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Are we doomed?

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Posted 10/26/2013 6:04 AM (GMT 0)
Everyone gets these thoughts on occasion. Of course the basic fact is that everyone, no matter how healthy, youthful, sexy and in "top shape" now, eventually has to succumb to sickness and death. I know it sounds like a depressing message, but when we look at sickness & death squarely in the face, it can help us to make a complete about-face and plan out exactly where we want to spend our energy right now or assuming we have a few more years to live yet.

Also consider those with a fate worse than ours (hard to imagine I know), but there are some who have lost more, and still find meaning, purpose and peace in life.. it's definitely possible. Sometimes the ones to feel compassion for are those people who have never had a wake up call, who live on autopilot for 50 years or more, than then one day realize "hey, where's it all gone?". The people here have had the "wake up" call..
Posted 10/26/2013 11:24 AM (GMT 0)
It's hard to walk in the flowers when you are constantly worried if your going to have an accident. Makes it hard to get past the front door.
Posted 10/26/2013 2:06 PM (GMT 0)
never2late I have you beat. I've been living with UC for 33 years.

I've gone through some bad times and some good times. Right now it's not so bad. Every time I start feeling sorry for myself I catch a glimpse of someone worse off than me: a homeless person sitting on the side of a building, a paraplegic struggling in a wheelchair, a children's hospital nearby. Sometimes I think God lets me catch a glimpse of something worse just when I'm feeling real down.

Because of today's medicines and our modern society and advancements we live longer and are more comfortable. In the 1800s there was no Prednisone to stop the bleeding, or Depends to stop the accidents, or Tylenol to stop the pain, or Asacol to squelch the inflammation, or operations to resection the colon, or TV or computers to stop the boredom. People basically just ran back and forth to their outhouses, stayed in bed and...well...died!

We have so many things these days to keep us comfortable, almost too many things! I'm more worried about our mental health!

John
Posted 10/26/2013 2:21 PM (GMT 0)
mental health ? sheesh, I gave up on that pursuit a long time ago JP !
Posted 10/26/2013 4:32 PM (GMT 0)
JohnPhx, great point. I like your attitude.
Posted 10/26/2013 9:13 PM (GMT 0)
I also just joined this forum. I was dx in 2001, but I know I had UC even as a child. I would say I've probably had it since 1987. I put up with symptoms for years until I could no longer ignore it.

Thankfully, mine responded well to a low dose of Prednisone and about 12 pills of Asacol a day in the beginning. I did flare again in 2012 during a time of high stress, but that also responded well to an increase from a maintenance dose of Asacol to 6 of the Asacol HD's a day. I recently switched to Apriso only because of insurance purposes.

Anyway, I think we've all had days where we feel sorry for ourselves. Not making it to the bathroom in time is quite inconvenient, to say the least, but I stay thankful because I realize there are people that have much worse health issues than me. I also have a sister with UC, so we are able to commiserate together. :)
Posted 10/26/2013 9:32 PM (GMT 0)
I have felt hopeless, doomed, frankly thought I was going to die at 26... but I am happy and I consider myself healthy now. Because of getting sick I became closer with my friends and family and decided to change careers to do something I feel more passionate about. Of course I wish I never had UC, but given that I do, and nothing can ever change that, I think things are pretty darn great. There is always hope.
Posted 10/26/2013 10:38 PM (GMT 0)
Liz, I can totally relate to that! I was also 26 when I was dx, and I thought I was going to die! My son was 1 1/2 and I remember thinking I wouldn't be there to celebrate his second birthday! But I was there and now he is getting ready to turn 14. :) I agree, there's always hope! :)
Posted 10/30/2013 3:57 PM (GMT 0)
I still feel doomed 60 % of the time. ;-(

I think if you have found a maint solution that is not risky, you probably don't feel doomed and consider yourself lucky.

If you are like the rest of us dealing with steriods, or other worse drugs that are risky then its a bad place to be!!

:-(
Posted 10/30/2013 4:03 PM (GMT 0)
To play devil's advocate: Even if we were all doomed then what difference does it really make? I mean, we still need to wake up each morning, pull our pants up, and go about our day just like everyone else. In the end, we just do what we gotta do make the best of what we got with whatever hand of cards we are dealt. Sometimes you get a good hand, othertimes we get a crappy hand but still have to use our best poker-face to persuade others otherwise. There is no need to worry about the meds as "that which doesn't kill me only postpones the inevitable right?" haha. Often one is worrying about a statistically unlikely to occur thing anyways. More harm in the actual worrying then the med, most of the time, I think.
Posted 10/30/2013 4:07 PM (GMT 0)
I know, you are right iPoop! Its just so unfair! I just hate not being in a good place with my meds!! Boo!

