Posted by Becky Woolf on August 01, 2018
Last month, I had the most entertaining ileoscopy in history (which is saying a lot since I was sedated for most of it). Let me give you the background on this:
I was diagnosed with severe Crohn’s disease in 2009 (I was seven). Since then, I’ve been on tons of different treatments from the dreaded Prednisone to Enteral Nutrition. I also had a diverting ileostomy surgery in May 2017 due to a bad narrowing, two strictures, and an “inflated” cecum valve. I had the option to get my ileostomy reversed this summer, but I chose not to for multiple reasons. Mainly, I didn’t feel like getting another surgery. I didn’t want to risk my Crohn’s coming back during junior year of high school (which is rumored to be the hardest academic year ever, unless you are in med or law school), and I didn’t want to spend another summer recovering from surgery.
After making the decision not to have surgery, I made plans to have an awesome summer! I’m going to Mexico alone and staying with two host families for a total of 2.5 weeks. Then, I’m going to a learning seminar in D.C. with a bunch of high school students from around the country to do a program on Political Action and Public Policy. Then, I’m going to visit my uncles. I think this new agenda is way better than getting another surgery.
So, I’m going about my life just fine until I suddenly started getting this horrendous pain near my stoma. I’ve lived with IBD for almost a decade, so pain is normal for me, but jeez this was like a 9 out of 10 on MY pain scale. It felt like an obstruction, except things were coming out fine (TMI, I know).
Being a typical stubborn teenager with IBD, I decided to wait it out.
BAD IDEA!
After three weeks, I realized this wasn’t going away. I made an appointment with my surgeon. She tried to stick a catheter up my stoma (ow, ow, ow!) but couldn’t because she encountered a blockage. So, I had a CAT scan and drank some delicious iodine, only to find that I had an 8cm long narrowing of my small intestine.
At that moment, I was just thinking: I’m still going to Mexico, right?
After finding the narrowing, I was scheduled for an ileoscopy so my GI could scope it out (you all are the only group of people I can make medical puns with so please laugh). But a few days after the CAT scan, I actually felt fine. No pain at all. I say this to my dad (who is a Family Physician) and to my GI, but they decide it’s important to do the ileoscopy just the same. I feel fine, and somehow, I just know that my intestines look the way I feel for once.
Flash forward to June 27, I’m wearing my hospital gown, sitting on the bed, and the nurse is asking me medical questions. Suddenly, the curtain of the waiting area next to us opens to reveal a family friend.
This man, who I’ll call Mr. James for his privacy, is a teacher at my synagogue, and I’ve known him for seven years. Small world! He was at the Gastroenterology Lab with his mother (she turned out to be okay).
After my procedure, I wake up groggy, of course. I listen and try to get my bearings when I hear Mr. James’s voice. Lo and behold, he is with his mom in the recovery room right next to mine!
My dad comes over, and I, heavily drugged still, yell, “Daddy, Dr. James is right next to us!” Mr. James is not a doctor. I don’t know why my drugged mind thought he was, but for the next couple minutes, I’m yelling about how “Dr. James is next to us!” At one point, Mr. James pokes his head around to say hi, and I’ve recovered enough by then to apologize for everything I’ve said (some of which I don’t remember).
Anyhow, after Mr. James left, I start examining my ostomy, only to discover that whoever changed my bag didn’t close it. After hastily snapping my ostomy bag shut, I ask to see the ileoscopy report. My dad points out that I won’t be able to understand it, but I look at it anyway. I couldn’t read it. I saw the words, but I just couldn’t process them. My dad explained that the report showed...nothing. No Crohn’s at all.
Hooray!
So, what’s the lesson here?
A patient’s intuition matters! I’m certainly not implying that everyone needs to cancel procedures simply because someone says, “I feel fine”! But, patients live with Crohn’s 365 days a year and they know their bodies better than anyone else, so at the very least let’s acknowledge that their intuition is a legitimate thing. And let’s be sure to include these important perspectives in our conversations about treatments and procedures.
It’s not even about the $300 my family would have saved if we decided against this procedure; it’s about knowing people believe what I’m saying about my body.
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