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I apologize in advance for my long post.  Thanks if you make it to the end.   I am so relieved to find a place to share my emotional struggle with all that has been happening in our family.  I was never a nervous new mom when I brought my son home from the hospital as a baby but now I am learning what they might have felt like. I am feeling lost and overwhelmed.  

Our 15 year old son  has Crohn's Disease - diagnosed a week ago.  There is no family history of IBD.  While in some respect it is a relief to finally know what has been making him so sick,  it is very disheartening to learn that he has a chronic illness that he will have to live with for the rest of his life.   After reading so many personal stories of how long many suffered before receiving a diagnosis,  it makes me realize how lucky we were to only struggle with this for about 8 months. To make matters even more complicated,  we also learned that our son has Lyme Disease as well.  It is not an active infection but still something else he will have to deal with for the rest of his life.  

 Reply posted for jcraig007.

Thanks everyone.  Mitchell is starting to feel better and I am definitely someone who reads as much as possible about everything,  it seems there is no single thing that will work for my son - lots of conflicting suggestions, treatment options and opinions out there.   I am taking it slowly and following doctors directions to start.  I appreciate hearing what has worked for your children and will keep all that information in mind as we wade our way through this whole process.

Happy new year to everyone and hope it brings wonderful things for you and your families.

Randi

 Reply posted for Fechter99.

My daughter had been sick from infancy, and finally diagnosed with CD @  4.    She will be 12 Jan 7 and is doing well.  I know how overwhelmed you are.....it is all so new.  Things will get better.   

Look into Camp Oasis.   Liz has gone for the last 3 summers and can't wait to return this Aug.  Information is listed under the Kids/Teens tab.   It is the best thing you can do for your children.   It is 5 days away that they can be with other children that all share one thing in common...IBD.  I think Liz feels she actually fits-in.   It is hard for me as a parent to send her, but after much thought it would be so selfish of me not to.   

We have found substitutions for almost every food (not for nuts).   Try Pirate Booty.   They are baked puffs that are gluten free, do contain a slight bit of dairy, but I do know of a UC lactose intolerant child that loves them.  They also offer Smart Puffs which is a "Cheese Doodle " substitute and Tings which are also a crunchy snack-type food.    ***I'm just making a suggestion of what works here, no need for "critics" to over-analyze the label. ****  Just thought I'd let you know, movie night has always been big in our house, and Popcorn went hand=in-hand.  

Do your research, start a food diary, and eventually what seems to be a never ending merri-go-round will come to a standstill and you will have  a new "normal".
Let me know if I can be of any help.   I've been at it for too long, and unfortunately have experienced a number of set backs / ups/downs.

Lizzies Mom
 

 Reply posted for Fechter99.

Hi there,

Although my son is much younger (he is 7 now but was diagnosed at 2 with Ulcerative colitis) I can totally relate.  We are in the midst of another flare right now and it always turns my world upside down.  I, like you have had a very hard time dealing with the fact that this is something that will never go away.  Thankfully we have this forum to go to for support.  A really good book to check out as far as diet is "What to eat with IBD" by Tracie Dellasandro.  It was very helpful to me.  I have to say, I think its sometimes harder on us parents than it is the kids.  Although my son has a hard time when he is in pain I think the biggest problem for him is not being able to eat certain things, one being popcorn like your son!  Good luck with everything and know that you can always turn here for support 

Sandy
(Conors mom)

 Reply posted for Fechter99.


I have lost some faith in one of the pediatricians that has been treating my boys (I also have an 11 yo) from the time they were toddlers.  He tried to brush off the prolonged stomach cramping, loss of weight, fevers and extreme fatigue as viruses, a sleepy teenager, etc despite abnormal lab results.  I felt it in my gut that there was more.  It was sheer luck that one of the other doctors saw us when my son was complaining of heartburn pain and suggested we go see a GI Dr.  We took him to CHOP and are so glad we did.  While it was a whirlwind, we had a confirmed diagnosis & began treatment in just over 3 weeks.  Luckily, despite spots in his stomach, small intestine and large intestine,  none are severe and GI believes we caught this very early.   He is on Pentasa & Prevacid  and starting to feel better.  We are cautiously optimistic that he continues to improve.  


I am struggling with the emotions connected with not knowing what to do for him,  when he is hurting, what will make him hurt more and knowing that there are huge challenges down the road for him and for us to help him get through.     He has a goal of going to the Naval Academy and now I fear that the IBD will prevent him from doing that.  My husband and I have not talked to our son about this because we don't know for a fact and he has had a lot to absorb already.  

Amazingly what really upset him the most is learning that he can't eat popcorn or nuts for the rest of his life - two of his favorite foods.  Once he learned why,  he understood but it still made him really mad.

My son is a wonderful person, funny, smart, quick whit and a pleasure to be around and who, despite being a teenager, still likes being with his mom and dad.  I just want to make sure he gets everything he needs to continue being that same person.

Randi