As soon as i get off the steroid the better! Making me crazy!
Posted 10/30/2013 4:13 PM (GMT 0)
DMC2011, how much pred are you on? I've been on pred since jan 2013. I'm holding at 12.5mgs until my last loading dose of Remi, after which the dr will check me with a scope and hopefully get me off of this god awful pred.

What's really fair and what's unfair? I think it is unfair to judge, as I am sure you, yourself take for granted many things that others would say you are darn lucky to have (could be your career, your family, or countless other things)! My father is 65, bicycles 25 miles a day, and takes zero pills on a daily basis, where as I take 8 pills a day plus an enema lol, fair no, but I am grateful the oldman's doing so well.
Posted 10/30/2013 4:26 PM (GMT 0)
One of the nicest things I've read in a long while:

"10 Difficult Realities You’ll Continually Face Until You Learn How To Accept Them"

thoughtcatalog.com/brianna-wiest/2013/10/10-difficult-realities-youll-continually-face-until-you-learn-how-to-accept-them

I don't intend to ignite a spark in the debate over "accepting" disease, because I feel like I don't have to accept disease, I don't think we should accept it. I don't accept it, and I try not to look at it like I fight for it. I no longer seek to delve into the mystery that is disease, because when I'm well, I focus on that. I don't want to bother with the negative connotation that disease holds over me anymore, I've beat it to a bush enough, trying to find out what it is that I've done, my body does, or the environment does.

In any event, I just wanted to shine some light on this blog/article, pretty empowering. :)
Posted 10/30/2013 6:07 PM (GMT 0)
Stereo i will check out the blog, thx!

I am not on pred, i am on cortenema! Thank god for that! But the steriod is making me gain weight, emotional and a slight Puffy face.

I was on pred for only 4 days before and was over the top insane! I think i am very sensitive to it.

I dont know what i am going to do for butt meds as mesa makes me flare.

I am going to try to wean off steriod this week. If i can get to two or three a week maybe not so bad.

Oh i know i am lucky relativly speaking, but i dont feel lucky!
Posted 10/30/2013 6:49 PM (GMT 0)
You used only the 4g rowasa?

there's a 2g as well as the SF that might be worth the try.

What exactly are the symptoms you're having now?

Curious what you're eating on a daily basis....

q

Posted 10/30/2013 7:47 PM (GMT 0)
Nah, I don't feel doomed. I'm a 55 year old woman whose had UC for nine years -- done the Remi etc, and I feel pretty darned good. Hubby and I hiked six miles last weekend, and although I didn't pick flowers, I did pick up some fall leaves! My hubby is 60 and looks 50 and takes meds for blood pressure and cholesteral...most people say I look younger as well. So nope, no fear....life goes on and I feel good! Hope this is another good testimony for you! :-) 
Posted 10/30/2013 7:56 PM (GMT 0)
Hi q, no symptoms in toilet when i use the steriod enema. My diet latly is in my sig!

I gonna try to get 2mg ennies! Thanks for the info.

Must add that last night i tried ONE MORE time a rowasa and i was bleed this morning and cramp as wellas burning anus. I so wish i could make them work!!!! But i think thise days gone!

Back to steroid ennie tonight then i just gonna try skipping night. Sometimes i have not been using whole bottle either.
Posted 10/30/2013 7:58 PM (GMT 0)
Lonie yes, it makes me feel better. I am 53 and life cones at you fast esp with disease! I love to hike too!
Posted 10/30/2013 7:59 PM (GMT 0)
Awesome! Feel good, live well! ;-)
Posted 10/31/2013 3:38 AM (GMT 0)
It's 2grams..not mg.
What about tying a half enema and see if it gibes you less symptoms. If jo..then jot worth trying the 2g. What about canasa?
q
Posted 10/31/2013 4:09 AM (GMT 0)
Great idea on both counts,
:-)
Posted 10/31/2013 5:13 AM (GMT 0)
^^ hmm. uh...the entire world is NOT a beautiful place..., that's the reality. If it's so beautiful, what's there to conquer??

or do you mean the bad stuff that's in the world...lol.?

It's fine to be negative about having UC...hopefully, we can find meds to work in our favour without feeling worse than with having UC.  If not, rip the thing out..

q

Posted 10/31/2013 5:20 AM (GMT 0)
Q you are so right to the point! I love that about you!

Lil you sound strong enough to conquer it all!
Posted 10/31/2013 4:43 PM (GMT 0)
visually, not psychologically...gotcha...because it's majorly f'd up.


Take a day at a time and give yourself options.

q
Posted 10/31/2013 4:50 PM (GMT 0)
Yes, kind of like when I go for a nice hike and feel so nice and relaxed being in nature and the beauty around me...and then leave to drive back home on the freeway with all the bleeps.
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