Niece diagnosed with UC

Early stages of UC can be the roughest for SOME. I remember when I first got it I was hospitalized three times, and throwing up was part of it. While I have had times of being better or even worse I have not been hosptialized since in 15 years. I am not a doctor but I am just saying it could just be UC and the early rough stages are taking a toll, especailly on a young person who is scared.

My feelings exactly. Now they are talking surgery.

Whoa about the not responding for 3 days then surgery... In the year of my initial UC attacks, i was hospitalized once whe IV high dose steroids did not result in formed stool for 3 weeks- I say again weeks. Behind my back they were talking surgery at that point but then Stools started to form and the bleeding mostly stopped... A year and a half later, after some oral pred yoyoing, I entered a ten year med free full remission that woukd have gone on forever, I suspect, had I not used antibiotics for strep. So I think 3 days is not enough- it can take two or even three weeks.

She has been vomiting for 4 weeks now. Can't keep anything down. I would think even the meds are coming back up. Lost 17 lbs and was only 114 to begin with. Just feel they have missed something or not giving the proper treatment.

Wow...I totally understand your concern. I cannot believe she has been throwing up for 4 weeks! That poor girl :( She probably fell because she has no strength since she hasn't eaten in so long. I hope they are giving her TPN to keep her nutrition going. I hope you find some answers

Thank you all so very much for your information and advise. I have given the Cleveland Clinic info to
Kaley Mom

They did mention she may need to take insulin, because the meds are messing with the blood sugar. I've emailed
the Penn State info to my sister. Sure hope Kayley's Mom doesn't agree to surgery without exploring every other possible option.

In regards to the question about 3 days on steroids and needing colectomy.... here is the article. Another article (published 2006) mentions that the data has been confirmed.

http://gut.bmj.com/content/38/6/905.abstract?ijkey=da9c2642f72be73b561be49456d73f03fb2b5b99&keytype2=tf_ipsecsha

Without knowing anything about the situation I just wanted to say, first, that I'm sorry about your niece and hope she can be stabilized soon in order to be able to explore treatment options. When my daughter was diagnosed we were told that she was a slow responder to iv steroids at 5 days. At this point they were talking about remicade or surgery and we had a surgical consult. This is standard pediatric protocol - if there's no response to IV pred at 7 days it's considered failure to respond. I don't know what's happening to your niece and I'm hoping/assuming that she is getting TPN now. It's not completely unusual that she's worsening in hospital because she's in the middle of what seems to be a very severe flare and not responding to treatment. I am surprised that they have not tried remicade yet, as that's the other rescue therapy they use if the patient does not respond to pred. I don't know if she's started that and if not why not.
I do agree with others who have said that surgery might be the outcome if she's not given remicade or does not respond to it. In this case, it's very important that she's in the best possible place. If it were my child, I would be trying to move her to the Clevland Clinic, not because they will necessarily be able to prevent surgery (though they might try something like cyclosporin which is sometimes given if there's no response to pred) but because she will be in the hands of the best Drs in your area. I would want to ensure all tests be done to rule out Crohns as well - has she had an MRI? Pill Cam? Scopes with biopsies? Small bowel follow through? They can't be 100% sure of course but they should be doing whatever they can to rule out CD.
I hope she responds to some form of treatment but I do know that about 15% of children do have surgery at their first presentation. She might be in that group, and if that's the case, I hope she manages to get to a very experienced surgeon.

Her Mom's facebook post yesterday and this morning claimed she was crying a lot because she is in so much pain. They are talking IV med on Monday, which I assume would be Remicade.

She also posted a picture showing Florida Children's hospital was voted one of the best hospitals by US News & World Reports Gastroenterology 2012 -2013. Several people including my sister and I have suggested Cleveland Clinic or Mayo, but Kaley Mom seems to think this hospital is the place to be.

Thank you all for your concern. Will post when the situation changes. Hopefully for the better!

Sorry to hear about this. Many of us have been hospitalized for a week or more and we understand that it can be extremely stressful for patients and family members. However, it sounds like your situation is even at the worse end of what is in our realm of experience. I believe that the best thing you can do is make sure you have a couple doctors who you know are very competent and who you can trust to guide you through it all.

Second guessing specific treatments by individuals on a message board is unlikely to be constructive and in particular I think the suggestion by one poster of an "alternative" therapy in a scenario this serious is shockingly out of line. Regarding the question of the number of days of steroid non-response until considering surgery, I myself took more than a week to respond to IV steroids during my hospital visit but colectomy was not recommended and I have avoided surgery for the nearly 5 years since, so it is certainly not a given that surgery will be necessary after 3 days. There are different standards in the U.S. than in the U.K. and guidelines differ by age. However, it may be necessary in this case and there is no way for any of us to know. Best of luck to you.

Glad to hear that she's in a good place!