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New Member

Date Joined Aug 2007
Total Posts : 2
   Posted 8/23/2007 12:49 AM (GMT -6)   
My son, only 11 years old, who has complained of tummy troubles for more than 2 years now, was diagnosed with Crohn's yesterday. He had the endoscopy and colonoscopy at 8am, yesterday morning.
I am heartbroken.  He is a sweet, shy, loving, amazing athlete.
I let other people (doctors, his father, school teachers) tell me his symptoms were psychosomatic for 2 years.  He has some learning issues, most likely from a congenital condition that was corrected just after he was born.  Reading is so hard for him and he hates going to school.  We thought his symptoms were caused by anxiety.
He is smaller than normal. Tiny, skinny, long limbed and bony.  He loves to play soccer and baseball and basketball.  He loves his older brother and 3 younger brother and sisters.  I am a little lost and not sure what to do, now, for him.  I basically ignored his pain and suffering and he has not been growing properly.
How do I ever make up for that?  What do I do for him, now?

New Member

Date Joined Aug 2007
Total Posts : 8
   Posted 8/23/2007 1:09 AM (GMT -6)   
I am glad you came to this forum. I am very sorry to here about your son!! I am new here myself but have had crohn's for about a year and 1/2. went undiagnoised for about 2 years. The one thing I learned was that it can be a very difficult disease to diagnose. I hope you have found him a good GI doctor. They will be able to direct you in the best course of treatment. I've also learned not to take just one GI's word as gospel and do alot of online checking for myself. I know this web site along with others are a great source of info. There appears to be a alot of people here who will be able to give you great advise. I will keep your son in my prayers.
Diagnosed with Crohn's spring '06
taking-Asacol 4 tabs 3 times a day
Imuran 50mg 1 a day to start
Humira 40ml injection 1 every 2 weeks
Hydrocort @ night -fun stuff
Currently on Prednisone burst for RA flareup

Regular Member

Date Joined Apr 2005
Total Posts : 133
   Posted 8/23/2007 4:27 AM (GMT -6)   

Welcome NuNusmom - I am so sorry to hear about your son.  I know this is a very stressful time for your family, but try not to be too hard on yourself.  It sounds like you have been trying to get to the bottom of your son's tummy troubles for some time now and for many people here, it has taken years and years for a diagnosis.  As a mother with Crohn's and a large family, I know how hard it is for me to deal with stomach aches and not think, "Oh no, it's a stomache ache, it must be Crohn's!"  Of course, it's in the back of my mind and my husband is always telling me to relax.  How were you to know that it was more serious when doctors etc. were all telling you it was anxiety?

You are blessed to have a diagnosis, and now you can educate yourself and work with the doctors to get your son back to better health.  This is a great site for information and support.  BTW, I have a friend whose son was also diagnosed around 11.  After finding a treatment that worked, which did take some time, he is now a strong, healthy, energetic 15 year-old who has grown by leaps and bounds.  I pray your son will start feeling better soon.

Veteran Member

Date Joined Mar 2006
Total Posts : 1169
   Posted 8/23/2007 7:31 AM (GMT -6)   

It is very, very common for Crohn's patients to have delayed diagnosis. This is a disease that mimics a lot of other conditions, like irritable bowel syndrome and stress-related problems. I imagine if you took a poll of all the people who post here, you would find an average delay from onset of symptoms to final correct diagnosis of from two to five years, with some going a decade or more.

You "make it up" to him by educating yourself about Crohn's and suporting him on matters of medication and diet, so that he can live as well as possible with this disease. You also recognize that it is NOT fatal and need not dramatically impact his life long term. Frankly, given the option, I'd rather have had a diagnosis of Crohn's at age 11 than, say, diabetes or cystic fibrosis or juvenile arthritis. I know ti may not seem that way right now, but there worse things to have.

Sad Mom!
Regular Member

Date Joined Aug 2007
Total Posts : 58
   Posted 8/23/2007 9:50 AM (GMT -6)   
I just want to tell you that I also have a son (21 years old) who was diagnosed with Crohn's this month. I took it pretty hard, I felt that it was my fault since I game him his genetic, I must had given him the wrong combination even if nobody in my family has this darn thing. I had done so much reasearch trying to figure out what was wrong, since I could not sleep anyway. After his diagnosis, I started reading this forum and others but I always came back to this one (the best one, in my opinion). MikeB was the 1st person who answered my post and reassured me. To be honnest with you, I think not knowing what was wrong with my son and him losing weight, hair, feeling weak was more scary than finding out what was wrong. During the time they were trying to figure out what was going on, I had a borderline depression, was not able to eat, sleep, I lost 30 pounds in a month. For me, as weird as this may sound, we had a name for what was making him sick and Like MikeB tells you here, once you know, then you could start educating yourself and help him into making the changes that need to be made. As moms, our children need us to be strong and confident that everything will be okay, because only then they believe that they will be okay.

