Symptoms Prior to J-pouch and J-pouch Outcome

I'm looking at surgery too. Have spoken to a colorectal surgeon as well (not a great one but a good one--she is local and I saw her about my fistula). She said outcomes are better when you are off of immunosuppressants (prednisone, remicade, 6MP, etc.) which makes sense because we are more prone to infection when our immune systems are suppressed and the greatest risk of having any surgery is infection. Also, you do not heal nearly as efficiently when you are immunosuppressed.

Now that being said, most people with IBD are taking immunosuppressants prior to surgery because obviously we try drug therapy first and use surgery as a last resort. The j-pouch *can* be performed in one surgery, or more typically is performed in 2 surgeries. But Surgeon said that they have better outcomes insick/immunosuppressed patients when they perform the surgery in 3 parts (so 3 surgeries, each at least several months apart).

But of course, a great surgeon who has performed many j-pouches will be able to look at you as an individual and be more specific about how to achieve the best outcome for you, personally. Best of luck. I'm about done with drugs myself but not quite ready to ditch my colon.

You say you have 5 BMs a day. Just be aware that you'll have at least that many with a j-pouch and possibly quite a bit more than that. I personally would not have surgery with those symptoms, unless I had advanced dysplasia or something. But that's me though.

I was only having about 5 BMs when I had surgery, but I had so many periods where I was going 20x a day over the years. The reason I was going 5x is because I wasn't eating properly in order to avoid going to the bathroom. If you're really not willing to try 6mp or imuran, and the biologics are not working for you, your options are limited. I personally would probably try 6mp/imuran. The chances of cancer are very low, but it's a decision you have to be comfortable with & if I were a younger male, I don't know if I would be either. I don't think your condition prior to surgery has very much to do with your situation after. I would imagine the majority of people who have surgery have the worst possible colitis and they go varying amounts afterwards. The amount you go is probably more to do with the size of your jpouch. Some people take imodium or fiber to limit output, I do not bother, I just go when I pee. It's not ideal, but I'd prefer 6x a day on my terms, than 5x with no option on when or where. At least with the pouch, I can get to a toilet - but it's a big procedure, and if you have other options, it definitely wouldn't hurt to give them a try. FMT has always interested me. I didn't bother with Stelara or Xeljanz, they would have had to be through a trial and it was too time consuming. I didn't want to wait around another 6 months to get going on the trial and see if it worked. You may be a better candidate for waiting since you say your symptoms aren't too terrible.

Yeah I realize it's definitely a personal thing. Not rushing into surgery, but I've been dealing with this for two years and haven't been in remission since. Still going to try out a few more things/meds, but it's so frustrating that I'm essentially locked in my own house. I see other people my age traveling, dating, going out to do different things, pursuing more education and it's frustrating that I can't do any of those because I'm concerned I'm going to **** my pants. Urgency has been severe for the past two years and it doesn't seem anything helps--rectal meds haven't done anything and I've given them quite some time to work.

I really don't enjoy the idea of having surgery. I doubt anyone does, but we just gotta make the best of the situation we're dealt. I have a few more things left to try, but I doubt any of those are going to get me to remission since I've tried about 10 other meds and 4 different doctors (not to mention lifestyle changes). At this point, I guess I've gotta understand that surgery is likely and make the best decision possible based on the current situation. Fingers crossed that I can find something that can get me into remission, but I'm not holding my breath.

Big decision though and I still need to gather some more info to make the best decision possible. I seem to be fairly stable now, so at least I have some time to experiment more and really think things over without rushing into anything.

Post Edited (NostalgicCowboy) : 5/28/2017 2:33:11 PM (GMT-6)

I am three weeks post colectomy surgery, and here's what I can tell you from my experience:
Having your body in the best shape possible before surgery helps you have the best recovery possible. I would have liked to have been off of prednisone, but that wasn't possible. I tried to rest, walk each day, eat as much healthy food as I could handle, and stay positive. After surgery, I've tried to maximize my recovery by resting a lot, walking a lot, eating as much healthy food as possible, and staying positive. So far, so good.
I think the other piece of recovery, though, is governed by the randomness of UC. So much of UC doesn't seem logical, and its symptoms and experiences are so personal.
I also worried that I wasn't sick enough to really get an improved outcome from the surgery. I was having 5-8 bm a day, and I was afraid the jpouch would actually be worse. I was really dreading the ostomy stuff. So far, I have found that the ostomy isn't much of an issue. Maybe I am emptying it 5-8 times a day, but bathroom trips aren't the huge mental and physical experience they once were: I go, and then I'm done and don't think about it. For me, that's a huge relief. Who knows what my outcome will be after the jpouch, but I'm hopeful it will continue to positive.
Overall, I think you have to take as many of the facts as you can get, then decide how they apply to you personally. How will YOU feel if you have the surgery? Do you and your doctors think YOU will feel better? Whether you're going 5 or 50 times a day, if you feel miserable, you are miserable. It's OK to want to feel better.
I know surgery is hard for most of us to reckon with. But you know what? Ditching meds is pretty awesome!
I am relieved to have a huge part of my brain back that had been consumed by the logistics of dealing with UC: what to eat, how I felt, how I might feel, when to take meds, when I was going to have to go to the bathroom, etc.
So all that is just my experience and opinions, but I hope it helps you sort through your situation.

Kanva said...
I am three weeks post colectomy surgery, and here's what I can tell you from my experience:

Thanks for the response and advice. It seems like I share much of your sentiment prior to your decision to have surgery. Glad to hear it has worked out for you so far. I hope everything else goes well for you! Hoping I too can find some relief--one way or another.

Julee70 said...
I felt that going into surgery I had tried everything possible. I also had no choice, because I had pre-cancerous cells. Otherwise, I would have kept trying to control the disease.

Julee70: I'm curious why you would have kept trying to control the disease. Fear of surgery issues? The permanence of surgery?
Not judging ... I kept trying for control as long as possible, too. I think I'm still trying to work through my emotions around choosing surgery for myself, so it's nice to hear other people's perspectives.