Having UC and Still Going

Juliana colitis at 14 years

I'm Juliana

Introduction:

My name is Juliana. I am 16 years old. I was diagnosed with Ulcerative Colitis at the age of 14 on my birthday in 2010.

Colitis Symptoms:

Bad stomach pains- come and go from time to time. Rushing to the bathroom soon after eating.

My Ulcerative Colitis Experience:

Hi, my name is Juliana. I am now 16 years old and was diagnosed with UC on my 14th birthday, August 30th, 2010. At first, everything slowly crept up on me. I had no clue what was going on and was very scared. I was missing school and just wanting to lay in bed all day. I couldn’t eat much, it would give me the worst stomach pain and i would be running to the bathroom. Finally i told my dad, something is NOT right. He brought me into the ER the night of my birthday, and i remember sitting in the ER room until 1:30 AM . Finally they transferred me to a different hospital and admitted me.

The first thing the doctors did was put me on oral medicine, and it worked… at first. I was taking tons of pills everyday just to get thru the day. Then all of a sudden they just didn’t work for me, so i saw myself in a flare up and back in the hospital. Then they tried Remecaid. That worked for about 14 months. I was coming in every 7 weeks to get a remecaid infusion , then it started going down hill. I was only making 6 weeks , then 5, then 4, and so on. At the end i was barely making it a week after getting the rememcaid infusion finding myself back in another flare up.

I had 2 options, i could either try humira which they said would just be another band-aid cover up and they didn’t know if it would work or not. Or i could get surgery. Being only 16 years old, surgery was a BIG deal for me. I was terrified.

I sat down with my family and talked it out and decided to do the surgery.

I was terrified going into the waiting room

right before my surgery.

Luckily both my mom and dad

were there to calm me down.

And before I went into the surgery room for 6 1/2 hours, the nurses gave me a little thing of red juice that is supposed to calm you down but it also makes you not remember a thing before time. So the next thing i knew, i woke up in the recovery room. I was really sore but they gave me tons of medicine to feel comfortable.

Having the colostomy bag sucked.

I hated cleaning it all the time

but i was anal about it being really clean.

The good thing, I never had to rush to the bathroom , I could just go to the bathroom whenever I wanted. And sometimes it made a farting noise that i couldn’t help, and i would just break out in a smile. (:

Only 3 weeks later, i had the colostomy take-down, which is where they take the bag off. I was so excited to get it off and that it was so soon. So i went thru my second surgery on December 30th, 2011. For that surgery I wasn’t as half as nervous as I was the first, so i told them i didn’t want the red juice and that way i got to see the surgery room and remember everything before they put me out. After that surgery i wasn’t as sore as the first either but they still had medicine to make me feel comfortable.

Getting to go home 3 days later, i could basically start a whole new healthy life. But come end of January of 2012, i lost my appetite completely. I didn’t eat for a week and barely drank anything.

Finally my dad had to bring me back to the ER

and i found myself in the hospital AGAIN!

I ended up finding out that i have pouchitis,

which is an infection of the J pocket .

I am now sitting in the hospital writing my story of UC getting pumped full of anti-biotics trying to heal me and get me back to that healthy life.

So there’s my story, if you have any questions don’t be scared to ask. I’m here to help anyone. Thank you. Have a nice day. (:

Colitis Medications:

Medications that have worked the best for me is probably rememcaid, even though it only worked for 14 months, when it did work i felt good. All the oral medicines to me were a waste of time, but then again you never know, every person is different.

written by Juliana

Submitted in the Colitis Venting Area

Tags: pouchitis

20 Responses to “Having UC and Still Going”

  1. AdamFebruary 24, 2012 at 8:47 am #

    Thanks so much for sharing Juliana.
    How was it living with an ostomy bag during school days? Did your classmates and teachers understand at all what you were going through? Were there any extra difficult situations that you had to go through?

    • Juliana
      Juliana SharpFebruary 24, 2012 at 1:11 pm #

      Actually, my parents took me out of school and put me on homebound, which means a teacher from my school would come over after she got off and help me with my school work. That made it easier on me and that way i didnt have to go through the torture that the kids would probably give me at school.

  2. KhidirFebruary 24, 2012 at 9:02 am #

    Be strong Juliana! I’ve been diagnosed with UC since 2008 and I’ve been on sulfasalazine eversince. But comparing what I’ve been through, you are a very brave lady! I salute to that. I will pray for your health. Keep Smiling my friend!

    Cheers!

    Ps: This message is all the way from Singapore. :D :D

    • Juliana
      Juliana SharpFebruary 24, 2012 at 1:14 pm #

      Thank you Khidir. Having UC makes me stronger and stronger every day. Ill pray for you also. (:

  3. BevFebruary 24, 2012 at 5:56 pm #

    Hi Juliana…What a story, huh?

    You are so young to have to put up with all of this. I was in my early 30s when I was first diagnosed. I’m an old lady now…48!

