I realized yesterday that I was diagnosed with Crohn’s disease exactly one year ago. Happy Autoimmune Disease Birthday to me! It took me awhile to write and edit this post, so it’s not exactly to the day, but it’ll do. I figured I would write about my journey with this disease – from flare-ups, finally being diagnosed, medications, and now, one year later, how I’m dealing.
*Just a warning, there are some gross parts, so I apologize if you don’t find it appealing, but this is what happened. Also, it’s kind of a long story…it’s been a long time coming and it felt like even longer when I was actually going through it all. I warned you. So if you’re still willing to read, let’s proceed.*
Okay, so I have had two flare-ups in my life, but it wasn’t until the second one that I was diagnosed with Crohn’s. I have no doubt that my flare-ups have been stress-induced. To start off my first flare-up, let’s take a trip to my senior year at Geneseo. Fall 2010 began pretty rough: my 6+ year relationship had become very rocky, I was going to college full-time, working at Walmart part-time, and on top of this my mom’s Multiple Sclerosis was a constant worry.
My health decline started with stomachaches that would not go away no matter what I did. If I was in my dorm room, I would lay down for the 5 or 10 minutes it took for the pain to go away on its own. There was no pattern to them – I thought maybe it was something I ate, but then they began happening before I ate as well as after. I then began noticing little bumps on my legs one day when I was shaving; they looked like whiteheads or ingrown hairs, but they seemed a little more on the green side than on the white side. Weird.
By the end of October my relationship ended, my schoolwork was getting more difficult, and it seemed I never had time to relax, let alone sleep. I was constantly feeling alone and left out because none of my friends had to worry about working and school, so they were able to enjoy their nights watching TV, going to dinner together, just hanging out. But I didn’t have a second to stop and chill.
And eating? Forget it. I began feeling nauseous at the thought of food because the stomach pains had become so intense and unbearable. I quickly began losing weight and by November, I was down to 112 pounds; my normal weight at that point was around 124. I mean, we’re talking my butt was becoming flat. Obviously something was wrong.
Throughout this time, those small “pimples” on my legs grew and became large open sores. At one point, I would try using a cotton ball with either hydrogen peroxide or rubbing alcohol to clean them, put some Neosporin on them, and cover them in band-aids every single day. No matter what I did, though, they never got better. I mean they were getting so deep and wide that I had craters in my legs. Yeah, gross.
I also was getting swollen joints – I wore a knee brace under my pants because I couldn’t bear all of my weight on my knee without it feeling like it would buckle. Up until this point, I had really only had my nauseous episodes while in my room, so it was easy enough to just lay down for a bit to let the feeling go away. But then it started happening at work; I almost passed out a couple times during my shifts at Walmart because of the pain, nausea, and lack of nutrients.
Wow, what a mess I was!
Okay, so by this point you’re probably asking, “Why the hell did you not see a doctor?!” Well, you see, I did not have insurance. I had just turned 21 in August and my dad took me off his plan. I didn’t have money to pay for my own plan, let alone a bunch of medical bills. I was in the process of enrolling in a state-funded insurance but that takes forever, so unfortunately I never saw anyone for this until it was well-developed.
I ended up going to the ER, though, over winter break because I just couldn’t take it anymore. Something had to be wrong and things were still not getting better, even after being home on break from school and work. Because I did not have insurance, they were not willing to do much for me. I mean, the doctor tried to give me a pelvic exam – I think she thought I was either pregnant (I assured her I was not) or had cysts. After a long and frustrating night, I went home with no more answers than I had entered with.
I eventually got approved for insurance and started making appointments with a doctor in my hometown as well as the doctor on campus. Cultures of my sores were taken but showed no signs of what they were assuming would be strep or staph infections. Antibiotics and corticosteroid creams were tried but nothing was helping. Strangely though, everything just sort of went away on its own by about mid-March 2011; I wasn’t taking meds or applying any creams at that point, so my mysterious condition was still very mysterious.
It left some pretty mean scars on my legs, so I was extremely self-conscious with the warmer weather, wanting to wear things that would show my legs. But lo and behold, my skin was healing and I could eat again! Without knowing why, my condition was gone!
