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Ulcerative Colitis
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Posted 7/28/2010 10:29 PM (GMT 0)
Do any of you ever have symptoms and think.. God maybe if I do this it'll go away and I'll be fine. Or maybe I can stay in remission if I do this...etcetc. OOOr...just give it one more day and see what happens?

I think I keep hoping so hard that it's not happening, that I'm not going into a flare...and by doing so... I don't get help in time and it gets out of hand. I know that's stupid...believe me I do. I just so DON'T want another flare that I keep hoping it'll just stop so I won't have to deal with it.

I'm on Remicade..and my belief is if it stops working there really isn't many options besides surgery. I refuse prednisone.. I won't do it. So because I'm having symptoms again... does that mean that I will have to do surgery??????????

I'm just so upset. I'm sorry this sounds like more of a blog.
Posted 7/28/2010 10:59 PM (GMT 0)
Yes, I've been doing that for the past 18 years and each time I slap my forehead. I've gotten more proactive in my care but I let symptoms slide for a while thinking, eh maybe it's IBS or maybe it's hemmies. But I should know better after having it for so long. I guess we can wish and hope for it to go away, but it won't. If you are having such a rough time with your Uc then maybe it is time to start considering surgery. It's not the end all and many people have surgery with great success.
Posted 7/28/2010 11:02 PM (GMT 0)
I'm just not ready yet. I want to have a baby first. I guess it's time to call and hopefully enemas will do the trick because I can't and wont do prednisone... and I want a baby :(
Posted 7/29/2010 12:32 AM (GMT 0)
Well, I understand about refusing prednisone, but of course everybody has their own reasons for doing so.
If my current situation turns into a flare up, I just want to be on Remicade, ASAP! I've already been on Prednisone, it ruined so many things of my social and personal life style, it was horrible. I went from a popular, very good looking dude, a star athlete as well, to exactly the opposite. Now that I am off it, I'd like to enjoy all of that again, although it is a little too late to become an athlete again.

I know what your feeling, and have done it before. I've always said, I won't eat this and this and hopefully it'll go away. Never does, next thing you know I'm loosing tons of blood and going twenty times a day.

Guess you gotta catch it fast, and hope it doesn't escalate.
Posted 7/29/2010 12:42 AM (GMT 0)
You will have to weigh all the options and what you are willing to go through or do to heal or ?  I personally took prednisone and would do it again before surgery BUT then I might consider surgery (I am 70) to just get on with life.  It is so personal.  Just don't deny what is going on and try what you are willing to before surgery.

ElaineNY

Posted 7/29/2010 12:55 AM (GMT 0)
I always do that too. I never want to admit that I am getting worse. I think it's important for us to know when things are starting to act up and to try to nip it in the bud as quickly as possible. I don't think it's always possible to nip it with enemas or 5asa drugs though. My last flare, I caught pretty early and nothing short of prednisone has helped stop it. I am still unstable and I have relapsed trying to get off prednisone 2x. I hope you have luck with enemas. I am dying to stop prednisone, my dose is finally low, and once again, I am hopeful I will get to 0. I am always hopeful but it never seems to work out. I think normally I would do a course of prednisone before having surgery but for me, I've been on it now for a long time and I am really seeing negative side-effects, I want to be med free. I would prefer surgery over taking prednisone indefinitely. If it's a quick course and you go into remission, great, but it doesn't always work that easily :(
Posted 7/29/2010 6:22 AM (GMT 0)
Thanks guys. I was on prednisone for two periods of 6 months. Each time I was on 40 most of that length of time. I was miserable and I gained 40 pounds both times. I just can't go through it again. I wont. Besides it always gets me into remission while on it, but about a week or two after getting off it I flare again.

I just got tested for Remicade levels half way after infusions to see if they're at the right levels they need to be after 4 weeks. I am hoping that maybe I'll be able to up my dosage or shorten the time between infusions.

In the mean time.. I don't think enemas could hurt.. I'd even do steroid enemas.. just no prednisone.

I think I'm ready for surgery EXCEPT for the fact that I want to have a child before hand. So I want to try to get into remission. Of course... I may have no choice if the Remicade stops working completely.
Posted 7/29/2010 1:13 PM (GMT 0)
Your health is of primary importance. You can have surgery and then have a baby. Many women have done this. You can meet them and ask questions on the women's discussion board at www.j-pouch.org The women that make up that discussion have both permanent ostomies and jpouches.

Sue
Posted 7/29/2010 4:45 PM (GMT 0)
Prednisone ruined me. I was also unable to taper off of it until I started Remicade. Remicade sorta helped but by the time I did my third infusion it was no longer working.

I decided to have the surgery, and, well, I'm all better now. I'm able to do anything when I want and whenever I want. I can eat pretty much everything now. Before with UC, eating Mexican food was like eating a bowl of razors. Now, don't even faze me. I have about 3 weeks until they check the j-pouch and soon after I should have the takedown.
Personally I can't wait until takedown. I mean, the bag isn't horrible or anything, far from it, but there is a reason to get the j-pouch.
Posted 7/29/2010 7:10 PM (GMT 0)
Are the enemas something you're just trying now?

q
Posted 7/29/2010 7:52 PM (GMT 0)
sweetmelody-i mean this honestly, i'm not trying to say it to make you feel bad or to push surgery or anything like that. i was pregnant with UC, and the meds iwas on were dangerous for the baby, it hurt my heart the whole time thinking i might be hurting my baby with those meds. But i knew i had to be on them. And then i was sick in a pretty bad flare for almost the first two years of his life, i missed alot of stuff and so did he with me being in the bathroom. When he was almost 2 i had surgery, but he had to stay with my grandma for the 6 weeks i was recovering, that hurt my heart also, that my baby was not with me. He was only a few minutes away but its not the same.
And babies are hard to take care of, they scream, they want things, they are annoying, they don't sleep, they do what they want when they want! And it was so hard taking care of him with UC.
I wish so much that i had had the surgery first, so that i would have been able to take care of him all along. Having UC and a newborn is really really hard. And had surgery ever been something mentioned to me, i would have done it first.
Posted 7/29/2010 8:27 PM (GMT 0)
That's good food for thought.

I was in denial and probably should have had surgery when I was young. I didn't think through that I would still be struggling with this 25 years later, or 30 years or 50 years. I hope this message board helps people think through their future and make good decisions.

I'm so grateful Remicade is working for me. The prednisone was awful, but I was grateful for it, too.
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