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Ulcerative Colitis
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Posted 3/25/2014 8:16 PM (GMT 0)
Hi all,

I'm a noobie here and with UC. Started having symptoms last June, diagnosed in August. Started with Asacol, then Lialda ( started at 2 now up to 4x a day) and Rowasa almost nightly. Starting Humira tomorrow. I'm a 36 year old male, always been healthy until this. Still somewhat in denial with it, but starting to come to terms. I've come close to feeling like remission was right around the corner then it feels like the rug has been pulled out from under me and I'm back to square one.

Anyway, I've been reading here for the last several months, but decided to join and introduce myself.

So... Hey!
Posted 3/25/2014 9:02 PM (GMT 0)
Welcome to the forum. Sorry to hear that you couldn't control your UC with just asacol, but I hope you will continue to use the rectal meds while on Humira.

Hang in there.
Posted 3/26/2014 4:01 AM (GMT 0)
Welcome to the party. We have some great conversations, occasional squabbles and access cutting edge research. Sometimes we just hold the tissues for your tears. Happy reading. It's a great place to learn.
Posted 3/26/2014 1:05 PM (GMT 0)
Hey !
Posted 3/26/2014 1:47 PM (GMT 0)
Thanks guys! Two days ago I was ready to throw in the towel, then last night I had the best night I've had in a long time. Slept through the night with no cramping or toilet trips ( I can't remember the last time that has happened after an enema). So today I'm feeling hopeful. Really looking forward to getting home tonight and starting my first dose of Humira.

I don't know if it's my stubbornness or denial (probably both), but I still feel like if I could just get some relief for more than a few days then I can wean myself off medicine and just maintain with a paleo diet.
Posted 3/26/2014 1:58 PM (GMT 0)
Denial ain't just a river in Egypt, as they say. Our minds are good at playing tricks on us. We are working towards a long term positive trend, not a day of relief.
Posted 3/26/2014 2:03 PM (GMT 0)
Welcome!
Posted 3/26/2014 2:04 PM (GMT 0)
hey fan - just curious - why are you starting humira ?

and ya, maybe after a few decades think about getting off your meds ;-)

jk, not that long - but give your body some time -
Posted 3/26/2014 2:06 PM (GMT 0)
Ha. Maybe I should explain myself better. I feel like if I could just get a few days of relief, my body would just calm the hell down and maybe work itself out. It's more than a day of relief I'm seeking, but I feel like a few days would lead to something bigger. I'm sure that's just wishful thinking/ignorant, but I'd give anything for the opportunity to prove myself right (or wrong).
Posted 3/26/2014 2:13 PM (GMT 0)

soystud said...
hey fan - just curious - why are you starting humira ?

and ya, maybe after a few decades think about getting off your meds ;-)

jk, not that long - but give your body some time -

I know, I know. But stubborn and denial, remember?

What do you mean why?

Here has been my course.

I started with a script of Delzicol. It was way too expensive at first so my doc switched me to Sulfasalazine. I did that for 2.5 months with no change at all. He changed me to Lialda 2 a day and added Rowasa enemas nightly. No overall change, although I did start having "decent" days, whereas before all days were miserable. I went for my 6 month checkup a month ago and there had still been no change (some decent days). He is concerned that I'm still bleeding daily and upped my Lialda to 4 a day and suggested that Humira should be my next step.

I'd love to hear thoughts/suggestions.

Post Edited (jacket fan) : 3/26/2014 8:17:54 AM (GMT-6)

Posted 3/26/2014 2:24 PM (GMT 0)
denial can be a great thing - sometimes it can bite you in the ass hard !

ya, just wondered about your progression - you should add a signature to your profile, that way we all know what you've been up to ;-)

if it were me, I'd give the upped lialda a week or so to see if it makes a difference - have you been on pred or butt meds ? both can be effective, especially the butt meds, depending on your dx and where the inflammation is -
Posted 3/26/2014 2:39 PM (GMT 0)
Sig line added.

Been on the upped Lialda about 3 weeks now. No change to speak of. Doc does not like prednisone, but I've been doing Rowasa enemas almost nightly for about 5 months now. Those do seem to help.
Posted 3/26/2014 2:47 PM (GMT 0)
ya, jf, nobody likes pred, but it does have a place in the treatment of this crap - it just settles things down so your body can relax for a bit - but it's definitely not something to rely on for very long -

hope the humira helps - I've never tried it - maybe someday if they take the stabbing part away :-)

have you made any diet changes ?
Posted 3/26/2014 3:15 PM (GMT 0)
I didn't eat "bad" before, but my wife and I have switched to Paleo. We started off pretty strict in the beginning, but have backed off some. Now it's mainly paleo during the week and half paleo on the weekend. I still drink alcohol on the weekends. I haven't really noticed a difference from when I do drink and when I don't. In fact, I haven't really noticed any kind of adverse reaction to any foods. I enjoy eating paleo, and I feel better overall, but I have not notice it really help with my UC. My wife and I have a very active social life so we're always at some kind of gathering/party. So that has been tough, but I think I'm going to just stop with the alcohol and see if that helps, even though I haven't noticed an adverse reaction to it.
Posted 3/26/2014 3:40 PM (GMT 0)
unfortunately, for some freaks like me, food doesn't normally affect me immediately - it can take weeks or months -

I just try to eat the foods that I know don't bother me and avoid the known problem foods -

sometimes like you said, you just need to give up something, and see if it helps - might take 6 months - the way I see it, I can live and actually thrive on a paleoish diet, so the only reason I stray is because of desire, not need - and every stinkin time I give in to my "wants" it bites me in the ass - live and learn -

just keep at it jf -
Posted 3/26/2014 3:53 PM (GMT 0)
i hope the humira helps jf!!!!

i follow the paleo diet, too, and love it. i have to be VERY CONSERVATIVE with fiber or else i will have a bad day. literally, no more than 2 cups of fiber (fruits/veggies) per day and nothing raw. i mostly stick to meat, eggs, butter, and coconut for my meals. it's high fat and fills me up without all the fiber.
Posted 3/26/2014 3:57 PM (GMT 0)
Welcome to the forum...I know your gonna hate me for saying this..BUT alcohol is a big no no for most people with this disease, I've really struggled as I like the odd beer, but it doesnt like me, what I have found though is that I can take a small white wine, with meals, but even then, I just cant do it every day. :-)
Posted 3/26/2014 4:13 PM (GMT 0)
Thanks, guys!
You're right, poppie, I hate you. tongue Nah, I know I need to lay off, and I'm getting there, I'm just doing it kicking and screaming!
Posted 3/27/2014 3:37 PM (GMT 0)
I did my first dosage of Humira last night. Not expecting to do 4 shots! It really wasn't that bad, though. The first kind of took me by surprise, the click, the feeling of actually injecting myself... I accidentally let go of the button, which in turn, makes the needle retract. So I lost a little of the medicine. The other three were very smooth. Slight sting ( it is a needle), slight stinging sensation of the meds (a second, maybe two). Very easy, but I've never had a thing with needles so I wasn't too concerned about it. Here's to hoping it keeps going as smoothly!
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