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Oops, you've got Crohn's! What? What is that?

brieyourbest

Cimzia Forum Monitor
Hey All! I hope everyone had a great day today!

I was diagnosed on 4/20/2011 and I am happy that I was finally diagnosed.

Since 2006, I have been dealing with abdominal pain, severe anemia, fatigue, or what my parents called LAZINESS! Is started college in Fall of 2007 and I would have great grades, then towards the middle of the semester my grades would drop, I would stop going to class, gain a lot of weight and tell people I was tired. This has been my tradition for four years now. My parents thought that I was just being lazy and slacking off but somedays I would be too physically weak to get out of bed. Other times, I would have spurts of "restlessness" and want to go out and have fun.

Since freshman year, I have had severe rectal itching, blood in my stool, severe anemia, and weight gain! I would go to the doctor and she would just tell me that I need to exercise or that it was the scar tissue from surgery I had before that made my anus itch.

But this semester was so different. I was making great grades [well, that usually happens] and in March, I started complaining about abdominal pain. I went to my PCP [primary care physician] and she diagnosed me with a UTI and gave me antibiotics. The pain went away but came back with a severe vengeance. I was in so much pain, people could see it on my face. I tried to suck it up and still attend class. I felt like I was already a let down because I wasn't graduating on time. Finally, the pain got to the point where I was throwing up horribly. Being an hour and a half away from home, I drove myself to the emergency room. My parents later joined me, as well as some classmates and I was diagnosed with a UTI again!

They gave me more antibiotics, put me on bed rest for a few days and sent me on my way. Five days later, the pain was worse. I couldn't hold any food down and was throwing up bile. I had NO ENERGY and had pretty much come to terms that I was just going to die... alone... in my bathroom. Luckily, my mom got in touch with me and some friends came to pick me up and take me to the Emergency Room. There they diagnosed me with Irritable Bowel Syndrome... I think. I was so doped up on drugs, that I had no idea up from down.

After that, my parents decided it would be best to take me back to Atlanta, where they could watch me and help me get better. Now on my 3rd or 4th round of antibiotics, I couldn't even keep them down. I was throwing up more bile. And to top it off, my mom kept trying to give me more medicine. Finally, they took me to the Emergency Room. The average wait time was 3 hours, so my parents thought it would be best to take me to another one but I refused to move. HELLO??? Can someone just get me a bed to die in? As soon as we were about to leave, they triaged me and took me right back. Thank God! My wait time was 30 minutes. But when we got back there, they wanted to send me home and just refer me to a GI. My mom refused to take me home. Thanks Mom! They admitted me to the hospital and gave me Morphine. They did another CT Scan.... I forgot to mention the first one.

The next day, I met a surgeon and my GI, Dr. Sunshine [such a great name]. The surgeon told me that I had a bowel obstruction and it looked pretty "nasty." He would probably have to take me down to the table the next day. Dr. Sunshine then decided to order me a colonoscopy and I had to drink that nasty salty stuff to clean me out. MIND YOU, I HAVEN'T HAD ANYTHING TO EAT IN A WEEK= STARVING! After the colonoscopy, he told me that I had Crohn's Disease. So now I am on Prednisone [40mg and tapering], Pentasa [4000mg] and Iron [325mg]. Everytime I take my medicine, I feel like an AIDS patient.

Since then, I've been trying to figure out what to eat, how to have some energy, how to lose my Crohn's weight and how to make up all this school time.

Positive Side: My dad and mom aren't upset anymore about me not graduating on time because they see that it wasn't my fault.

Negative Side: I have to take out more Student Loans to fund my extra year of school.
 

xJillx

Your Story Forum Monitor
Hi brie and welcome! Oh god, all of those antibiotics! Unbelievable...

How have you been feeling since starting your treatment? I sure hope better. I know it isn't fun taking so many medications, but if it keeps you well - stick with it!

To help figure out your diet, I suggest keeping a food diary to log what you ate and your symptoms. Since everyone is different, you need to figure out what your specific no-no foods are. My big time no-no food is deli meat; however, many others are fine eating deli meat. This disease is so tricky...

