Community Forum

Hello,

   My daughter Emma is 15 years old and was diagnosed with Crohn's Disease in Oct. of 2008.  Emma presents mainly with abdominal pain and fatigue.  She was diagnosed based on a colonoscopy with biopsy (and 4 opinions!!)  She has had an upper GI with small bowel follow through and a CT scan, both of which looked good.  She has been on Pentasa, Entocort and two Remicade IV infusion treatments, however she continues to have severe abdominal and now back pain.  Does this story sound familiar to anyone?  She has had diarrhea one time, she normally has bm's every other day. We feel a bit confused about this diagnosis, but are going to the University hospital on the 26th of February. 

    I would love any input!!! This has been very frustrating for our whole family.

                                    Thank you,

                                     Lorie  (Emma's mom!)

 Reply posted for Lorie.

Hi there. My son was diagnosed at 11 with Crohn's, and two years later, I still share your concern and confusion. This sight seems to be helpful, so it looks like a good thing you started here. My son presented with about 3 weeks of bloody diarrhea, agonizing belly pain, and a 20 pound weight loss in that same three weeks.Wow, that was scary! He eventually stabilized but just finished one ofthe worst flare-ups since his original diagnosis. the confusing part is that this stuff looks so different on each person. Has your daughter missed a lot of school?

Because I feel so powerless in a way, I'm determined now to find out everything I can do nutritionally to help him stave off the next flare-up. From the beginning, we've done the expensive probiotics and fish oil capsules and a great multivitamin.My next thing is finding him some counseling, because all of this seems to be affecting his self-esteem and social life. Keeping his sadness and anxiety controlled can only help, I guess.

Good luck to your daughter and to you.

 Reply posted for Lorie.

Hi Lori,

My son (15) was diagnosed last year with Crohn's.  I have managed after much time and money to control his disease through diet and re-testing his stool.  After 6 months, symptom free with no drugs, he has had a flare-up.  He is gluten free and dairy free, as well as doing heavy nutrition (probiotics, iron, etc)  My GI doc thinks he has a flare up due to the flu he caught last week.  He said sometimes allergies, flu, something you eat, etc. can cause flare-ups.  My next step is to have him fully tested for allergies (both food and environmental)  Please let me know if I can help you in any way.

Marina 

 Reply posted for Lorie.

Lorie - Emma's abdominal pain is something that all of us experience who have Crohn's disease.  It is usually the first sign of a flare up coming on.  Her fatigue may well be due to a low iron level (anemia) and possibly not getting enough potassium in her daily routine.  (Try a banana, a large glass of Low Salt V-8, or a large glass of orange juice each day.)  I take a daily folic acid tablet and get a B-12 shot once a month to help with the anemia.  I have seen others on this community board refer to pain in the lower back, but it has not been a symptom that I have experienced in my 45 years of managing my CD.  I take Humira, not Remicade; but I suspect that it may take another infusion or two before it starts to help her.  I am also on Pentasa and Entocort EC for the past few years, and they seem to be doing their job.  Entocort is a systemic steroid that targets its release at the distal end of the small intestine, where a majority of CD patients are inflamed.  I am told that 85%-90% of the drug stays within the intestines, unlike prednizone, a systemic steroid, that meanders all over the body. (Like aspirin, prednizone can be a real wonder drug for a lot of different conditions; unlike aspirin, it has more than a few uncomfortable side effects.)  I think your choice to go to a University (teaching) hospital is an excellent one.  My original diagnosis was done at Ohio State University hospital at a time when few doctors were diagnosing CD.  I have always been thankful that they got me off on the right foot with managing it.  Best of luck to Emma; and the rest of your family, as well.  There is a lot of great research taking place with CD.  Emma's age is on her side when it comes to the long-term management of this disease.  My doctor told me that the younger you are when diagnosed, the easier the road you have to travel. - Bob