Is Any Awareness Better Than No Awareness? - Uncover Ostomy
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Is Any Awareness Better Than No Awareness?

This morning, I came across a blog post from Inflamed and Untamed on the new awareness campaign launched by the CCFA.

In short, the blog post expressed unhappiness in the imagery used by the CCFA to spread awareness about the issues affecting those with Crohn’s and Ulcerative Colitis. These images were of different types of people, including children, a bride, and even Santa Claus, behind a bathroom stall with a “witty” phrase about having to use the bathroom constantly.

I took a look at this blog post, and then of the images used by the CCFA, sat for a second, and then thought:

Wow, I am, for the first time ever, embarrassed to have Crohn’s disease.

The images, [which I have chosen not to share and you can see in the links above], basically frame C & UC patients as embarrassing bathroom jockeys.

Ok – yes – everyone who has C & UC, and even those with IBS, understand know that having these diseases require constantly needing to know where the nearest bathroom is, just in case. However, what the CCFA seemed to have forgotten is that both disease comes with a plethora of other issues that extend far beyond spending copious amounts of time in the bathroom.

Take me, for instance. Thanks to my ostomy, I am in remission, no longer have stomach pain, and really don’t give a (excuse the pun) shit where bathrooms are anymore. I barely need to go during the day.

Yet, I still have Crohn’s. In fact, I’m still dealing with many side effects of the disease.

As some of you who follow me on Facebook, Twitter, or Instagram may have seen, I was actually in the emergency room on Sunday for an issue that, while not stomach related, was still related to having the disease, which has left me with a sickeningly (haha) low immune system that, this time, resulted in a huge infection.

Jess at Mt. Sinai Emergency Room

Thankfully, this one hospital trip only left me with some antibiotics, however, this is just one of the various issues I still deal with thanks to the disease.

What do I still deal with 10 years later? Skin wounds resulting from Crohn’s surfacing on my body, being anaemic and sometimes unable to function due to extreme lethargy , I am still unable to eat certain kinds of food, I am prone to catching colds since I can’t fight them off, and – the worst of them all – the constant worry that one day I’m going to end up right back in the hospital because the disease has come back in full force.

All of that is nothing in comparison to the issues I dealt with before surgery, all much worse than my various trips to the bathroom: issues such as constant excruciating pain, inability to eat anything for months on end… and nothing compares to my other friends who have experienced all of those issues, as well as others like fragile teeth and bones from medication use, short gut syndrome from having multiple surgeries, and even death- as an old friend of mine ended up getting a fistula where her stomach acid leaked through her intestine, burned a hole in her heart, gave her a heart attack, and she died.

Crohn’s is a lot more than just sitting in a bathroom stall.

I’m not only upset with this new CCFA campaign because it ignores many of the other issues those with the diseases have, but simply because it highlights the most embarrassing symptom of them all.

Like, really?

If I could somehow make shitbags look sexy, the CCFA could have done much better.

The question then, as was asked in the Inflamed and Untamed blog, becomes: is any awareness better than no awareness at all. Isn’t it just about getting the word out? It’s just about letting people know we are or have suffered?

As an educated and experienced marketer myself, I simply have to say – no. I think it would be much better not to frame C & UC in such a way than let an entire nation know about only one extremely embarrassing symptom.

Sometimes things are better left unsaid.

But that’s just me.

What do you guys think of this ad campaign? As an individual with C or UC? As an individual with neither? 


[The opinion expressed here is solely of my own and does not reflect that of IDEAS]

Jessica Grossman
  • Tuyler
    Posted at 23:09h, 11 January Reply

    I question the message that the ad campaign conveys. My final impression was, “If you don’t want to be embarrassed any more, then see your doctor.” To me, it “shames” a person into seeing their doctor instead of educating someone about the long-term damage they could experience by forgoing a GI visit.

    (I’m sure you already know this, but to demonstrate a point)
    In contrast, the “Living with UC” and “Living with Crohn’s” ad campaigns are much more effective at conveying the risks of Crohn’s. They highlight how Crohn’s sufferers miss important life events, experience uncontrolled pain, and are forced to try and control their disease with numerous medications. Personally, it’s a more educated look at what day-to-day life is like for a Crohn’s/UC patient and the sacrifices that are made when the disease is not under control.

