Thank you all so much for your feedback. I know it's awful to know so many people have to go through this but I am thankful to hear that it is manageable (hopefully without meds or as little as possible) and I'm not alone. When I try to talk to friends and family about it I get the "What the heck is that?" response which makes me feel so isolated and alone on this. So I'm very appreciative for you all. I will be getting the books mentioned as well as the diet info to try as well. These sound like a great place to start and hopefully give me more understanding of this awful disease. I wish you all good health and good health for you loved ones.
I'm so sorry 2 hear about your child I have had my disease now 4 24 years I was diagnosed when I was so sick and under weight with alot of pain I was 10 when my symptoms first started,,,I know its very overwhelming 2 get all this info chucked @ u @ once its scary and the not knowing is even worse,,,Lets pray that this little girl finds the answers she needs and u as well,,,I would contact a good GI one that is easy 2 take 2 and up-front,,honest,,and there just 2 answer your questions...My mom had a hard time dealing with my sickness @ first that didn't change much but now she is really informed and that helps me from having 2 x plane myself endless times and they included her in ever step cause she felt so helpless as u said but all kids sick kids really want is mom 2 tell us we r going 2 b ok,,my mom rubs my belly when I'm in pain and get cool face clothes 2 lower my fever just b there I'm now 35 years old and I call my mom not my husband 2 travel 4 hours into the city 2 c me cause my local hospital transfers me 2 an out of town hospital and its always late at night like 11pm ans if she can come in the ambulance cause she has work in the morning she calls in first thing in the morning and b there with me by 8am no later and she stays right in my room with me she either sleeps with me or a hard old cot the TV room in a broken chair or the Point Pleasant Lodge which is 4 people with low 2 moderate incomes cause it gets expensive 2 stay in the city sleeping/eating and traveling its a great organization,,they also have a shuttle 2 take u back and forth and anywhere else u need 2 go,,I felt better knowing she was there and getting her rest at night and not waken every time they came in to give me a needle or do my vitals....JUST B THERE MOM TAKE CARE OF YOURSELF FIRST CAUSE WE NEED YOUR STRENGH....))))hugs(((( <# <3 <3 ~jEN~
Had Crohns 17 years had numerous bowel resections,fistulas,fissures,hemmies,kidney problems,fibro,arthritis,dignosed at 13 had GI feeding tube,nasal feeding tube,cental lines,ports,4 ruptured bowel emergency surgeries,TMJ,depression,current meds are Hydromorphone,30 ,Hydromophome,8 ,Ketoprofen,100 ,Trazadone,50 ,Lorazepam,10 ,Zopliclone,5 ,atriplyine,75 ,Losac,50 Tylenol Athritis ,B-12 injections ,Iron injections ,Gravol,75 Predisone,5mg ,Humira,40mg once a week.Still looking for the doctor with all the answers if you find him forward him to me please.P.S my bathroom is the nicest room in my house cause i spend so much time there,i am thinking about installing the computer and maybe a hot-dog stand.