I did not expect to step foot back into the emergency department so soon after my discharge. This time I felt less desperate and more annoyed. What could possibly be going on now? I expected to be waiting for several hours in the lobby before seeing a doctor, but to my surprise it only took a couple.
This doctor had two theories about what was going on. During my very recent hospitalization, the IV line was placed in my left arm, so it could have caused some complications.
- I could have developed an infection and would need a course of antibiotics.
- I had possibly developed a blood clot and would need to be re-admitted.
An ultrasound confirmed the latter and I broke.
As if being away from my children for several days for one thing weren’t enough, now I had a second thing to take me away from my family. During this hospital stay the clot was closely monitored and I was given blood thinners to help the clot resolve. After several more days, I was sent home with blood thinning injections I had to give myself in the stomach for about a week.
The month of July turned out to be more than I had bargained for. I spent the rest of it not even thinking about what I had just been through, and tried to enjoy as much of it as I was able until my follow-up appointment with Dr. A in August.
I left my follow-up appointment with more questions than when we began.
At this appointment, Dr. A. told me 2 things.
- He believed that I did not have Crohn’s Disease because he did not see any ulcerations in my large intestine (his words).
- He did not know exactly what I had yet because he didn’t see much amiss.
He also asked how I had been feeling since my hospital stay. With all sincerity I told him I had been feeling well. I had. My stomach felt so much less bloated and my fevers went away. I was a tad more careful about what I would eat, but otherwise I was convinced that the prednisone had done its job.
When Dr. A palpitated my lower right abdomen I recoiled in pain as he nodded knowingly. This wasn’t something prednisone would fix. He proceeded to order more bloodwork and more scans.
The following two months were marked by specialized blood draws and new scans. It was October by the time I was scheduled for a small bowel series. This test involved me drinking two large bottles of a chaIky white liquid called barium, and having a series of x-rays taken as it worked its way through my gut. I was informed that this scan would highlight all areas of my digestive tract- including the very end of my small intestine where both the endoscopy and colonoscopy could not reach.
I brought a book with me and hung out for a few hours laying on an x-ray table. The technicians would intermittently interrupt my reading to take a new scan until they had one they were satisfied with. I remember when they finally got “the one”.
They didn’t show it to me because they wanted to get the doctor on the schedule for that day. A polite, yet serious, dark skinned man entered the room while I was still laying under the massive machine. He greeted me and introduced himself, then proceeded to quickly turn a screen toward me. It was a real-time image of my insides, and though I was no x-ray technician, I could see the problem.
“This right here is all normal, you see?” I saw the thick dark black winding tube of my small intestine. “But this is a stricture” He pointed to a narrow passageway where the black was barely passing through, “and this is ALL inflammation.” A massive area surrounding the stricture that was bright white on the screen appeared to be pushing all the rest of my normal and healthy-black-tube-intestines away. “You have Crohn’s Disease.” he declared.
I didn’t really believe him. No. Dr. A told me it was not Crohn’s. This doctor assured me that even though he was no GI, he had seen countless scans of people with Crohn’s, and that this was a classic presentation of the disease: excessive inflammation in the ileocecal junction. This is precisely where the large intestine connects to the small intestine, and the exact area where the colonoscopy and endoscopy I had back in the summer failed to reach. This doctor emphatically assured me this was Crohn’s, and that Dr. A would finalize that diagnosis at my follow-up appointment.
Leaving the hospital was a blur. Crohn’s? So, like, incurable disease then? Live with for the rest of my life type disease? I held out hope. I had to. I shared this news with my husband, and we both held out hope. I hadn’t expected such a final answer so suddenly. Even though the entire process of finding an answer had taken three long months, I thought I’d at least have until my follow-up appointment.