Posted by Becky Woolf on October 13, 2017
I read online somewhere that the best way to describe Crohn’s disease is that it feels like slashing open your intestines with a chainsaw. I can really relate to that post. You see, I’ve had refractory Crohn’s for eight years, which means my disease doesn’t respond to anti-TNF medications, and that significantly limits my treatment options. And that leads me to my most recent Crohn’s adventure. It all started on a Thursday in late February. After trying and failing Entyvio, my doctor was running out of ideas. He recommended I go to another IBD clinic with more experience treating complex cases like mine - to see if they had any ideas about what I could try next.
My symptoms were constipation, pain, lots of fatigue and nausea. Nothing too bad. At least that’s what we thought. Looking back, I wonder if the pain really was a 10, but I was so used to it that I didn’t realize how sick I actually was.
During my visit at the new clinic, I saw two doctors. They listened to my symptoms. One asked, “have you been burping a lot?” I replied affirmative, very confused as to what that had to do with anything. Then the doctor performed an anal exam, which was totally how I had imagined my Thursday afternoon going down (that was sarcasm). He said he thought I should go see my doctor, because I had a really bad stricture.
The next day was a Friday. My doctor wanted me to come in during school hours for an emergency appointment, which ended up being fine since I went home sick anyway (during first period). To appreciate this, you must understand that I never go home sick. Even when I had to stand bent over at 100° because of excruciating pain (which was probably some major backup), I finished the day at school. Through the pain, I stayed after to go to my Improv Team’s practice. Once, I vomited all over my sweatshirt on the bus to school, but finished the day anyway. I’ve nearly fainted, needed help walking to class, etc., but I think it’s important to stay.
So, that Friday, I went in for another appointment and was treated to yet another anal exam (I was really hating anal exams at this point). I was surprised when my doctor declared he did not think I had a stricture. But he wasn’t sure what it was. So, he admitted me to the Children’s Hospital so I could get some fast testing done as an inpatient. That evening, while packing up to go, I had a bowl of cheerios. If I had known it would be my last solid meal in months, I would’ve had a massive bowl of mac ‘n cheese or something.
On Saturday my best friend came to visit me in the hospital. She was there when I was put on a liquid diet for an MRE (a medical test where I have to drink yucky, chalky stuff and lie in a tube for a while); she was there as I had to drink the dreaded barium, which she claims smells like my bathroom soap (I changed the soap); she was there when it made me vomit, and she was there when the results came back. She was there when the resident doctor told me I needed to have my entire colon removed, because I had a massive narrowing (from the fold of my descending colon to my anus) and the space between the walls was only 5 mm…for reference, the normal amount is 7 cm. After hearing this sad news, my best friend and I had a rowdy sleepover (by that I mean I fell asleep at 8:30pm).
On Sunday morning, a surgeon came in and drew an image of my colon on the whiteboard in my room. She said that I did NOT need my colon removed, but I might need emergency surgery because my cecum was about to explode. I was very quickly switched from a liquid diet to nothing by mouth. That sucked. Then my Dad- AMEN- found a therapy developed by an Israeli doctor, which combines four different antibiotics, and was reported to have saved 50% of this doctor’s patient’s colons. I immediately started that. And after three days of nothing-by-mouth, I was started on TPN. I also began Stelara. I was discharged after 11 days in the hospital with 16 medications, a yeast infection, and steroid-induced diabetes. Yay.
For the next three months, I ate almost nothing. Slowly, I was allowed some broth, scrambled eggs, mashed potatoes - very basic stuff. And then was very quickly demoted back to only broth and scrambled eggs. To this day, I cannot eat soup.
Then, May 15, 2017, I had a Diverting Loop Ileostomy. I’m currently adjusting to life with an ostomy and waiting to see if my colon will heal during this little break we’re giving it. The big question is whether the narrowing of my intestine is due to inflammation, or if it’s fibrostenotic tissue, or scar tissue. I hope it’s not the latter. Only time will tell.
Whether I keep my ostomy or not, I’m still thankful for my experience. I can appreciate the overlooked pleasantries of life. For example, eating.
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