(personal) Bah. Crohn's is a sucky disease.

[vg_ford]

TMI warning. No, no cut. It's not that long or really that gross, but some folks don't like bathroom talk. If you don't want to know, don't read further.

Yes, I know, Crohn's isn't something deadly like cancer, especially since I've a fairly mild case (I've been told I can't have a chronic illness, I don't look sick). But days like today, when I can't go to work because I can't go 20 minutes without hitting the bathroom, remind me what a horrible disease this is.

I still have all my intestines. I don't have an ostomy (a bag). On most days, I can eat pretty much anything I want, including nuts, popcorn and bread.

But I pay for it - I have to take meds every day, more pills than most. (14 prescription meds, more supplements) I have to go into Worcester once every 8 weeks for a 4-hour IV infusion. And I have days like today, when stress overwhelms me and I end up in the bathroom all the time. It sucks, because while I'm talking fine, I can't keep jumping off my phone to run to the ladies' room, so I can't work. And because I'm going so much, it chafes the skin around my ass, so I need to take a bath to soothe it.

Crohn's sucks. Trust me on this one. And no, no cure.

Comments

[nuchtchas.livejournal.com]

I hate when people say Crohn's isn't life threatening or try and down play it. Thing is, it shortens your life often, more importantly it is something you have to live with every moment, you have to think about what you eat, it attacks more then just your intestine and it effects everything. Crohn's can be life threatening, I know because my Ex was minutes away from dying when his intestine blew a hole and started seeping digestive fluid into his body.

This is something that effects so many people and it is plain ignored. It shouldn't be. There is no cure, and yes there are new treatments but unless you know this is what you have, often people go into adulthood not knowing why they always feel ill and it could kill them.

You have all my sympathy for this *hugs* I have not had it myself but living with someone who has, I understand as much as anyone without it can.

[vg-ford.livejournal.com]

Thanks. It's really hard - I spent 3 years looking for a diagnosis, and even then, the right treatment took another few years. People just don't understand - especially because I'm overweight.

They don't realize that there are days when all I can eat is white carbs, because they don't hurt my insides.

[nuchtchas.livejournal.com]

What a lot of people don't understand is that most people who have Crohn's are over weight, and actually that's a good sign in some cases. My Ex was very thin when we met, he had worked hard because he was chubby growing up, but he kept getting thinner and thinner and sicker and sicker. When he almost died the year following people would tell me he looked like he was a concentration camp victim.

Now he's back to chubby, the healthier he got the chubbier he got. He can't lose well either, this is a man with some amazing will power too. If he does lose weight, it tends to be a sign he's sick again and will end up in the hospital again.

[vg-ford.livejournal.com]

Exactly! And good luck to your ex!

I'm more than a little chubby, but I'm working on it. I'll never be a size 2. That's okay. I'd like to be a size healthy.

[nuchtchas.livejournal.com]

Healthy is the most important thing, trust me.

I know it's cliché but if you don't have your health, you don't have anything. So before anyone can think of anything else, they need to think of health.

Also, I hate size twos, not simply because I'm a chubby girl, but because they lack what a woman needs, curves. I like a healthy looking girl, and if you can find health at a larger size then go with that. I lost 80 lbs once and went too low for me to be healthy. I was 167lbs I think, and I passed out behind the wheel. I learned that my healthy weight is 180, and while a lot of people think that's still fat, I was happiest then. That's my goal now. Forget fitting into a size 8, forget being "normal" I looked good at 180 and I felt healthy and right. That's my goal now, feeling healthy and right.

[vg-ford.livejournal.com]

Exactly. I like my curves, and I'm aiming for about 180 as well. That's what I look good at.

Good luck to both of us!

[nuchtchas.livejournal.com]

you and me, go us!

[nuchtchas.livejournal.com]

you know, you're making me want to write a blog post or record a podcast bonus episode or something about all of this...

[shanrina.livejournal.com]

***HUGS***

[vg-ford.livejournal.com]

Thanks! :) *hugs*

[queenoftheskies.livejournal.com]

::HUGS::

I sympathize with the chronic illness part and understand that people don't understand how a person with one doesn't look sick. People don't understand things unless they go through them.

I'm sorry you have to suffer. Sending you lots of healing thoughts for at least feeling better soon.

[vg-ford.livejournal.com]

Thanks. :) I hope you're feeling better soon too, and that things slow down for you soon.

[freya46.livejournal.com]

(((((HUGS))) A suggestion for the chaffing .... bag balm. I shit thee not. *grin* No seriously, it wonderful.

[vg-ford.livejournal.com]

Have it and use it. :D I learned that one early on, when they were still trying to figure out what the heck was going on.

[aislinn-sca.livejournal.com]

You have my sympathies. Before I figured out I had a corn intolerance (reaction was similar to Celiac's with wheat), I often had to miss school or work due to being ill. No fun. Sometimes I still get sick and can't figure out why, but at least now, while still inconvenient, it's less intrusive in my day to day life, and thankfully it isn't life threatening like my nut allergy. I hope that someday they're able to find ways of making your Chron's more manageable.