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Children with Ulcerative Colitis

Hi I'm new to the forum. My son just turned 10 has been diagnosed with Ulcerative Colitis since Nov 2012. Has been on oral prednisolone Iv prednisolone Salasopyrin, Sulfalk and currently on Infliximab with little success. It is now looking likely that surgery is imminent. Would like to hear from other parents in similar circumstances.
 
Hi and welcome.
I'm so sorry you and your son are in this spot.
I'm going to tag in izzy's mom and QueenGothel
Both their girls have UC. Mary's (QueenGothel) young daughter had to have her colon removed because of UC and Angie (izzy's mom) was able to avoid that surgery for now for her daughter. They'll be along when they can.

We also have a wonderful Parent's Forum here. It's a great place with lots of knowledge but most important is the fact that your not alone.

HUGS
 
Hi Angrybird,
Thanks for your support. My son continues to have terrible cramps and diarrhoea. He does well for the first week to ten days following his infusion of Infliximab but consultant is saying that is not long enough that he should be getting six to eight weeks out of the infusion. He had 3rd infusion on Friday and now experiencing terrible joint pain eg: ankles, knees wrists ect. Just wish something would work to save him from having surgery but its not looking good.

A15
 

Angrybird

Moderator
Location
Hertfordshire
It maybe worth looking into Enteral Nutrition as something to help settle the tum - this has been shown to have great results with kids, I would also ask about having his vitamin levels checked.
 
Anna, Sorry about the news. Yes my DD had UC, now has a j-pouch. It was a rough road, but all in all she is a lot better without that darn colon causing all the problems. She went from diagnosis of mild UC to pancolitis to J-pouch take down in 9 months. None of the meds helped, they actually made her worse, as she was intolerant to 5asas. At that point we switched to the university hospital for a second opinion. The most important part about going down the surgery road is being confident with your surgeon. If I could do it all over again. I would have had the surgery done in Cinncinatti Colorectal Center, though I don't think any of the complications my kid had was her surgeons error. I don't know where you live but a qualified surgeon is kind of hard to find. I know a few people online (j-pouch.org) that had bad results due to a doctors mistake. I would ask a few question before hand.

If you choose to do the the surgery, what would the time frame be from ileostomy until takedown? Some people choose to keep the ileostomy for a while due to fear of Crohns diagnosis being so common with kids more than UC.

Will a mucousectomy be performed? I would research the method of the surgeon... Would they do a double staple anastamosis or hand sewn? My DD had a mucousectomy with a double staple anastamosis. Each surgeon is different and they have their methods that work for them. I would make sure you are comfortable with their method.

What are the risks with a muscosectomy?

Will the surgery be a two step or three step method?

How many J-pouches have you made? How many mucosectomys have you done?

Please feel free to PM me whenever you want.

FYI: If you chose to do the J-pouch I have a support group on FB and we have 33 parents now. Just let me know if you would like the link.

Below is My daughters story. She had a lot of complications that usually do not happen. But reading it might prepare you for the worst. So you know even after all that we have been through I do not regret the surgery, because she is now a kid again. She might not be normal but she is very happy.

Take care,
 
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Hi thank you so much for your informative reply. We are meeting with the surgeon next week and you have given me lots of questions to ask him about the surgery. Our consultant told us that our son would be having a total colectomy leaving a few inches only at the rectum. When we asked about reversing this after a while he said that they could form a pouch and connect it to the few inches that they leave at the rectum. He also said that a lot of people decide not to have it reversed as they learn to live with their stoma and that reversing it is major surgery. Just very confused at the minute. Thanks for your help it helps to hear other stories.
 
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