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What do you most hate about having IBD?

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Posted 6/11/2008 8:23 AM (GMT 0)
The thing i hate most is not being in control as each day is differant with this DD
Posted 6/11/2008 12:22 PM (GMT 0)
having to wake up way earlier than I need to to get everything moving 10 billion times...
Posted 6/11/2008 1:19 PM (GMT 0)

quincy said...

Celey said...
:(... This thread is really depressing... *Thinks the UC thread needs it's own 'You know you have UC when...'* Or somethin' positive at least...

What I hate about it is that there's always someone who needs to find a positive about it...from another forum and not even with UC!

Get real and try not to control what people think or feel...you already asked about the positives in your own thread, not so positive to deny others thoughts and feelings in this one. 

q

Hehe.

My fears:

Not having control over my bowels and having accidents.

Using public bathrooms, I get very gassy.

Posted 6/11/2008 2:13 PM (GMT 0)
I miss being able to eat whatever and not feeling guilty or notice the consiquences. Can you tell i love food.
Posted 6/11/2008 2:29 PM (GMT 0)
The pills.  I hate taking pills.  I do it... but I hate the act of swallowing pills.  It creeps me out (I know... I'm weird.)

Posted 6/11/2008 2:38 PM (GMT 0)
Never getting well...never going back to work or school....never being able to leave the house....and the list can go on and on. :(

Posted 6/11/2008 2:39 PM (GMT 0)
Your not weird. I am sick of taking pills too. I can barely get them down my throat now.

Posted 6/11/2008 2:45 PM (GMT 0)
the urgency of having to go all the time. worrying where bathrooms are at all times.
Posted 6/11/2008 3:22 PM (GMT 0)
My sentiments exactly, nothing worse than not being able to express yourself because it might be too negative or depressing for others to read, which happens to be the whole point of a support group.

quincy said...

Celey said...
:(... This thread is really depressing... *Thinks the UC thread needs it's own 'You know you have UC when...'* Or somethin' positive at least...

What I hate about it is that there's always someone who needs to find a positive about it...from another forum and not even with UC!

Get real and try not to control what people think or feel...you already asked about the positives in your own thread, not so positive to deny others thoughts and feelings in this one. 

q

Posted 6/11/2008 3:51 PM (GMT 0)
Quincy - while I totally appreciate a "what do you hate about IBD" thread, please don't discount Celey simply because she does not have UC. The thread was titled IBD and Celey suffers greatly from Crohns. I look on this board a lot because our symptoms are so similar I find a lot of help here too.

What I hate most - the panicked feeling I get as soon as I realize something has cramped my bathroom access. Examples: traffic, a holding pattern on an airplane, long lines, an outdoor concert, etc. As soon as I realize its not available, I feel sick and like I can't breath.
Posted 6/11/2008 3:57 PM (GMT 0)
The thought of taking a trip on a plane with having IBD terrifies me (even feeling as well as I do, but still not 100%)...there, that's one of many things I hate about IBD, if it wasn't for IBD I'd probably be air travelling and enjoying going on vacations, which I rarely do because I have my "potty van" but with gas prices I will only go so fart.

:)
Posted 6/11/2008 3:57 PM (GMT 0)
Oh, I miss eating spicy foods. I especially miss salsa--I used to put in on everything!
Posted 6/11/2008 4:13 PM (GMT 0)
hmmm, I go on and on

I guess my top ones are:

1. Having to put things on hold during a flare. i.e fun things, going back to school, starting a family.
2. The flare itself
3. bm's that sound like a symphony of destruction and using public bathrooms, esp. @ work.
4. crapping my pants (only happened twice but, OMG!) and afraid of crapping my pants in public.
5. my new inability to hold a bm in
6. not being able to control the disease (only control how I deal w/it).
7. bitterness and anger, constant emotional battle to stay happy, positive and sane.

okay, I went on a bit......
Posted 6/11/2008 4:14 PM (GMT 0)
I hate all the things i've missed out on becuase of UC.

I've missed out on a semester abroad, jobs, birthdays, births, my own graduation party, fun weekends, and so many more opportunities that I was just too sick for.
Posted 6/11/2008 8:00 PM (GMT 0)

FitzyK23 said...
Quincy - while I totally appreciate a "what do you hate about IBD" thread, please don't discount Celey simply because she does not have UC. The thread was titled IBD and Celey suffers greatly from Crohns. I look on this board a lot because our symptoms are so similar I find a lot of help here too.

Oh, you must have missed the actual posting of what the UC forum needs and that this thread wasn't positive enough.  My response was about that....and we all suffer.

And in fact is a true  what I hate about IBD response....it holds true about others who think one shouldn't have a negative thought about it.

