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Posted 3/23/2010 4:58 PM (GMT 0)
Hello I am David Martin im 15 years old. im new to the site but not so new with ulcerative colitis. I have had ulcerative colitis for a little more than 3 years. ive recently started a double dosage of remicade because my doctor wants to avoid surgery. He said i should be alot better but instead ive gotten so much worse. I have a feeling that my immune system isnt working so well.. heh... Once i got my first double douse of remicade i felt alright aside from all the recent flares ive been having. late that night i started having a small cough. then next day it got worse and i started having more pains again. the day after that i tryed teling my parents that something was wrong but they keep saying that i just have to wait for the meds to kick in. another day later and im sick as heck, runny nose coughing and vomiting like crazy. Today my throat hurts really bad like someone is scratching it and it dose not help that im having to take pills and keep eating. ive had slight fevers from 99.9- 101.2 since 2 days ago. (ive been losing alot of weight again also.)
Posted 3/23/2010 5:25 PM (GMT 0)
David, welcome to HealingWell. You need to report your illness to your doctor, as some people do develop serious infections while on Remicade.

I know it's hard for parents to give up some of their control and let you help make decisions about your health. They want what's best for you, and they know we all make some bad decisions when we're young. (Well, some of us keep making them even when we're old, lol.) Please do keep the lines of communication open and try to approach it from a position of informing them and sharing your thoughts rather than getting into a control fight. They will be more open to your opinions and thoughts if it doesn't just look like "teen rebellion" to them.

Seriously, I think if I were your age and already taking a double dose of Remicade and still not getting into a good remission, I'd be thinking surgery also. I've been on Remi and in remission for 4 years, but if it stops working I'll certainly be looking into surgery. At your age, you're looking at taking one drug or another for a lot of years. New ones will come along, but they will also have their side effects.

Good luck to you, and please keep visiting us. I know some of our other members will have great suggestions for you.
Posted 3/23/2010 5:39 PM (GMT 0)
Thanks i actually was informed awhile ago from my parents that im going to be having a Colostomy Surgery? i kinda do and dont know what it is. ive been google-ing and youtube-ing for info so far found some interesting things.
Posted 3/23/2010 5:51 PM (GMT 0)

Hi David and welcome!

First, woudl you please change your screen name?  We like for members to not use their full names as their screen name for security reasons.  DavidM would be ok, or something totally off the wall is ok as well. :)

Second, the CCFA has a good (but very basic) overview of the surgical options for people with UC on this page:

http://www.ccfa.org/info/surgery/surgeryuc

I also think you should talk with your doctor about how you're not feeling well, and it sounds like you should have a chat with your parents as well, if they are thinking it's time for surgery.  Since there are different surgical options, you should definitely be a participant when it comes to choosing which option to take! 

Good luck, and ask as many questions as you need to.

Posted 3/24/2010 2:31 PM (GMT 0)
Thx
Posted 3/24/2010 3:22 PM (GMT 0)
Hi David, Welcome to healing well. I think you should call your doctor to at least keep him in the loop regarding your reaction to the double dose of remicade. I hope things start to go better for you very soon.
Are you on any other medications besides the Remicade? Which UC medications have you been on in the past, and for how long? Did any medication seem to work at first, but lost effectiveness as time went by?
Sorry for all the questions. My daughter was diagnosed at age 12 and we have tried just about everything with her. Her 7th Remicade infusion was a double dose and it made her start to bleed to heavilyand she had to go on a high dose of prednisone to control it. I'm just curious if you've been on other medications with similar results as she's had.
Posted 3/24/2010 3:58 PM (GMT 0)
@wishingtohelp

hello, umm i can give a list of meds and more info.

i started on prednisone for a rather long time but when i started cutting down i started to bleed again, so my doctor boosted me back up on it. we tryed cutting down a few times all the same results so i was put on remicade. during the time i was on prednisone i was also taking pentasa. i took 6 pills of that a day but no idea how that helped.

ive always been taking mercaptopurine as long as i remember but honestly i dont notice a difference with it.
ive taken viokase for about 3 years and its suppose to help when i eat. i take two viokase pills 3 times a day.

im currently taking lialda (mesalamine) and i take two pills of that once a day.

also im taking suppository once a day.

umm ive taken hydrocortisone a rectal thing but my doctor told me to stop taking it.


umm im not sure if thats of any help. any other questions fill free to ask.
Posted 3/24/2010 5:48 PM (GMT 0)
Thanks, David, it is always helpful to know what medications someone has been on! Also, you may want to check out www.UCandcrohns.org , it is a website for teens run by the ccfa and the starlight foundation, it is useful for resources (you may find info on camp there) and has stories and chat rooms for you to connect with other teens who have IBD. Best of luck to you.
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