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My 21 yr old daughter has UC

Greetings to all. I am hoping to find some answers for my beautiful, 21 year old daughter. She was diagnosed in January 2011 with UC and was placed on mesalamine enemas, and then on the oral mesalimine (Lialda.)
These therapies did nothing and her symptoms quickly worsened. In May she had her second colonoscopy and the colitis had spread to 2/3 of her colon.
She was placed prednisone, but stopped taking it after three days because she started getting terrible heart palpitations and her hands and feet/ankles swelled horribly. Disgusted by the fact that the medicine didn't work (in fact she believes that the oral Lialda made it worse. We went to a new specialist yesterday. He would like my daughter to begin a combination of immunosuppressors and Remicade, or consider surgery. She is afraid to try them and has pretty much told me that she is hoping to cure this disease through her own natural methods.

She is now practially bedridden, too weak to prepare the little food that she is able to eat (while I'm at work,) and has lost over 30 lb. since February. We have been ordering a wonderful whey protein drink that she is able to consume, but everything else just doubles her over with cramps and then diarrhea. I honestly think that this disease has depressed her to the point that she doesn't care to live anymore and I don't know what to do. She is angry with me for not letting up, and angry at the world for getting this disease. Prior to this she was constantly on the go, working as a yoga instructor and personal trainer. She managed to graduate from college in May, even though she couldn't sit through the ceremony.

Any help would be greatly appreciated. I have heard great things about the Remicade. Has anyone had suffered side effects?
 

Lisa

Adminstrator
Staff member
Location
New York, USA
Hi and welcome to the forum - sorry to hear what your daughter is going through.

I have been on Remicade since the fall of 2005 with no really major side effects.....in fact, it is one of the best things I have ever done!

If your daughter is in that bad of shape, it may be time to get more involved with her health care - even to the point of having her admitted for further treatment. It can be very tough - as I know you don't want to see her suffering, but yet want her to be able to make her own decisions.....trust me - been there, made bad decisions myself in my own care,. but finally 'woke up' .....that was years ago, and if I had continued on the path I was on at the time who knows where I would be - possibly not here any more!
 

xJillx

Your Story Forum Monitor
Hi there and welcome my fellow Pennsylvania!

I am so sorry to hear about your daughter. I agree with pasobuff, you need to step in before this gets any worse. She should certainly bump up her treatment and start Remicade or similar treatment. Many have greatly improved thanks to these treatments. You must help her see she needs treatment and it is going to help her.
 

Ian

Location
London, UK
Hi there and welcome to the forum :)

Sorry to hear about your daughter's diagnosis, especially because she's had so much trouble with the medications. I've taken Remicade in the past and I didn't suffer any side effects at all. It could've been saline for all I knew. Except it wasn't, because it was like a miracle drug. I was bleeding profusely, had my first infusion in hospital one evening, and the blood was gone the next day! There are risks with all drug therapies for inflammatory bowel diseases but in most cases the benefits outweigh the risks. Everyone's different though, so it really comes down to the individual and I can understand her doubts and worries. No one WANTS to pump toxic drugs into their body, you just do what you have to. Take a look at the Remicade sub-forum for more information:
http://www.crohnsforum.com/forumdisplay.php?f=58

As for surgery, it's never ideal and again, no one WANTS it, but with Ulcerative Colitis a colectomy is essentially 'curative', so it can be a very desirable option if/when things reach that point. Hopefully though your daugher can find something that works for her so she doesn't have to consider this, at least not for a long time :)
 
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