Time for surgery..

Hi- I have slightly similar background.  UC from ages 9 to 29, low grade dysplasia discovered at last colonscopy, I was urged to remove colon by my conservative Doctor at the time.  The surgery was back in 1992, 2 step, and laparoscopic was not an option.  The surgery was elective but my surgeon found that my colon was dissolving in his hands from inflammaton when it was removed, so toxic megacolon would have killed me before cancer, in all likelihood.  I deteriorated badly and the inflammation spread in my last few years with UC.

After 20 years with UC and 23 with a J Pouch, I can tell you categorically my quality of life with the J Pouch is MUCH better, this despite battling pouchitis for 20 years (which I have mostly kept in control with antibiotics) and suspicions of Crohn's due to a small swath of inflammation in my ileum above the J Pouch.  This has been called questionable and more likely the result of SIBO from backwash stool due to narrowing at the J Pouch inlet.

My only regret is I wish I had done the surgery sooner.

As to your questions:

 I'm hoping I'm a good candidate for laparoscopic surgery, but don't know what rides on that decision process? 

Laparoscopic was not an option, so I was cut open like a suckling pig from bottom of rib cage to just above base of penis. Not sure of the answer to this good question.

-         Pain.  What is the timeline for how long the surgery pain goes away, enough to be off the meds, and give a good hearty chuckle with no jolts.  For both the colectomy, and the take down surgeries?

Pain worse after step 1 than takedown which was (relatively) a piece of cake.  Rough for a few days especially to get up from and into bed and walk around which is a MUST.  I had a morphine drip but had an ileus after step 1 and obstructions/blockages after takedown.  These complications, while unpleasant, are survivable events and should not be viewed as deterrents to surgery.

-         Recovery time.  I'm hoping if all goes well, I'd like to be on my feet and working in an office within 3 or 4 weeks while whatever needs to continue healing, heals.  Is this realistic?

Probably, with the laparoscopic.  I was not allowed to drive for quite some time, I had headaches from prednisone withdrawal and was generally not well until after takedown.  I was weakened by complications which were mentioned above. 

-      .Reading about the number of trips to the bathroom after J-Pouch surgery is honestly scaring me.  

It shouldn't because this is a SUPPORT board where people with problem J Pouches post. It is not a repository for accurate information on your likely experiences with a J Pouch, because most of the posters who post about bathroom trips are the ones having problems.  I am a trial attorney for the last 23 years and never had a problem once during numerous trials, arbitrations and mediations, although early in my career I was scared to death about it.  Adrenaline and energy obliterate fear.

-         I've never been diagnosed with Crohn's.  Just UC.  Does this make me a candidate for J-Pouch, for better, for worse?  Anyone get *surprise* Crohn's after 25 years of UC and surgery?

See my post above.  I would bet 90% of the GIs in the USA who looked at my scope pics would tell you I have Crohn's.  My answer would be, "so what? I am treating it and doing OK."  It's a word that scares people, but you have what you have, focus on treating what you have and not diagnoses.  There are more subsets of IBD than there are names for them, this is well established now and you can take that to the bank.  I don't think anyone reasonably believes the 2 disease IBD classification system is valid anymore, so a Crohn's diagnosis doesn't really mean as much. Saying someone has Crohn's is essentially saying they have 1 of possibly 200 different disorders which range in severity from mild to severe to untreatable.

Wild one, CT's discription is pretty accurate.  My son was diagnosed at age 6 with UC.  Have multiple rounds of steroids until age 14, had the steroids at least once a year for at least 5 years.  At age 14 he had a very serious flair, but that was his last major flair.  over the next number of years he decided he didn't need his meds because he felt fine.  At age 23 had a colonoscopy and they found that his entire large intestine was ulcerated, inflamed and found at least 3 precancerous polyps.  So out the entire intestine came out.  For him, it was very painful.  We had lots of set backs due to appliance.  it kept leaking, his skin got burned, we couldn't get it on correctly.  Once we figured it out, all was great.  But he had a lot of difficulty with pain.  In Sept of 2014, he had his takedown, and again he had a few complications.  Both surgeries were extremely difficult for him.  Both surgeries were done laprscopy.  It's usually the surgeons preference.  We had one surgeon that preferred to open him up and the one we used did it laprscoply.  

Bathroom trips, with the ostomy, not so bad. with the j-pouch, a lot.  He wasn't sleeping, up most of the night, slept during the day.  Lost just about 100 pounds.  Had lots of pain.  He always had a very high tolerance for pain. But with these surgeries, not so much.

recovery time, we were told no driving for 6 weeks.  so I'm assuming no work for that long.  I'm sure you can work from home.  But everyone is different. 

if you are having displasia and pre cancer polyps, don't wait too long.  Cancer is right around the corner and it is more difficult to treat when you have IBD.  We were told cancer my son would have full blown colon cancer within the year, most likely.  Can't really make predictions, but based on statistics.  So really, you don't have much of a choice here.  Every patient reacts differently.  We all have a Different experience and you. Ithat just sail through the surgery.  We were not that lucky.  But it is what it is.  Just stay positive!  Good luck to you!

Thanks for the input jeffsmom and ctbarrister.  CT I can tell you've been around here long enough to know that we folks tend to post more when we are having problems and looking for answers (as I'm doing here).   And I do see there's lots of j-pouchers on here doing just fine and simply reminding us all that there is hope.  Clearly the benefits of having the procedure must outweigh the risks substantially - so much that I suppose everyone would still be on permanent ileostomy (correct me if I'm wrong, carries fewer risks, but is obviously more to manage).

I think that is correct.  In addition to your thread, I see two other similar threads started recently by other posters who are contemplating surgery. It seems like the biggest concern is how much recovery time will be necessary, and frequency of bowel movements. In my mind this is a variable depending on what complications arise from surgery (if any at all) and individual response. I think my surgical experience was by far on the rougher side of normal, but I would still repeat the process based on the immense improvement in the quality of my life.

Regarding the frequency of bowel movements, in my mind, this is not as much of an issue as urgency of bowel movements. When I had ulcerative colitis, towards the end any way, I had no control over my bowels and had frequent accidents. The greatest improvement in my quality-of-life was that the control over my bowel movements was restored with J pouch surgery. So even if I have to go 6-8 times a day, there is no urgency to do so.  I also can control frequency with medications like Imodium, so I think this is really not an important concern.

Good luck to you.