Anyone Considered Surgery While In Remission?

Just lately I've been thinking about maybe pursuing a j-pouch,for various reasons.At 37 years old,I have no wife or kids,and I've been in the same job for 21 years.One romantic notion of mine,is to one day "jack it all in" and go travelling,taking odd jobs as I go.However,I can't stay in remission without Azathioprine,which could pose to be tricky for blood tests,moving around so much in foreign lands(I'm English and would travel through Europe).

Also,while I'm still in a secure job(my place of work has seen many changes,who knows how much longer it could be secure?)it would be a good time(if there is one)to do this,recovery between stages etc.

All that being said,even if I don't pursue the travel notion,I still wonder if a j-pouch might be the way to go,what with all the heavy duty meds and all.If I want to stay in remission,it looks like Azathioprine will have to be very long term for me,and maybe the risks that carries make surgery a more viable option?

These thoughts have been going through my head for the last several years,and whether I could actually "bite the bullet" and go through with it,I'm not sure.However,it would be nice to hear some other opinions about it,especially if you have had/are having,similar thoughts.

My daughter had surgery 5 weeks ago. She had 3 big flares in 1-1/2 years. Never had a minor flare. Each time she was put on a new, more potent drug. And prednisone. Back in the fall of 2007 (her 2nd flare) we talked about consulting a surgeon in the spring (when she would be in remission) so we would be prepared if we had to make a decision. Unfortunately she flared in the spring. She was in remission when she had her surgery.

Ediekristen is right. It is much better to go into surgery healthy. But it is also very hard. You almost forget how bad the flare can be (I think it is very similar to labor and delivery--you can remember the pain but you can't relive and feel the pain). But we knew it was only a matter of time before she flared again. And she was towards the end of drug treatments.

I think either way we would have consulted a surgeon this past spring. At least to get as much information as possible and to be as prepared as possible. If my daughter had smaller, more controllable flares, maybe we would have waited longer. I don't know. I do know that this was the hand she was dealt, and this is how we dealt with it. Now hopefully she will be able to enjoy a long and healthy life. And get through her last year of high school without being sick so much .

it is not crazy to to think about surgery. i wish i had thought about it sooner, lol. it is much better to have it while well, esp since you are not on pred. So many of us, myself included, end up having surgery while in a major flare, so we are on pred, which makes it much much harder to heal up and get your energy back.
I had the same feelings you did, although other than the first few weeks with the remicade, i was never really doing good. And i was always waiting on things to quit working.

I think it is better to avoid surgery for as long as you can if you are managing to get into remission and things are fine for long periods. You just never know, what if a wonder drug or cure is round the corner? God willing.

I've talked to surgeons and GIs, and all of them have said there won't be a cure for many many years. I was told by a Cleveland Clinic GI that Humira being approved will take another few years, and stem cell, if it works, will take even longer to hit the markets. (Sorry to burst anyone's bubbles).

Silent Lucidity, it wouldn't hurt to get a surgical consult. Even if you don't decide to have surgery soon, at least you have met w/ a surgeon and can establish a relationship that will be helpful when you do need surgery. It is best to have surgery during remission since you'll be at your healthiest. And there have been people who have had surgery w/o even trying immunosuppressants and biologics b/c of the potential side effects/risks.

Personally, I'm having surgery next month since Remicade is not working and I know I cannot live "normally" while in a flare. I'm ready to move on.

I was just in a meeting with a doctor yesterday who confirmed there are no "cures" in our near future. 

I think, in your situation with remission, that it would be best to put off surgery until your next awful flare.  You could have several more years of remssion and quality of life.  I had surgery after a chronic 2.5 year flare and although I was pretty beat up by UC I recovered just fine from surgery; was back to work 3 weeks later and back to hiking. 

Sue

To me it makes a lot of sense for younger people to consider surgery even when they're in remission, especially if they have frequent flares or need to take medications beyond the 5-ASA's. The risk of colon cancer and bad effects from medication, while still small, does increase with more years of use. The threat of flaring is always there, no matter how long you've been in remission. It's a calculated risk either way, and everyone has to decide for themselves which route to take.

For those of us who developed UC in middle age, it probably makes a bit less sense. I'll probably never have UC for 40 years. My lifestyle is more settled and it's easier for me to manage. On the other hand, one could argue that the older I get the harder the surgery will be. Right now I'm well controlled on Remicade; if it fails me, I'll have to seriously consider surgery.

I can see both sides of this dilemma. (Big help, eh?)

Let me say that surgery is not always without its complications, either. First of all, you can die from surgery. Second of all, not everyone has a spectacular outcome from surgery. My mother has a J-pouch, and for the most part, it's good. She's now 77 and she had her surgery in her early 50s. She does have pouchitis now and then, and has to use canasa suppositories daily to try to keep that under control. She's had a stricture issue, too, in the rectum. It's definitely better than a flare, but not as good as how I do on the Azathioprine. Even when her pouchitis is completely under control, she still has 3-5 bowel movements a day; she has a few more when her pouchitis is acting up.

I think we all, when put on Azathiorprine, were alarmed with the potential side effects. I believe those side effects are more likely in folks who are taking Azathioprine for things like trying to prevent an organ rejection (in much higher dosages). So far, I haven't encountered anyone here who has developed lymphoma from Imuran/Aza, but of course, there's a risk with everything you put in your body. I'd be more concerned, frankly, about steroids.

Good luck with your decision-making. Only you can figure out what's right for you. I've been in (mostly) remission since going on Azathioprine for about seven years now, and I live a pretty darn near normal life because of it.

Mitz