Young and Fearless

Emily KateIntroduction:

Hello My name is Emily. I am a young adult who was diagnosed with Ulcerative Colitis in college. I have been diagnosed for three years with UC. I was diagnosed with UC when I was twenty-one years old. I am a kind person, with a heart of gold (or so i’m told!). My journey with having Ulcerative Colitis has not been the easiest, but it’s always better knowing you’re not alone with many others sharing this unfortunate illness. You have to keep positive with a big smile. Never give up is my motto I live by every single day. Do not let UC define you. You are the person that defines you.

Some more about me:

I’m generally a pretty happy girl who 95% of the time has a smile on my face. When people describe me, I normally get the same things said. I am a piano-loving musician who has played piano since early elementary school. I don’t get to play to often anymore due to being a young adult who needs to work full-time. I am a dog lover who has had a dog for my entire life. The current dog I have is a yellow Labrador retriever. We’ve had him since he was a month or so old and he just makes me the happiest person alive. If I have a bad day with my UC or at work, I know I can count on him to still wag his tail and want his belly rub every night. I absolutely love going hiking, but I only get to go about 5-10 times a year. I try go go prior to the summer since I’m terrified of snakes ( which I’ve seen while hiking!). You’ll also know me as the person to always pitch in when someone needs help, whether it be a friend, a a co-worker, or my family. I’m always doing my fair share to make things run smoothly. I’m an full-time administrative assistant at a firm, but hopefully down the line, I want to be a healthcare administrator. I worked in a kitchen at an assisted living facility for almost 5 years. I loved working with the elderly, and still think of them every day. I will need to back to college for this, but that is my ultimate long-term goal. My short-term goal would to be running in a 5-K race. I also love spending time with my friends. I’m just a fun-loving, happy girl.

Colitis Symptoms:

I currently have blood in my stool. I am trying to cut back on what I eat again to help the symptoms go away. The medication i’m currently on has seemed to help quite a bit otherwise, but I still flare up occasionally.

Young an Fearless

My story begins back when I was 21, almost 22 years old. I am currently 25 years old. I was finishing my first semester at a business school a few towns away from me (about a 30 minute drive). I previously went to a community college and worked part-time (really full-time) in an assisted living home. Work was taking over my life and putting school on the back burner. I wanted to focus on getting my degree so I left my job and once accepted, transferred to a business college with an accelerated program. I thought no work and focusing 100% on my schoolwork would be healthy and give me an edge.

During finals week of my first semester, I started having bloody diarrhea. My parents and I both thought it was the stress of finals week getting to me. I was giving it time to get out of my system. Since I didn’t feel better the week after finals, I went to my family doctor. This doctor wanted to do about 10 different exams on me..none related to GI issues. She told me just to relax during my two week break before the next semester, but to call if it doesn’t get better in two days. Christmas came a few days later, and I was still not well. I called the practice and saw a different physician. They were shifting patients around since a doctor in the practice passed unexpectedly at age 50 so they were severely overbooked. This doctor said that I needed to see a GI specialist ASAP! He personally made phone calls for me while I was at the office to two different practices he recommended to get me a appointment. The first one was two weeks later. The other pl ace couldn’t get me in for a month. We took the first appointment available with the first practice, two weeks down the road. He gave me his personal cell phone number to call in case things got a lot worse. In the meantime, I was put on a clear liquid diet. My family usually celebrates New Years with steak, baked potatoes, and salad. Everyone else was able to have our special meal except for me! I was so upset I didn’t know what to think.

I went back to school after my two week break after finals to begin my second semester at the business college. My symptoms of my bloody stool got much worse. I was going at least 15-20 times a day. I was literally running for the bathroom and having unfortunate “accidents”. I lived in townhouses that campus housing provided students with three girls. It was terribly embarrassing to have this happen, especially at college. I ended up going to class, sleeping on the bench during my break, having jello or soup broth for lunch, and then sleeping after my last class ended at 3:00 p.m. My parents would end up waking me up every night around 7 to say goodnight. I told my professors the first day class about my upcoming consultation with my GI specialist. They needed to know if I had to run out of the room, it was an emergency.

I had my consultation Thursday afternoon..four days into the new semester. My doctor spent over two hours with me examining my abdomen area, asking me questions, and getting me prepared to have a colonoscopy(something I thought i’d NEVER need until I was 50). He told the nurse I needed to get into the surgery list for the next day, Friday. However, she told him that there were no appointments available. He didn’t listen to her. He instructed her to get me scheduled, that I needed to get one done the next day, no if, ands, or buts. He was insistent he was going to get me the help I needed. The nurse came back and told him she was able to squeeze me into the schedule since another patient had just canceled their appointment for the next day.

