followed by hydrocortisone to help prevent/lessen any possible side effects (flu-like symptoms, rashes, vomiting, tightness in chest). Then it is a slow drip of remicade for a half an hour, a little faster for half hour, faster for another hour, then all the way open for the last half hour. All in all, the process start to finish takes 4 hours.
No side effects for me! PRAISE GOD! This was a HUGE answer to prayer. I felt totally fine the entire time. No issues whatsoever. I sat in my chair, caught up on all my favorite blogs, instagrammed, face booked, and chatted with my hubby.
Mamas don't get to sit with their feet up for four hours very often. It wasn't really all that bad. :) Ben picked me up some vietnamese food for lunch. I listened to Jesus Culture on Pandora. I sipped my ice water.
And honestly, for the first time in weeks, I felt a little glimmer of hope:
Maybe I will get better.
It's possible that this drug will send my disease into permanent remission.
Maybe I'll get my life back.
And my baby will be protected from the complications of severe disease.
And my kids will get their mom back.
And this will all be a thing of the past.
HOPE with me.
Next treatment in 2 weeks.