Humira or surgery for UC

How long ago did you start taking humira and how long did it take to see results? The police academy is really demanding its from 9am-4pm mon-fri so if I can't get this under control soon I'm nervous I won't be able to make it. My G.I. specialist made an appointment for me with a UC specialist but it's not until september 8th but its to talk to him about Humira or other options. Also I have never heard about people taking celebrex for UC, maybe I'll talk to my doctor about it. As for asacol I have been on it since I was diagnosed and I don't believe that it actually works for me and immodium will work sometimes, and sometimes it does nothing! Thanks for your reply to my blog and I hope to hear back soon

Thanks for the reply! how long did it take for you to heal from the surgery? I've read about 3 months. After dealing with this for 6 years, I believe it probably is time for surgery. The only thing holding me back is I have read that if the "J pouch" fails and causes me other problems, I was be stuck with having the bag outside of my stomach for the rest of my life.

I could not get insurance to cover Humira, did you check that yet?

You have been struggling for a long time already. I wish I had considered surgery when I was young, and avoided all these years of struggle. Now it would be difficult, because of my career.

it took me about 6 weeks to get where i felt what i thought was good (the way i felt when i had UC on a good day!) and then about 3 months to get where i actually always felt good! Does that make sense?
It just takes a while to get your energy back. I took pain pills for about a week after i came home from the hosptial, then i only took them a few times after that.

I didnt have the j-pouch, i have a perm ileo (the bag) i chose that route because even though jpouches do have a very small failure rate, i just didnt want to take the chance, i didnt want two surgeries, and honestly, i never ever wantd to use the bathroom the regular way again!

Anyway, having a bag is easy, noone knows (i promise!) it doesnt keep me from doing anything or eating anything or going anywhere.

thanks for the reply summerstorm! how large is the bag? I've heard it is very small, but I'm worried it would hold me back from being able to run, do sit ups and push ups. For the academy I have to be able to do a certain amount of push ups/sit ups and run a mile and a half in a 11:58. I run daily and everything, but that's because I'm taking prednisone and it stops the bleeding. When I have bloody stools it starts draining me physically and mentally, so I'm worried that the stress of the academy will make me flare up really bad. I see a specialist Sept 8th so I'm going to see what he thinks, my G.I. doctor wants to try to do humira but wants the other specialists approval first. As for sweetie, do you think immuran is a good medicine? I have read about it a lot on here. Seems that a lot of people have taken it. I have taken- Flagelle, Purinethol, Prednisone and Asacol. Only medicine that seems to work is prednisone.

there are dif sizes of bags, i wear the larger and it comes down a little onto my thigh, i turn it up so that it stays in my underwear. It wont be in your way, i just did some situps a little while ago, i cant do a push up, i never could, but i cant see how it would get in the way. I keep up with a 4 year old boy all day, and if you dont know thats ALOT of running, lol. But seriously, i was going and walking/runnign on the treadmill or at the park about 3 miles a day, and it didnt cause a problem at all.
You probaby have misconceptions about it, i sure did! i thought it was gonna be like a hot water bag (the kind they show on little house on teh prarie!) hanging off me. Its not, there are dif kinds, mine is cloth covered and beige. I go swimming, i went to the waterpark, i go to the regular park, i went hiking, i even did some pudding wrestling with it!!! The only thing i changed was putting things in my left pocket instead of my right. And thats just a personal thing. It wouldnt really matter, but after i stuck a pair of earrings in my pocket i realized that was a bad idea, lol.
some of my closest friends who had spent the night at my house, seen me change clothes (people should knock, lol) gone swimming with me, you name it we did it, had NO idea until i told them, and you know what? One of them was actualy jealous!!!

I dont know much about the jpouch but Suebear has one and she is like superwoman! she hikes like across countries and stuff and has no problems.
It would just be the recovery time that would cause you a short term problem.
But really its sooo worth it!

how often do i empty? that depends on what i eat, but usualy just 4 or 5 times a day, i can go 3 or 4 hours without emptying at least. If i need to go longer, like if i am going on a car trip or something, ijust take some immodium and i can go 6 hours or so. Certain foods make you have to empty more, and of course if you eat a huge meal then you might have to empty more often. It only takes about 2 minutes to empty.

Do you have to have a sink? No, there is no need for a sink. All i do is unroll it, empty it, clean it out with some toilet paper, roll it back up and get up. I of course need a sink to wash my hands though, lol.

Are there noises or smells? The first few weeks you will have alot of gas, and there will be some noise, but that doesnt last. And i rarely have any noise now. If i let myself get hungry before i eat i will sometimes have some gas and noise. After the first few weeks there isnt much gas at all. You can take some gas-x if you happen to get gas, or you can take a few gas-x as a preventive measure against gas. I like to do that sometimes. Also, if you are going somewhere and are concerened about noise, take a small piece of cloth, fold it twice and put it over the bag between the bag and your underwear!
Although, in 2 years, only once has anyone heard it! And i just told her it wasnt what she thought it was and she said oh are you hungry or something?
There are no smells when you are wearing it. Obviously it smells when you empty it, its poop after all, you can put mouthwash or deodorizer in there to make it not smell. the only time you will have a smell is if you should have a leak. Which is very rare! You may have a few leaks the first few weeks, its a learning process after all.

i know this is awful of me, but when my friends are in the bathroom for like forever using the bathroom i think, boy im so glad i dont have to sit on the toilet liek that anymore!!!

I had this fear that i was gonna wake up from surgery to see Brian Williams on tv (i think he's cute, thats why it was him) saying a cure had been found from UC and it was as simple as one pill!
But i knew realisticly that that was not gonna happen! And i knew i could wait my entire life for a cure that may not come and waste time and take all these drugs doing god knows to me, or i could get the surgery get that awful thing out and go on with my life! And thats what i did!

If you have any other questions please ask. It was so helpful to me to have people answer me quesitons and to hear people who had sucess.

I've had my ileostomy due to UC for 33 years now since I was 10 years old. It was the best decision my parents ever made for me. No one, except my close friends at school knew I had it (and only a couple of the teachers). I would empty in the school loos at morning recess, lunch time and afternoon recess (the same as when others went to the loo) and I'd be fine the rest of the time.

I've held full time jobs since leaving school, travelled to the USA, UK, Singapore, Hong Kong, Thailand and most of Australia (I'm an Aussie) without a problem.

When I started my current job, I was looking at my ostomy website one lunchtime and the girl who was training me looked over my shoulder and said 'THAT'S where I know you from!'. She had an ileostomy too and had been on my website several times looking for info. If not for the fact she saw me looking at my website, neither of us would have known the other had an ileostomy! So, even ostomates can't tell lol

xcwilzx:

Imuran is a good drug, does cause lymphoma but there is a small chance for it though. Ask your doctor about it, it helped get me into remission and helped keep me there. I've been off that drug since January.