Crohn's Girl

morethanjustatummyache:

HAPPY WORLD IBD DAY!

(via visualaesthetic)

thegutsygeneration:

aaronmichaeld:

I try to stay out of the politics, but this is something very, very near and dear to our hearts. It’s about time they start treating this disease with the respect it deserves.

Force change in the Social Security Disability standards and process for those suffering from Inflammatory Bowel Disease

If you want to sign, first create an account and then press “Sign This Petition”.

https://petitions.whitehouse.gov/petition/force-change-social-security-disability-standards-and-process-those-suffering-inflammatory-bowel/TjR2Gh64

agirlwithguts:

In anger this morning I immediately picked up my phone and knew exactly who I had to text about the new ad campaign by the CCFA. If there was one friend who would be on the same wavelength as I am, I knew it would be Marisa. 

Marisa and I have been deeply affected by our lives with Crohn’s disease or ulcerative colitis. It has in every way shaped every single area of our lives. It in every way is living life with a traumatic chronic disease. This doesn’t mean that we don’t view ourselves as strong females and that we are just sitting back and feeling sorry for ourselves.  But we cannot deny that our relationships, self-esteem, family, money, careers, choices, mental battles, etc. have not been governed by IBD.  How could they not? Because of the suffering we have gone through, we WANT people to understand how serious this disease is. It’s important to us to feel validated and it’s important that REAL awareness exists.  

To me, I think these ads are a step backward. They show different people in a bathroom stall with a silly little saying about IBD. What this does is fuels the already huge rumor that IBD and IBS are the same things, or at least very similar.  It makes it seem yet again that IBD is just like a tummy ache, food poisoning  or the flu. That we simply spend more time in the bathroom than most and probably have to watch what we eat. *anger face*

Is any awareness better than no awareness?  I have seen so many comments recently that “any awareness is better than no awareness” or something similar.  I disagree.  Hear me out on this - I would rather have no awareness than awareness that leads me down a path of struggling to make people understand that this disease isn’t the same thing as IBS. It’s not the same as a tummy ache. This just feeds those rumors and makes people who don’t know or understand what Crohn’s disease or ulcerative colitis is think that all we do is spend time in the bathroom. I think this is wrong awareness and leads us backward rather than forward. And to me, the bathroom stall thing doesn’t relate to my life at all.  I don’t spend any more time in the bathroom now than a healthy person does. What I do deal with is a motility disorder. I deal with life without a large intestine. I deal with intestinal blockages, bleeding ulcers, damaging inflammation, strictures, infusions of medications, malabsorption, rapid weight loss, terrible pain, arthritis, etc. 

Why do people take cancer seriously? Because they do a good job of showing the realities. Let’s get REAL.  Why can’t we show ads with patients who have Crohn’s disease or ulcerative colitis hooked up to an IV getting an infusion? Giving themselves a shot? Holding the many pills they have to swallow in a days time? Going in to have all or portions of their bowels removed? With an NG tube down their nose and into their stomachs? Emaciated with weight loss? Puffed up on prednisone? With an ostomy bag? With a central line in? “Eating” intravenous food? What about the many other areas of the body that Crohn’s disease and ulcerative colitis affect? Show pictures of mouth ulcers or what happens to the upper GI system. The often crippling arthritis that comes along with it for so many of us. There is just so much more that needs to be said. Instead of a picture of a different character each time in a bathroom stall let’s have a different picture each time of the different realities of life with Crohn’s disease or ulcerative colitis. Then people will know, then people will take it seriously, and then people will want to donate their time and money to help support us. 

Those things would make people think twice about what these diseases actually are. That would raise some real awareness. That would make people understand that this is a serious autoimmune disease that is often debilitating.  It’s not just a bride who is sitting in the bathroom stall because she has a case of the shits. That bride is in there because she has damaging inflammation present in her bowel that is probably accompanied by bleeding ulcers.  She’s probably in excruciating pain and could be filling that toilet bowl up with blood.  She could be too tired to walk down the aisle because of months of bleeding causing her to become anemic and weak.  Perhaps her hair is falling out from malnutrition and medication so she doesn’t look her best and feels unconfident on her wedding day.  Maybe she was worried about how she would look in her dress because steroids have caused her to gain weight all year.  She could be anxious to go on her honeymoon because she fears being away from her doctors and support system while she is sick.  Maybe she has an ostomy and is embarrassed about having sex on her wedding night? THAT is the real story.  

I know that a lot of you disagree with my opinion and I get that.  I love the CCFA, I really do.  I get that for a lot of you this ad is something you feel is a step in the right direction. I can see the marketing behind it and all that jazz, but to me I just do not like it. I went to my friends who I know have suffered as much as I have with this disease and asked them their opinion on it too and they feel the same way as I do.  I’ve been talking to Marisa and Jaime all morning about this and what we wish would have been different. I wonder how many others out there who have gone through so much are angered that their disease has been trivialized to a bathroom stall. The bathroom stall doesn’t even depict all of our stories, it leaves many of us out. So in a way I get where you all come from but in so many ways I do not. 

Find out what Marisa feels about it here: http://keepingthingsinsideisbadformyhealth.wordpress.com/

End rant. 

100% agree.

morethanjustatummyache:

Here’s to hospital visits. Here’s to doctors that don’t listen. Here’s to doctors in general. Here’s to nurses. Here’s to medications. Here’s to the pain. Here’s to not sleeping. Here’s to side effects. Here’s to being in the bathroom more than not. Here’s to eating nothing. Here’s to pills. Here’s to injections. Here’s to infusions. Here’s to transfusions. Here’s to blood work. Here’s to needles. Here’s to our bed. Here’s to our family. Here’s to getting up each day and fighting again. Here’s to say, “No, I won’t be pushed around by this.”

But most importantly, here’s to us.

Here’s the diseased, young and old, tired and awake, in remission or sick. Here’s to us.

(via lifewithautoimmune)