Posted 9/19/2015 9:13 PM (GMT -6)
I am sorry you're going through this. It is the worst. I recently had the first step of j-pouch surgery and I can help you with any questions you may have. If your rectum is in bad shape, it will remain in bad shape, even without a colon. Mine has always been trouble for me and it's still trouble. I am not sure if I would want to go a year or two with it. I guess if I were planning a family, it is a sacrifice I could make. It hasn't stopped me from doing things and it's not hugely impacting my life but it's not the most comfortable. I pass stuff, and once in a while, it will feel urgent. I can ignore it and nothing will happen, no accident of any type and usually the feeling of needing to go will go away. When I do go, if I push, mucus will come out... Sometimes it feels incomplete and you want to keep pushing but there really isn't a reason to waste time sitting on the toilet.
As for living with the ostomy bag, it's a lot easier than living with UC. No worries about where the toilet is or accidents. I never had accidents with UC, I just didn't go far from a toilet. I wouldn't eat if I were going somewhere... that's really no way to live.
I tried entyvio without any response, but even before entyvio, I consulted a surgeon. I wanted to know I had an option if entyvio didn't work. medically it is usually the last option, and i hate to say it, but it doesn't seem like the success rate is very high from what I see. I gave it a try, and I recommend you do if you want to, but with a family history of CC and severe UC, and concerns about the future, it's possible surgery is a better option. Even if you get better, how long will it last, a month, a year? Whatever amount of time is never enough.
I can tell you I am looking forward to getting all the surgeries in the past. Gas + ostomy bag is bad. Another thing about the bag that i don't like is that I get nervous in the night. If I wake up, I will feel the pouch and sometimes I get up to empty, often because of air... It's annoying to have to get up, though I was getting up WAY more with UC (sounds like you are too). The crazy thing about UC is that you have good and bad days and sometimes I would have a few good days and swear I was getting into remission, then a few days later, things would be terrible again - I wasn't on prednisone - In my opinion you can't judge remission if you're on prednisone. Things should be rock solid after a week or two at 40mg. If not, you need to find something else that will get things headed in the right direction. Entyvio is supposed to work better when you're stable and maintaining vs starting in a severe flare up. I started it when I was stable and it didn't work for me regardless... I knew at a certain point that I would never allow myself to take another course of prednisone, when my flare up progressed, prednisone was my option (it always worked wonders for me), but I refused. that's when I scheduled surgery.
Did they check for c diff?
I was up and about pretty quickly after step one. 2 weeks after I drove myself to the doctor for follow up and walked a few blocks... It was hard, I was still extremely tired, but a few more weeks, I was hiking and going to the beach...