Why, When, How, and Ugh

[Madeirey]

Hello to the internet world, I am Madeirey, but you can call me Rachael if you would like. On February 20th, 2013 I found out that I had severe ulcerative colitis. Yay! Every 15, almost 16 year old girl wants to know that she suddenly has an incurable disease, right? I knew something was wrong with me though as the symptoms started about 7-8 months before but being a stubborn person, I ignored what was going on with me and figured it would resolve itself. Then it just got worse... and worse... and I started going to the restroom more, having weird pain (but bearable), ect. ect. Still I decided not to tell my parents about it until late November. The doc thought I had some thing that I TOTALLY forget and told me to just take it easy. It didn't work obviously. And so I went on and thought it would all go away eventually. I started eating less because food apparently made it worse. Early December I ran a 13 mile Spartan Beast. That was awesome. It's basically a 13 mile obstacle course. Honestly, I was scared my weird sickness was going to get in the way and I wouldn't be able to finish the race, but it went all ok that day and I lived to tell the tale. Trust me, this is part of my story, just keep reading. I surmised that the more active I was the less the pain and weird symptoms were, so I tried to stay active. Went snowbording for the first time over the new year and the symptoms stayed relatively ok. Not super bad pain. It wasn't until I got back home from that trip that it REALLY started to get bad. The pain was increasing and so was the loss of blood. I began to get a little scared... I could still deal with it though, and so I did, as long as I could until the pain started to leave me in tears and I wanted to scream. That's when I told my parents at long last that this was still going on and it had gotten worse. Noticed a bump on the right side of my abdomen too... Wasn't sure what that was but I knew it wasn't supposed to be there. So off to the doctor I went! Then he sent me to the emergency room for testing. Little did I know that I was going to be admitted to the hospital that day. Killed me. I personally don't like doctors, I'm sorry to all who are doctors on here (are there any?), but y'all scare me half to death. Got my first IV that day; boy what an experience. The nurse hit a vessel. -_- That hurt. All total IVs I got while I was there were 6 and I was there for 11 days. My veins apparently don't like IVs very much. The pain started becoming REALLY unbearable while I was there and it was like I was becoming worse or something. Not fun. At all. Funny story: They drew blood a lot and for some reason they liked to do it at about 4 or 5 in the morning. Well, when the nurses came in to check on me or whatever during the night they were all quiet. Not the blood lady! She would come in, flip on the lights and say a nice cheery, "Good morning!" before taking my blood. Oh yeah, she was a character that I soon learned to resent. Lol. Spent my 16th birthday in the hospital. That really stank. A few friends came to see me but the one thing I just wanted to do was see my pony, Madeira. I missed her like crazy. Eventually, I made it out of the hospital. YAY! Lost 15lbs in the course of 2 weeks; thought that was pretty cool. I like my new weight of 105 ( I am only 4'11" and a half tall) so that's a plus at least. Now, my question for all you UC peeps: WHEN DOES THE PAIN STOP?! I'm still hurting so badly and it is KILLING ME. Will the pain ever stop or will I have to live with it for the rest of my life? Because if that is the case, I really don't want to live anymore. Why did this have to happen to me? When will I be normal again? How can I get the pain to stop? UGH.

 

[rollinstone]

Hey buddy sorry to hear your feeling so crap, have you seen your GI recently? Once your on the right meds your quality of life should sky rocket and you'll feel back to normal. Infact seeing you've had such a hard time you'll probably feel better than you can remember. So hang in there. I remember when I felt really bad I wanted to die... Now I'm feeling pretty damn good and I'm not even all the way healed yet, you are young and you'll bounce back just fine, so chin up and hang in there.

 

[Jim (POPS)]

Hi Madeirey, I have crohns but my wife has UC and has for over 30 years. The first thing I want to tell you is that you WILL get better. Over the 30 years my wife has been sick about 3-4 years and the rest of the time she has been really good. She had a operation called a "J pouch and she was good for over 20 years. then she had another operation and she is good again, just kep your head up. You will get well so.

 

[Cross-stitch gal]

Welcome Sorry to hear you're struggling. I was diagnosed at 18, but began being tested for UC the summer I turned 16. Even as an adult, the pain you get is horrible. I thought mine would never go away either. But, with the right doctors and treatment things will start working. In the meantime, am sending you some hugs and a hope that things will start getting a little easier for you. Take care. :hug:

 

[sickinlk]

hi racheal,
im Julie. I have uc also.
what tests did they do in the hospital?
did they say where your uc is located?
what meds are you on?
where is the pain? ie in the stomach or the butt?
we can give you better answers once we know more about you.

 

[Madeirey]

hi racheal,
im Julie. I have uc also.
what tests did they do in the hospital?
did they say where your uc is located?
what meds are you on?
where is the pain? ie in the stomach or the butt?
we can give you better answers once we know more about you.

Hi Julie, they scoped me by mouth and the rear end to see if I had UC or Crohn's, they also scanned me to see how bad the inflammation was when I first arrived, they ran a lot of blood tests to check for anything and my blood count levels, a bone age test (not sure why...), and I think that is about it. The UC is located all in my large intestine and all the way through my colon. The inflammation is light on my right side then as it goes to my left side it becomes severe. I'm on Asacol, steriods (now oral at last), recently had to started the Remicade, folic acid, VSL3, tramidol for joint pain but I only take it as needed, Flagyl, and selibrx.
The pain is in my stomach but it is a LOT better now ever since I started the Remicade. It's almost nonexistent. Actually, as I type this, I'm getting discharged from the hospital!!! Total days here- 18. Really happy to be on the road to recovery at last. Remicade- a happy and sad decision. Not looking forward to being reliant on hospitals for the rest of my life, but hey, whatever keeps you healthy, right?

 

[sickinlk]

ah that's good news. 1 more success story for remicade.
ju

 

[jwfoise]

Hi Madeirey. Glad you are heading home and seem to be getting better.

Chronic diseases like UC are a pain (literally and figuratively). It sometimes gets you down that you are probably going to be dealing with this for the rest of your life. But usually, once you get beyond the crisis, and get on the right drugs, things are quite managable. Most days I hardly even know I have UC. Keep working with your doctor, keep educating yourself (this forum is a great place for that), and remember there are a lot of fellow travelers here going through the same journey.

 

[Kristen24]

Pain can come and go. The right medication should reduce it a lot if not wipe it out altogether while you're in remission (feeling well). For me personally I have a mild amount of gut pain that I live with every day but when I remember how bad it was when I was diagnosed in August 2012 it's not so bad.

I'm also on Remicade and go to hospital for a day every 8 weeks to have it. Not fun but there are positives 1) it keeps me well so I can stay out of hospital 2) I use the day to rest and chill out. Truth be told I fell asleep during my last treatment and they had to wake me up to kick me out!