Right now, I would really focus on getting well. Don't stress about losing weight or school. Once you start feeling better, everything will fall into place. You'll have more energy to exercise mentally and physically! Good luck!
 

brieyourbest

Cimzia Forum Monitor
Hi brie and welcome! Oh god, all of those antibiotics! Unbelievable...

How have you been feeling since starting your treatment? I sure hope better. I know it isn't fun taking so many medications, but if it keeps you well - stick with it!

To help figure out your diet, I suggest keeping a food diary to log what you ate and your symptoms. Since everyone is different, you need to figure out what your specific no-no foods are. My big time no-no food is deli meat; however, many others are fine eating deli meat. This disease is so tricky...

Right now, I would really focus on getting well. Don't stress about losing weight or school. Once you start feeling better, everything will fall into place. You'll have more energy to exercise mentally and physically! Good luck!

I have been feeling very fatigued but the abdominal pain has subsided. Except for when I thought I could drink...

I really will have to try the food diary. Thanks for the idea.
 
Hello brieyourbest, I am fairly new to the forum. Hope you get loads of support and knowledge from others who are also at different stages of the disease. Although hearing that word crohns is extremely daunting, at least some kind of treatment plan can be established for you to try to mange your symptoms as best possible. Please try to be patient as each individual case is sooo different and you will probably endure a fair bit of trial and error to get the appropriate care. Keep a diary of foods and symptoms and try to learn as much about the disease as you can. Support is the key here and it sounds like you have that in your parents. It could take a little while to come to terms with it all, so having the forum to vent, query or just read will hopefully have the same effect on you as it did me, i dont feel so alone, i can talk to people who can relate to me!!!!good luck with it all and keep us updated.
 

allieinwonder

Moderator
Welcome! I'm so sorry you went through all of that. My story is pretty similar to yours, took forever for them to realize it isn't IBS or UTI (even though I still don't have my official diagnosis, and if my next tests come back normal I will probably be slapped with the IBS diagnosis again ~.~). I think it is almost malpractice that we have to get really bad for them to realize that something is really wrong! I am also not graduating college on time because of my illness, when this flare started last September I dropped out of 4 of my 5 classes and moved from Atlanta to Germany to be with my husband who is in the US Army. This illness can change your life, but you can't get down about it!

I hope the medicine helps get you into remission and you feel better soon!
 
Welcome,
I am what a journey, at least from here you will know what is going on. The unknown is the worst. I haven't graduated school yet, because my son was diagnosed with CD and then later not CD IBD, but has been having a flare up. My Doctorate class is graduating this month, without me.
You'll make it through. This forum is such as great place, you feel like you're among friends.

Trina
 
Hey Brie
Nice to meet you. My road to diagnosis is almost identical to yours, without the hospitalisation for obstruction. I'm so glad you have a diagnosis now, but sorry that it is Crohn's and that it is affecting your college life. How are you doing now? Are the meds giving you some relief from your symptoms?
It's great you found the forum cos I'd be lost without it, really. You'll find loads of information and support and if you're not sure of anything, fire off a question and if someone can help, they will.
Take care
Helen xxx
 
Hey brie, your story sounda pretty nasty, i know the fatigue feeling oh too well! & i also know the whole people thinking your lazy lol. Its definatley worth keeping a food diary as jill mentioned so it can help you eliminate the really bad foods! I had to drop out of my a-level studies due to my illness so your not alone, dont let it get you down! Just try & focus on getting better before anything else! X
 

brieyourbest

Cimzia Forum Monitor
Hey Everyone!

Thanks for reading and replying. I am so lucky to have found this forum! It is a great place! I am trying to stay positive about this Crohn's thing but I am also ready for a cure!
 
Hi Brie! What a terrible couple of years you have had. I am new to this forum as well but I have found it to be a great help even though I don't have an official diagnosis yet. I hope you start feeling better. Focus on your health and feeling better, that is most important.
 
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