My 18 yr old son needs to make this critical decision. He had 1 great year with his jpouch. Then the issues started with recurring strictures and pouchitis resistant to all medications (several antibiotics, 3 biologics, several enemas, budesonide, etc.) . He was diverted in April and still has recurring strictures and is still bleeding from inflammation. He has dilations under anesthesia every 2 months and is still on Entyio (4 infusions) and Cipro although neither is helping the inflammation... all this in addition to dealing with the ileostomy and having no energy. He has reluctantly accepted that he may need to have a permanent bag. He is set to start college in September but does not want to go until he feels well. He was convinced that the pouch needed to be removed and then he could defer college until he healed.
Today we went for a second opinion with Dr Remzi. Dr Remzi believes that his issue is structural and fixable and that the strictures are causing the pouchitis. He said he has an 85% success rate with pouch redo's.
I hate to get my son's hopes up as NOTHING has worked thus far. I'd also hate to have the pouch redone only to fail again and need removal anyway... another surgery and even less small intestine left.
On the other hand, he is only 18 and he has a chance to have a good pouch without a bag. Pouch removal is permanent and and I don't want him to make an irreversible decision he may regret down the road. Although, he is tired of surgery and at the same same tired of feeling sick. At first he just wanted to have the pouch removed and be done and get on with his life. He is "OK" with the bag. Now Remzi has planted a seed of hope and my son is thinking differently.
Any thoughts? And any experiences with Remzi.