  • Julie Edwards
    Posted at 23:12h, 11 January Reply

    OMGoodness! What in the hell was CCFA thinking? Or not thinking! Poor choice of themes! I am so disgusted! They should have gotten some of “us” to help them with this ad! I know we who have/had UC and or Crohn’s could have come up with something better than this ad!! Dang.

  • Krystal Maher
    Posted at 23:16h, 11 January Reply

    I agree! Part of me laughed & part of me cringed upon seeing the ad campaign. Like you know, I had emergency ostomy surgery when I was 9. I’ve been immuno-suppressed since I was 8. Today my doctor referred to me as a sitting duck for infection & other illnesses. I also have psoriasis, which I was told can be linked to my Crohn’s/Colitis. I’ve had chronic rectal pain for the past decade. The rest of my body is being damaged by the drugs I need to take to keep my Crohn’s under control. I’ve had 3 abnormal pap tests this year, showing signs of pre-cancerous cells. The drug that finally put me into remission also causes cervical cancer! My kidney’s, liver, and lungs are kept under close watch for signs of damage. Not to mention the grand collection of mental health issues that stemmed from not having control over my body. So, yeah .. public washrooms are not that worrisome in the grand scheme of things.
    It would have been nice if the CCFA said more than “we poop a lot”.

  • Ostomate_StrokeSurvivor_hemiplegic
    Posted at 23:19h, 11 January Reply

    Before my colostomy on July 14, 2009 – I suffered from IBS, diverticulitis, and at age 25, had over 100 gallstones removed with my gallbladder. I DID sit for hours in a bathroom, with diarrhea, in horrible pain. Sometimes, as soon as I started to eat, I had to leave the table to go to the bathroom. THIS started when I was a child. I was never diagnosed with Crohns by my GI, though right before the colostomy, an ER doctor DID say he thought I had Crohns. It made perfect sense to me, based on my history – but doctors don’t listen to patients. Oh, I also had my appendix removed, a hysterectomy (unnecessary, because the REAL pain was those gallstones), so my belly had plenty of scar adhesions before that emergency colostomy.
    My colostomy became an emergency when barium turned to cement in my sigmoid colon, killing the tissue.

    I completely AGREE that a campaign that doesn’t include OUR reality is flushing the issue under the proverbial toilet. Failing to show ostomates of all ages and situations, and how we got here with varying GI disorders is a disservice to the public. I never knew about ostomy bags, until it became part of my life – and it is nothing to be ashamed of. It saved my life.
    And, yes, I have suffered blockages, and the dreaded NG tube – why not explain the seriousness of this?

    Hiding behind a stall, is not demonstrating the truth of digestive diseases.

  • MatthewD
    Posted at 23:29h, 11 January Reply

    Hi Jessica,

    Since this is my first time posting on your site I want to first say thank you for your story and all your effortst o bring greater awareness about IBD! When I was diagnosed at the age of 18 in 1986, these kind of blogs were not around and your efforts help beyond measure!

    Which leads me to why I disagree with the assertion that NO awareness is better than misinformation. Most importantly because a lack of awareness means more suffering. You are certainly not alone in the amount of suffering you experienced and any attempt to trivilaize or minimize that is not good. Even though that ad campaign has some obvious problems, the amount of discussion it generates is doing a lot of good. In fact, I would argue that the discussions that come from as a result are the best ways to genereate awareness. Your stie,and others like Inflamed and Untamed, are vehicles for which this discussion takes place. IBD is a different trip for everyone, and the trip each one has also changes throughout ones lifetieme- this makes it nearly impossible for any single ad to fully capture the experience. But the discussions that come as result,and the passion the ad generates among you and other bloggers, is what matters the most. So yes, any awareness is better. Keep up the good work!

  • donna
    Posted at 23:42h, 11 January Reply

    I’m on the fence! I remember all to well the accidents, urgency, stuck on the toilet. Sometimes with advertising they have to pick one point, something that will get attention and urgency is a big part of the disease, the adverts show that but also the words hit more. But I totally agree that it does make ibd look like only a toilet problem, belittling it! Couldn’t it have just been one of many ads showing the different sides? There is never awareness of the severity, why can’t they have someone with a bag, or someone sitting getting an infusion or showing the many other problems?

