This is the story of how I got diagnosed.
Once upon a time, the day after Thanksgivng, my mother took me to see the second Hunger Games movie. Sitting in the cushy theatre I began to experience a strange pressure on my butt. I shifted in my seat but no matter how I turned the pressure remained. I figured I ate too much, and I did the obvious thing and told no one.
The next day the pressure was still there. I packed my clothes to head back to school in Austin. I ate lunch. “My butt hurts,” I casually told my mom in the car. We went shopping and picked out Christmas lights. I pouted lightly. Life continued.
Back at school I had finals to contend with. I was studying day and night, spending far too much time at the library and trying to learn the entire French language. The pain in my bottom increased day by day and I steadily ignored it. After my final French class I found myself stalled on the stairs, unable to walk down or back up because the pressure was so overwhelming. That should have been my first clue. That would have been the time to go and see a medical professional. Instead, I googled it. I decided that I had hemorrhoids and bought an over-the-counter medication that you were supposed to insert straight into your rectum. It was wildly painful. Clue number two. I threw the meds out and went back to the library.
The darkest moment came late in the night while my roommate was out. I did something that I truly recommend that no one ever do: I decided to peek at my butthole. The best way to accomplish this is to bend over in front of a mirror, drop your head between your legs, and pull your cheeks apart. Don’t do this. I’m serious. There is no situation in which it will be worth it. For me, I found several huge lumps that I would later learn are called abscesses. It was scary and terrible and I obviously cried a lot. Really you guys, I can’t stress this enough, there’s a reason human anatomy won’t allow a person to look at their own butt. Protect yourselves. Don’t look.
In my panicked stupor I placed a call to my friend Nathan. I was distraught. My pain suddenly felt so much more unbearable now that I knew what it looked like. When he answered the phone I dove right in and unleashed a few heavy sobs. What do you say in this situation? “I looked at my butthole,” I told him. “Oh, okay,” he said very gently. It is imperative to have good friends.
By the time finals were over and I was headed home for Christmas I had instilled a deep and beautiful sense of denial in my heart about my “hemorrhoids.” Surely they would go away! Nothing to worry about! Except for the fact that in addition to my pain growing worse I was also hitting a low but persistent fever each evening at 5’oclock. This continued for a week. My mother and I decided it was stress related- I had probably just overworked myself at school and with a little rest and a lot of Grey’s Anatomy reruns I would be fine.
Spoiler: I wasn’t. Midway through season five I awoke around four in the morning from butt pain alone. The pain had progressed from hurting when I walked to hurting when I sat to hurting when I simply existed. The best way I can describe it is to have you imagine something is trying to pull you inside out through your butthole. Also, you have a fever. Also, you can’t tell people about the source of the problem because it’s “icky.” The pressure was constant. It kept me awake. I had never experienced pain like it before.
My family is very against going to the emergency room. We are a “wait and see if it goes away” type of family. So for two hours that morning I watched Grey’s Anatomy, decorated cheap Walmart mugs with a sharpie and waited to see if it would go away. Around six I think I lost my mind. I was crying when I padded into my parents’ room, still pajama clad, and told my mother that I couldn’t wait anymore. Something had to be done.
When my mother and I loaded into the car that December morning I really had no idea that I wouldn’t be back for three days. We drove to a nearby 24 hour clinic. At this point I was unable to sit down, so I tearfully stretched out on the waiting room couch like a crazy person while my mom filled out paperwork. Eventually they took me into the back room and I had the first (and most humiliating) of many experiences where a kindly doctor tells me to drop my pants and lie on my side.
“Hmm,” he said, looking me straight in the anus.
“Is it hemorrhoids?” I asked, to which he chuckled and responded no. I relaxed onto the examining table. Maybe that was good news?
Before I could ask when I would be able to go home the doctor turned to the neighboring nurse and told her to call the hospital and schedule me for surgery. “Shall we call an ambulance?” he asked me. I stared into his eyes and demanded he bring me my mommy.
Thirty minutes and several doses of morphine later the ambulance was on its way. I turned to my mom and blearily told her to text my best friend. I don’t remember exactly what I told my mom to say in the message, but it was probably pretty alarming. Sorry, Kristen.
