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10 year old facing colectomy

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Ostomies
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Posted 3/18/2013 11:00 AM (GMT 0)
My 10 year old son has had ulcerative colitis for 5 years and has been flaring badly for a year. Docs have tried imuran, methotrexate and remicade with little success. He is currently on 20mg pred plus has recently started 6mp. He has been hospitalised since Thursday with side pain and fever. There is no sign of infection but inflammatory markers are very high. He is on IV antibiotics and they are about to put him on IV steroids.

If this doesn't fix things I'm assuming he may need a colectomy. My question is - is there anything that can be done to help ensure he will be able to have a j pouch at a later date?

I would also really like to hear from other parents whose kids have had ostomies. I don't want sympathy just advice and support please! We are in London, UK. Thank you
Posted 3/18/2013 11:13 AM (GMT 0)
Another question, when we spoke to our consultant about elective surgery, he said that he would recommend waiting several years before getting a j pouch - saying this surgery is difficult on children and at high risk of complications. He said would be best to wait six or seven years! Is this really true? I think my son would want a j pouch as soon as possible.
Posted 3/18/2013 11:26 AM (GMT 0)
I had my ileostomy surgery due to UC when I was 10 years old - but that was 36 years ago now (and it's still going strong!). I never had the j pouch surgery though because back then it was in its infancy. A year after my ileostomy surgery, they had to remove my rectum so j pouch wasn't a possibility for me after that, but I've never ever regretted having the surgery. It gave me my life back!
Posted 3/18/2013 1:09 PM (GMT 0)
go to the jpouch.org website. There are some mums on there. Some of their kids have had many problems with jpouches, but that is generally what you will find on a help site. Also I believe they have a facebook page for mums of kids with jpouches.
Posted 3/18/2013 1:10 PM (GMT 0)
Are you in the UK? In the US children are given a jpouch and not told to wait beyond the normal jpouch scheduling time. There's a fellow on the www.j-pouch.org site who's 6 year old daughter had the surgery 2 years ago and she is doing fantastic. But the answer is yes, your child can have an ileo for years and then have jpouch surgery later.


Sue
Posted 3/18/2013 3:03 PM (GMT 0)
Also - the meds being used in attempting remission and to maintain remission can cause life long problems. For instance - Prednisone can cause vision changes, diabetes, osteoporosis, not to mention the other meds. I am in a position where I'm going for surgery because some effects of these meds cannot be reversed - we can lead a full happy life with a colostomy, but osteoporosis & diabetes can really change that. Just another perspective & I cannot imagine being in your shoes - my heart goes out to you. I have a 4 year old and am in fear that she'll end up with this awful disease too. Best of luck.
Posted 3/19/2013 12:55 PM (GMT 0)
Please do consult with other doctors and surgeons. Children may be at higher risk for complications than adults, and although the complications can never be predicted, a good doctor/surgeon will know when it is worth taking certain risks, based on your son's individual case.
I cannot recommend anyone in London, but I know for a fact that there are some very fine pouch surgeons and GIs in London. Try S.t. Mark's, I have heard it is one of the best in London for intestinal operations.

Post Edited (B'Dereh) : 3/19/2013 7:05:26 AM (GMT-6)

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