I might try getting a second opinium. I also have my pediatric gi that has really helped me through this. I came to visit her today in her office and she told me that I need to empty more often then twice a day because that will make the pouchitis worse. She also said there is a way to put the tubes back in if they fall out without going to the emergency room. She also told us that she could train us how to do that. She mentioned a button tube that would be a lot better then a regular g tube because it doesn't show as much and you can put something in to do the feeding. Not sure if I am going to get that yet. She mentioned a pouch that you can stick something in that you can empty with. Do you think I should get the button tube? Also I heard about a gastric pacemaker should I consider getting that? Please let me know I need advice thanks

It sounds to me like your pediatric GI is someone you should work with closely to get some of your most serious medical problems under control. Having a doctor you trust and who cares about you is very important, and it sounds like she has those "second opinions" and advice you really need. She's MUCH more familiar with your medical history, current condition, preferences, and treatment options than we at this forum can ever be, AND she is a medical professional who specializes in helping patients like you with the types of conditions you have.

If you follow her advice as best you can, there's a good chance your condition will improve a great deal. Empty that pouch 6 or more times a day, if that's what she says should be done. If she thinks a button tube would be much better for you, then you should probably get one. It would take a relatively minor surgery to have a gastric pacemaker implanted, something to consider instead if she thinks that is more likely to improve your life a lot more.

If she suggests another surgery, do give it serious thought. Medications are not always available to solve certain medical problems in all patients who have them. There are steps that surgeons can take to help reduce the formation of adhesions, which I understand has been a huge problem for you. I'm saying all of this because I think the "pouch" you described is a Kock pouch, or "continent ileostomy". This type of pouch has no external bag; there is an internal one instead (similar to a j-pouch) which you empty by inserting a tube through a flat stoma they would create on your abdomen. Many people live long happy lives with this type of pouch. However, it would take major surgery to go from a j-pouch to a Kock pouch.

Write down your questions for your GI before your appointments, bring family members along who can take good notes when you go to see her, and try to get answers to all those questions during each visit. I know how overwhelming it can be with all these difficult problems and technical treatment options.

I wish you the best of luck!