Question for those that went with surgery

I opted for surgery with I was fairly "fit and healthy". What made me do it was I'm 24, have done pretty nothing with my life due to this horrible illness, I was fed up. It's been 3 months since my operation, can safely say it's the best choice I ever made.

It's a very personal thing. Some people, including me just don't want to be on medication for the rest of our lives. In the long run the meds could end up doing more damage than the actual illness. Other people just can't stand the thought of a bag of poo on their stomach but it's really not that bad.

With UC you generally have the option of a J-pouch which is an internal pouch made from the end of your small colon and everything is in the side body. Once again you need to look at the pros and cons and make a decision for yourself.

What ever you decide to do, I wish you the best of luck

I was in a constant flare for 1.5 years. Failed all mesalamines, diets, azathioprine, remicade (double dose, 6 weeks), and entyvio. Decided nothing was going to work and had surgery.

Surgery has its pluses and minuses. I am thankful I did it, I was in really bad shape, struggling to get to work, worried about what the future held, not responding to drugs... The worst for me, was wondering when the next flare up would be. Even if I got a year or two out of a drug, what about the next flare? I started to feel like surgery was inevitable, it was either now or in ten years. I figured it would be easier while I am younger... The big thing to look out for is fertility issues. I don't want children so it wasn't a consideration for me, but most people, it is a huge concern. The other thing is, you have to realize that without a colon you will go to the bathroom more. Some people would rather struggle with UC than accept a life of going 6x a day. It's not convenient going more often, but you can go when you pee. Bathroom trips aren't much of an issue for me at all since surgery. Before surgery, my entire life revolved around the toilet - so this is a huge improvement for me.

Thank you for your replies. I think I'll bring up surgery at my next doc appoitment. I see surgergy as a way of settling things,as opposed to the rollacoster of ups and downs that is uc.granted all my "ups" have been from prednisone so I guess I should give entvyo a chance first.

If you're refractive to everything and 20 percent of UC patients fail response to everything, then surgery is inevitable. Most try at least 2 biologics before throwing in the towl, as their is a point of diminishing returns at that point (those who fail multiple biologics are likely refractive to pretty much everything). Some do hold on hope and it is possible something will respond (we had one pull into remission like that thanks to xeljanz) but it's mostly a question of how much time and suffering do you want to go through while waiting for yet another medication and mix and repeat while months and years fly by with minimal quality of life. Surgery is an out and the majority do very well and wish they'd have done it sooner. Very personal choice though.

FYI Entyvio is a very slow worker taking upto 12 weeks to show a response within some folks. Stelara (currently off-label) appears to work faster. Xeljanz is another off-label some have had luck with. Ask your gasteroenterologist how long a typical response will take for each.

Certainly explore the surgery route, perhaps even get a surgery consultation (a no obligation question and answer session) and see how it will affect you. A typical jpouch procedure is 3 separate surgeries, each with a recovery period, over a series of months. It's certainly good to know a surgeon whose skilled in jpouches and ask and ponder it when you have time and health to (rather should it become an emergency surgery later on).

Draw up an attack plan, figure how much time you want to budget to being sick and recovering and see which option best fits your plan. Absolutely nothing is instant gratification though.

Thank you all for your advice,I really appreciate it.

For me it all came down to quality of life which was non existent since my UC was so severe. Take a good hard look at your quality of life:
Can you work?
Can you have a social life...i.e. Can you leave the house?
Can you eat real food?
Are you always in pain?
Are you always tired?
Do you frequently cancel plans?
Are your meds giving you side effects that are effecting your daily life?
Are your meds even helping?
Those are just some questions you need to ask yourself.

NiceCupOfTea said...

ks1905 said...
I have no urgency or accidents but I do need to treat it with medication.

Is that because the medication is working though?

My urgency is much less bad than it used to be and I can't remember the last time I had an accident - whereas at one point they were fairly common.

But I do get abdominal pain (that I'm pretty sure isn't IBS) and bile diarrhoea which causes sore butt: it sounds all fun and games until you go to the toilet, and then it's excruciating. Calmoseptine helps, but doesn't stop it from getting sore in the first place.

Correct. But my pouchitis is much easier to treat than my UC ever was to treat.