Hi CureJLB. Here are my answers to your questions:
At 15, how much did you understand about the surgery and ostomy before going through the process? I want us to go into this with eyes wide open and realistic expectations. While my son is emotionally mature, is there a point where there's just too much info?
I understood very little about what living with an ostomy would be like. They give you pamphlets and stuff to try to explain what life would be like, but actually doing the the emptying, changing of the bag, and showering is such a surreal experience. It's so nerve-wrecking the first few times you change the bag because you're afraid that the bag won't stick, or you're sticking on the bag completely wrong. Yes it's an absolute nuisance needing to change the bag every few days, and it may be uncomfortable to wear, but he will be pain free when he is able to eat. There will absolutely be days where he may regret the decision to have the bag, but you have to remind him that he is healthy and not in the hospital.
There is never too much information because this will be his reality. I kind of wish in my days there were youtube videos to make me more prepared for the ileostomy because then it wouldn't have been such a shock for me. Though, watching videos and actually being the person having the ileostomy are two completely experiences, but it still is quite helpful to be prepared mentally.
How long did you have your bag before having the step 2 surgery?
I had the end ileostomy for 3 months, and the loop ileostomy for 3 months before my close-out surgery. The three months before the second surgery are extremely critical because the body has to be strong for the second surgery. I'm Chinese, so my mom would buy a fresh chicken and literally drip the chicken juice out of the chicken through some sort of steaming technique. My mom calls it the "chicken essence" as it was pure protein. In addition to all the food I ate, I also drank that every day. You don't have to go to that extreme, but your son will have to build up some strength from the first surgery.
What, if any, complications have you experienced since having the J-pouch?
I was one of the luckier ones that didn't have any complications after the transition to my j-pouch. I also had one of the top surgeons in LA do my surgery as well. Though, I do leak pretty much every night, during the day I have no problems. Everyone is different. You can probably read on the forums some of the complications other people have had. Though, I have landed in the hospital 13 years later only to be diagnosed with Crohn's and will be having my j-pouch removed due to a stricture near my pouch. There is no telling what the future will hold. I thought I was done being sick, but my body had other plans. Perhaps your son will be lucky and will have his pouch for decades to come. Though, you also have to prepare yourself that there is always a chance that the j-pouch will not work and he will have a permanent ileostomy for the rest of his life. Since your son is still young, I would encourage him to try the j-pouch. Yes, it will be another big surgery to remove the j-pouch then, but I don't want any of you to regret not trying. I had 13 great healthy years with the pouch.
Though my time is up with the j-pouch, I hope I can help people like you and your son to lessen your fears about the surgery. There are so many "what ifs" at this stage that everything can be overwhelming. If you do decide to do the surgery, don't look back. Remember that your son's health is what's important. Also, give yourself time to grieve and process the events so that you can help your son better. Even after the j-pouch surgeries is finished, the journey still continues. My mom is with me at the hospital as I await my surgery to go back to the permanent ileostomy. I will ask to see if she would like to join our chat. I currently live in Japan, but I think I can set up a time to talk. Please PM your contact details.