Hi all, I have talked to my surgeon and doctors and they told me the surgery is my best bet. I have heard so many horror stories about j pouches though and was hoping for some positives, I’m really debating over this or a permanent ileo. I also am thinking maybe the healthy j pouchers don’t need these sites anymore so that’s why I’m not seeing anything positive. He did tell me about going probably 4-7 days when I adjust and I don’t have an issue with that even if it were like 14. I guess I’d just like some positive feedback from this procedure if it helps at all they’re doing a two step. I also posted this in the Ostomy section as well, let me know if I am posting too much as well I’m not sure on those rules lol anyways any positive feedback would be appreciated!

I am happy to hear that 3timechamp. I am very nervous and your reply helped!! I hope the next two go well for you!

Mak where r u located?? Where would u have surgery?

What about entyvio?
I had surgery. My experience is in my signature. It's long, and detailed. I am very happy to be done with all the issues I had living with UC. It's a tough decision, and I wouldn't wish it on anyone, but it can be very liberating if it's your best option.

I asked about entyvio but unfortunately they said that the medication takes some time to kick in and that I don’t have that kind of time. I will definitely go look at your signature. Yes very tough decision, everything feels so unreal!

Thanks for your input ks. I am not concerned about being stuck with a permanent bag if it fails, I would be okay with that. I guess I was just really worried about the pouchitis part, but your comment made me feel better about that.

Thanks for your update kanva.. keep the site updated about your surgeries I’ll definitely be reading them! I was originally from a different hospital too about two hours away but got transferred here because that hospital is not well known and I didn’t trust having my surgery there but Mayo Clinic in MN is where I will be going as well if we have any issues!

Mak37 said...
Thanks for your input ks. I am not concerned about being stuck with a permanent bag if it fails, I would be okay with that. I guess I was just really worried about the pouchitis part, but your comment made me feel better about that.

Living with pouchitis is so much better than living with UC. It is easier to treat, responds better than UC and doesn't affect me very much.

Think of it this way, if you have pancolitis your whole colon is affected (5+ feet) but if you have a j-pouch with pouchitis then it's only about 6" of effected intestines.

From what I've read, the majority of j-pouches go well with most getting an excellent to good outcome. There are a minority that have poor outcomes and some warrant a reversal of a j-pouch to a stoma. In the end it's a leap of faith (do I truly have UC with 100% certainty?, will I have a good outcome?, etc.), the odds are generally in your favor. There's horror stories in absolutely everything (have you seen how difficult using an old-fashioned mop is in infomercials?).

A surgery is by no means a summertime stroll in the park, it's multiple surgeries with recoveries that will take time. I'd just figure how much time you want to set aside to being well. There's a time cost to trying a new biologic and expecting results. There's a time cost around the surgeries. Figure what makes the most sense.

Often, folks fail two biologics before going the surgery route. As failing two makes you statistically unlikely to respond to the rest. It's always said that the best outcome is to be in a remission regarding quality of life. However, a remission isn't always possible for all, and many months and years end up going by struggling trying to achieve it. In the end it is what you want. There's always opportunities of dozens of more things to try, but does that make sense in your time-budget?

J-pouch, eevised my initial post accordingly.

Here is the thing, if you are this close to surgery then you'll probably need it at some point in the future if Remicade "works/saves you". I was saved twice by Cyclosporine but I always knew that at some point that I'd need surgery. So I postponed the surgeries and lived my life but I needed Prednisone every so often to control my flares. In December 2016 I needed my hip replaced because the prednisone killed it. So instead of 3 surgeries I've had 4 surgeries, directly or indirectly from UC.

You can read more about my hip surgery in my signature.

Yes ks that is exactly what I am worried about. Right now though they have me in the highest dose of IV steroids and still not working. They are making me get a dexa scan soon (I think that’s what it is called). I definitely don’t want to get hip replacement surgery or any type of surgery like that, sounds painful and also preventable. They told me they weren’t even going to try cyclosporine on me, I brought it up... I forgot the reason for not being able to do it though

I gave into having surgery because I felt the way ks described. If I was able to get it under control, for how long would it last, and what kind of quality of life would have waiting for the next big flare up? The drugs were taking a toll on me physically and mentally regardless. Ever since i was on pred, I was up at least 10 to 20 pounds over my normal weight. I looked and felt sickly. I don't anymore.

That said, some people respond to biologics for very long periods. So I don't want you to think it's not possible for you. It may be. I think the more severe and the more difficult to treat, might be some indication of the level of effectiveness, but not necessarily. For me it was. Others have had symptoms disappear nearly over night, and stay that way for long periods. The lack of response to Humira makes Remicade less likely. Entyvio is a slow working drug, with about 40-50% response rate among UCers. If you're willing to go another few months, it could be worth it, but the question is, even if you waited, and it worked, how long would it postpone surgery? Maybe a year, maybe two, maybe 10. Who knows.