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Hi everyone. My daughter turned 5 in June, and 9 days before her birthday, she was diagnosed with non-specific colitis. Her doctor said he did not want to give the UC diagnosis yet because it could cause problems with insurance. She has been bleeding daily since Sept. 7, 2009 until just recently (except for 40 days in early 2010 when she was on Flagyl and Apriso).  The two specialists we have seen kept saying that they thought it was C-Diff or giardia bacteria and not UC, but now we have this new diagnosis. Is there any chance that it could still be a bacterial infection? Has anyone else experienced this switch in diagnosis?

She has had 2 colonscopies, an endoscopy, and a video capsule for the small intestine.  The colon was inflamed severly in Oct. 2009 and after being on Apriso (5ASA) on and off for several months, the colonoscopy in late April 2010 showed mild inflammation.  The video capsule showed mild inflammation of the villi in the small intestine, but the doc said it was of no importance. She began having some pain in early April, but it is not crippling pain. My husband and I are so frustrated and worried. All this began with a single day of diarrea. The next day we saw blood, and it has been ongoing since then. I'm sorry this is such a long post, but I am to the point that I had to reach out to someone besides the doctors. Thanks for any input you may have.  

 Reply posted for BamaBelle.

I agree w/the previous posts...Knowledge is Power...I have watched the web podcasts available online. When Victor was diagnosed last Jan they told us C-diff could be the cause...we were in denial of what it really was...it is scarry and we cried ourselves to sleep when we finally accepted the UC diagnosis. But as a family we have pulled together for Victor and though we still trying to see which meds work (he is currently on 6MP) we have hopes that one day in his lifetime they will find a cure or a sure rememdy...

Best of luck and many hugs to you and your child!

 Reply posted for MBowmanMurphy.

I am so sorry to hear of Christopher's diagnosis. If you're like us, you don't really want to believe it's true.  Thank you for reaching out to me. My daughter has finally gone into remission. Her appointment this week with the doctor went well, and there is no blood in the stool--not even microscopic amounts. Labor Day will be a year since she started bleeding, so it had been nearly a year before we got this under control.

I pray that your son will get well and that any treatments you use will be effective in controlling his UC. You should definitely learn as much as you can and be as educated as possible; it has helped me cope and given me a sense of empowerment.

My daughter started Kindergarten last week, and she loves it. Make sure that your son's school knows about his UC and that he has to be allowed to go to the restroom as often as needed without question or being made to wait. I also got a pamphlet for teachers about UC and gave it to my daughter's teacher. You can get one in the mail from CCFA.  

Good luck to you and your son. I will keep you in my thoughts.  

 Reply posted for BamaBelle.

I don't have any help to offer, only  to tell you that my son was just dx a few weeks ago with UC, poss the beg of Crohn's disease.  His name is Christopher and he is 5.

My husband and I are still in shock and awe and we are trying to educate ourselves as much as possible. 

We are trying to get ready for Kindergarten.

I hope your daughter improves with each day...

Christopher's Mom

 Reply posted for Lizzies Mom.

Thank you so much for sharing.  It makes me feel better to know that there are others out there who have experienced the same frustration.  My daughter's pain has been steadily increasing over the summer, and that makes me so worried for her. You're right about how knowledge is power. Those words ring more true for me every day.

 Reply posted for BamaBelle.

I don't thin it is uncommon to have a non-specific diagnosis.  This happens when the doc has a lot of information, but not the whole picture just yet.  It allows further investigation without "labeling".  

My daughter was sick from infacy.  Though her pediatrician brushed me off continually and insisted I was comparing my two daughters (I wasn't).  She was hospitalized @1yr (misdiagnosed w/virus).  Then hospitalized again (misdiagnosed w/hypoglycemia) and finally we entered the world of pedi gi.  

Once we were w/our pedi gi, they ran the bloodwork, scopes, scans, etc. and started her course of treatment.   However, it was nonspecific....ie colitis, gastritis, diverticulitis, etc., which only meant inflammation of various areas of her intestines.  It wasn't for another 6-9 months that her next series of scopes actually came back with Crohns through biopsies. 

I understand your family's worries and concerns.   It nearly ripped my family apart.   The best advice I can give you is to do your homework.  Knowledge is power and the more educated you are the more confident you will be. 

We are all here to help.

Lizzies Mom