Hi, sorry to see things are not so good right now. Our local CCFA
group has some active people and some with children that have ibd, a
website that two sisters run that helps:

http://www.ibdliving.com/



--- In crohns_n_colitis@yahoogroups.com, "blueyedjuice"
<Blueyedjuice@...> wrote:
>
> Hello,
>
> I really need advice from anyone who can help me. I am writing about
> my
> 15 yr old daughter.
>
> My daughter Kristina, was recently diagnosed with Ulcerative Colitis.
> She just finished taking Flagyl for 2 weeks, currently on:
>
> Sulfasalazin 500 mg, 3 tabs twice daily
> Folic Acid 1mg, once daily
> Prevacid 30 mg once daily
> Shes on several meds for other medical reasons mentioned below:
>
> Kristy has been thru hell. Last August she was also diagnosed with
> Seizures, (Migraines as a result from the seizure) and also
> Psudeotumor
> Cerebri which is a fake tumor but she has all the sympotms of one b/c
> of the build up of spinal fluid in her brain, she is in constant
> migriane pain plus 100. Of course, before we found out about the UC,
> she has major stomach/abdominal pain, severe constipation, some
> bleeding. I had to take her to the Emergency room over 15 times last
> year b/c of all her symptoms. It came to a point where the doctors
> werent believing her and suggested me take her to a psyhciatrist. I
> know my child wasnt faking. She is currently missing her 2nd year of
> school b/c of all the pain she has been thru (and still is) and
> fatigue.
> She has been having better days b/c the seizures are finally under
> control, so it helps with the migraines. Her stomach still flairs up.
> I
> forgot to mention that Kristy has also been having major flair ups
> with
> physical joint pain. The rheumotologist says it wasnt Lupus or
> arthritis. She said it is Fibromyalgia but that diagnosis just didnt
> sit right wih me.
>
> We have an appoinment scheduled for this wednesday with the gastro
> doc.
> Please give me advice on what to ask the doctor. I have been reading
> several post and am shocked to know that UC can cause problems with
> the
> kidneys, joints and what else? I am trying to learn as much as I can
> so
> that i can continue to fight for my child. I hate taking her to the
> ER
> and the docs dont do anything hen she is in severe pain!! No pain
> meds
> NOTHING. She cries and doesnt understand why no one is helping her.
>
> With the symptoms I have described to you, what do u think? Is it all
> (except the seizures) related to UC? Should I ask for pain meds? What
> can i do to prepare for if I have to take her to the ER again. The
> docs
> wont help her....Any advice and questions you can give me to ask the
> gastro doc will be so helpful to me.
>
> One question that I have. On 3 occasions, Kristy has screamed b/c a
> sharp pain would hit her in the back (kidney area). The other day she
> was fine and suddenly she was in alot of pain in the same area, it
> lasted for about 30 minutes but then went away. She also had problems
> urinating, no UTI, she just couldnt pee. One of her meds was removed
> b/c it is used to help people stop peeing. I was wondering if UC
> affects any of those things.
>
> Thanks for reading my post. I really need support. Im happy we have
> diagnosis to Kristys problems but now I need to know how to fight the
> doctors in getting her theproper care she deserves. She shouldnt be
> in
> pain anymore. Two years is long enough!
>
> Julie
>