Hello everyone,
I am 9 days post phase 1 of my J-pouch surgery; had it on October 14, 2015. Reason is (or now I guess was, rather) Familial Adenomatous Polyposis. Frankly, I am crushed; I think it was the biggest mistake of my life. I avoided the surgery for 9 years, and should have kept on avoiding it, in spite of the inevitable. The problems, although not numerically many, are significant. 1) I have stool bowl movements from my rectum. They are uncontrollable and mostly happen while either I'm emptying my ileostomy pouch or sleeping at night. They also occur during the day. Smelling fowl is horribly humbling feeling, and I can't take it. I'm stuck inside my house because I'm too afraid of going out in public and being embarrassed. I'm afraid to even have friends over. The isolation is terrible. I'm a 34 year-old man and have always taken care of myself, making it a point to look and smell good. Now I've lost control of my own body, and it literally makes me often break out in tears and/or uncontrollable fits of crying. The bag, although sealed and not linking smells too. It's enough that I lift my shirt, and boom...
2) Emptying the bag is kind of a problem to, y such that I'm only comfortable doing it in my own bathroom. Reason is, I have moderate spasticity in my legs as a result of Cerebral Palsy. Note: I do not need a special bathroom, it's just that if I have a spillage, it needs to be at my house and not anywhere else. I emptied it once yesterday and it went fine, the second time I spilled all over the place because I couldn't get the measuring cup (my doctor wants output measured for the first couple weeks). So, again, I am stuck in my house for the next 3 months, until my ileostomy is reversed because I'm terrified to go out in public.
On a normal day prior to surgery, I never even noticed my Cerebral Palsy. I walk with forearm crutches, use a wheelchair, but only if I need to have my hands free, and drive car without any hand controls or adaptations. Basically, I have always been able to do anything I wanted But now, my disability is severely limiting me; I don't have the luxury of being able to stand independently and care for my bag.
Please, do any of you have any ideas??? I'm a very social and outgoing person, and I can't be on "house arrest" for the next 3 months! It's killing me! And this is just day 2 out of the hospital (was discharged yesterday).
