My story.

Hello everyone and thank you all for sharing. My daughter is recently diagnosed and while she is an adult - I am doing what I can to educate myself - I am so sorry that this horrible syndrome exists. I respect each any everyone of you for what you deal with each day, god bless.

Hi Baw's mom

Welcome to the forum!

This is a great site to learn from, and there are plenty of parents on here with children who have IBD.

How is your daughter doing? Is she on particular medications?

Please feel free to post any questions you might have in addition to the various threads I'm sure you'll be reading along the way.

Cheers,

Kismet

Hi Baw's mom and :welcome:

I'm sorry you had to find your way here but on the up side it is a fab place for info and support.

Would you like to give us a little morwe information about your daughter? When was she diagnosed, location of the disease, medications...

As Kismet has said, we have a parent's forum and it is located here. Feel free to have a browse around the forums and if you have any questions please don't hesitate to ask.

I wish you and daughter all the very best. Good luck and welcome aboard!

Dusty. :hug:

Hi and welcome! There are many parents like you on the forum. I think it is wonderful you want to educate yourself on the topic. This will greatly help your daughter knowing she has such a great support system.

I hope whatever treatment your daughter has started is working, and she starts to feel better soon.

Thanks

Hi Kismet, Dusty and Jill,

Thanks for the welcome. My daughter was diagnosed in May. We are not sure where the majority of her inflamation is, she was diagnosed primarily via lab work (CPR was 769 with elevated zed rate, platelet, and white count). She has had two c-scans but the GI doctor is not putting a lot a faith on either one because she can not drink the prep fluid. Both scans showed strictures, a fistulae and and absses. She was on prednisone 40 mgs for a month while taking cipro and flagyl. She took the two antibiotics for 6 weeks and then started Remicade (2.7ml) ankd she is now on 6-MP along with Remicade infusions every 8 weeks.
She was very sick - hospitalized due to severe anemia and given two units of whole blood, lost a lot of hair and droped down to 81 pounds before being diagnosed. Her hair started to grow back in while on the prednisone and antibiotics but she is losing it again while on the Remicade and 6-MP. She has gained weight and is now up to 97 pounds with the introduction of the 6-MP she is able to eat a greater variety of foods (she does not eat meat, seafood
or eggs). I can only imagine the road she has ahead of her, we think stress was a major contributing factor to the severe flare she went through and worry for her. How will she handle the stress of college and work not to mention the worry of the other significant side effects (cancer) from the two medications. Suprisingly, her B12 levels have been great throughout this ordeal and she does not suffer from "D" but rather pain and discomfort.

Your daughter has been through so much. There is a very mental health aspect of this disease. Its a lot of take it. We often put our mental health on the sideline when trying to get better. When she has a moment, it may be worth it to get some counselling. I did about 6 months of intense therapy after my last bad flare in my early 20s and it helped put me on the road to recovery. I was able to accept myself and become accountable for what I could control, and move on with my life.

Its sounds like her disease may be in her colon. Mine is and no matter how bad I flare my B12 is good, because my small intestine is unaffected. I also dont get D much, but a lot of burning pain cramping and inflammation during a flare. This disease affects us all a bit differently.

I have had my fair share of time in the hospital, but it can get better. Keep trying.

Welcome Baw's Mom! Good for you, learning all you can to help her! Hopefully, you guys will find what works for her and life will return to some semblance of normal!!

Somewhere on here, Dusty has posted a great article concerning the meds and the added risks. It really puts the risks into perspective and helped alleviate my own fears about having my son on his meds. Hmm, where was that?

I'll put Dex out of his misery...

http://www.ccfa.org/webcasts/Risk%20and%20BenefitsTranscript.pdf

I can't take the credit though, Brian's Mom posted it!

Dusty. xxx

Thanks Dusty...and Kathy!! I'm so used to giving Dusty all the credit that it never occurred to me it may have been someone else!!