does life seriously go on?

i am just so tired of life right now.  i am so tired of people who have "healthy lives" thinking they have a cure!  do they really think that we haven't thought of every last resort?  i'm sorry for being so negative, but i've had it and not sure how much longer i can handle these people who think they have it so bad when in reality they have a cold or even the flu!

Gela, life does go on, and sometimes that seems like a burden. Fortunately, I think much more often it feels like a gift. I get impatient when people whine about their colds and scrapes and allergies. Then I remember that I used to whine about those things too, and sometimes still do. Whatever is happening to me is a big deal. And I wouldn't wish UC on anyone, although there have been times when I've wished someone could, just for one day, feel the way I feel in the midst of a bad flare. Bad me.

It is so discouraging to have this dreaded thing and feel so awful most of the time. My husband just happens to be at a point that things are looking fairly good right now. The past two days however were most uncomfortable and really affected his mood and personality. I keep asking him to the point I know I am nagging him but I am concerned with the coming off of the prednisone even though he has these other meds making a difference in his quality of life that maybe he is regressing a bit.

We are getting a blood test tomorrow as his local Dr wants to check the cortisol(?) level before he totally stops the 2 1/2 mg of prednisone. And maybe this is all part of what I have read when you are coming off the prednisone and just bite the bullet so to speak and grin and bear it and hopefully it will get better. Hopefully his body will adjust and produce whatever it is it is supposed to do in the absence of the prednisone that he showed became a dependancy for him. Wish he never was put on it but I guess overall it was necessary. Even the Mayo clinic wasn't overly concerned that he was on it and has been and now tapering. If they were involved in his care from the get go maybe they would have done everything just like his local Dr. has. Who knows....

It is indeed very discouraging to not feel normal and plan every single thing you do before you do it to allow for whatever social thing or normal day to day things you need to accomplish. You can't just run out the door without making various preparations.

We live in an over 55 community with a variety of different ages from baby boomers to the elderly so we see and hear about alot of different illnesses and sicknesses. Some are minor in comparison to what he is going through and others are so much more serious. So sometimes it is annoying to listen to the little "ache and pain" type things as you say and then he counts his blessings that he is not in the unfortunate state that others are in.

Every once in awhile it is ok to have a "Pity Party" it is part of the coping mechanisms. I have them as the caretaker who gets the brunt of his frustration that he can't help....fortunately I am not sick. I am one of those with the little "aches and pains" who DEFINITELY keeps the complaints at a real minimum now having lived with what he is going through. Gives me a whole new appreciation for what real suffering is. My heart goes out to each and every one of you and what you are going through. It is uplifting to read every once in awhile progress someone has to report and you just know how important it is in their lives to get some of those "better days" to get a reprieve from all of this.

Take care.

I was going to post something like this, but about the part where you said "i am so tired of people who have "healthy lives" thinking they have a cure"- I come across this constantly.  People who don't even know what UC is, and they start coming after me, like "You need to eat cabbage!" or "You are too stressed!  You need this herb"  I wish they would shut up or I had the nerve to tell them to shut up!! 

Just remember one thing...These whiners, when they are hit with something, will never be able to handle it because they've never been tested. I laugh in these people's faces!! They go home after work whining about everything under the sun, being lazy. I go home and run 4miles and bike 40 and I'm just getting warmed up. Plus, hold up a very stressful job. If they can't do it "healthy" what do you think would happen if they came down with something?! Besides, I agree with somebody already said, Everybody has something. If they don't have something yet, then they will. Just of matter of time.

I agree a lot of the sentiments already expressed here. Other people just don't know, I have a friend who has IBS not Chron's or UC but IBS and when I was flaring going 25+ times a day barely able to function with D&B and horrible cramping, she who is newly single and wanting to see her old friends again, tells me how she knows what it's like and because she has IBS and can't I just meet her for a drink. I pretty much just told her that she actually has no idea what it's like, that what I have is completely different than what she has and some people are just not going to get it....I had told her how basically I was getting up to go to work at 6:30 and coming home at 6:30 and going to bed at 8 and then she's like, well I can come over for some wine and I was like, listen you are not understanding, I am SICK and need to rest and etc....

Anyhow, you need to surround yourself with those that do understand are are supportive of you. I also believe everyone get's whacked with something and for those that you can't see it, they have their issues too but yeah, sometimes I just want them to shut up and deal with their little itty bitty problem.

Well in all fairness there could be many IBSers that have an idea what we go through since their main symptoms is frequency of D or even terrible C, they don't experiance the bleeding or the extraintestinal manifestations that go along with IBD (CD or UC), but bowel frequency and discomfort many of them can relate to (granted it's not a serious a syndrom compared to a chronic illness).

:)