There are medical options beyond remicade, but I can understand opting for surgery to get off the drugs and have a more permanent solution, especially after experiencing lymphoma. I had septic shock from the medications I was taking for UC, and that drove me to realize that surgery was probably a better alternative to the fight against UC I had been fighting for almost 10 years.
To answer your questions:
1. I don't think anyone can say
2. I have never worn a diaper since surgery. I get the urge, but it's not a huge rush like it is when you're flaring. You can wait until you get to the bathroom. That said, some people do wear diapers, mostly to sleep, especially people who recently finished the procedure and are adjusting.
3. No phantom pains for me.
4. I do not feel very limited as far as activities go. Definitely way more capable of doing things in every respect compared to how I personally lived with UC. I couldn't even reliably work a full-time job with UC, nor could I travel, plan, do all day activities...
5. The recovery is not easy, and the jpouch is multiple steps, so it's rough. I went into it in bad shape, and the first step was the worst for me. After that, everything got easier.
For weight, the best thing is to get healthy! Why are you unable to maintain? Are you eating enough? I have trouble gaining with my pouch, but I was carrying too much prior to surgery due to prednisone use. I am on the other side, happy to be a petite, healthy size. I would imagine if got your health back, either through medication, diet, surgery, whatever course.. you would start to gain weight.
Moderator: UCCurrently: no meds 6/15 Step 1 J-pouch Surgery Complete 9/15 Step 2 Complete 11/15 Step 3 Complete
From Sickly to UC Free
Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish