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Great article...I think we can all relate!!

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Ulcerative Colitis
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Posted 4/9/2015 8:36 PM (GMT 0)
 

So glad to see this article which may add some attention to this bummer illness. Wishing you all a happy day.

https://www.yahoo.com/beauty/this-is-my-body-today-what-ive-lost-and-what-im-115940443688.html

 

Posted 4/9/2015 9:09 PM (GMT 0)
I was just reading this and going to post it!
It is nice to see stories like this in the news, it helps make me feel a bit less like the odd man out.
Posted 4/9/2015 9:54 PM (GMT 0)
When she wrote about getting compliments because of weight loss when she was in such bad shape UC-wise I remembered getting the same. That's what's so hard about UC, on the outside we can look so normal (or even great) and no one knows how bad it can be except other IBD'ers. But I've had other IBD'ers be rude too so I rarely tell anyone IRL unless they have UC and I can help.

I weigh 20 pounds more now and don't care about compliments because I am in remission.
Posted 4/9/2015 11:25 PM (GMT 0)
She seemed to suffer as much or more from the side effects of prednisone than from the UC itself.
Posted 4/10/2015 1:03 AM (GMT 0)
That was a great article. I've been through a lot of similar stuff except I never had an activity that I associated with my character. It also made me feel sad because I had no one when I was in the hospital - well one person, my boyfriend. That's nice that she had such a large crowd of people who care.

I guess I should be thankful i work in a field without physical demands, I can't imagine what it would be like to have to try to teach a fitness class with this illness. It's so unpredictable.

People always tell me i look great when I lose weight from UC. I laugh, sadly, I'd rather be down 10 pounds so I agree with them in that respect, but unfortunately, i am too sick at that point to enjoy being skinny.
Posted 4/10/2015 1:17 AM (GMT 0)
wonderfully written. Hit a lot of nerves with me, kept having to pause from reading it so I could wipe away the tears.
Posted 4/10/2015 12:44 PM (GMT 0)
imagardener2: you are so right when you say we look normal. The person that does my FMLA at my job said to me: you always look really good. I said: this disease is horrible, it's depressing and you can't tell by just looking at someone. You might look ok on the outside, but inside is a different story.
Posted 4/10/2015 12:45 PM (GMT 0)
I think that will resonate with most of us. Having a serious chronic disease becomes a process of letting go and giving things up for many of us. The trick is in filling those holes that are left with something besides anger and fear.

Thanks for posting this, Lonie.
Posted 4/10/2015 2:34 PM (GMT 0)
Good story thanks for sharing. I also kept getting compliments because I was (too) thin. Still am, unfortunately. I am so sorry she had so many complications...the story is also a good reminder never to go off your maintenance meds! Finally, from a Zen perspective, it's a great lesson for us.... the body is not the being...and sometimes, it is only when the body fails us that we realize how much more we are. blessings.
Posted 4/10/2015 5:34 PM (GMT 0)
Yes, so much of the article was something I could relate to. I too am about 10 pounds overweight right now...but I'll take it because I'm in remission. And after being so very sick; I absolutely take extra pounds and health over being sick.
Posted 4/10/2015 6:33 PM (GMT 0)
Does she still have her colon? I've read it a couple of times and she mentions surgeries but I'm assuming that she still has her colon so stuff like this could happen again to her, if it was me and I went through all of that I'd seriously consider getting rid of the colon....maybe she was too sick at the time.

No one deserves this. She does sound really strong.
Posted 4/10/2015 6:59 PM (GMT 0)
She obviously sounds tough, but I think this is one of those cases where the onus is on the doctor to not use medications so excessively. I feel bad for her because it sounds like many of her issues could have been prevented with competent medical care. 60 mg of prednisone along with a cocktail of antibiotics is just asking for some medical disaster to happen. The body can go through hell, but fluoroquinolone antibiotics mixed with corticosteroids will systematically destroy tendons, ligaments and joints over time. It's hard not to get mad at doctors for destroying the lives of people this way.
Posted 4/10/2015 7:13 PM (GMT 0)
It was depressing, its her story but ?
Posted 4/10/2015 7:15 PM (GMT 0)
Everyone of us has the same story, the same losses. I read them every single day here. Makes me even sadder! I dont know why.
Posted 4/10/2015 11:05 PM (GMT 0)
I think I would rather be ill with people who loved me than healthy and alone. In fact I don't think, I know. In fact I would rather be dying and part of something (family, community, etc.) than not dying and alone.

