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What do you most hate about having IBD?

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Posted 6/10/2008 10:03 PM (GMT 0)
In one line please. I will start it off.

1. Worrying about my ****ing poos!

Posted 6/10/2008 10:24 PM (GMT 0)
Among many things, this is one I'm dealing with at the moment so I'll list this:

2. Not being able to wearing tampons on my period because I have to go to the bathroom so much and I end up having to change it every time, way more than I should be, so pads are just easier but not comfortable.
Posted 6/10/2008 10:32 PM (GMT 0)
What I hate most is the fear of getting very sick and not being able to teach and live a normal life with my husband....and fear of colon removal.....fear of it all.....so the FEAR is what I hate most.
Posted 6/10/2008 10:35 PM (GMT 0)
fear of colon cancer
Posted 6/10/2008 10:40 PM (GMT 0)
Being essentially uninsurable and therefore completely dependent on my current insurance provider. It's good, but...
Posted 6/10/2008 10:44 PM (GMT 0)
ditto with Judy about insurance
Posted 6/10/2008 11:07 PM (GMT 0)
wondering everytime my child has a belly ache or bout of diarrhea if this is a flare up.

Posted 6/10/2008 11:18 PM (GMT 0)
I most hate pooping in a public restroom when there are other people in there because, well, sometimes my colon can produce some funky noises. 

Kind of makes me want to hold my legs out straight so they can't identify me by my shoes!

Beth

 

Posted 6/10/2008 11:37 PM (GMT 0)
Basically everything, The quality of life becomes less. Having to fear your going to poop yourself. Not knowing if your going to be able to make plans with someone out of the fear you get so sick you can't leave the house :( Everything about it sucks.
Posted 6/10/2008 11:46 PM (GMT 0)
Not being "normal". :-(
Posted 6/10/2008 11:53 PM (GMT 0)
never really knowing how I am going to feel from day to day. never planning anything ahead of time.
Posted 6/11/2008 12:05 AM (GMT 0)
worrying all the time about everything. when i'll have to go, how many times, will there be a bathroom, will there be other people around, will i make it to the bathroom, am i losing too much blood, will i wind up in the hospital...the list goes on and on and on...
Posted 6/11/2008 12:28 AM (GMT 0)
Fear of losing prescription coverage from our insurance.
Posted 6/11/2008 12:34 AM (GMT 0)
Not having total control over my bowels as I did before I got sick...I miss only having one normal urge and bowel movement a day. :(
Posted 6/11/2008 12:40 AM (GMT 0)
Pb, you mean that you can remember having normal bms??? Lordy, it has been so long for me that I can't remember anymore! :)
Posted 6/11/2008 12:43 AM (GMT 0)
Oh yes Red, I remember because I refuse to let those memories go...I know it's been 17 yrs but till the day I die and even with having such a crappy memory, that is one part of my life I will never forget, infact I fantasize about it all the time, sad huh.

:)
Posted 6/11/2008 1:30 AM (GMT 0)
:(... This thread is really depressing... *Thinks the UC thread needs it's own 'You know you have UC when...'* Or somethin' positive at least...
Posted 6/11/2008 2:04 AM (GMT 0)
Being imprisoned by a disease.
Posted 6/11/2008 2:54 AM (GMT 0)
having to hold my baby down while he screams "i need you mommy" and people poke him and take his blood.
Posted 6/11/2008 3:00 AM (GMT 0)

Being tired all the time (even though my blood is normal) and therefore not doing anything. The uncertainty--not being able to plan out the future.

Basically what everyone else said.

Posted 6/11/2008 3:14 AM (GMT 0)

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...

Yes well having IBD is depressing and if we only talk about fun and happy things then that wouldn't be very realistic plus these kinds of threads are actually very helpful because it helps us come to our own realizations of the reality of this DD, we are able to get things off of our chest, we share with others who have empathy not just sympathy and it's better then sweeping things under the carpet and not dealing with them because they do exsit.

The UC forum is a very positive and wonderful forum full of people who can openly share the negative and even the positives about living with IBD...believe it or not, they have alot of fun and funny postings too.

Posted 6/11/2008 3:44 AM (GMT 0)

Not one line but...

1. Never being sure if bratcat is going to stay in remission.
2. Never being positive if the decisions we make (meds, surgery, etc) are the right ones.
3. Feeling guilty because it looks like the predisposition to IBD comes from my side of the family (and now bratcat has UC and her older brother probably has Crohns).

Posted 6/11/2008 4:17 AM (GMT 0)
Feeling unattractive and unmotivated all the time
Posted 6/11/2008 7:04 AM (GMT 0)
being in pain...

i could deal with the pooping no problem, its the pain that sucks
Posted 6/11/2008 7:23 AM (GMT 0)

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

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