Or so I thought.
Fast forward to 2012. I had been accepted into Columbia University for graduate school in July and decided to defer admission until spring 2013 because there was no way I could go with such little time. And since my mom had been in the nursing home for over a year now, I had been spending my time alone in my house except when I was substitute teaching or working at Walmart. So I was pretty stressed. Add on the fact that I had just gotten a long-term substitute job for a maternity leave for the first 10 weeks of the 2012-2013 school year. I was so excited to get more experience teaching middle and high school kids, but man oh man did the stress get to me.
By the first week of September, my symptoms started coming back. The pain. The nausea. The extreme weight loss. The sores. Everything was back. And with a vengeance. I mean, I was literally waking up in so much pain all over my body, I had to hobble like a 90-year old woman. At one point, I was hardly able to put my shoes on because my one ankle was so swollen. The sores started as painful lumps under my skin before they actually opened. Again, gross, but that was my reality.
Luckily I took action much sooner this time, although it was really frustrating. I went to my general practitioner multiple times without getting answers. During my third visit, I broke down and cried telling her how stressed out I had been and how much my health issues were making things worse. She prescribed me a low-dose anti-anxiety pill. This did not do a darn thing.
She finally referred me to a GI specialist and wanted me to get a colonoscopy. Because of my age, the GI specialist decided to “simply” perform a sigmoidoscopy first. Tom came up to stay with me for a few days and take me to my appointment since I was going under anesthesia and would be in no shape to drive myself home. Apparently I was very persistent in trying to share my cookies with him once I woke up after the procedure. Unfortunately I missed a day of school for this test and it showed nothing.
Two weeks later, I ended up in the ER again. This time, because I had proper insurance, the doctors ran a whole slew of tests. Blood tests and cultures, a CT Scan, and a chest X-ray. Around 2:30 a.m., after about 5 hours of being there, the doctor came in and said that all tests pointed to either Crohn’s disease or colitis, but to get a definitive answer I would need to get a full colonoscopy. Until then, she gave me steroids, antibiotics, and mesalamine (anti-inflammatory meds for those with ulcerative colitis flare-ups). Good. Great. Grand. Wonderful.
Within the next few days, I felt much better. I went to Baltimore with my friends as planned the following weekend and boy did I enjoy eating food again! I can tell by the pictures of that weekend how skinny I was! I mean, look at my face! It’s usually a bit rounder than that.
The GI specialist received my ER tests and made an appointment within the next week; obviously something was wrong or they wouldn’t be so quick in doing this. So on October 8, 2012, I went in for a colonoscopy and came out with a definitive answer: I have Crohn’s disease.
I continued taking the steroid Prednisone to help with the inflammation (since Crohn’s is an autoimmune disease, my body was attacking itself, causing inflammation and bleeding and all that good stuff in my intestines). Unfortunately, steroids are known to cause “moonface” – puffiness of the face due to fat depositing in that area after long-term use of the steroids. I obviously began gaining weight because I was finally able to eat again, which was a great feeling. Except I felt like my face was getting very fat and puffy. Everyone kept telling me I looked great and that I didn’t look fat. All I will say is they all lied. Just take a gander at my passport photo which was taken after a month of being on steroids. Thanks everyone.
Since that day, things have been great. It sucks that I have to take 12 pills every day (I take Delzicol, if anyone’s wondering: 6 with breakfast, 6 with dinner) but I would much rather deal with that than with the excruciating pain I was in. I’m back to a healthy weight and I haven’t had any problems thusfar with my medications. I try to be a little better with my diet, but the doctor has not restricted me in any way. Many people ask if I’m not allowed to have nuts or seeds, but my GI doctor said, “If you like it, it tastes good, and it doesn’t bother you, eat it.” And I have. And I do.
I even emailed the doctor at Geneseo with my story (a bit more condensed) so that maybe if he ever comes across these symptoms again, that person won’t have to go through this huge mess like I did. I feel like I should be on that show Mystery Diagnosis. That could be interesting…