Do I need to change my expectations or medications?

Contratulations!
Lots on your plate to consider med-wise and other for the future....
Good you have family and friend support. Try not to do it all ....and if you need to, ask for help to lighten the physical and emotional load.

Hugs,
q

I've had surgery, and still have issues. I enjoy my life and am able to do things but for example if I had to go on a boat trip, I'd worry A LOT and wouldn't be able to do a whole day boat trip. Tailgates for football I dread a little just because I hate having to go in porta potties as a guy. Bars don't always have the cleanest bathrooms so sometimes going out at night gives me a little anxiety, nothing like with UC just more of a dreaded "god I hope not".

I have really stubborn inflammation in my rectal cuff that causes me to still have to take ~5-10 mins in the bathroom per trip to really fully "empty", not like most jpouchers that go in 2 secs. This also still causes blood sometimes and some discomfort. Also have some hemmies that cause some unfortunate itching every now and then especially if my output is more liquid like.

I sometimes have good days, which means I go once in the am, once in the afternoon and then once at night and am able to sleep through the night. Sometimes if I eat something that gives me a lot of gas I go once or twice in the am. Twice or so in the afternoon and maybe 1-2 times at night, plus once in the middle of the night that wakes me up. Usually I wake up to go once at night so 4-5 during the day and once in the middle of the night is usually average for me.

If you don't show symptoms, but blood, I'd wait until things got worse. That's just my opinion. I'd prefer that, but I'm also doing alright now and am doing better than with full UC and am able to live a normal life.

Just a note that I've wondered the same thing. I read somewhere when I was first diagnosed that people still have symptoms, even when in a "successful" treatment. Also, I think things like stress, hormones, diet, etc. - individual for everyone! - can push some of us over the edge and give us symptoms (or keep us in a mild flare) despite all the good we do with Remicade, Entyvio, etc. etc.

When I first started Remi and thought I was doing great, I felt like I was the most normal I'd ever been, that I could eat more normally, go back on birth control, and allow myself to get all kinds of stressed and panicky over work, burn the candle at both ends, etc. Now I'm in a flare and trying to figure out what the next step is - more frequent Remicade? Another drug? Steroid help with the Remi for a little bit?

I also keep thinking about surgery (a bag) and about how wonderful it would be to never have to do #2 the "traditional" way, ever again. I'm not kidding.

So I guess I have adjusted my expectations, but my GI keeps saying we strive for feeling "perfect" and that he feels that's what I should be getting, so maybe my expectations are still too low ;)

I'm sorry if it's not always the most positive outlook, I just try to be honest and not lie to myself/others.

I have had a few visits and calls with my surgeon and been on numerous meds, also have low iron (my hemoglobin is finally back over 14 though). So still some doc visits and still some complications thanks to UC (I'd guess) with other issues.

All in all though, don't get me wrong, surgery saved my life and I'm glad I did it. I am able to live life again, even starting grad school in January. Everything has it's pros and cons though, just about what matters most to you.

https://www.healingwell.com/community/default.aspx?f=38&m=3812531

That's my entyvio chronicle. I know I posted about headaches -- not sure it was/is the entyvio because I've had migraines for a long while and now have some so sinusitis problems that cause headaches and I think that is also pre-entyvio. Haven't had any more bladder infections either!

Haha Quincy! Yes he will be getting one. And I will be getting my tubes tied if I need a c section.

But I attempted the iud to see if it would stop my period. After my second child it was horrific. It worked in resetting things. Unfortunately it had to come out for adverse side effects...had a copper iud pre uc...my body reacts differently to them...in a bad way. But it made my periods much lighter and after removal it stayed that way.