Signs of disease activity?

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73monte
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Date Joined Mar 2007
Total Posts : 1496
   Posted 8/17/2007 5:07 AM (GMT -7)   
It's been about 6 months since we found out that our daughter has Crohn's disease. I've found that one of the toughest things as a parent is the worry about the future. Anytime my daughter is feeling the least bit unusual, I start worrying that there is disease activity starting up. Is there anything that I should keep an eye out for. For the most part she seems okay. Since Feb. though, she has never had any solid BM's. Not diarreah, just loose. She also does seem to get gas regularly. Is this all normal? Thanks in advance for any imput.     Tom.
My 13 year old daughter was diagnosed Feb. 19/07 with Crohn's of the Terminal Illium. Initially, 9 weeks of Prednisone, currently taking 1500mgs of Pentasa, and iron supplement.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 8/17/2007 6:49 AM (GMT -7)   
Food can cause alot of problems for us. The gas could be caused by something she's eating. She should probably keep a food dairy and keep notes about how she feels after she eats something. That way she can learn what foods are okay for her and which ones to stay away from. Diet is very individual for each us. Some can eat certain things with no problems and others would wind up in the hospital if that ate the same item. Also, flares are very individual also. For myself, it starts with D and nausea. If it lasts more than a week, I know I am flaring. Hope this helps some.
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


Skjura
Regular Member


Date Joined Jun 2007
Total Posts : 210
   Posted 8/17/2007 2:30 PM (GMT -7)   
Hi,


When I started using probiotica I got rid of the gas problem.

I have now been trying to stay without the probiotica for some weeks, just to see if this really is something I need, and I can assure you.....probiotica helps a lot for me when it comes to reducing gas and also reducing pain actually...

Have a nice evening :-)

From Ingrid scool

curley
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Date Joined Mar 2005
Total Posts : 4305
   Posted 8/17/2007 8:08 PM (GMT -7)   
First off Tom you are in the right place and as you all ready know that we will help any way we can.Nanners is right the food we eat can and in alot of cases causes does cause gas.I also agree with Nanners about the food dairy and that way when your daughter eat's something you can write it down and this way you ommit the food that bother's her.
Curley
.........
 


73monte
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Date Joined Mar 2007
Total Posts : 1496
   Posted 8/18/2007 4:00 AM (GMT -7)   

Nanners/Curly;

SO you both feel that these signs are simply related to foods, just like any of us can have from time to time? My problem is, I wish I could know what the tell tale signs of the disease getting active and progressing are. I suppose it's worry. Thanks very much for your responses.     Tom.


My 13 year old daughter was diagnosed Feb. 19/07 with Crohn's of the Terminal Illium. Initially, 9 weeks of Prednisone, currently taking 1500mgs of Pentasa, and iron supplement.


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 8/18/2007 4:43 AM (GMT -7)   
Hi Tom I am no expert here but I would think that if she were having a lot of pain,D that last or changes in symntoms. I would also make sure that she has regular visits to GI other then that you could ask her Dr. Sometimes it can be a wait and see thing try not to get too worried about things you'll know when things get worse.The only other way I can think of is the scopes or test they do to check internally has she had any or does her DR. feel she needs any? Nice to see such a loving Dad but sometimes it is best for her for you not to worry so she doesn't get anxiety when not needed. Hope this helps some .lol gail

njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 8/18/2007 8:40 PM (GMT -7)   

A lab test can check her inflammation levels, such as CRP and sed rate (ESR), to see whether her Crohn's is active. CRP tends to react sooner than sed rate in response to bowel inflammation, and so it rises earlier than sed rate. My daughter's pediatrician was able to do a sed rate blood test right in his office. 


Daughter (19) 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. In remission with Entocort 3 mg (one pill), SCD multivitamin, homemade yogurt, vit D3 800IU, 900+ mg calcium, B complex vit, 25 mg iron. Now on modified SCD (added rice and potatoes).  
 


73monte
Veteran Member


Date Joined Mar 2007
Total Posts : 1496
   Posted 8/19/2007 7:28 PM (GMT -7)   
Thank-You for your responses. I will inquire about the specific test for activity. I suppose it's mostly worry on my part. To be quite honest, she seems to be doing okay, has grown quite a bit, and hasn't complained about feeling tired or sick. about the only thing that she asks about are the fact that since she started treatment, she hasn't had a solid bowel movement. It's alway very loose. Not quite diarreah, but never even close to formed/solid. Is this a concern at all? Thanks again to everyone. 
My 13 year old daughter was diagnosed Feb. 19/07 with Crohn's of the Terminal Illium. Initially, 9 weeks of Prednisone, currently taking 1500mgs of Pentasa, and iron supplement.

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