Our son, age 24, has UC and is set for his first step J-pouch surgery in 2 weeks at the Cleveland Clinic. We are lucky to live in NE Ohio, only an hour away. He will be recovering at our house post-op, at least for a couple of weeks until he can return to his own home. Any advice that will help us to help him would be greatly appreciated. We have no idea what to expect.

Hi Nanny - If he's having surgery at the CC he will be in the best of hands and have excellent care. Check w/ drs. to see if he is having a 2 step or 3 step , as it will make a difference in his recovery. If it is an end ileo vs a loop, there will be a difference in the way the ostomy "behaves". Do a search, under the find tab about 1 step surgery.

NYS

Dear NYS:
Thank you for this reply. Since my son had a last Remicade treatment in Sept.,there is a chance it will need to be a 3 step. His surgeon, Dr. Remzi, said he will make that decision during the surgery. We are going to Cleve. on Friday for all of his pre-op meetings. I will check out the tab you suggested. Thank you for taking the time to reply to this post.
Nanny

I also had Dr. Remzi - you have few worries!! Mine too was to be a 3 step, but he was able to combine steps 2 and 3 therefore eliminating one extra surgery. I wasn't on remicade though and that may make a difference in the time he wants to wait between surgeries. You both will love Dr. Remzi.. he makes everything simple to understand and has a wonderful personality. Good luck to your son.

nys

I also live in NE Ohio and Dr Remzi is my surgeon. He is fantastic!

I guess you had your pre-op meetings on Friday and I'm sure it was all very overwhelming. My pre-op stuff took up the entire day.
You (and your son) can expect a lot of pain. Sorry to be blunt but Major abdominal surgery is difficult to recover from. A Heating pad is helpful.
Also he will be on a GI soft diet for a while (which I'm sure you have a booklet about right now) Have lots of easy soft foods on hand for when he gets home. Mac & Cheese,soups, pudding, etc. Lots of water, and gatorade as it will be easier for him to get dehydrated. Visit the library and get books on tape or his favorite tv shows on DVDs cause he'll spend a lot of time on the couch.
Having in ileostomy is a difficult adjustment physically and emotionally it will also be hard, even though it is temporary.
During my surgery recovery I am a very difficult person to be around. You don't feel like yourself, your whole body aches (not just the incision) you're weak and tired and when you're an adult and have to depend on your parents its hard too.
It will require a lot of patience on your part!
having a strong family support is very helpful.
I wish you all the best
If you have any specific questions, don't hesitate to ask!
--
katie

Katie,

Thanks for this wonderful reply. The hard part for parents is that no matter the age of your children, you worry as if they are still your babies But, only someone like you, who has suffered with the illness, and surgeries can truly know what our son is going through. I want to stress to him that post-op pain management is something he should not be afraid to speak up about.

Thank you for all the great suggestions to help ease his recovery.

All the best to you.

Nanny