What annoys you most about having IBD?

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DannyB

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Hello my friends,

Again, I am wanting to ask you all a question to see what your thoughts are and share your views and opinions on life with IBD. We all share this 'problem' so we all have a great thing in common and should be able to talk with one another freely and openly.

The question I wanted to ask you all is what annoys you most about having IBD?

There are many parts of having crohns that irritate me on a daily basis, you can say that you shouldn't let it ruin your life and make the most of what you have but that is all good however, I would have to say having crohns from such a young age it has ruined my life because it affected my education from the outset basically, apart from that though just the energy levels and weight issues annoy me a fair but aswell. What about you guys?

Thanks
 
Having my bones stick out of my elbows and ribs makes me feel like I cannot take off my shirt to swim because it makes me feel really self conscious.

But non appearance wise it makes me feel like I havve lost part of growing up since I had to grow up the first day I found out I had this damned disease. Also I get a sensation that I have not fully finished crapping.

Jeff
 
Weight issues like finding it hard to gain it properly or when i do sustain that weight.((never lasts too long))Not sure how much was down to it affecting my education but i think i had it as a kid and it didnt help.I was a good runner though cause i was slim and won many a medal for it.

Not being able to go places and not think about my health concerns when im there.I love traveling and i need prescribed drugs and stoma kit etc.Taking care of my fistula and baggie it irritates me at times.

Not having enough energy most of the time.All the side effects from the drugs ive took.Headaches lately and fevers.I look foward and try to have a good day everyday but its tough at times.

Loved that ive met so many sweet caring cool people from IBD though.
 
I find the drugs a real pain, some of them sucked the life right out of me, and have caused other long term health issues. Im shocked that some of them make you feel as bad as they do, and have such awful side effects and long term issues.. its hard to believe we take these things on purpose, and they are meant to be a benefit. Im a lot more understanding now that Ive hit a sort of remission, but for a while, I really wasnt sure any of it was worth the pain, or life I was missing.
 
My main concern is not being able to go places, especially with my young kids, for fear that I will have an "accident", which has become common place with me. I also hate that I just don't feel good all of the time. The fatigue takes alot out of me, as well as the joint pain. I don't think there is anything "good" about this disease...except that I now know where EVERY bathroom is in a 2 hour radius of my house, and I know which toiletpaper is softest!!!

Donna
 
I think the lack of energy and feeling of being dead, is pretty annoying. I can feel perfectly fine, then my stomach will act up and I may as well be a zombie of sorts. No energy, at all.
And having to wonder when I will need a bathroom all the damn time is really annoying...
 
What peeves me the most are the things that effect my son. Not being able to bike ride or take him some places (like the movies) by myself because of having to drag him to the restroom with me, not being able to just turn left and see where the road leads on an afternoon with him, not being able to run around in the yard without taking off to the restroom three minutes later or being grouchy with him because I feel bad.

FOr me personally I just go on about my day and do my best to smile through but I really really hate when I feel like it interferes in his life.
 
Not being able to eat whatever i want, and not being able to really hit the gym as hard as i am used to, due to the fact i cant eat whatever i want
 
kc0eks said:
I think the lack of energy and feeling of being dead, is pretty annoying. I can feel perfectly fine, then my stomach will act up and I may as well be a zombie of sorts. No energy, at all.
And having to wonder when I will need a bathroom all the damn time is really annoying...
Click to expand...

LOL I completely agree with you on the lack of energy and the feeling of being dead part
 
not being able to just jump up and do things other "healthy" people can do.. like move accross the world. lol
 
for me its tring to get my friends to understand and to tell them im not up to something without making it look like im after attention
 
Looking perfectly healthy when I'm feeling like dropping to the floor - and I hate attention so what comments I pass are done so nonchalantly and probably sound sarcastic in contrast to my calm voice.
 
