It was a Tuesday. It had barely been two weeks and I had been feeling “okay.” Not great but okay. My mom and I share a car so, in the mornings, I drive my brother and mom to school and then I go back home. That being said, this morning seemed just like every morning. I drove them to school and returned home. I sat on the couch and was eating some oatmeal. It was the best oatmeal that I had had in a really long time.
I was sitting on the couch with my dog watching tv. This was a pretty normal morning. I took my medicine and was just relaxing, but within the next hour I started feeling awful. My stomach started bloating pretty bad. It felt like it had been run over by a truck!
Then it happened…..AGAIN
This isn’t the greatest thing. I had another GI bleed. Fortunately, it wasn’t as bad as the first time. I was coherent enough that I was able to call my mom and let her know what was going on. I started trying to contact my GI doctor at WakeMed. However, his office wasn’t responding.
Now, this was a little tricky. I had the car while my mom was at school. I couldn’t drive because I was on the verge of passing out. My dad had to pick up my mom and then come home for me. While I was waiting for my parents to get home, I was upstairs trying to be still and relax, except I was watching my aunt’s dog and my grandparent’s dog. I had a total of three dogs that day and they all decided to start barking at something outside at the same time. Talk about frustrating and annoying!
About 45 minutes later my parents got home. I packed a bag and then on to the hospital. We went to WakeMed to see if we could talk to my doctor. However, with having been in the hospital twice already and having all the tests they had to offer, we decided maybe a second opinion and second set of eyes would be a good idea. So, I made my way to REX Hospital.
Longest Wait Ever…
As I registered in the ER, I looked around and noticed there was hardly anyone there. I thought this should go pretty fast. Except it didn’t happen. After about an a hour and a half I was put in an “acute” room . And then waited. And waited. And waited some more.
After almost 12 hours in this room, they decided to admit me. On Thursday, we talked with the GI doctor at REX and came to the conclusion that another Colonoscopy would be the best idea to see what was causing the bleeding. Since I had a mass near my appendix this would be the only way for them to see it. For the rest of the day, I was on a clear liquid diet. Insert sarcastic “yay!” I was so hungry. Broth, jello, and Italian ice only taste so good for so long.
That night I had a visit from my youth pastor’s wife. It was really nice. My mom, Mrs. D, and I just hung out and talked. Meanwhile, I had to drink some nasty prep. I did get out of drinking the normal prep because it made me sick.
On Friday morning, I got ready for my second colonoscopy in two months. This is definitely not something I thought would ever happen. I got in my little wheelchair and was wheeled down to some floor that did these procedures.
Before my procedure, my new doctor came in to introduce himself to my mom and me. He said he had looked at my case and was intrigued. He also said that this looked like it could be Crohn’s. This is not awesome to hear but it was, at the same time, because that meant I might finally get an answer to my health issues.
So, after my procedure, my doctor came back into the room to let my mom and me know what he found or didn’t find. Now, I remember being completely delirious. I was coming off the normal meds but then they gave me Benadryl since I was going to have another blood transfusion.
My doctor proceeded to tell us that he was not convinced I had Crohn’s. He said he had found five to six ulcers around my appendiceal mass and my colon was actively bleeding. He was ordering a blood transfusion. And then he said something I will probably remember forever.
He was putting in an emergency call to the surgeon.
This was not what I expected him to say. He said that I needed surgery and as soon as possible because it looked really bad. This of course made me nervous. However, all I could do was wait. I had to go to the PACU to get my blood transfusion because of my previous allergic reactions. After the first bag and the start of the second, I was allowed to go back up to my room to finish the rest of my transfusion there.
That night my dad came to stay with me while my mom and brother were at a Christmas concert. I was really bummed that I couldn’t be there. However, God’s plans are always better than ours. Later that night, there was a knock at the door and a guy in green scrubs came in. He introduced himself as a Colon Surgeon, and that my doctor had asked him to meet me.
So, after about an hour or so, the surgeon, my dad, and I decided that surgery would be the best option for me, although it would have to wait two weeks since I was on Prednisone. He explained that the risk of having surgery on Saturday or even Monday were greater compared to waiting two weeks. So, that’s what we did.
The next day, my doctor came in to check on me. He then proceeded to tell me that he talked about me at his dinner last night. He said that he had dinner with a doctor from Chapel Hill who invented the tests for ANCA Vasculitis. He then explained that although my tests were negative 8% of people still have vasculitis even when the tests are negative. My doctor then said I could just have my own disease and get something named after me. This was really a funny conversation.
December 21, 2015.
Probably a date I will always remember. I had a Right Hemicolectomy. My nurse that morning was so nice. She was able to get an IV in on the first try which is very rare for me! I then was put in this weird little thing that kept me warm. They said research proves that keeping the body warm before surgery allows for better healing. I thought it was hilarious.
They said my surgery went very well . My surgeon said that when he took out the bad part of my colon it looked awful. He said if he didn’t know better he would have though it was cancer. He hadn’t seen a colon that bad in a long time. He immediately brought the pathologist in to have a look. The pathologist literally said, “nope.” After taking one look at it and they decided to send it to Mayo for evaluation.
My surgeon was very certain that he got out all the bad part of my colon. I got to go home on Wednesday which was great because I was home for Christmas. I was feeling pretty good considering I just had major surgery. Two weeks later, I went to my post-op appointment. Everything was looking good so I was cleared to being able to start normal activity. My surgeon then began to explain the results from Mayo.
“You have officially stumped Mayo”
That is exactly what the surgeon said. The first few words of my report were “this is a very difficult and challenging case. . . .” Now, this isn’t exactly what I had wanted to hear. I was supposed to get a diagnosis from this. However, the doctors did find one thing: vasculitis. Some of the tissue that were taken out had medium sized blood vessels that were inflamed. This was great news in some sense because we finally had a lead to something. With that being said, my doctor made a referral to the rheumatologist out at UNC.
So, I waited. Waited for another appointment with another specialist. The next day my lung doctor called me very excited to share with me what the surgeon had just told me the day before. I actually had an appointment with her in the next couple of weeks to check on the masses in my lung. Meanwhile, she had talked to the vascular doctors at UNC, and they wanted to meet me. So, there we have another referral to another specialist.
Thankfully, the masses in my lung had shrunk significantly. I only had “residue” of the one big one. So, no more Prednisone! YAY!!! Within the next couple of days, the Nephrology team at UNC called me to set up an appointment. The earliest they could get me in was March 10, 2016. This is a date I will never forget. I’ll tell you why later.