Before I was diagnosed with Ulcerative Colitis I had no idea what Inflammatory Bowel Disease (IBD) was. There are approximately 1.4 million Americans who have IBD. The two major diseases that make up IBD are Crohn’s and Ulcerative Colitis. Of that 1.4 million, 700,000 are people with Ulcerative Colitis, like me. There is a nonprofit organization dedicated to educating people about IBD and raising funds to find a cure for IBD called “Crohn’s & Colitis Foundation of America.” Its website is http://www.ccfa.org.
Before I was diagnosed with Ulcerative Colitis I did not experience any out of the norm bowel movements. I barely ever had diarrhea, like ever, and I rarely ever had blood in my stool. I would say that I went #2 pretty normally…
A couple days after the Fourth of July I noticed that I had white, jelly like stuff exiting my behind…Yeah, I was a bit concerned, but I decided to wait it out…I continued to work my summer job (away from home) and a week went by. I decided to fess up to my parents about the weird stuff coming out of my butt, because the weird stuff got weirder. Instead of just white, phlegm looking stuff there started to be specks of blood mixed in with it…and I knew that blood in your stool is never a good sign.
So yep. I called home. My Dad picked up the phone and I was like “aw man Dad, I did not want you to pick up the phone, but I guess you will be the first to know– I have weird stuff coming out of my butt.” I told him it just like that…I think I remember my Dad being like “what…what weird stuff?” And I was probably like “white, phlegm-y stuff with blood.” Then he got my Mom on the phone. They both did not know what it was. I asked my Mom this, “Have you ever gone and had white stuff come out?” and she was like, “No.” I was pretty confused and bummed out that neither of them had not have had this happen to them, ha-ha. I just did not want to have something wrong with me…
I worked for another week and then I was able to come home on the bus (July 16). My Grandma was at the hospital with my Grandpa, so she came and got me at the bus stop and then took me to the ER while we waited for my Grandpa.
I told my doctor my symptoms and that I had been in China in the end of May to the end of June. He immediately suspected that I had some sort of bacteria in me (from my China trip). Also, he clarified that it is not called phlegm; it is called mucus. I gave a stool sample– my first stool sample ever. It was tested for E. coli, salmonella, parasites, and other bacterial things.
Before the test results came back I was prescribed to take two antibiotics, flagyl and cipro. My doctor warned me that if I started taking cipro before the tests results come back while taking flagyl that I might give myself joint pain (if the test came back positive for something). I did not want to take this risk, so I waited four days for the test results to come back negative. Basically, I started flagyl right away and cipro four days later. This time gap between taking the antibiotics gave me an infection!!! I still do not completely understand why this happened.
Before I get too ahead of myself, I took the two weeks’ worth supply of the antibiotics, flagyl and cipro. My symptoms did not clear up, but I continued to work my summer job. My co-workers noticed that I was running to the bathroom. I could not do anything about it aside from making an appointment with a GI specialist. I made one for Friday, August 10. I stuck it out…I had experienced bloody diarrhea for a month…over the month it got worse and worse– I was going more times a day and could tolerate less and less food. I ended up losing 10 lbs.
I could not wait for my appointment time. On Tuesday, August 7 I worked my unknowingly last day at my summer job. That night I ordered a five cheese pizza to eat my feelings away– food was the wrong thing to choose to comfort me, since it was just aggravating me…The next day, my boyfriend came and picked me up to begin our camping trip…I felt like crap and was cranky.
“Lane to Red Barn”
This painting reminded me of our camping trip; it was in my hospital room during my second surgery recovery time. Driving up to the glass house cabin was a red barn.
