Hi, what can my child expect

Hi everyone, my son has ulcerative colitis and his bowel is not responding to the meds that his is on ( he has been in the hospital for almost 3 weeks now   ). The doctor is opting for the j pouch surgery and even though I have read as much as I could find. I would like to hear personal experiences- especially if any involve children ( he is 9 years old ). I am really scared for him. Aside from uc, he also has tourettes :(

thanks for any information

thank you so much byebyeuc. What is your daily life like with the j pouch? My son is very active. I know that he can exercise, but is it limited? If he falls on his stomach, is it safe ( silly question I know )? I don't even know where to start with questions. He is heading to surgery today and I am in shock. He is in a big hospital with very experienced surgeons. They have all spoken with him and he is ready to do this. He actually does seem to really care at all. Thanks again.

Regarding activities, he can do basically anything. While he has the ostomy, contact sports should be avoided, though they do make "stoma armor" to protect if necessary. He should be careful with heavy lifting to avoid a hernia. But really, there are very few restrictions with activity. Once the J pouch is in and he's healed, I believe there are no restrictions.

Oh wow, I didn't realize it was today. The good thing about a two step procedure is the whole process will be over with much sooner.

I'm glad to hear he's with experienced surgeons. He will be in good hands. His ileostomy will take some time to get used to but after a few weeks, it gets to be second nature. As soon as he feels up to it and you get the ok from his doctor to resume normal activity, he can do anything he wants. They will likely tell you no diet restrictions but I would stick to a soft, bland diet for a while. Same with after the second surgery but soon after his healing period he will be able to resume eating as he did before UC.

My j pouch has been very good to me. I use the bathroom 4-6x a day with no urgency. He won't be sick anymore so this isn't like using the bathroom with UC. His stools will be looser. After four years now my stools are mostly always semi formed. I eat a normal diet. My j pouch hasn't ever stopped me from doing anything. I work, travel, exercise, run my two boys around.....I lead a pretty normal boring life!

Please let us know how he made out. There are lots of people here to help you with the ostomy questions. Like I mentioned, it's been a while so I forget a lot already about caring for my ileostomy. Saying some prayers for you and your son for a quick recovery.

Thinking of you. The first days are hard on the mom too. I am not expert enough to give much data, but my 21 year old is doing well. The loop ileostomy if a bit of a challenge, and you will have to help a child all the more. Make sure they don't send him home with little to no pain relief options, it hurts a lot. Get a good script. Use the Ostomy nurses and get their direct phone numbers. Wow, they took him in so fast....get the pathology reports ,and all access to his records so you can review as needed.