Can you tell me how hard the recovery is? How bad do you feel..did you ever question getting the surgery during the recovery process?
Well, hard is subjective. The only time during my recovery process that I felt was as bad as being sick was the first couple of days in the hospital after surgery #2 (rectum removal and j-pouch construction). That is a MAJOR surgery, and my surgeon's post-op plan involves keeping a tube up your butt for days at a time. I was in a lot of pain, my belly was swollen, I felt weak, and I had a plastic tube up my butt 24/7. By the 4th day I was pretty comfortable (still on pain meds, but able to get in and out of bed, chairs, walk around, etc without cursing God) and out of the woods, so to speak.
I have never questioned getting surgery, especially during the recovery process. As I said, there were really only three days out of the entire process (and I'm not at the one year post takedown point yet, so I consider myself still in recovery) when I felt worse than I felt when I was flaring. The only thing I questioned was choosing to get a j-pouch instead of a permanent ostomy. I'm one of those evil pro-ostomy people who was quite happy, healthy, and comfortable with an end ileostomy, but after a lot of soul searching I decided to move forward with having a j-pouch constructed and the ileostomy reversed. As I said, the j-pouch construction surgery was by far the hardest trial, and starting to poop again has a learning curve, so those were times when I questioned my decision and wished I had an ileostomy instead. But wishing I still had my sick colon? Never.
Do I really want to risk going 6-12 times a day with pouchitis? Leakage?
I don't mean to be flip, but you're having accidents right now. Leakage is not the norm with a j-pouch and when it does occur it is usually easily treated. In my case I had sporadic minor leakage for the first few months after surgery (almost always because of passing a tiny amount of liquid with gas in my sleep -- this no longer happens). I have had one bout of pouchitis caused by C. diff, and that was the only full blown accident I've had in recent memory (and again, it was in my sleep).
Regarding going 6-12 times a day... I think you need to do a little more research. The overwhelming majority of j-pouchers go 5-6 times per day, but anything under 10 is pretty normal. 6 is a completely normal day for me. It depends on how much I eat, what I eat, and my activity level. Most women who are well hydrated urinate about
that many times per day, so it doesn't really impact my life at all -- in fact every time I go to the bathroom now it's a "two-fer".
There doesn't seem to be a win win here & I find the anxiety about surgery to be difficult. I should enter surgery, any surgery feeling positive & hopeful, but this seems like a bad gamble. But then again I'm in the hospital having accidents suddenly going 30 times a day.
I wish I had a crystal ball:(
How do ppl finally reconcile surgery?
I'd be more likely to do it if it was one step.
For me I had an unacceptably poor quality of life (similar to what you're experiencing actually), I had tried most of the meds available (based on my history of failing Remicade and Cimzia my GI didn't want to give me Humira), and I was experiencing significant side effects from the meds I was taking just to maintain my crappy QOL.
I understand the fear of the ileostomy, but when you understand the reasoning behind it it might not be so odious to you. A lot of the situations you read about
where the j-pouch has "ruined lives" are due to complications that can be prevented
by doing the procedure in multiple steps. Leaks in the j-pouch, for example, are a huge risk factor for pouch failure, and they're many times more common in one step surgeries (that's why one steps are almost never performed anymore). Surgeons don't have a stake in the ostomy supply industry or anything like that, and they certainly don't get off on giving ostomies to patients -- they do it because surgical outcomes for the j-pouch are SO MUCH better when it's completed in multiple surgeries.