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My daughter has just been diagnosed with Crohn's in June.  She suffered for almost 2 years until they found the cause.  Now the Dr's are trying to get her stabilized.  she is currently on 23 pills a day and  a vitamin B injection every 2 weeks.  She is seeing 5 different specialists (GI, hematologist, cardiologist (the crohn's took such a toll, her heart was affected), rhumatologist, & a dermatologist (she has lost alot of hair & it is still falling out). 

I have no one to talk to.  My daughter talks to me but I feel useless.  I listen, but I have no idea how she feels or what she is going through (except as a bystander). 

There are no support groups in my area or within 30 miles ( I've looked).  I am hoping someone in here can offer a listening ear and let me know I am not alone.

 Reply posted for michele2369.

You are not alone.  It can be very frustrating - especially for the mom's I think - because it is in our genes to nurture.  When we can't make our children feel better, or fix what is wrong, we feel like failures, but we are not.  Although hard to remember at times, our child/children need our unconditional love the most.  My daughter is 13

Anytime you need an ear, come to the forum, or send me an email

onedreamer@juno.com

 Reply posted for AZMOM.

This is a message for Claire's Mom.  I'm not sure how to email her directly.

I just noticed your daughter had an initial diagnosis of juvenile arthritis.  My daughter is 5 and was diagnosed with JA just prior to her 2nd birthday.  We are now in the process of trying to see if there is something else going on due to ongoing bowel abnormalities and a rare form of uveitis for her form of JA. 

What led to the hospitalization that got the new diagnosis for Claire?  What meds was she on for the arthritis?   Does she still see a rheumatologist or is the gastroenterologist the primary specialist now?

It's too soon for us to know what's going on with my daughter.  She had a fecal calprotectin test result of 600, so we were told the next step is for her to have a colonoscopy and endoscopy.  I plan to gather questions to ask the gastroenterologist, but was curious when I saw your daughter's initial diagnosis was JA. 

If you prefer, you can reach me offline at susanbing (at) live (dot) com. 

 Reply posted for michele2369.

Hello,

You aren't alone - I too have good ears.  My son was diagnosed 6 years ago with UC and was ill for 4 years before that. 

I just joined this site recently and I have to tell you I wish I had joined many years ago.  Most of my friends just don't understand - it has been comforting to relate with people who I know understand.

Take care & be blessed - Tracy

 Reply posted for michele2369.

My daughter is 3 was was diagnosed with ulcerative colitis when she was 1yr 1/2.  It has now progressed adn went from mild  to severe.  There are times when I am at my witts end because all I want for her like any other parent is to live the most normal life as possible.  Between all of the medications and trying this not that and not eating this or that, now I can count on one hand the foods she will or can eat becusae she is not use to being able to eat a variey of foods or nutrtitous fiber filled goods! I can understand where and why the stress is there and  I will say that there is no other support group like the support I have found from this site from others that witness these digestive diseases first hand.  I have also found comfort in reading"A patient-expert walks you through everything you need to learn and do" Chrons Disease and Ulcerative Colitis, by Jill Skylar.I even read forums or stories to my daughter about other people that have disease so she will never feel alone. I wish you the best- this too shall pass and you are never alone

sincerely,

devon

 Reply posted for michele2369.

Also- there is another support group called the Crohns and colitis social network. The forum facilitator's name is Jason and he is wonderful. He emailed me personally regarding some symptoms my son was having and was very helpful. He also offered his phone number. I have found that people with IBD and their families are more than willing to help. This is such a horrific disease that you can't deal with it alone.

 Reply posted for michele2369.

my son has had crohn;s since age 14-now 21- He was in remission until this past summer. At that time our whole world turned upside down. he went from being a collegiate athlete to not being able to do anything. It's been a nightmare.  Our GI dr "matched" him with a 17yr athlete with a similar situation. With our permission she gave his phone number to my son and his mother's to me. We have been in constant contact for the past 6 months and it has been a blessing. We call or email each other weekly and the boys talk online. At times I feel she is the only person who understands. I would highly suggest you ask your GI dr if there is someone within her/his practice that would be willing to exchange contact info. It really helps to have someone to talk to. I think it also helps for kids to sometimes reach out to someone else and take the focus off their problems.

 Reply posted for michele2369.

Your not alone.  My 15 year old son diagnosed in sep. 09, went through some of the same emotional problems as your daughter. I know it is frustrating.  My son didn't want to talk about how he was feeling everyday.  I think he became a little depressed.  He had missed so much school and was so overwhelmed in trying to get caught up in class, that we decided to home school for the rest of the year untill we know he is in remission.  As far as a support group is concerned, It might be a good idea to start one yourself.  I am thinking about doing that myself because I to have the same problem of finding something that is close and that is for teenagers.  Best wishes

 Reply posted for michele2369.

I wish you had a support group closer too but like Lizzie's Mom, I am here too and both my ears are open.  :-)  My daughter is 6.  She was diagnosed with Juvenile Arthritis at 3, had some acute neuro problems this spring and finally ended up in the hospital and diagnosed with Crohn's just over 6 months ago.  You and your daughter are in my prayers.....I remember vividly how desperate I felt and on occasion, still feel.  Let us know how she is doing and what we can do for you.  Also, I'd be happy to send you my email if you want to take this off the forum.

Take care......

Claire's Mom

 Reply posted for michele2369.

You are not alone and I have two good listening ears.   My daughter was diagnosed almost 6 years ago.....she'll be 10 in a few weeks.  This forum is a great outlet for parents / caregivers.   There is lots of information, helpful tips, and lots of empathy.

Over the past six years, we have now gotten it down to a "normal" routine and I can say now are faring pretty well.  No, it wasn't easy and took lots of time and patience.   Sure, we do hit a bump in the road every now and again, but that is to be expected. 

I know how difficult it is, especially in the beginning, and am more than happy to help you with this trying time

Lizzies Mom