I went back to school, grabbed all my belongings (since I wanted to wash everything) and went home in to get prepared for the preparation portion of the colonoscopy. Since I was very, very ill, I got sick multiple times while having to drink horrible Gatorade lemon flavored (and I still hate gatorade to this day!). I couldn’t tell if it was doing it’s job since I was already going to the bathroom constantly anyways before having to drink the lovely prep meds.

The day of the surgery, I was a total and complete mess due to my nerves. My parents both took off of work to take me for my procedure. Unfortunately, the results were not good at all. They had to abort my procedure because I was too sick. I got dressed and had a glass of water from the nurse. Once ready, I was taken to a room where my parents and doctor were waiting for me. I had to be hospitalized to due to my ulcers being severely inflammed. They thought there was a 90% chance I would have to have surgery on my colon (that’s where I really started to freak out!). I apparently said that it was okay to admit me to the hospital (although I must have been really out of it since I can’t remember saying I agreed to it).

This was my first hospital stay in my entire life. I was not sure what was going to happen. Since I was dehydrated from the procedure, the nurse had a heck of a time getting the Iv into my arm and we had to get an IV specialist to put the IV in. My parents took turns on who stayed with me the first few nights. After that, I was on my own at night to fend off this awful disease in the hospital. I started to get very cranky, which is not like me at all. The day after I was admitted, I was told that my blood work came back. I did not have Crohn’s Disease, but I did have ulcerative colitis. By the way, let me tell you…this happened the week of my 22nd birthday! I was bound and determined not to be in the hospital for it at all! I was admitted for 1.5 weeks. Since the situation of my bathroom needs were dire, I got to have a room all to myself until the last two days when I was starting to get better.

Luckily, I was released two days prior to my birthday. I did not need to have surgery this time, but it will be a possibility in my future years. It has not been easy in the slightest bit, but I learned that I have gotten stronger each day i’ve had to live with this illness.

Many questions came into my head all at once…Why me being the first question…and still a question I want answered. Why did I get stuck into having some chronic illness? Why do bad things happen to good people like me? What did I ever do that was so bad to someone that I got this illness? I hope someday I will be able to get my answer.

I went back to school the following weekday to continue my semester. I had to drop one course as it was too much information I had missed and I’m not wonderful at math to begin with. I felt stupid when called upon and didn’t know the answer the next day since I was in the hospital for 1.5 weeks. I was put on multiple medications when in the hospital and out of the hospital. The one I hated was Prednisone. I gained 50 pounds on it (what felt like overnight!!). It took me almost two years to completely take off the weight I had gained. I was also put on Remicade. After a hellish start to my semester, I basically commuted to/from school so I didn’t have to deal with the social aspect of school. It wasn’t fair that people got to eat pizza, drink, do all the things college kids love doing that I could not. I also felt like I was hogging up the bathroom. The housing director didn’t want to let me out of my lease, but my doctor graciously wrote a letter to help me get out of my lease. I didn’t want to be the odd kid out with this college experience.

I started to get my life back on track. I started to lose weight by speed walking and going to the gym a few short times a few times a week. It took me two years to do it, but by gosh, I finally did! It just took a lot of determination and support from my family and friends. I continued to do well in school. I only got two Bs my entire time at this college, even though I was going through a major health crisis. I learned to get knowledgeable about UC and found multiple resources that I still continue to use.

I began my last semester with an internship. My advisor e-mailed me a job advertisement that she thought I would excel in (and only 2 buildings away from where my internship was being held..ironically my internship was for the hospital I had to stay at when diagnosed with UC). I applied for the job, and hoped for the best. I got a call that week to come in and interview for the position as an admin assistant for an engineering firm. I interviewed a few days later, and told my parents, “well, at least it gives me some practice”. I thought I did absolutely terrible, but I guess I did pretty well. I got a call about a day later asking me to join their company. They wanted me for the position!! I had to work longer hours to complete my internship faster so I could start my first real world career job with this company. I ended up graduating a month earlier than expected because of this situation. Also, i’d like to note that I graduated Sum Cum Laude. I don’t know how in the world I pulled off having a 4.0 all the while dealing with the beginning of having a chronic illness like UC.

I am finally off all oral meds. I still have to get Remicade infusions every 8 weeks. I am praying that some other miracle drug comes along so I do not have to go through these infusions every 8 weeks. I have had some side effects like hair loss-my already thin hair has gotten thinner. I am so glad I am off the prednisone. My doc wanted to give me stash when I was going away for a week just in case I needed it since I’d be out of state. I graciously refused saying that I thought I would be okay with just a suppository if needed.

