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Posted 11/20/2003 4:07 AM (GMT 0)

Hello everyone, I am new to this site, I am a regular of the Crohns site. I have a 17 year old son who has crohns. He has had crohns now for 6 1/2  years. He just had surgery 4 weeks ago where they put in an ileostomy bag on, To give the diseased crohns area time to calm down and infection in his body to get well. They are planning a resection i guess in the next few months, no date set.  Tyler is doing great, enjoying eating with NO pain. He has adjusted well to the idea of his "bag", he doesnt like it, but he does have a good attitude considering what he has been through. The surgeon said his crohns was all contained in one area which is good, so when they reconnect his intestine they plan to cut out approxiamtly about 8 to 10 inches of his terminal ileum. 

 

My concerns are.....Is he going to feel as good after the resection as he does now, when it comes to eating? He is so enjoying eating with no pain and no worries that he is going to be hurting later on.

 

Any output out there concerning this issue?

Posted 11/21/2003 10:12 PM (GMT 0)
Only that personally, I am happy with my bag. Although I can't now have a reconnection becuase the Crohn's has flared up in the bit they were going to join it to, I wouldn't choose to go back to bowel anyway.

If the Crohn's flares up again, and I have diarrhoea again, I'd much rather have the manageablility of the bag any day. I have a life with a bag- I don't want to live on the loo again!

Kez
Posted 11/22/2003 2:46 PM (GMT 0)
Tyler's Mom,
I would have to agree with Kez. The freedom the bag gives from pain and worry far outweighs the bad stuff.....having to wear the bag, etc etc. Hope Tyler is doing well. Nancy
Posted 12/19/2003 3:41 PM (GMT 0)

 Everything is still going great. We are planning the reversal operation and resection of his terminal ileom ( thats where his crohns at) in May. That is when he will be finish with his first quarter of college and then he will have the summer to recoop from the surgery. We have finally gotten him  off of his predisone and things are still going good. Still has a good appettite, he is up to 133 lbs now and mom is still trying to fatten him up some more. Moms can be aggrevating when they get into nurse mode.  His home health care nurse came out this morning to change his central line bandage. She said Tyler is doing so great that she wouldnt be surprised if they wouldnt have to do the resection part just the hooking up. The reason she believes this is he is gaining weight well, his poop is pasty, which means everything is working well and healing well and his blood is very rich in oxygen. That would be a prayer answered !! She said at his age of 17 and in good health that she figured it would be a easy surgery maybe 2 or 3 days in the hospital......boy I hope she knows what she is talking about. The whole surgery has me as a mom concerned but God is in control and has my son in his hands.....Thank you Jesus ! :)

Posted 1/4/2004 12:10 AM (GMT 0)
Dont worry Tyylers mom im sure once he gets the resection, and get on some good meds (do you know what he will be taking?) im sure he will continue to do great !
Posted 1/4/2004 12:23 AM (GMT 0)

No I dont know what medicine he will be on, right now he is taking some probiotics and 25 mg of purenthol.  I dont even know who is going to do his resection and reconnection surgery. The Dr. who did his ileostomy is no long at that hospital and since its a childrens hospital and he will soon turn 18 they want us to find an adult GI and Surgeon. Im not feeling good about that being his GI has been taking care of his since he was 11. I just pray for desernment in finding a new GI and Surgeon.

Posted 1/13/2004 3:08 AM (GMT 0)
Tylers mom... What probiotic? The best ive read about is one called VSL#3 im currently taking it.... only been a bit though.
Posted 2/10/2004 4:26 AM (GMT 0)
Sorry I havent gotten back to respond to your post sooner, Sooper. I took Tyler to a Dr. who uses natural medisones along with antibotics too if he feels they are needed. Right now we have Tyler on a preop regime of probitotics to get Tyler ready for his next surgery. These are what he is taking.....Lactobacillus GG also known as Culturelle he takes 1 a day with breakfast (this is what the box says about Lactobacillu....Strengthens the bodys natural defenses, Helps maintain healthy intestinal flora(good  bacteria), Assists intestinal functioning, survives in stomach acid, Adheres to & colonizes intetinal tract, .Resveratrol, he takes 2 of these twice a day on an empty stomach (antioxidant and cardiovascular support)

Vitamins A & D once a day and also Wobenzym N  he takes 5 , 2 times a day on an empty stomach. (this is an immune system supplement). Tyler also take 25 mg of purenthol, 6mp.

He is still doing well, He is gaining weight he is about 138 now, his output is pasty as it should be(as his nurse says it should be) and is doing well while is off the predinson which is a good sign. He is scheduled for CT scan soon to see how the diseased area is doing and hopefully all they will have to do is fix the ileostomy and NOT have to do the resection, thats my prayer!

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