Veteran Member

Date Joined Sep 2006
Total Posts : 2527
   Posted 8/23/2007 10:13 AM (GMT -6)   
Welcome to HW, I too was diagosed at a young age, I was 8. I have had CD now for 20yrs (diagnosed anyway symptoms 3 yrs prior...mainly C anf joint pain). My pediatric GI made me drink 2 ensure plus drinks a day plus 3 meals once I was off TPN and able to eat again. You may want to talk to your GI about nutritional suppliments being that malabsorption is a big issue with CD. I also tend to suffer severly from joint pain, which can also be part of CD as can many other things you can find more info about CD and other issues that CAN but not always accompany CD at

My family also thought I just didnt want to go to school, then Christmas break came and I was still having the same problems (and the D started) luckily from the main onset of symptoms I was Dx in a couple of weeks. Hopefully your son can be managed on meds and hope to one day to go into remission...some remissions last longer than others, mine was 1 year.
Dx with Crohn's 1987, symptoms as early as 1984.
Temp iliostomy February 2007, reversed June 2007, Ovarian cysts, migraines, allergies (incl food allergies) , oral allergy syndrome (diff than true food allergies), Asthma, Gall Bladder removed 1999, Inguenal hernia 1987

Regular Member

Date Joined Jul 2003
Total Posts : 481
   Posted 8/23/2007 11:02 AM (GMT -6)   
My little sister was diagnosed with crohn's when she was about 11. She had also been having trouble for some time and was small and incredibly thin for her age. Her doctor was able to get her crohn's under control and she outgrew her two older sisters! She went about 6 and a half years after her crohn's was initially brought under control with very little problems at all. She was active throughout middle school and high school, a complete over-achiever! So, I hope this story can give you some hope for your son. Good luck! I hope things go well for you and your family!

New Member

Date Joined Aug 2007
Total Posts : 2
   Posted 8/23/2007 3:59 PM (GMT -6)   
Thank you for all your suggestions, advice and experiences.  I was feeling so guilty for not seeing all his symptoms for what they were and so overwhelmed by trying not to show how upset I am seeing him in so much pain...  I just lost it last night and poured out everything I was feeling to my husband, who reassured me that no, I am not a horrid mom, but reminded me that there is a whole lot of work to be done for our little guy.  He is having an upper GI series Monday, then a follow up with the pedi gastro guy, who appears to be very invested and caring. 
My son's father picked him  and his older brother up this morning to go to the concert in Mass they have been planning for months to go to and I am doing a whole lot of research.  Full speed ahead to getting the info we need to deal with this constructively.  

Live Well    Laugh Often    Love Much
My beautiful son has Crohn's Disease.

Veteran Member

Date Joined Oct 2004
Total Posts : 3932
   Posted 8/23/2007 7:30 PM (GMT -6)   
Just adding my welcome as well, so sorry you have to be here.

On a hopeful note, many people who have CD in their teens, have delayed growth spurts ( I did, didn't start getting my real height unti nearly 20 years old) so he may actually grow considerably in the future, and not be so small & skinny. Here is to hoping that is true..


Veteran Member

Date Joined Mar 2007
Total Posts : 4527
   Posted 8/24/2007 6:29 AM (GMT -6)   
Hi so glad you are searhing into your son's future and the knowledge you find will help him a person needs to be aware of CD's problems.There are many drugs that help and a dietician can help direct you on foods a low roughage diet works good for me no seeds,nuts,or raw veggies and well cooked veggies.There are many meds that also help and the ensure is great to help when he is skipping meals and not feeling the best all these things have helped me get better stronger and not having daily pain. I am feeling good now and your son will improve too.Don't beat yourself up Cd is not that common so usually it is DX with IBS so you are fortunate to know so you can get him the help he needs.Welcome and let us know how things are going we are always caring here and you will not be alone again when there are people here who know what it is like and understand. lol gail
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