When the EMTs arrived they burst into my room and the man looked at me and then glanced back down at his chart. “Oh, sorry,” he said, “your stats here, and your condition… I was expecting a little old lady.” As he loaded me into an impossibly high tech stretcher I took his words to heart, looking at the bright side. At least I still had my youth.
It was another full day until I was finally operated on to lance and pack the abscesses. When I woke up from surgery I was in a hospital gown and a pair of sheer granny panties. I needed to pee. I called Kristen several times to tell her I wanted a snow cone (half lemonade half kiwi not sour.) Over the next few days I was kept in the hospital for observation, which was the worst. I know that saying it was the worst makes me the worst for complaining about finally getting the help I needed, but I don’t care. I hated it.
The night after the surgery I begged my mom to stay with me in my creepy hospital room. She very practically told me that she loved me but was getting the hell out of that hospital (in much kinder words, I’m sure, but I can only remember it the way it felt at the time.) I was terrified the doctor would return in the night to “unpack” my surgical site, which is just a glamorous medical way of saying he would pull old gauze out of a gaping wound inside my butt. Sure enough, around midnight I was awoken by a night nurse upping my dose of morphine and telling me that the doctor would be in to change my gauze. He told me he would count to three and pulled it out at two which was probably necessary but ultimately unforgivable and I screamed like I was being murdered. The doctor and the nurse then left me alone, assuming I would go back to sleep (really??) at which time I promptly fell out of my bed and then texted the boy I had a crush on to tell him there was a ghost in my room with me. Somehow I still believe that all of this is my mother’s fault. Don’t ever leave me again, Mom! The next day my friends came to visit and we watched The Grinch several times. Kristen brought me a snow cone.
I got home from that traumatic hospital visit the night before Christmas Eve. It was chilly and I was sad. I spent the rest of the month taking approximately one thousand baths, which is apparently really important after someone has surgery on their anus. I finished Grey’s Anatomy. I went back to school. I tentatively enrolled in classes while fully expecting to drop out some time during the semester. We scheduled a colonoscopy for late January to try and figure what caused my abscesses to grow, and in the three weeks between classes starting and my procedure the infection came back. I cried a lot. I took more baths. The day before my colonoscopy I was supposed to drive myself home but I had confused my medications (I had several alarms set throughout the day to buzz when I was supposed to take a pill) and called my mom from my bed to tell her that I couldn’t get behind the wheel. “Don’t you dare tell my friends!” I warned her, always afraid of being a burden on the people who did so much for me already. She promised not to ask anyone to drive me home. Half an hour later one of my closest friends, Durbin, knocked on my door. “Your mom called me,” he said, “and your dad gave me twenty dollars.” We made it back to Houston in time for the surgery.
When I woke up from the colonoscopy I saw my wonderful new doctor standing over me. I immediately reached for her hand and asked her if they found anything. She told me that it was too early to tell, but it looked like a classic case of Crohn’s Disease. My eyes filled up with tears and I squeezed her hand. An answer. Some hope. It remains one of the best moments of my life. Content with the possibility of a diagnosis, I drifted back to sleep. I still had to pee.
I drove back to Austin and went to class. Three days later I drove to Houston again and met my parents at the hospital. My parents were sitting across from me when my doctor told us my official diagnosis, a pretty advanced case of Crohn’s Ileitis. My father was visibly upset. I knew my mother was disappointed. I only felt elated. We discussed my options, and then the risks to all of them. There was a roaring in my ears. My dad brought up the likelihood of cancer, which was higher than any of us were comfortable with. We scheduled two surgeries for the following weekend, Valentines Day. We thanked the doctor and my parents drove us to a Ikea parking lot where I hugged them goodbye.
I got in my car to make the three hour drive back to school full of energy. That energy turned into heavy breathing, which finally turned into wracking sobs. I cried until I screamed. I cried about my whole life. I cried because I was so terrified. I was alone.
That was exactly one year ago. The day my life changed forever. The day that separated things into “before,” and “after.”
Today was very regular. I slept in. I went to class. I ate lunch and chatted with my roommate. I called my mom and we didn’t talk about Crohn’s at all. I got a postcard in the mail from my best friend, Kristen, who remembers my snow cone order to this day. I watched half of Jurassic Park with my boyfriend, and then I did my homework.
