What do you most hate about having IBD?

You know, I honestly think it's something to do with book stores... I don't know what it is (and someone else on here agreed they had the same problem) but EVERY time I go to barnes and noble, no matter how great my stomach is feeling, I run straight for the bathroom the minute I walk in and usually go at least one or two more times before I leave.

One time recently I was in there and while I was going to the bathroom some employee came in to use the bathroom. Then I finished, washed my hands [she was washing her hands at this point too] and left. No more than two minutes later I had to go again and the same lady was in there doing her hair and make up! I acted like I was looking for someone and turned around and left, haha. It was agony waiting for her to leave before I went again though.

I am with you sweet melody, if you gotta go, go. I don't know these people and they don't know me, so who cares if she sees me go into the loo twice in 5 minutes!! What I hate most.......not knowing. Not knowing when I will have a flare, not knowing when I will get better, not knowing where the potty is, not knowing if I will make it ontime.....not knowing.

One more - feeling crazy or like its in my head when I feel fine until I am asked to ride in a car w/ my boss or go somewhere without a bathroom. I know I already said the feeling when I realize I am bathroom-less is my least favorite part but I also hate the fact that I can feel perfectly fine until I have to do something. Part of that has GOT to be psychological and I HATE that I cant control it.

Judilyn said...
I always find the words "bloody diarrhea" back nosy or critical people off quickly. They can't get away from you fast enough, they're afraid you'll tell them more.

This is too funny! I had to be careful not to laugh too loud, because I'm at work!

Those words come out of my mouth so often. I use them to describe my symptoms to people who ask what UC is. The reactions are really priceless.

 

I am worried that when I have children in the future I have a 50-50 chance of passing it on to them. I'm lucky in that I have a pretty mild case but who knows if their symptoms would be the same or worse?

I've got a couple things...
1. When I graduate college will I find a job right away when I'm bumped off my parents insurance
2. Major life events. Will I be sick for my wedding day. Will I flare when I have children.

sweetmelody said...
I've sorta given up on caring about what other people think. If I need the bathroom.. I am gonna go. I don't care if there's someone in there for an hour and I am too. Honestly, because if they say ONE word to me about the length of time or even the sounds I make I will start spouting about my UC and ask her if she's ever had a stomach disease. I feel like that explains everything.

True. It makes me more uncomfortable when people I work with notice, really. Like just now, I had to go to the bathroom for the second time in half an hour, and the bathroom in our department is in the "education room" where two of my coworkers happen to be stationed at the moment working on surgery case files, and one of them was trying to be funny and was like "Sorry, you've already used your bathroom break for the day" and I just faked a laugh and was like "Yeah I know, that energy drink is killing me, I swear they shrink my bladder in half" Now I'm trying to fight off the feeling to go again at least until I can take a break and use the bathroom downstairs. Ugh. That's the only bad thing about being the secretary, I really can't just get up and leave whenever I want because then no one will be around to answer the phones and whatnot. And it sounds like it'd be easy to just say "Hey, listen for the phones for a second, please" but you'd be surprised how whiney people get about it, even if they're just standing around doing nothing (which is the case today).

What I hate the most about having UC is the pills, having to go to the bathroom in the middle of the night, not going out as much and the fact I can't eat whatever the hell I want to.🙀
_____________________________________________________
Female, 16 years old. Diagnosed with UC in May 2017
Pills I'm taking atm:
~Salofalk 4000mg
~Budenofalk 2mg
~Alpha D3 1yg
~Ca carbonate 500mg
~Spasmex

The fear of these early mild flares worsening over time to the point of needing surgery.

The fear of having a bag.

After reading this thread, the fear of my children having it. Didn’t realize it was 50/50. True?

chickinoodle said...
After reading this thread, the fear of my children having it. Didn’t realize it was 50/50. True?

Not even close to being true. 1 in 50 would be more like it.

As for the topic question, I would find it hard to nail it down to just one thing. After 17 years and counting of Crohn's, I'm deeply tired of it. I'm tired of the medical appointments and tests, the meds, the extra-intestinal complications, the needing to go the toilet loads more often than normal people, and, perhaps above all, the daily abdominal discomfort. I'm not in mad pain compared to past episodes, but it's still debilitating and limits what I can eat.