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thinking it's time for humira

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Ulcerative Colitis
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Posted 10/15/2009 4:11 PM (GMT 0)
Hi folks- I just got back from a GI appt, & I'm pretty disgusted- I had an infusion one week ago today, & I crapped my pants en route to the doctors! It's the stupid urgency that gets me- thankfully I left early enough so that I could pull over at a McDonalds & wash up. Also, my ever-trusty car kit really came in handy- didn't even have to change my underpants! (I was able to go into a plastic bag, etc.... eyes ) This SHOULD NOT BE HAPPENING!!!!!!! Not after a mega-dose of Remicade! I try to explain it away, "Oh, my periods due..." but.... so we both figured the Remicade has really lost it's punch for me.I knew it was happening, but to occur so suddenly- it's like I never got any infusion. Nothing is worse, but it sure as hell isn't better. I talked with my insurance company, & they will approve humira for use in UC with a prior auth. from the doctor, stating why he/she wants you on it. Soooo..... I'm going to give the Remicade one more try, get one more infusion & see. If I get the same less-than-stellar results, it's on to Humira. Which scares me because it's a true last resort. Now, my symptoms aren't bad enough to warrant surgery- hey, if I have to wear a real diaper everywhere I go, so be it. But it still sucks! The GI wanted yet another sample to check for c diff, & he gave me a Flagyl scrip. I may fill it, am undecided- I've been on it before, it tastes gross, makes you nauseous, & barely helps . Although, I am hopeful- it seems as if the majority of people on the forum who've had to switch to Humira have had good results. So just maybe.......
Posted 10/15/2009 4:18 PM (GMT 0)
Poor thing. That is terrible. Why don't your symptoms warrant surgery? Is the issue you have ONLY urgency? That is my least favorite symptom. Mine has improved but it has taken an incredibly long time. I am so sorry you had such a bad morning. Thankfully you were able to handle it without a big mess. I hope you have more luck with Humira.
Posted 10/15/2009 4:26 PM (GMT 0)
Hope the next dose of remicade works for you...before you get on humira.
Posted 10/15/2009 4:27 PM (GMT 0)
thanks- I need the sympathy right now! Yes, urgency is the biggest problem for me. I had to leave the house at 8:00am, which always spells trouble. Even though I had gotten up at 6:00, & had gone to the bathroom at least 5 times before I left. I don't know what's up- it's formed stool, soft but formed- I just go A LOT- in the mornings, and 2-4 times thruout the day, & I'm up usually at least 1-2 times a night, mainly passing gas. Which isn't always just gas. I've had increased mucous lately too- you know, you think it's just gas but then.... a not so nice surprise! I mean, I work, I go out, I eat plenty of varying types of foods, etc. I'm not home stuck in bed, or in much pain... I prepare myself always, with extra pants, undies, wipes, ziplock bags.... It's such a big surgery to undergo, that personally I'd think one would need to be really bad off before agreeing to it! Like, having no life at all- my life is alright, I just poop my pants every now & then! wink   They make Depends for that- it seems awfully drastic to rip out the whole colon for incontinence issues. I hope I am able to give Humira a try. Stupid mouse proteins causing the antibodies.......
Posted 10/15/2009 4:47 PM (GMT 0)
The mornings were always rough for me when I was flaring too. I would have to run to the toilet 5x+ before getting out of the house. I would also wake up in the night a few times to pass gas and one time, I remember there was a little unexpected surprise. What a night.. It sounds to me like your situation could warrant surgery. It depends on the person. I am sure people have had surgery with less symptoms. I can totally understand your not wanting to do it though, it is a huge surgery with a long recovery time. After that surgery you will never be exactly the same but you also won't have to carry extra pants around when you're healed. It could be a good option but there is no rush to have surgery. Maybe Remicade will start working or maybe Humira will be the wonder drug. I hope something helps and you don't have to consider surgery. Have you ever tried increasing the Asacol to 12 or tried Colazal? How about using different enemas?
Posted 10/15/2009 6:00 PM (GMT 0)
That sucks, Eva Lou. I think as far as symptoms go, it's YOUR call as to whether or not they are bad enough to warrant surgery. If you're willing to wear a diaper instead of surgery, then no, it's not time for surgery! :)

I hope the Remicade either starts working again or the Humira does the trick! That's great your insurance co. will cover it.
Posted 10/15/2009 6:02 PM (GMT 0)
     Urgency is my biggest problem too.  I have ulcerative proctitis.  Do you also have constant pressure in your rectum?  I do, but it seems to lessen somewhat in the afternoon.  I usually go anywhere from two to seven times in the morning, most likely due to whatever I ate the day before.  I wear kotex pads because if I don't get to a potty fast...va voom...out it comes.  I even have port a pots in different rooms of the house..lol.  OY...what a disease.