    Anyway, you sound like you are ambivalent about the surgery, meaning that you have found it has it’s good points, and it’s bad. You made a very mature desicion, and I think most likely a good one, in that you don’t have to suffer all of your life with pain, blood, urgency, and all of the other lovely things that come with this disease. Pouchitis is apparently SO common after this surgery, ao it’s nothing you did wrong. You probably already know that.

    Good on you, girl. I look up to you. Even though you are younger than I, I admire you! You are now, and will even more become, a wonderful, compassionate, and caring human being who has and will have alot of help to give to other people, everywhere.

    Thank you for being here with us!! Please let us know how things go for you. I just know that everthing will iron itself out, it just takes a bit of time. Surgery is no picnic, that’s for sure! I have considered it myself, but I always chicken out. What a strong girl you are. I am in awe…

    Cheers,
    Bev:)

    • Juliana
      Juliana SharpFebruary 26, 2012 at 12:31 pm #

      Oh 48 is not old at all. Your not old till you are at least not able to do much i think. If your still workin and moving along everyday, your still young.

      And im glad you said that. At first when i didnt know i had the pouchitis but was in all that pain, i thought having the surgery was a bad idea because i found myself in more pain after then i did before i had the surgery. But now that they have me on anti-biotics and calming down all that infection, im starting to feel alot better and not have any pain at all. So i am glad i went thru with the surgery. I was just that unlucky person that got the pouchitis. Then again how i look at it, i was that % that got the colitis, then i was that % that the remecaid didnt work on (even though they did tell me remecaid was not going to cure my colitis) and then i was that 50% that got the pouchitis. Im always the unlucky one. haha. but im used to it.

      And thank you, that actually means alot to me. I look up to everyone that has to go thru this like me just because i know how hard it is. And some people have is rougher then i do. And thats for sure, it does take time … alot of time. but im sure in the end, it will all work out in my favor and i know i have gotten so much stronger because of this.

      I think that you should go ahead with the surgery. What medicines are you on? In the end, you will see it was all worth it. I know its scary and nerve racking but trust me, it is totally worth it. I promise you that.

      Thank you, & have a nice day (:

  4. ZachFebruary 28, 2012 at 2:33 am #

    Hi Juliana, Im 25 and have had UC since i was 18. Literally no medications have worked, all been a waste of time. Putting bad drugs into my body. Have just seen a few surgeons in the last 2 weeks. Is it usual to only have the bag for 3 weeks? I’ve heard the normal time period is about 3 months? i may be wrong. I hope pouchitis isn’t to bad for you!
    Zach from sydney

    • Juliana
      Juliana SharpMarch 1, 2012 at 10:50 am #

      Zach,
      Well the surgen that did my surgery was really good. I had a friend that babysat for a nurse that worked with my surgen and she told me that if anybody worked on her child she would go to him. So i made sure he did my surgery. You should ask when you find out which surgen your going to. He believed that there was no point to leave it on for 3 months. Not only am im a red head and the sticky stuff from the bad which i had to change every 3 days, would eat my skin up. Its not normal for being on only 3 weeks, but he was so sure that thats all i needed it on for and it worked.

  5. MelissaMarch 1, 2012 at 6:25 am #

    You are amazing Juliana. You are too young to go through this but sound so mature about it all. Many teenagers do not even have an idea what we go through. How are you now?
    I am 46 and was diagnosed 3 years ago.
    Melissa in GA

    • Juliana
      Juliana SharpMarch 1, 2012 at 10:54 am #

      Melissa,
      Thank you, then again going thru all of this made me mature like this. I have no clue where i would be at right now if this didnt hit me 2 years ago. I’m doing really good now. Only going about 10 tims a day but its better then 20-25. and only 2 times at night, which is great!! And all the pain is finally gone. How are things with you?
      Juliana

      • JonathanMarch 8, 2012 at 2:45 am #

        Hey Juliana, how are you feeling now? Did the pouchitis clear up? Hope you are doing better!

        • Juliana
          Juliana SharpMarch 9, 2012 at 11:16 am #

          Jonathan,
          Im feeling WAY better, thank you. Im still on anti-biotics for the pouchitis but I can tell its getting better. (:

          • JonathanMarch 9, 2012 at 5:30 pm #

            Thats great! Are you back to regular activities and out of the hospital?

  6. Juliana
    Juliana SharpMarch 11, 2012 at 4:47 pm #

    Yes, finally out of the hospital and getting back slowly with activities.

    • JonathanMarch 11, 2012 at 5:56 pm #

      thats great!!! :)

  7. VickyMarch 20, 2012 at 9:49 am #

    Hello Juliana,

    Thank you so much for your story, it is amazing how similar it is to mine. I was diagnosed a little over 2 years ago. I have pretty much come to the end of my options with medications. I too tried remicade with no luck and am now doing humira injections every other week. My GI said humira was my last option before surgery. So it looks like I may be going down that road soon. I was wondering if you ever met with a naturopathic doctor or tried any kind of specialized diets like the SCD for example. I made an appointment with one for next week to see what other options I have. I feel like if I don’t try everything out there before surgery I will always wonder. Your story makes me feel a bit better about it if it does come down to it though, thank you again for sharing! I’m glad you are out of the hospital and on your way to feeling better, make sure you keep us all updated! :)

