First Post

Hi Steve,

Hang in there you can do it! You have been through so much already since you were 5, that is amazing! Every day is a new day and you can make it better than the day before. I was scared of remicade too, but heck, I think I got kidney disease from sulfasalazine which is a class B drug.......but my liver is doing fine on azathioprine which is a class D drug......you just don't know.

Try to look at this as a new possible begining, Remicade could be the right drug for you. Many ppl here do very well on it. Also, in the meantime I would try to find a Humira study you could get on just in case. That is why I am going for a 2nd at MGH Chron's and Colitis, I know they had a study there and I want that as an option for me.

Please keep us posted! Try to hope for the best (I know it is hard!).

I'm learning the hard way that if you aren't comfortable with your GI then get another opinion. They shouldn't make you feel like you are stuck with them and stuck with anything they tell you. If you are nervous about the Remicade then talk to them, if they aren't willing to talk, start looking around for a new GI, maybe your primary can suggest others.

That being said I've seen MANY storeis of success with Remicade, I'm not one of them so I can't offer any input other than to say, hang in there you are amazing to have been dealing with this as long as you have already and at such a young age.

Allow me to add to my sad story for a minute here. First thank you all for replying to me. I love my GI and they are very open and talk with me through every issue. To add to the stress I am single father of a little girl named hannah, Her mother and I split in high school, she took off and I have been trying to take care of her myself ever since. I know a ton of you here have done Remicade & are having great success however my worst fear is the surgery I will do anything to not have it done and I feel like this is my last option. I am bleeding heavy & it scares me, My fear is what would i do if I had to do the surgery and I didn't make it or something you know.

More on Remicade: I was approved and just need to setup a date for the first infusion. I am really worried about it though. I hate needles and I hate tests & Dr; would anyone like to tell me how long they have been on it?

Hi Teacupsunderfire, and welcome to HealingWell. When I started Remi, it wasn't even approved by the FDA for UC; only for Crohns and Arthritis. The day I was to start my first treatment, I can remember sitting on the toilet with my head in my hands hoping and praying that the Remi would work for me. I was so sick, had no energy. The next day (and this doesn't usually happen with most) but I could really feel the difference and since that day I haven't looked back. It's been 3 1/2 years now since I've been on the infusions, but I feel great and live well.

Yes you can! I wondered the very same thing, but all they do is unplug the IV from the wall and you can walk to the bathroom with the IV pole. Very simple! Don't hesitate to ask any questions; you'll do fine and it's a pretty easy procedure.

Pack some comfortable clothes, and bring some things to keep you entertained. Definitely bring your Mac to keep us updated! Hey, I know how it is...when you gotta' go, you gotta' go, ha. Take care, and let us know how you are doing.

Thanks leaving for the ER in about a half hour. Really you guys are the best.

You mention you will probably get IV steroids in the hospital. This year I was bleeding heavy and 60mg prednisone at home wasn't working. So I was hospitalized and given IV steroids (100 mg solumedrol) which did eventually stop the bleeding. But steroids take a toll on your body, I can understand why doctors want to use 6mp, Imuran, or Remicade to avoid repeating the steroid thing over and over again. I think the steroids or the remicade or the combo will stop your bleeding which will be a big relief. Another smaller relief will be when they give you just a simple fluid IV, I bet you are dehydrated to some extent. A while on the IV perked me up long before my bleeding stopped. I had wild anxiety, tension, moodiness, depression, and kinda crazy thoughts due to the IV steroids and/or sleeping meds (ambien) in the hospital. And I was very wired from the steroids. But then when I got off the IV steroids and sleeping meds and went home I started returning to my own personality. At home even though my steroid dose was still high at first (80 mg prednisone) it wasn't nearly as intense as having it intravenously. I think it was mainly the steroids magnifying the fear and anxiety I already had. I'm not trying to scare you about the mood/anxiety stuff, but to tell you if it happens to you (it may not, everyone reacts differently) that it will subside when you get off the IV steroids and you'll start feeling more of the "normal you" gradually. I wish someone would have told me that anxiety was a possible effect of IV steroids and that it would go away as I'd come down to lower doses. I didn't know it was a possible IV steroid side effect, I was wondering if I was going a bit crazy just from stuff my own head (not realizing how much of it was chemistry). If you get more anxious on the IV steroids, keep breathing, deeply... this too shall pass!

I had surgery 7 years ago for UC. I did not want it and was all but kicking and screaming up to the time of my surgery consult. However, in retrospect it's been the best thing to happen to me. I hope that you don't have to make this decision and that Remicade will work for you but if it doesn't, surgery is a viable option. I can hike, backpack, eat what I want, and my life is on MY schedule not my disease's schedule. Since you have been ill for some time it's probably worth doing a bit of research on surgery just-in-case. There are many options and choices and if you get familiar them it might lessen the fear if it gets to that point. Again, I hope you don't have to face but knowledge is power.

Sue

teacups, glad you have a plan and are on your way. Piper_chris is right about the steriods, even 60mg had my crying at everything, though I was in the flare from hell, upset about that and my kidney dx, so that did not help @40mg I got much better w/my moods.

take care!

Welcome to the community Steve. You'll find lots of support and understanding here. I'm sorry you're going through such a hard time. Hang in there.

I just got home, They discharged me, I am on a low res diet for one week, 40MG of Steroid, I am to get a CBC weekly for white blood cell counts, I am now on two Lialda 1.2g Pills twice daily, 6-MP 50MG daily, Rowasa Enema PM, the predisone taper is 40 then 35 then 30 etc for each week.

Anyone have anything like this before? Any Luck? How about these diets of have been reading about Breaking the Vicious Cycle or something like that?

I declined the remicade for now because its my last thing to try before surgery and I responded well to the IV steroids, I am going 4 or 5 times a day but no more blood.

Thanks for the support.