     After I was discharged from the hospital last year, I went to a GI surgeon.  He said my UP was moderate and he wouldn't even think of operating unless it got to be severe because even after surgery I would be emptying the bag about ten times or more a day and surgery at my age (63) with high blood pressure...would be kinda risky.

Posted 10/15/2009 6:43 PM (GMT 0)
Eva Lou, are you using any rectal meds? These are usually really helpful with the urgency, which is a symptom of rectal inflammation.
Posted 10/15/2009 6:50 PM (GMT 0)
you know, I'm not using rectal meds- currently! I know, my bad. I've used them faithfully in the past, & they did help for some time. I have none right now, & forgot to ask for a new script. I may, am supposed to call my GI in a week or so. I hate them though! But, I hate the alternative too.
Posted 10/15/2009 7:02 PM (GMT 0)
Have you had a colonoscopy lately? Are you inflammed throughout or is it mostly the rectum? If it's the rectum, you defintely need to use rectal meds. I get worse if I don't use my rectal meds.
Posted 10/15/2009 7:07 PM (GMT 0)
Shame, shame, Eva Lou! ;)
I'm using enemas twice weekly for maintenance, and honestly, it's NOT bad at all.
Posted 10/15/2009 8:06 PM (GMT 0)
I had the same problem with the remicade, it was working great at first but then it just sort of stop working for no reason. My doctors then switched me to Humira and its the best thing that has happened to me. It takes a few months to start working full punch, but its awesome and I dont have to lose a whole day in the hospital for an infusion. Also if your period tends to set off your colitis you could talk to your doctor about going on birth control and not take the placebo pills. My period also set off my colitis and now I dont have to worry about it because I never get my period.
Posted 10/15/2009 9:19 PM (GMT 0)
that's what I want to hear, jordanko! I know, enemas aren't bad, once you get used to them. I had surgery scheduled about a year ago, & held myself a little enema dumping party.... swore I'd never use them again. Stupid, yes, but... I'm going to give Remicade one more shot, but get the ball rolling with the insurance stuff on Humira. I've got my fingers crossed!

Posted 10/16/2009 1:23 AM (GMT 0)
I have to say that if Remicade isn't working then Humira would. I had major issues with Remicade and I went onto Humira and it's my life saver. :) So, good luck with the next attempt. Don't be too scared, I know that Humira is the last chance before surgery, but it's a real good chance. I'm I'd say 97% back to normal thanks to the Humira.
Posted 10/16/2009 1:46 AM (GMT 0)
Eva Lou,

Hmm...I think you're in denial.  Your symptoms are bad enough to warrant surgery.  I know you don't want surgery, no one does but going to the bathroom 7+ times per day (your estimation) is not good.  Urgency to the point of crapping in your pants is not a good sign either.  I used to rationalize that these problems were not so bad when I had them; but in hindsight they really are bad.   I think you are worse off then you think and I am hoping that Humira works for you.  I know you don't want surgery; I didn't either.  But the problems you live with I don't have to live with anymore and there is great freedom in that.

Sue

Posted 10/16/2009 2:11 AM (GMT 0)

I feel the same way you do about surgery.  I am 69 and would have to be a matter of life or death.   Anyway, you have not really tried everything yet.  I hope Humira works for you. Have you tried prednisone.  I did not want to do that but ran out of options and doctor told me no Remicade or Humira.  Prednisone worked - that along with rectal meds.  It is a horrible medication that sometimes we need.

In the meantime, the enemas will work - try them all.  I started with Rowasa and then on to steroid enemas and they were hard to administer, etc.  So when I changed to a specialist he prescribed Cortifoam and suppositories - working together they are so much easier.  I know they are why I finally got into near remission.  ALSO, I will not recommend Imodium but ask you doctor about it or similar.  When I had that urgency and 4 or 5 BM's before lunch the doctor prescribed Imodium - worked wonders when taken like one or two hours before you have to go out. 

ElaieNY

Posted 10/16/2009 1:32 PM (GMT 0)
To clarify, I know that medically, my symptoms are bad enough to warrant surgery. Personally, they're not- yet! I am in denial, I full-on admit it. I've been hearing "It's time for surgery" for about 2 years now- I keep holding out, trying other meds, etc. The high Remicade dose was one of my last resorts, now it appears as if Humira may be yet one more "last resort". I don't know what I'm waiting for, truth be told, maybe to become seriously ill again- which is probably the worst thing I could do. sad
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