New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

maesmom
New Member


Date Joined Oct 2007
Total Posts : 3
   Posted 10/20/2007 1:57 PM (GMT -7)   
Hello I am new to the forum. My daughter was diagnosed almost two years ago with undetermined crohns.  it started with severe belly pain, and constipation. i thought appendix and off to er. ct showed nothing. two months later she had a nine lb. wt loss. she could not afford b/c she is already very small. gi specialist we go after another ct and barium swallow with small bowel follow. all normal. gi doc asked questions and then she had a positive occult blood. next colonoscopy, abnormal tissue in TI biopsy normal. started pentasa. nine months later new doc did camera pill said looked normal and was not gonna diagnos crohns. off pentasa 8 months and just had severe d with fever normal stool cultures except for blood in stool and stool was positive for wbc. no one seems concerned enough to order labs to see if she is active. i think she really does have it, but everyone thinks i am a crz mom. this is the fourth day, d this am, had mucous with a little blood but she did not have a bm. that was all that came out....HELPPPPP

KaNDiCe21
Regular Member


Date Joined Oct 2007
Total Posts : 106
   Posted 10/20/2007 2:07 PM (GMT -7)   
Well I am 21 and have had the same problems for about 9 mnths now. At first I just had belly pain with blood in my stool. They did multiple test to make sure that it was crohns. The pill endoscopy and biopsy on the colonoscopy revealed that I did in fact have it. From what I have read it is difficult to diagnose crohns and they want to be for positive before they start treatment. It is a long and rough process, but she will be okay with time. Symptoms will get better with treatment but you must stay positive. Good luck to you!
DX: Crohns in March 2007
Meds: Remicade


maesmom
New Member


Date Joined Oct 2007
Total Posts : 3
   Posted 10/20/2007 2:12 PM (GMT -7)   
thanks for the reply.. its very hard to sit back and watch your child suffer, she is only 11 and i dont want her to go for years and years before we get a perminant dx. I am staying positive, but I feel like docs dont always listen

njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 10/20/2007 3:05 PM (GMT -7)   

Hang in there and keep pushing for answers until she gets the help she needs. You are your daughter's advocate. 


Daughter (20) Dx'd Crohn's 3/06. Misdiagnosed for two years, including by top pediatric Crohn's specialist as stress and needing more fiber but landed in hospital in 3/06 with cramps, vomiting, stricture. Now in remission with Entocort 3 mg (one pill), SCD multivitamin, yogurt, vit D3 1800IU, 900+ mg calcium, 50 mg B complex vit, 25 mg iron. No longer on SCD diet.   
 


thenay
Regular Member


Date Joined May 2006
Total Posts : 167
   Posted 10/20/2007 3:22 PM (GMT -7)   
Sorry to hear she's having this, I wish the best for you and her.

I would see a diff specialist and see their take on it. It seems odd how they can't get a proper DX for her.
They did a lot of tests on her, something should show or know what's going on.

I see you mentioned they did a colonoscopy, but have they ever done a endoscopy, where they go down her mouth, to her stomach yet? They did that with me and didn't find it, but it can occur from the mouth right down to the butt. They found my crohn's in my small intestine by doing the colonoscopy.
 
Has she been tested for celiac disease, thats why originally they did the endoscopy for me.
I had D, gas and pain in my stomach.

Also, have you tried limiting foods that make her not well, like milk, beef, green veggies? A lot of people with crohn's can't handle certain foods. Let us know, remember we're here for ya! :)


DX with CD May 2006 @ age 22
Tried Pentasa and Entocort, worked for a yr and a bit
Now on prednisone 35mg and having some side effects, "..time goes by so slowly..."
If you need to talk to someone, PM me and i'll give ya my msn ;)


maesmom
New Member


Date Joined Oct 2007
Total Posts : 3
   Posted 10/21/2007 7:02 AM (GMT -7)   
thanks all who replied....She did have an EGD. That was by the first doc she saw that said she saw crohns in her TI. But she got switched to a diff GI doc in the same peds specialty group. and he said all is fine. but if you are not in an active flare up, the disease is caught early and you had been on pentasa for almost a year would they necessarily see anything by an invassive procedure. one would think that if you are in remission then all labs would be normal and so on.

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 10/21/2007 7:39 AM (GMT -7)   
Hi I am thinking that perhaps she could have hemmies . If you are concerned about her you could take her to emerg.Is she having pain with the D?I know it can be hard not knowing but if the Dr. said CD before then I would think she still has it because it is not curable perhaps there thinking colitis. Usually a flare comes with symnptoms like pain ,Fever D stuff like that. If her drugs don't work then she might need to try something else. THe big thing I guess is get her checked and the hospital do test if they have to .If you cain't talk to her GI then the hospital is the next step. Hope this helps lol gail

KaNDiCe21
Regular Member


Date Joined Oct 2007
Total Posts : 106
   Posted 10/21/2007 3:52 PM (GMT -7)   
I know how ya feel. Doctors are getting worse by the day it seems like, I've had a hard time getting a doctor to listen to me as well. I'm sorry to hear that she is going through this at such a young age. Things will work out for you, if you are not satisfied with what one doctor says then go to the next. Don't give up until you are happy with the treatment your daughter is getting!!! :)
DX: Crohns in March 2007
Meds: Remicade

New Topic Post Reply Printable Version
Forum Information
Currently it is Friday, December 09, 2016 10:35 AM (GMT -7)
There are a total of 2,735,394 posts in 301,299 threads.
View Active Threads


Who's Online
This forum has 151402 registered members. Please welcome our newest member, Len.
309 Guest(s), 10 Registered Member(s) are currently online.  Details
robotguy, fly with me, smlafleur, iho, maria2016, rockyfords, sam12, JackH, Kristvet86, ljimd


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer