07-19-2009, 08:59 AM   #1
Amc2861
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Join Date: May 2009
Our story

Hi my name is Anne and my daughter Jessica has Crohns disease. she was diagnosed in February 2008. She is now 12 years old. She had been suffering with bad stomach pains and was losing weight. Finally they put her in the hospital and did tests and diagnosed her. She has been on steroids, pentasa, and 6mp. She recently started remicaid and has had 4 treatments. She seems to be getting thin ner and thinner yet her stomach is always very bloated. Doctor called me Thursday and after looking at her blood work then sent her for CT scan.
Anyways he told us that the meds are not working and she has a blockage. The opening is so small that her food can not get through. So they are talking about surgery now. We are still waiting for a call back from doc. In the mean time I am worrying about her getting thinner everyday. Any ideas or suggestions would be appreciated.

Thanks,
Anne
07-19-2009, 09:20 AM   #2
bigtruck
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Location: United Kingdom
hi anne welcome to the forum no meds worked for me till i had surgery to remove 12 inches of small bowel,please try and not worry the docs will get her sorted,i really feel for the two of you at this time,if i can help with anyone please feel free to get in touch, Ryanx
07-20-2009, 10:24 AM   #3
Amc2861
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Join Date: May 2009
Thanks, and still waiting for doc to call. She does not want to eat today but is drinking fluids. Tummy so bloated, i am guessing becuase food won't go through due to obstruction.
07-20-2009, 04:53 PM   #4
My Butt Hurts
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Hi Anne, welcome to you and Jessica.
You might want to try some supplemental drinks like Boost or Ensure to help her get calories. My doc even said I could drink Slim-Fast, and I liked the flavor better than the others. Not sure if that is considered liquid though, it might set up like cheese.
Hope you hear from the doc soon - let us know what he/she says. Good luck!
07-21-2009, 08:14 AM   #5
D Bergy
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Join Date: Apr 2007
I would stick to a liquid and non bulk diet. If there is an obstruction, it will not help to have food stuck behind it. My stricture had this effect, but I was not diagnosed until the last minute. The doctor did not even want to talk about what he found behind the stricture. Real bad smelling burps is a good indication of a stricture in the small bowel.

The Surgery will really help make her feel better.

Keep us posted.

Dan
07-25-2009, 04:53 AM   #6
Amc2861
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Thanks. Well she has been in the hospital since Monday. They put in a pic line and have her just on fluids. Planning saurgery for this Tuesday. She has only had ice chips for the last several days. We are now looking forward to surgery to have it done and get home. The have to give her a shot everyday and it is quite painful after they give it. Otherwise she is feeling good most of the time.
07-26-2009, 06:38 PM   #7
Amc2861
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Thanks. She is getting her food in a bag rigth now. We are just waiting for tuesday. Hopefully they will give us a time for surgery tomorrow and explain more to us.
08-01-2009, 09:28 AM   #8
Amc2861
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Join Date: May 2009
surgery went great. Jess is still in some pain and gets to go on soft solids today.
Bummer that todya is her birthday and we are still in the hospital. But hoping to go home soon.
08-01-2009, 03:47 PM   #9
D Bergy
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Join Date: Apr 2007
Great news.

If she is on opiates for pain, you do not want to eat anything that promotes constipation. Trust me on that one.

Dan
08-01-2009, 08:39 PM   #10
Nancy Lee
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Location: Windsor, Ontario
A belated welcome to the forum...
I'm so glad your daughter's surgery went well
and lets get her back home real soon.

Happy Birthday Jessica!!

Healing Hugs~Nancy
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08-02-2009, 01:58 AM   #11
tkgreen
 
Hi AMC
Probiotics is one of the most important add-on you must do to the diet. The refrigerated and the most effective is VSL#3. It has 450Billion good bateria per sacket. It is a little pricey but you can find it cheap in crohnsstore.com. I would definitely stick to the parishable probiotics. Another brand that is very good is Culturelle. This is less pricy but each serving gives you 10Billion so I would start with VSL for 30days and then maybe switch to Culturelle. This store also contributes 5% of the purchase price to CCFA San Diego chapter.
12 years old.. that is so young. Hope for the best and please,please keep a lookout for good food and diet. Slimfast is not part of that good diet.
Take care
TKgreen
Loving life - Laguna Niguel California
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