Post Edited (NiceCupOfTea) : 4/10/2015 5:09:49 PM (GMT-6)

Posted 4/10/2015 11:42 PM (GMT 0)
Like i said, I went through all that and I had no one. I would imagine it's rare to have all those loved ones run to your side when you're an adult. She's in her late 20s, I am older, but even when I was in my 20s i was alone. I never had many people. I'm a loner. Granted I didn't tell anyone I was in the hospital because my family is so dysfunctional the thought of them showing up is worse than any other threat possible.
Posted 4/11/2015 1:21 AM (GMT 0)
NSSG I am alone too except for my daughter until I retire and move home anyway. Your not alone, we got this site!
Posted 4/11/2015 1:40 AM (GMT 0)
@nssg - I don't mean this in a bad way, but I'm glad to find somebody else whose dysfunctional family doesn't give one, let alone two, hoots. I'm a loner too, although it's hard to tell whether it's by choice or whether it's because I have all the social nous of a bored brick wall.

@DMC2011 - Well, at least you have a daughter, I guess...

I'm off to bed now. *world's smallest violin plays* :-/
Posted 4/11/2015 4:36 AM (GMT 0)
Being alone and having a child are very different :( If i had a child I wouldn't feel so alone but I wouldn't have a child to not feel alone.

ncot, i'd be curious to know if your family is as dysfunctional as mine. I really can't imagine anyone worse off. I am sure worse exist. I mean I have seen some stuff on TV that makes me family look like small potatoes but mine is weird because they pull off half-way normal in pubic, but in private they are awful. Really pathetic, sad people. Embarrassed to come from them. (and I am so sick that typing this made me laugh so hard I can't even explain)
Posted 4/12/2015 1:52 PM (GMT 0)

notsosicklygirl said...
Being alone and having a child are very different :( If i had a child I wouldn't feel so alone but I wouldn't have a child to not feel alone.

Well I am 'alone' and raising a child and it has its complications. Work has seen me go to many Dr. appointments in 2015 for my arm surgery, UC flare, etc while the 14 year old is typical with braces and acne and glasses/contacts and has many of her own appointments.

With the other parent not participating I am out of the office a lot. Now she just hit her goal of being on a competitive cheer team. She has worked so hard to get all her backflips and stuff nailed down and is fit and trim.

BUT I now have to leave work early 3 days per week to get her to class and they wont allow any misses or lates otherwise she is off the team and we owe them 1k. This is going to put a big strain on me if she continues to be in the early 4:30 PM class instead of the 7:00 PM class. Soon this will get many times worse since we sold our home and will be living an hour away while the new one is built.

I could sure use some help with all this - feels pretty alone to me. Cheer moms seem nice and hopefully helpful with ride shares.
Posted 4/13/2015 8:44 PM (GMT 0)
This article is very relatable. If I can think of one positive thing that's come out of my having UC it is that it's made me a more compassionate person. I live in NYC and am always impatient when I'm on the go, particularly if someone pushes past me in a doorway or on public transportation. I growl at them like the best grumpy New Yorker and fantasize about poking them in the snout with my umbrella. But since I got UC and have been guilty of walloping past people myself in my desperate dash for a loo I think twice before I give someone the stink-eye. I think "goodness knows, maybe they're about to poo their pants and that's why they're running." One of the lowest points of my recent life was standing on an F train during morning rush hour with my 9 year old, whom I was taking to school, whilst calmly and quietly unleashing all manner of hell into my adult diaper. I looked around at all the faces on the train, people reading and texting and nodding off, and I thought, "I bet none of these people would look at me and think 'there's a commuting, working mom, crapting in her pants on the way to work."

It makes you wonder what sort of things people are covering up and/or struggling with at any given time. It makes you think of that quote, "Be kind. Everyone you meet is fighting a hard battle."
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