----- Original Message -----

From: Patricia OBrien

To: crohns_n_colitis@yahoogroups.com

Sent: Tuesday, March 18, 2008 6:18 PM

Subject: Re: [crohns_n_colitis] newbie intro (long) need advice

Julie:  I am sorry that your daughter is having such a tough time which is also stressing you out.

 

I would reread your e-mail and ask the gastro doc if these health problems are related to UC.  Like Babe says, write everything down that you want to ask te doc.  I would also have all of your daughter's meds written out as well. 

If you wind up not liking this doctor, look for another one and also tell him how you and your daughter feel other medical professionals are making your daughter and you feel like everything is in your head.  

 

I used to think I was a hypochondriac (I have no idea how to spell that) because there seemed to be so many things wrong with me.  I would ask the doctor if Iwas right to go to the ER and tell him before I mentioned all the things that were bothering me I would say things like, "You are probably going to tell me I am a hypochondriac but...."

 

My gastro doc told me I was right each time I went to the hospital and that I was not a hypochondriac and that I should contact him often to keep him in the loop with what physical problems I was having.

 

Best of Luck to you and especially your daughter.  Let's us know how your visit to the Gastro doc goes.

 

Patt
A Busy Child Daycare & Preschool <babs@thechildcaresearch.com> wrote:

Julie, I am sorry to hear that your daughter has this disease. I am 31 years old and just couldn't imagine a child having to deal with it. I was diagnosed with UC in 2004, have had several hospitalizations including a pregnancy (hospitalized during that too, flaring). I have a lot of joint pain and even carpal tunnel that is associated with UC. I don't think ER doctors are very knowledgeable about the disease, generally when I go to the ER a doctor from my GI office will come in and see me periodically through my visit. Does your child have a regular physician? Has she had a colonoscopy and a firm diagnosis from her GI doctor? If you haven't gotten this yet, be sure to find one soon. Has she been admitted to the hospital? All my ER visits landed me an extended stay constituting visits from my GI.

 

This past summer I was diagnosed with autoimmune hepatitis, another autoimmune disorder. Apparently, the risk for autoimmune hepatitis increases for females with UC. I would write a list of questions to ask the GI, that way you do not forget to ask them. Make sure he is patient with you and willing to answer your questions to the best of his knowledge. Good luck, and again I am sorry that your daughter has to endure such a terrible disease.

 

 

Babette

 

 

 

----- Original Message -----

From: blueyedjuice

To: crohns_n_colitis@yahoogroups.com

Sent: Tuesday, March 18, 2008 9:19 AM

Subject: [crohns_n_colitis] newbie intro (long) need advice

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