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"May 19th is World IBD Day.
IBD stands for inflammatory bowel disease, and is about as fun as it sounds. Specifically, it includes the Crohn's disease and ulcerative colitis. Two - permanent - conditions for which there is no known medical cure that works for certain, no proper known cause, and very little support for the people suffering from it, as it's "rude" or even "taboo" to suffer from something, that means you might have to spend a lot of time on (or near) a toilet. Imagine having to explain to your class mates, that you have no energy, because you're loosing both blood and pretty much everything you eat every day, with no time to really get that energy back. Oh, and you need to stay within one minutes walk of an unoccupied toilet to feel comfortable. That's what it's like to have an IBD when the disease is bad. And for those that are really unlucky, this is every day, every week and every month of the year.
IBD usually hits young people between age 15 and 35, but can also hit children or older people. 1 in 200 people in the US are estimated to suffer from it. If you all do the math, it means that there statistically are Aywas users suffering from this as well. So wear the little hair clip for support the people that might be too shy - or even embarrassed - to explain about their unique daily challenges."
This item will stock in Trash for Treasure until 11:59pm May 26th.
Posted by Eve
(#2775) on Mon May 18, 2015 11:52pm
- shinycakes
(#63745)
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Posted on: Tue May 19, 2015 12:01am
Since my mother has Crohn's Disease, it's really great to hear something positive and educational....
i'm kinda tired of hearing ibd as a joke, tbh. it's rude and inconsiderate of others.
- Mostly gone
(#58780)
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Posted on: Tue May 19, 2015 12:08am
oh wow that sounds horrid
- Bear - Hiatus
(#11703)
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Posted on: Tue May 19, 2015 12:09am
Huh. I didn't know there was an awareness day for this.
I have Crohn's disease. I was diagnosed at 14 (ten years, now) and it was one of the primary reasons that led to me dropping out of school.
For a while, I was ending up hospitalized at least one time a year for it. Couldn't find a treatment that worked, had a bad doctor, then no health insurance. I ended up with sepsis one of those times and I really thought I was going to die, but I was OK.
I'm on Remicade infusions, now, every seven weeks, for the last four or five years, and they manage it pretty well, though the side effects aren't always fun, and I get kind of paranoid of getting sick, since it's a pretty crazy immunosuppressant. Especially after a scare I had a couple years ago where I ended up hospitalized in isolation where they wanted to be sure I didn't have TB -- since I'm at a high risk for that on Remicade. Being confined to a room the size of someone's bathroom for a week does crazy things to a person.
It's definitely an awkward subject, and I remember being nearly reduced to tears about it many times especially when first diagnosed. It's not something a young teen wants to have to deal with or potentially have to talk to someone about. And teachers are never understanding. Like, half of the teachers in school don't want to let the girls excuse to the bathroom for female things, trying to explain a medical condition worked about as well as that.
Explaining my infusions gets awkward, too, because people act like it's some massive deal when it's just an everyday thing for me I just plan around. I go sit in a chair for about three hours and usually fall asleep most of the time because I get Benadryl, too. I'm usually out of commission most of the day, but it's fine.
The only weird thing is my medical statements list it as chemotherapy. N...ope. Not quite. Also if I didn't have medicare/medicaid, it's, like, $18,000 - $20,000 per person a year. Thank you government for allowing me to function. The pharmaceutical industry is absolutely ridiculous.
- Issa
(#804)
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Posted on: Tue May 19, 2015 12:13am
It's hard to have an illness that affects something like your bowel movements. It's not fun when you're in pain but can't really tell people what's wrong. I've gotten dirty looks after leaving public toilet stalls before for taking so long, and it's terribly embarrassing.
Fortunately I've worked with most of my coworkers long enough that I can just tell them what's up and why I'm in such a grumpy mood (I pretty much refuse to use public bathrooms now).
Thanks Aywas, for this news post/item.
- Kanein
(#49712)
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Posted on: Tue May 19, 2015 12:14am
I have always heard a bunch of jokes around myself who is a known Crohn's Disease sufferer since it had to be Disclosed to every teacher that i may require more then the 3 trips a day to the rest room.. And the teachers not understanding the privacy of being told in private.. Announced it to their entire class By asking me If i needed to go to the rest room Due to my their words Uncontrollable crohns Before a 2 hour test. Talk about true embarrassment
Until i moved 6 months later I was teased and ever joke i heard was about that.. The teacher got a stern warning to keep things private from now on..
As adult now 27 I do not let jokes or rude comments bother me any more.. But i must say it was hard to make it threw schools.
I want to thank aywas & I grabbed one of these soon as i saw ^_^ - hugs aywas- you guys are awesome
- HIATUS [See Profile]
(#8523)
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Posted on: Tue May 19, 2015 12:20am
I have inflammatory bowel and wow thank you ;; this means a lot, I never expected to see a newspost about something like this.... but maybe I should have expected it!! Aywas is actually the reason that despite this disease, I can continue working, as pretty much all foods are trigger foods for me and I can't work a retail job because the pain makes me feel like I need to use the restroom constantly and I'd always get fired for 'hiding in the bathroom to avoid work'.
- Kuro (2Byte)
(#7746)
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Posted on: Tue May 19, 2015 12:31am
This means a lot ;w; I wasn't aware there was a day for it, thank you ~ <3
- Gwennafran
(#22320)
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Posted on: Tue May 19, 2015 12:40am
Oh wow. I never thought this would get such a large response so fast.
I'm the one making the item, and as the news post suggest, I have been affected by IBD. I was diagnosed with ulcerative colitis in 2002, and it got so bad, I ended up having surgery removing my entire colon in 2004. At age 23. I guess I'm lucky to suffer from the variation that only targets the colon, meaning I never have to worry about it spreading to my remaining bowels. ;)
For the last 11 years I've taken care not to dehydrate, and to get a little more salt than average. But I've been able to live a pretty normal life without my colon. Much more normal than then I was sick. That... Really isn't something I'd wish on anyone.
I'm so sorry for those of you that was targeted in your actual teenage years, and experienced bullying for it. That can't have been helpful at all. :(
- Lunasun
(#13000)
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Posted on: Tue May 19, 2015 12:47am
Thanks for sharing this, I'm glad to see messages like this on Aywas.
Personally, while I don't have Crohn's or ulcerative colitis, I do suffer from a colon condition. It doesn't have an official name, nor is it googleable as it is very rare. In English, I have a slow colon, which means that it mechanically doesn't move stuff through as it should. It's not IBS though slightly similar. According to my test done at the Mayo Clinic, my colon is 50% slower than the average person's.
As such, my colon is very...irregular. On bad days, I can't be far from the toilet without risking an accident. It's really hard to explain it to others but it's a bit like having the stomach flu all the time in terms of nausea along with occasional colon cramping (a bit like period cramping except in the colon) and an extremely limited diet. If I eat the wrong thing, I'll pay for 4-5 days in pain and nausea.
The only reason I can get through it is because of my parents. They take care of me when I cannot and my dad understands what it feels like to suffer at all times with his chronic headaches. It's hard but I'm still happy and want to keep living.
Posted on: Mon May 18, 2015 11:58pm
Never heard of this. Ty Aywas for sharing about the info. Definitely awful for the patients. :(