UC has changed my life in so many ways. It makes me want to do things that I never thought I could possibly do. It makes me want to stay healthy so I can stay out of the hospital. It has taught me who is there for me, and who left me in the dark. It taught me I can do anything I put my mind to. It has helped me bring music back into my life. For months, I stopped playing piano. I was just so unhappy with this diagnosis. I went through so many emotions from sad, angry, depressed..but I got through it with the help of others. My neighbors helped me get back to happiness with music. We both have a love of music and are musicians by hobby. I forgot how much I loved playing piano they taught me to remember. It also helped to have them as a audience to just listen to me play.

My family and friends have definitely been a big part of getting me back to the healthy and happy Em they know. I can now tell you who my true friends are. They are the ones who stuck by me during this scary and fearful time and didn’t leave me hanging. I lost a lot of people who I thought were “friends”. They didn’t want to stay friends with or hang out with some girl who has a disease. Thankfully, I still have a good portion of friends who have stuck by me. I don’t know if any of them truly will understand what I’ve been through, but their support means the world to me. My grandma always told me you can count your true friends on one hand..and I definitely believe that is true after learning my diagnosis of Ulcerative Colitis.

When I go out, it is rarely with friends. I just am always so tired easily. Does that happen to anyone else? I work very hard during the day at work and then go to the gym, come home, have dinner, and I’m too exhausted for much else. On the weekends, I still get tired easily. I only drink around a few of my very close friends that I trust with my life. They know about my diagnosis and understand that I can’t have much or any alcohol (besides my uc diagnosis…i am short in height and usually limit myself to two drinks). My one friend has even gone as far as to tell the bartender to make my drink with less alcohol so it’s easier on my stomach…now that’s a true friend! I only drink alcohol maybe once every couple of months as it bothers my stomach too much.

I am concerned about having a child in the future once I find Mr. Right…like 5-10 years down the road. Will I be able to have a normal, healthy baby? Will the Remicade affect my child? Will I have to stop taking Remicade infusions to have a child..which could make my UC flare up again?

I first need to find Mr. Right in my life. How do you tell someone about your diagnosis? I want to start dating, but I need to get myself together first. I’m afraid the person will freak out and think I’m some weird person with an illness like this.

Do any of you really go into remission? I think I went into remission for a few months once, but otherwise, I have flare ups every so often.

I’m lucky to say that I am still here today. My doctor always seems to make it a point to tell me that I almost died before being diagnosed with UC. I couldn’t help it that I got sick during the holiday season. I’m so thankful that I was given a chance to get better, as sometimes that’s not always the case.

In any case, thanks for letting me vent. This disease has not been the easiest thing in my life to deal with, but letting my story known has helped me with the healing process.

Any tips or suggestions, or comments in general would be extremely helpful. I am trying to learn as much information as I possibly can. I need some help in regaining self-confidence after losing weight. I still feel ugly compared to what I used to look like prior to getting sick. Help me get my healthy back! Health tips please!!

Colitis Medications:

I was on numerous medications when I got out of the hospital. Prednisone was by far the worst as far as the side effects go. I had the moon-face, gained 50 pounds very quickly, was grouchy, and in terrible pain once it was time to wean off of it. I cried for days when weaning off of it. It made me lose my self confidence.

Remicade was what they put me on in the hospital and so far, it’s been a miracle drug for me at least. I still have to get treatment every 8 weeks (which is an absolute pain when you work full-time). I have to take off 7 times a year for this, which eats a lot of my paid time off time. I get a lot of joint pain with Remicade about a week prior to the infusions. The weekend after my infusions (I get them Friday usually), I usually spend sleeping and resting. If I end up shopping or doing something that weekend, I tend to get winded and too tired to finish the task.

Hopefully in the future, some amazing drug will come and we will find the cure for UC!

written by Emily Kate

submitted in the colitis venting area





4 Responses to “Young and Fearless”

  1. AngelaMarch 3, 2013 at 8:00 am #

    Hi Emily,

    It was great to hear your story! I am so glad you are doing better! I’m 24 and have UC for 11 years so I know what you’ve been through! I am so glad you have a great attitude about this because it does make a difference on your health. My parent’s always told me when I first got sick that things only happen to the people who can handle it. And I believe in the end its makes us all better people in one way or another.

    I’ve been on Remicade for 9 years (it’s my miracle drug!) and was on prednisone straight for 3 years at the start of high school. It really sucked trying to get all that weight off! But more about your concerns with pregnancy. I’ve been reading a lot of research on it as I too want to start a family eventually. UC’ers are techinically high risk but there’s no reason we can’t have a healthy baby. We’re around 30% more likely to require a C-section. Remicade is rated as a Class B medicine in regards to pregnancy meaning that in all the labs tests its proven safe on animals but there aren’t enough human cases to make it Class A (I think there’s been around 500 patient studies which aren’t enough for the FDA). Class X is the worst (like methotrexate). That being said, it can actually be more dangerous for both the mother and the baby if you have a flare while pregnant so it might be safer for the baby to be on remicade. I’m sure they’ll have more research in a couple years and you can make that decision when you come to it and talk to both your OBGYN and Gastro (in the future it’d be best to see an OBGYN who specializes in high risks pregnancies). Also talk to your doc about taking folic acid (its essential to a healthy pregnancy and some meds can interfere with it(remicade doesn’t luckily!).