Actual Picture that I will call “Lane Past Red Barn”
We stayed in the glass house cabin until Friday morning. I wanted to stay here because of the unique architecture. The room part of the cabin has glass walls (with curtains to draw) and then it has a little patio that is connected to a bridge across a creek. The bridge leads to the kitchenette/bathroom. This is a cool design, but it is not so handy when it is raining and you have to run to the bathroom a million times out in the not so ideal weather. I was going 14 times a day. I spent a lot of time curled-up in bed. Yet it was not all bad! My boyfriend started a campfire and we just sat around together for the two days. We did enjoy some awesome “griller” veggie burgers with basil; they were oh so delicioso. I knew I had to wait seeking help out, but I wished I did not have to. When Friday morning finally arrived, my boyfriend dropped me off at the clinic, and I met-up with my Dad there.
(Check Out The Glass House: http://www.candlewoodcabins.com/site/glass_house)
At my appointment I gave another stool sample and this time it came back positive for the c. diff. infection! ARGH. This infection is extremely contagious and knocks you on your bottom pretty hard! My doctor prescribed me more flagyl to get rid of it.
This time around the flagyl medication made me so nauseous I could not eat anything. It was a really pathetic time for me. For a week I did not leave my couch. I was in pain and confused. I was not eating or drinking anything and would still go to the bathroom multiple times (all that came out was blood). At the end of that week my parents asked me if I wanted to go to the ER. I was out of my mind, and I did not know what I needed. My arms felt heavy; I could barely lift them. They took me to the ER. I was really dehydrated. I had my first ever IV placed. The guy messed up and bruised my arm really badly– all the other IVs I have had placed have gone smoothly…I was admitted to the hospital, (August 18, 2012).
I was in isolation (because of the c. diff. infection). This means that everyone who came into my room had to put yellow gowns and gloves on. I showed my nurses the toilet every time I went to the bathroom. One of my nurses said c. diff. smells horrid and that my bloody toilet stuff did not have a smell and had too much blood. My nurse informed my doctor about this…
My doctor ordered to run a CT scan on me and to do a sigmoidoscopy. I had rectal contrast and enemas up my butt. Wow, I was thrown a lot of new things and tried to roll everything off my shoulder with humor. (My Mom says that I have the humor for this type of disease). From the sigmoidoscopy, my doctor was able to collect tissue. The tissue and the pictures suggested that I had Ulcerative Colitis. I had a diagnosis and needed a plan. I was given a bunch of information on what it is and how it is treated. I had this feeling that mine was a severe case, but I hoped and hoped the medicine would at least work for a while…
I was discharged, (August 24, 2012). I was sent home with a bunch of pills (over twenty) to take each day. As weeks went by I lost some pills to take. I remained taking the first treatment medicine, Asacol or Lialda, and tapering off steroids…I was in remission– I had no blood in my stool and my stool began to become formed. It is “interesting” seeing how your poop can become more and more formed day-by-day, week-by-week…
Then my tapering of steroids ended…On my third day of no steroids I had experienced bloody mucus weird stuff again, and I called my doctor. My doctor put me back on steroids and we set-up an appointment. (p.s. the whole time I was in remission I was on a low-fiber diet). At the appointment, I was given a prescription for the next medicine, Imuran, and I was warned about losing my hair and having a higher risk of developing cancer and liver damage. I was told I would experience an upset stomach for the first day or two and that was normal.
My first day taking it, Thursday, November 8, I experienced stomach pain all day. Then that night I had bloody diarrhea and that was the beginning of my second flare-up or the start of my November Hell Month. The rest of my story has been unveiled already. What a roller coaster ride it has been and it is still going with having at least two more surgeries and recoveries to undergo…
Throughout these past 6 months it has been hard for me to explain what it has been like going through this– part of the reason why I started making posts about it. Before December most of my friends and family did not know how severe it was and how it was affecting my life– even though I was hospitalized twice for a good amount of time before my first surgery…Basically, I felt alone dealing with it. But now it is all in the open– just how it should be!
“Nearly 1 in 200 Americans have IBD, yet these diseases are rarely discussed” — http://www.ccfa.org
When I was in high school there were roughly 600 students. Three of those students will probably wind up facing IBD. I’m one of them– who are the other two?
That’s Cruel To Think About