UC surgery options without the need for a bag ?

Hey guys , I’m still not at that stage as of yet because touch wood normally Meds and prednisone eventually get me into remission, but because I’m having such a hard time with this particular flare I’m going through ( worse one in 10 years ) , I have to potentially explore surgery if it ever come to it. The problem is, I just don’t want to live with a bag attached to my body all my life. Cure or not, it’s just something I’m really not keen on. Are there any other options where you can have surgery without the need for an attached bag that shows ? If surgery was my only option, I would want a procedure that was internal and didn’t showcase a bag on the outside

Thanks Ipoop. I guess it’s something I have to consider and as you said, I’m a young 33 year old Male with obviously that in mind being self conscious about having a bag on show. Good to know there’s options if need be. Hopefully it will never come to that and 99.9% I respond to meds.

You’ll feel so much better. If you read the archives you’ll find people who had a bag and were worried about having one find it not to be as big as a deal as they expected.

You can get a one step surgery (No bag) but you risk a lot of complications — it’s best to heal and then have a scope and pouchograph to make sure it healed correctly.

You’re best to have a bag for a few months, some people can have it for a few as 6 weeks.

iPoop said...
It's great knowing we can say "Check please, I am done" and be rid of an UC for good with a colorectal surgery

That's not always the case. Please be aware that your auto immune disease doesn't necessarily just vanish after you have your colon out.

I have been in my local IBD support group long enough that I have known people since diagnosis of UC all the way to j pouch take down. A lot of them are really happy. They say they wish they had the procedure done sooner. One guy was stuck in his house for almost 6 years before he finally threw in the towel and got surgery. I think when your disease is severe, unrelenting, and you are miserable forever without any breaks, it makes sense to just get your bowel taken out. You just get so fed up that you figure nothing could be worse than what you've already been through.

My colorectal surgeon told me last year that the majority of people who get j pouch surgery are actually not 10/10 critically ill patients, they are more like 5/10 chronically ill. They aren't so sick that they are debilitated, but they aren't well enough that they can live a total life. For them it's kind of a tease... if they were just a bit better, they could live the full life they want. He said that these patients are most of the patients he sees.

For someone like me, it's hard because I just had 2 years of sustained remission and was back to living life full time again, on my terms. No doctors, no meds, no nothing. It was incredible. I am flaring now and it's very discouraging, but I know that remission is possible so I have something to aim for again.

I think if you have never tasted real freedom since your diagnosis and it's been a really long time, then surgery might make sense. If the suffering never really ends and the life you want is passing you by, it might be something to consider. For me, as long as remission is remotely possible, I just can't get a colectomy. It has real risks of permanent injury, and once your bowel is out, you're in the modern medical system forever. In my IBD support group, I have heard some horror stories. I won't write about them because I don't want to scare people, but let's just say that if you're one of the unlucky 15-30% that j pouch fails for, then your life could end up being way more miserable than when you still had your colon.

Unless you're dying and unless you've been living half a life for 10 years, then I'd keep searching for other options. There is so much to explore out there... conventional and unconventional. I have heard stories of people getting better because of the weirdest things. Miracles do happen!