Not being able to do and go the same places as everyone else...
You can bet if there is no toilet...there will be an explosion..of sorts...lol
 
Lack of energy is getting to me more and more at the moment. We went away at the weekend and I felt like an old lady as I had to keep sitting down. By Saturday night I was desperate to get home into my own bed. I'm also too tired to do anything when I get home from work, even on a nice evening I'm too tired to do anything.
 
The thing that annoys me more than anything is people asking what Crohn's is...then when I tell them you can almost see the repulsion on their face. Why is it so darn taboo to talk about bowels??????

If you don't want to know....don't ask!!!!!!!
 
My main concern is when Im in public and feel the need to go to the bathroom, hate when people are in there cause they make rude comments. Or when you are at a friends house and need to use the restroom, that is also annoying...
 
It's not taboo Sonya in my opinion, these people are just ignorant and don't want to take the time to learn about our Disease, just like many other Diseases. Fear of the unknown, as I say.

What annoyed me most growing up with this Disease, was lack of sleep due to constant bathroom meetings. I hated to get a few minutes sleep, now I cherish every snoozing hour.
 
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flatulance - and lots of it. Comes and goes, but never disappears. Very rarely painful, always uncomfortable, usually embarrassing. Although now that I'm on cipro, it's almost always non-scented. If anyone has any remedies, I'd love to hear them. Tried charcoal, gasx, tums, beano...the list goes on...
 
I just hate it when I am having a great day and it only seems to get better then BAM.... I am hunched over with cramps. Goodtimes.
 
Besides the pain and not being able to eat what I want, I think it would have to be having no one know what it is. You know when you tell people "I have Crohn's," they look at you with this blank look on their faces so you have to explain it. And when you explain it they still don't understand.
 
The looking fine but feeling dead thing is most annoying.

But it is nice to know we all feel very similar in what bothers us the most. Guess we can all suffer together :)
 
what annoys me the most hmm...well i could go on and on in here about things like the tons of meds a day I have to take and remember to take if I'm busy doing other things, the side effects of the meds like prednisone:thumbdown: , the feeling dead and having no energy and tired all the time, the pain it causes physically if I'm out somewhere or doing things with people and the pain becomes overwelming, some days not eatting much just because I'd like to avoid the pain, the runs to the bathroom when out somewhere with my friends and family, all the doctors visits, scopes, bloodwork, anxiety of starting new meds *coughmethotrexatecough*, other probs that come with CD..sore joints etc, having to work around the CD in order to continue on with my daily business or doing things at the drop of a hat cause its been a bad day, fighting to not allow this to control my life.
 
definately medicines. all the side affects and such. definately the lack of energy like yall said. sometiems i cant even drag myself out of bed. and also when you are very sick and look fine. i have a problem with that because even at ym church they took me off of the prayer chain without even asking me how i was doing because i looked better. grrrr talk about annoying.
 
What bugs me the most....there are so many things where do I start! For me it is being dependant upon my family and friends. I hate relying on people to help me and there are so many times where I need help now. I am learning to ask for help but I still hate being so "needy".

Marcia
 
Definitly the physical side that bothers me, i can deal with the pain since i have a high pain tolerance and generally can block it out all together, but the huge physical losses in size (35lbs of basically muscle in a matter of 2-3 months) and the lack of energy and easy exhaustion drive me insane. All my life i have been extremely athletic and now some days i cant do more then someone who has never excercised in their life. And of course , when flaring the constant D is a huge annoyance, i keep wanting to do all these things, but then i think to myself of how i cant because there is no way i could do certain things while having to visit the can 10-15 times a day....
 
aside from loosing jobs & being uninsured the thing that most annoys me are the words "I'm sick". I hate having to say that. "I was doing this or that but I got sick".....I think about the word "faith"...not religiously...I used to have faith in myself, now that is running out. Having to rely too much on other people and not being able, or having the faith that I am able, to do stuff for myself.
 
What annoys me the most at the minute is the fatigue. I've had to cancel a few things lately due to not feeling fit enough.

The thing that has annoyed me the most with IBD overall is how it affected my teenage years and the friendships I had at the time.

Calum
 

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