Experiences, Opinions, and Feedback Please!

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beckxbecc
New Member


Date Joined May 2009
Total Posts : 13
   Posted 5/11/2009 10:24 AM (GMT -6)   
I'm a 15 year old girl with UC. I was diagnosed about 1 1/2 years ago and was put right on prednisone. When they tried to wean me off i flared up so they added another drug, mercaptopurine and when they couldn't wean me off the prednisone still they switched me to remicade in a drug trial but i was too bad for the trial and then when they doubled my dose i had an allergic reaction. So now i am taking humaria and that has stopped working also. I've been on prednisone since Feburary of 2009 and it doesnt even seem like i'm on it anymore. I see no side effects and i am still in a major flare up, i am losing about 1 pound everyday. I have never been in remission but i was stable for a while on the prednisone and mercaptopurine. I now have constant stomach pain and nausea, I have about 6-10 BM a day, plus once everyday i seem to just poop out blood. My parents and i have scheduled surgery for June 15th and we've been reading up about the surgery and everything that happens during and after. My mom is very hesitant to go to surgery because she feels that we havent tried everything yet. We havent done anything about my diet except eliminate fast food, popcorn, and nuts. I was looking for your experiences, opinions, and your feedback on everything that we have done so far. Do you think we are rushing into surgery? Should we look at diet more? My father and I are very for the surgery but my mother waffles back and forth, so anything you can add to our knowledge will help make the decision easier.

justjenjen
Veteran Member


Date Joined Nov 2003
Total Posts : 518
   Posted 5/11/2009 10:32 AM (GMT -6)   
Could you opt for a temporary ostomy and see if you can achieve remission that way?

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 5/11/2009 11:07 AM (GMT -6)   
i dont think you are rushing into it,if thats what you have decided then thats what you should go with. personally i didnt try everything available, becuase to me those were gonna only be temporary fixes and i was just always waiting on the other shoe to drop.
As a mother though, i can tell you that its very hard to watch your child be sick and the idea of your child having surgery is one of the scariest things in the world! My little boy had a tear duct opened, not dangerous at all, but he was out for alittle while, and i was terrified!!! And he was better within an hour. So i cannot imagine what it would feel like to know my child was going to go through a major surgery! And that is probably why she is hesitant to make the decision for sure. She just wants you to be healthy without you havign to go through a difficult surgery. It is hard, but its sooo worth it!
Have you let your Mom read these boards? that may help her, and Bratcats mom is really helpful on here, her daughter had surgery at 17 (i think)
good luck!

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 5/11/2009 12:57 PM (GMT -6)   
There are some teenagers here that have gone through the same issues, like summerstorm mentioned, maybe you could get in touch with Bennie/Bratcat or bella_lostmybag.

Let your mom know that we are here to answer any concerns she has...this is a difficult time for ALL of you...

I hope you find relief soon!

Post Edited (OHIO76) : 5/11/2009 1:10:25 PM (GMT-6)


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 5/11/2009 8:43 PM (GMT -6)   
I agree with the resection suggestion. That is a way to try to remove the disease, and see if removing the bad part from the body will allow the body to heal and perform like it should. I have to say that some folks are very successful, and others (like me) are not successful trying this route. I had several resections, but my CD kept returning and becoming more and more hard to control with meds. Do your reseach as you are. And, have your mom read this forum, and ask us Any questions or concerns. We would be happy to talk with her and maybe disspell some fears.
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 

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