    Also, one way I’ve helped prevent flares was to take a birth control pill that was a 3 month pack (so only 4 periods a year). There’s research that correlates flares with the hormone fluxes during your period, so limiting your number of periods can make a dramatic difference.

    Pain in your joints is actually a manifestation of the UC (especially since yours happens right before you’re due for a remicade treatment) and remicade helps this but as you are nearing you next infusion you’re levels of remicade in your blood have decreased some which allows the joint pain to become more prominent. I get that as well and I’m also more run down the week before an infusion.

    Make sure to get your vitamin levels checked so you know what supplements to take. And only take tylenol for pain, all the others are NSAID pain relievers and can irritate your intestines. I’ll let everyone else tell you more about possible diet changes and what not but I’ll give you some remicade tips.

    Make sure you get your yearly flu shot and bi-annual pneumonia shot. Get tested every other year for TB (its just a chest x-ray so no big deal). Be careful in the sun, wear broad spectrum sunscreen as remicade can affect your skin’s sensitivity. Other than that look at the remicade infusions this way…its dedicated you time where you can sleep or relax and no one bothers you! :) Also, I always schedule mine for Friday’s so that I can just take off and go straight into the weekend and not worry about work the next day. I’m in grad school so I actually drive 3.5 hours back home to get my infusions.

    Good luck with everything and I hope remicade keeps working for you!

    Angela

  2. joannaMarch 3, 2013 at 4:21 pm #

    definitely stay on the remicade for as long as it helps you! i was so sad when it stopped working for me but what can you do? i only had 5 infusions of it, but they weren’t a big deal to me. i agree that trying to find a job that worked around the infusions was hard.

    as for having kids, well, with this disease, it’s not possible for me. i just couldn’t deal with a pregnancy on top of my illness- the baby and i would not survive, i’m positive. i think remicade is fine to take when pregnant.

  3. bevMarch 4, 2013 at 10:26 am #

    Take a good probiotic first thing in the morning onn an empty stomach, with water, at least 50 billion in strain.

    Trust me…we UCers NEED to replenish our good flora. It starts there!

    If you do nothing else, incorporate a good probiotic that is recommended for people who have severe bowel issues like us.

    Also, extra virgin olive oil has been working for alot of people on thios website, as well as L-glutamine. Both of those thongs seem to ‘heal’ the mucosa of the colon.

    I have had UC for 15 years and yes, remission is possible because I’m finally in it, and on NO meds at all! Just a probiotic and L-glutamine. First real remission for me in 15 years…no joke.

    Cheers,
    Bev
    :)

  4. KimberlyHI
    KimberlyMarch 5, 2013 at 12:13 am #

    Emily,

    I had baby # 1 in 2011, at the time I was on Asacol. I took it the entire time I was pregnant and breastfeeding with no issues. It is considered a safe drug to take during pregnancy, or at least safer than having a flare.
    Now I dream of having baby 2 but a few months after baby 1 I went into some bad flaring and ended up on remicade. I am doing good on the remicade but have thoroughly discussed with my GI doctor about having a baby on remicade. I think I have decided, with his support, to try staying on remicade until the end of this year. If my colonoscopy at that time looks good he is going to switch me back to asacol. Then I will feel better about having a baby. It’s risky because I don’t know if asacol will work now and also I hear a lot of people who come off remicade can’t go back on because they build antibodies to it.
    So here is why I want to try this rather than having a pregnancy with remicade. My doc says there is not alot of info out study wise regarding pregnancies and remicade, but he assures me there have not been reports of issues regarding pregnancies and remicade so far. He assures me that it is safe and he has seen a lot of successful pregnancies with remicade. He also says many women end up in bad flares during pregnancy because they stopped their remicade, and the result is worse for the baby than meds would be. However, I guess what they normally do is they do not have you do the infusion in the last trimester. This is so that when the baby is born their immune system has that last trimester to build up, because the remicade does pass through the placenta to the baby and weakens their immune system. So then when the baby is born you have to be careful with keeping the baby away from sick people and can’t get the baby live vaccines for a few months. Well, this kinda freaked me out even though it sounds like it is fine and safe and all, my baby could have a weakened immune system?? That makes me nervous. But then again I could come off the remicade and go back in a flare and not be able to get pregnant at all. So it’s really a toss up! I do know that women with UC have healthy babies all the time but it’s important to not be in a flare when you get pregnant.
    Good luck Emily! Feel better soon!

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