Feeding tubes

[ZPA123]

I am a 15 year old Crohns patient and i was recently diagnosed with Eosinaphilic Gastritis. I was put on prednisone ad that didn't help at all...so then they placed me on Gsatrocrom with the prednisone and that did not help either...so now i am on a feeding tube consuming 3,000 calories of Vivonex for the next 4 weeks when i will then be slowly introduced to different foods...i feel as though 4 weeks is t long...what do yu think is the bet amount of time for this?

[Beaker]

Unfortunately it is 4 to 6 weeks or longer, depending on the amount of time it takes for your colon to calm down.  The alternative would be having the colon removed and I am sure you do not want that.  This is a lousy disease for an adult to have but it has to be more difficult for someone your age.  The doctors are doing this so they do not have to do surgery. I know it seems like forever but it will pass quickly.  My friend's grandson who is 11 has been going through this for the past 4 years and he doesn't want to do any of the things he use to enjoy.  Please don't allow this to happen to you.  Try to find things you enjoy to do while going through this treatment so that you do not get too depressed.  The Children's Hospital of Cincinnati has a summer camp for kids with Crohns. Below is the url to the hospital's site.  I wish you the best of luck and let us know how you are doing.

http://www.cincinnatichildrens.org/Your_Visit/Patient_Family_Activities/Kids_Summer_Camps/Crohns_Disease/crohn.htm

crohns disease  

Summer Camps for Kids with Crohn's Disease or Ulcerative Colitis


Children's Hospital Medical Center of Cincinnati recommends the following camp for children with Crohn's disease or ulcerative colitis:

Camp Independence is in its fourth year and will be held at Camp Campbell Guard in Middletown, Ohio form June 13 to 17, 2002.

The campers will have the opportunity to try all the activities the camp has to offer including horseback riding, arts and crafts, swimming, canoeing, rope courses and campfires.

The camp is staffed by a dedicated group of volunteers who have first hand knowledge of the special needs of the campers with Crohn's and colitis. The camp also has a team of  volunteer physicians and nurses that staff the camp 24 hours a day.

For more information, please contact Pam Morgan, pam.***@****.

[ZPA123]

thank you very much...unfortunatly that isn't what i want to hear...as i am sure that isn't what anyone wants to hear. but the thing is i can't even have clear liquids just water...and it is really hard

[Beaker]

http://hopkins-gi.org/pages/latin/templates/index.cfm?pg=disease1&organ=6&disease=21&lang_id=1

I know this is not what you want to hear but the url is to John Hopkins Hospital Gastroenterology Department.  They have folks who know more about this than I do.  They can best explain the reasoning for all of these treatments.  I know how it feels to have something taken away that you really like.  I have Sphincter of Oddi Dysfunction and if I eat any meat other than chicken or fish I am in pain.  By the way, I hate fish!  I cannot take certain medicines or I end up in the ER and depending on my levels I end up in the hospital with pancreatitis and then I am just like you on IV liquids and just water.  My physician say I am gaining too much weight and that I have to cut out the carbohydrates.  Now let me see, I cannot have meat or pasta, bread, etc......  I guess they want me to graze in a pasture.  In so many words, that is what the doctors told me.  Because if I don't, I will be in for more ER visits and possibly more surgery.  I know this does not make you feel better about all of this,I want to let you know that you are not alone. No matter what age we are, it is not pleasant going through this business.  I know I cannot solve your problem but if you would like to get it off your chest, I can listen.  My email address is ***@****