  8. Jasmine from England
    JasmineApril 11, 2012 at 12:10 am #

    Hey there i think your amazing for what youve done!
    Im 19 and ive had colitis for 2 years now and i still havent been able to control it with medications and they have recomended me to think about surgery now which i realy dont want to go through as i have a little one to take on so i think it would be hell for me but i think its great that its worked for you and sorry to hear you back in hospital its a pain isnt it im always in and out its awful being so young with it to i always felt like i was outa place every time i went into hospital :(
    best of luck ….all the way from england, east anglia :)

  9. GregApril 12, 2012 at 2:13 am #

    Props to you Juliana, thanks for sharing your experiences with everyone.
    I had UC at the age of 7 and after an additional two flare-ups (really bad because I waited 2 months before telling my parents, hoping/praying the bleeding would stop) I had the j-pouch (with 2 month ‘bag’, also home schooled. My parents wanted me to go to school and I was like hell no! I already went through the torment of steroid ‘moon’ face in 8th grade – not about to have fart noises come out of my stoma in class) and have had the pouch (no pouchitis though) for 16 years now (im 32 with wife and two baby boys :) While I think that the surgery is definitely worth it (seems like the drugs don’t work for most people and just add more problems), of course diarrhea (10-12 per day for me too) is the main problem we end up with.

    In retrospect:

    When they offered me the surgery at age 16 I was a bit angry because I wished they had told me sooner, I would have done it ASAP! Was frustrated that I had to take those steroids for so long. However, they had to be sure the meds wouldn’t work and I only had 3 flare-ups (albeit bad ones, made worse by my ‘hiding’ the bleeding from everyone for so long). I wish they would have monitored my hormone levels and hope they are doing that for kids now because my hormones got pretty out of whack and its kind of a miracle I have kids now. :)

    Also, I was unable to gain weight after the surgery due to the diarrhea’s effects on nutrient absorption (and loss of mineral, electrolytes, water absorption capacities of the colon). While this may not be a big deal for some, I was so skinny I wanted to gain weight, always was getting colds, had dry skin, etc. A BIG WARNING: BUTT BURN CAN TURN INTO ANAL FISSURES. The best advice I can give is to be extremely careful ‘down there’ because after training really heavy with weights and supplementing/eating more (which I know most wont’ end up doing but young guys may) I gained 15lbs. of muscle but then my butt burn turned into a anal fissure/cut. That is the most painful thing you can imagine because all your pain/pleasure nerves are down there and the cut reopens every time you go poop (a lot!). It took 3 months to fully heal (I lost 30 lbs from fasting in the fear of poop pain and hopes it would heal on its own) and I had to take pain medicine so I could eat/poop without pain.

    Well despite being more careful I ended up with 3 total anal fissures over a few years time (ages 25-28). The skin seemed to get weaker each time and the last one didn’t fully heal (anal skin tag/scar). So if I exercised to much it would get raw and very painful, almost leading to another cut).

    The story is long and I’ve had anal abscesses and now a fistula (solely from wiping/excoriation not Crohn’s or more UC) and after being a fitness trainer for 5 years I’ve now been on disability for about 3 years.

    So long story short: DONT GET A CUT FROM OVERWIPING. Use baby wipes or what I have found ever better is putting a gob of soft lotion on the TP first :)

    God bless, its nice to know there are others who have shared some of the horror stories I have :)
    After a while, I can only laugh at how horrifically ridiculous this disease is. But I agree that it was made me a more appreciative and empathetic person, it can only be viewed as a blessing which will make us and our lives more fruitful ;p But now that I have a wife and two little baby boys, I wouldn’t trade any of the pain/suffering back! Am truly blessed now.

  10. RicoJune 30, 2012 at 4:06 am #

    Hey Juliana,how you feeling now?happy with your jpouch?im going in on 7/6/12,any info would be great? Thanks Rico.

  11. Juliana
    Juliana SharpNovember 13, 2012 at 8:27 pm #

    Thank you everyone for noticing my story, sorry its been so long. I’ve been doing pretty good lately. Just got over a stomache bug and off of Flagile(anti-biotic). I finally got my bag off again in August of 2012. I can tell since the first time i got the bag off, that this time is way different and way better. Ever since August i’ve felt more better then i ever have in the last two years. Sadily getting sick always sucks but i managed to stay out of the hospital. Except i did get really down and depressed, and am now thinking about attending counsling. Its not easy to say but i’ve became addicted to pain medicine ever since all the pain meds they were giving me after surgery. I know taking them at an everyday level it can’t make my stomach any better than it is and can cause damage to my liver. Also thinking, the pills could be making me depressed when i don’t have them. Being 17 years old now. I decided to get help and tell my parents about the addiction. Talking to someone about it and getting help actually makes me feel better about myself. I know i didnt want to live like i was and it wasnt healthy. Thats the last thing i need is to go thru another big health issue.
    Thank you again for commenting, any questions let me know and can always e-mail me at julianasharp21@yahoo.com

    -Juliana

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