Conflicted :(

SemirA, don't be in such a hurry to have this surgery.  It is a horrible and extremely painful one.  Then you have the ostomy to deal with.  My son was 23 when he had it done.  It's been a very long and difficult year.  He is back onthe ostomy again.  He was diagnosed with UC when he was six years old.  It's a horrible disease.  But unfortunately, you will never be free.  As a mom, I feel you frustritation.  My son has gone through it as well.  he had to have his large intestine removed because they thought he had colon cancer because of the length of time that he had the disease.  He was producing precancerous polyps, so out it came.  So unless your doctors have told you it has to come out, I'd wait. Just my thoughts.  

Dianne

First of all, the surgery is not horrible and extremely painful for everyone. But, for most of us, it probably is the most challenging surgery we will ever experience. Because of that, I would not encourage anyone to proceed unless it is critically necessary without being 100% on board with the decision. If you are unsure, every time there is a setback or you do not progress as you envisioned, you will be forever second guessing your choice.

Also, do not get it into your head that colectomy and a j-pouch is a cure. I know some doctors phrase it that way, but it eally is more of a trade off from an unmanageable situation to new challenges that are manageable. You have to understand that there is NO TREATMENT OR SURGERY that can restore you to your pre-IBD state. That said, most of us lead productive and active lives with a j-pouch. One member just posted about running a marathon! 

Do not hang your happiness on one bowel movement a day. 4-8 bowel movements without urgency and the ability to delay for hours is far different than the urgency of UC and flares that land you in the hospital. I managed to put off colectomy for over 20 years, but that was mostly in remission and it did not control my life. 

You will know when it is time for colectomy, as you will be accepting of the trade off. That day may never come for you. Maybe a new treatment will come along that will keep you in remission longer. Since Remicade works for you, why not treat on a regular basis, such as every 6-8 weeks, so you are preventing a flare more than treating one? Makes sense to me...

Jan

Don't wait too long and get toxic megacolon.......that's what almost happened to me and my colon was dissolving in my surgeon's hands when it came out, per what he told me.  If it dissolves from the inflammation while it's still in your body (and you won't necessarily know it's happening because it will feel like your typical flare), things will get dicy..........4-6 bowel movements a day is not the end of the world.

LIfe and experience changes things.

What seems like a big thing or a deal breaker at 18 seems like a cake-walk at 30 or 40.

3-4xs/day? That is a gift. 

Do not have major surgery until you must. This is not a preventive measure or a cure as Jan says but a trade-off so beware. 

Some people have a very easy time of it, a few (3-6) months of difficulty with liquid bowels and then a life where their pouch behaves nicely forever.

Those people are not posting on this site. They are very busy living their lives. 

The people who post here (mostly) are the ones who are sick, pre-op, post- op or still having problems (or the wonderful souls and angels who come back and give advice even though they are living their very full and happy lives)...

So think this through. If remicade works for you and you are 'in control' of your situation or feel that you are then do not rush into it.

Good luck no matter what you decide

Sharon

I agree with what others said. Despite what you may read and what some doctors may tell you, a j-pouch is not a cure, nor can you ever expect to be the way you were before you had UC. But for the majority of people who undergo the surgery,  there is a significant improvement in quality of life compared to when they had UC.

Although my case was atypical in that I went only 3 weeks from the time of my UC diagnosis to surgery, my surgery was done as an emergency. I was critically ill going into the procedure and without the surgery I would have died. It was a long and complicated recovery process, but it would have been a less involved recovery if I hadn't been so sick going into it. My point is, if you can do this surgery while you are relatively healthy, which you appear to be now, your chances at a faster and more successful recovery are greatly increased.  And don't feel that a j-pouch has to limit what you do. Despite my rocky start, I am now almost 10 years without my colon, and over 7 with the j-pouch. I am not going to say that things are or always will be perfect, but the vast majority of the time I am very comfortable, to the point that I often forget I even have a pouch. I live a very active lifestyle. I work full time. I horseback ride twice per week, I'm at the gym 4-5 times per week and I'm involved in running, weight training, and I'm an avid participant in yoga (considering becoming an instructor part time to supplement my income).  Don't think of this surgery as closing doors; think of it as opening them. Obviously at the end of the day, it's up to you what you choose. But I believe it's important to hear ALL sides of the story before you make a decision.