I’m still sick. I will always be sick. But I’m not alone. I’ve learned that over this past year. As I type this, my friends are waiting for me in the next room. We’re playing board games and talking about nothing important. I didn’t make any decisions today that will affect the rest of my life. I just lived. I know these aren’t the kind of days that we remember. We don’t make average days into anniversaries. But still, I’d like to say that this moment is important. I’m happy. I’m surrounded by people I love. And I don’t want to keep them waiting one second longer.
So thanks for celebrating this with me.
8 thoughts on “Happy Crohnsiversary to me!”
As a fellow Crohn’s patient who had a similar experience w/ an abscess, welcome to the club of the miserable. Live life on, life is good, enjoy the moments where you don’t have to deal with digestive anything, and most of all, good luck!
My name is Margo, and I’ve been diagnosed since 1984, back when NOBODY knew what crohn’s was….I thought I was dying of cancer and was never so happy to get a diagnosis! It sucks, but it doesn’t suck 24/7. Well, maybe sometimes 24/7, but not 24/7/365. 🙂 I’ve been through the joy of abscesses, fistulas, three resection surgeries….but it’s been a good 10 years without any removal of any body parts. Good luck to you, and welcome to the club. You definitely aren’t alone!!
Hey fellow crohnie here! My name is Phil. I was diagnosed with crohn’s when I was about 8 years old. I’m 28 now. I guess since I was younger, knowing I had crohn’s didn’t bother me as much. I didn’t understand the consequences of the disease yet. Getting diagnosed was a nightmare for me and my family. I literally weighed nothing, just skin and bones like a holocaust survivor. I coudn’t even open a door I was soo weak. I would lay in bed folded over screaming into a pillow from the stabbing pain. So far probably a total of 10 lengthy stays in the hospital, surgery twice (resection of terminal illeum where my disease presents itself.) but by far the worst might have been the abcesses. Early on I didn’t get abscesses until around 2005 when my intestines basically looked like a mangled mess. I had about 3-4 goldball size abscesses and 1 large GRAPEFRUIT size abscess which then proceeded to herniate through the stomach wall muscles on the right side of my stomach. Had to have multiple drains inserted into my belly, which had to stay in til the fistulas from the abscesses closed up. Took weeks and eventually had my last surgery. After that surgery I felt amazing, like I had been cured, and as my surgeon put it essentially I was cured, the diseased portion was gone. Flash foward a few years, still doing great, on some maintenance meds, slowly start slipping and stop taking the meds. Now I’m on nothing for crohns. Did great til about 2011 when I had a big flare. Got that under control up until recently I’m having another intense flare. Got admitted over thanksgiving for a partial obstruction which thankfully resolved. Was admitted again a few weeks later for another partial obstruction, again resolved. And now a few days ago I swear I had another but bumped my pred dose back up and that seems to have help. I’m basically on borrowed time and staring down another surgery so I need to figure out some new options. Anyways not to scare you or anything but realistically yes this disease sucks, it’s extremely painful at times, you feel sick as a dog sometimes, but you’ll get through it. On thing I found interesting was it really put things in perspective again, like what the important things are and the things you take for granted mean so much more.
Thanks for posting – had my first episode while up all night studying for an Econ exam freshman year, that was 13 years ago – yeesh. Blood in yo poop isn’t necessarily cancer kiddos. All the best.
Hey Shannon, i lovvve to read your blog and i until i read your blog i never heard of Chrons diesese. it must be hard for you but i love the way you are kind of embarcing it in a way you dont sweat the small things and i just love it. i’ve started a blog myself and im kind of scared about it but i need to keep myself anonymous because i’d hate if my friend read it or anything. Anway good look with everything xx ❤
Reading most of this was like revisiting my life back when I got my first symptoms at age 17 (2009 or so). Thought it was hemorrhoids and all that stuff. Six years later and I have been doing pretty well. I have to say that being on Remicade for most of those years made it seem like I didnt have crohns at all. I hope you and every other crohnie out there is doing well. Stay strong.
This was incredible! So well-written. I honestly know very little about Crohn’s, but you’ve inspired me to do research and be more informed. Keep telling your story, because it’s an important one!
I loved to know your story. You write so well, i think you should writte a book. Love your post, please continue being this awesome person.