I'll add another one.....I hate IBD because I also have UC-related PSC.    Is that suffering enough for you to have a perceived negative opinion?

q

Posted 6/11/2008 8:09 PM (GMT 0)
I hate not being able to talk openly with anyone about why I'm not feeling well, because I feel like it will be too much info or they won't understand or they won't care/want to hear about it. I hate when I try to bring up surgery or how I'm not feeling and people [in real life, not here] just change the subject because they don't want to talk about it. I hate that I have to think seriously about actually removing my large intestine and possibly pooping into a bag for the rest of my life in order to feel "normal", knowing that I'll never actually ever be "non-UC normal"
Posted 6/11/2008 8:15 PM (GMT 0)
Oh, that's a good one, ediekristen--It's so depressing to know that you'll never be "non-UC" normal.

And the side effects of the meds suck.

Posted 6/11/2008 8:20 PM (GMT 0)

quincy said...

FitzyK23 said...
Quincy - while I totally appreciate a "what do you hate about IBD" thread, please don't discount Celey simply because she does not have UC. The thread was titled IBD and Celey suffers greatly from Crohns. I look on this board a lot because our symptoms are so similar I find a lot of help here too.

Oh, you must have missed the actual posting of what the UC forum needs and that this thread wasn't positive enough.  My response was about that....and we all suffer.

And in fact is a true  what I hate about IBD response....it holds true about others who think one shouldn't have a negative thought about it.

I'll add another one.....I hate IBD because I also have UC-related PSC.    Is that suffering enough for you to have a perceived negative opinion?

q

Not to mention, replying to a specific post that has to do with "negativity" (what I hate about IBD) and trying to hijack it and turn it into a "positive post" is considered breaking a forum rule.

Only makes sense when it's clear that a post is not going to be necessarily a "happy" post but rather a post for people to vent, then those who find the topic depressing should maybe avoid reading it all together rather then judge others for how they are feeling or the context of the post in the first place.

:)

Posted 6/11/2008 9:39 PM (GMT 0)

Got2Believe said...
I miss being able to eat whatever and not feeling guilty or notice the consiquences. Can you tell i love food.

one word: pepperoni!
Posted 6/11/2008 9:43 PM (GMT 0)
oh- and worrying about farting on my DH during intimacy (when I feel ok enough to be intimate).
Posted 6/11/2008 10:00 PM (GMT 0)
TraciZ - that last one just made me laugh!  I can't tell you how many times that has actually happened to us...we interrupt this program for ....!  We just laugh about it now.  But the first few times it was actually quite embarrassing!

What I hate about UC is never being able to splurge on something that I absolutely love without suffering the consequences.  Namely - all dairy food! :( 

And the incessant worry that I may have passed this miserable disease onto my kids.  Every time they complain about a stomachache or diarhea I obsessively check the toilet to see if their stools are bloody!

Posted 6/11/2008 10:01 PM (GMT 0)

TraciZ said...
oh- and worrying about farting on my DH during intimacy (when I feel ok enough to be intimate).

OH MAN, this is the worst!!! It is so terrible when you're feeling okay and you decide to be intimate (or he initiates it and you feel bad because you haven't been intimate in like a month so you don't decline) and then your stomach starts to grumble and you spend the whole time focusing on not letting any gas out which then just ruins the whole thing anyway [at least for you] :(

 

Posted 6/11/2008 10:11 PM (GMT 0)
I hate that "normal" people don't understand, especially significant others. Some seem to think it's not as bad as it seems.. I only wish I could make them see what it's REALLY like.

I hate that things like going to get a job .. the whole process of getting out, filling applications, interviewing and then having a job... are all SO STRESSFUL and hard when you're flaring.

My hubby actually said yesterday that I'm always going to have tummy upsets.. and to just not worry about it and stuff.. (I'm flaring) I wanted to smack him. I'm like.. I can't get to a dr.. usually I would be freaking treating my flare up. I told him I was in a flare up and he said that he didn't want to hear the words flare up again.. I'm like GRRR
Posted 6/11/2008 10:21 PM (GMT 0)

sweetmelody said...
I hate that "normal" people don't understand, especially significant others. Some seem to think it's not as bad as it seems.. I only wish I could make them see what it's REALLY like.

Grrr yessss I totally know what you mean. "There's no reason you can't do this, my stomach hurts sometimes but I can still function like a normal person" well that's because you ARE a normal person!!! My parents have actually accused me of overexaggerating when I was seriously DOWNPLAYING my symptoms!! Which of course made me feel worse because if they think I'm faking being sick when I'm actually trying to fake being sort of well, how sad is that?

Another thing I thought of is not being able to stand around and shop, like look through a bunch of books in a book store or all the beads in the craft store or what movie I want to rent; I have to know what I want, run in and run out, especially if they don't have a bathroom for public use. And I am a really indecisive person so it's hard to just pick something and go, I could spend hours in the book store.. Of course I'd have at least four bathroom trips in there as well.

Posted 6/11/2008 10:25 PM (GMT 0)
OMG im so right there with you on that one edie! I went to Barnes n Nobles the other day.. I made 3 freakin bathroom stops and I EVEN KNEW what
I wanted... the problem was finding the section where it was and the subject. I was looking actually for a UC book.

I hate being in stores and waiting or looking for anything because I get so stressed and worried that my stomach acts up. I too have to know exactly what I want and where to go to get it. UGH.
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