  • Karlton
    Posted at 00:08h, 12 January Reply

    It kind of leaves me speechless. The word “stupid” comes to mind. Not to make light of irritable bowel syndrome but inflammatory bowel disease can kill you. It isn’t mere diarrhea which is what the ad suggests. Have a pool of blood seeping out of that bathroom stall and then you have some accuracy at least. Show someone who is half-starved because their bowel is not allowing their body any nourishment. Talk about abscesses, fistulas, a once active person now bedridden, and then you begin to describe IBD. This seems to me a very bad joke that makes serious disease trite and boiled down to a single issue. I get they want to get people’s attention, but it looks like a massive fail to me.

  • Kristen
    Posted at 00:26h, 12 January Reply

    It makes me think whoever was involved in that campaign is just unprofessional.

    Besides that– the bathroom time seems to be the only thing that most of the non-IBD affected public knows about. Every time I tell somebody that I have Crohn’s disease, they say something like “OH, so you have diarrhea a lot”

    For me… I’ve actually never had a problem with diarrhea. I had far more problems with constipation because I always had obstructions.

    I’ve always hated the fact that having Crohn’s has made people pretty much think of me as a poop factory. Thanks a lot CCFA for perpetuating that line of thought….

  • Megan
    Posted at 00:33h, 12 January Reply

    My first reaction to the ad was like many so far who have commented: IBD and IBS are far more than just “toilet problems”.
    But then I thought about it a little more….being stuck on a toilet, having accidents and missing out on things because of constantly running to the bathroom is very traumatic. Prior to my total colectomy surgery in May ’09, I had become a shut-in, agoraphobic, because I was too terrified to leave the proximity of my bathroom. At my sickest, I would spend hours on the toilet, or lying next to it, writhing in pain and hallucinating due to extreme exhaustion. The few times I would leave the house, I would be wearing adult diapers and carrying extra clothes because I knew the chances that I would need to go immediately without a bathroom close by were very high. I had many accidents…
    The worst part for me was the fact that due to the lack of acceptance and understanding, because toilet problems are taboo, I felt ashamed and alone. On several occasions I was refused access to a toilet from retail stores because they were not for public use (resulting in terrible embarrassment when I had an accident as a result), which led to me not wanting to leave my house. I didn’t know which was worse: having an accident or facing the mortification of havning to tell a shop worker that I needed a toilet before I sh*t myself…..

    Maybe the campaign hits the mark a bit, but perhaps taking one of the more taboo aspects and making it public will help bring more awareness and discussion about the embarrassing parts. Maybe it will help others, like me, who stay home rather than go out in the world because they are too afraid to tell people that due to their illness they need emergency access to a toilet.

  • Scott Lederman
    Posted at 01:57h, 12 January Reply

    I have had my ileostomy for over 36 years and 5 years ago was diagnosed with Crohns so that is my bowel credential in order to give my opinion. This campaign is good in that it begins the dialogue for others who have no idea about this disease and who don’t even have a reference point to ask what it’s all about. When I did a 210 mile bike with GYGIG in June of 2011 to raise money for IBD research and support to other organizations that help those of us with this disease. It was amazing how many people either had someone in their family or they themselves who were struggling with IBD and so gave money for this fundraiser. But what we need is a bigger arena to bring to the forefront this life changing disease. Our culture responds to the celebrity or other famous person who comes out of the “water closet” and tell how life is difficult and at times unbearable. I think anything that sparks discussion and maybe some networking is worth it. I’m glad they had Santa, how about the Easter Bunny or the Leprechaun.

  • Beth
    Posted at 02:24h, 12 January Reply

    As a person who has spent so much time sitting on a toilet that my cats still take to sleeping in the bathroom, I have no problem with these ads. They are trying to show that these people are missing their lives because of being in the bathroom, which isn’t always the case, but it does get awareness out there and people who want more information can seek it online. Hopefully then they will learn there is more to it than sitting on a toilet.

  • Colleen
    Posted at 02:48h, 12 January Reply

    I think what they are to do is good. I have had Crohns since the age of 9. I have flared nearly constantly since then and am now 26. I don’t respond to any medications currently on the market in the United States. From the age of 13 to 18 I was on an adult dose of Methotrexate and still had blood nearly every day. I ruptured my colon my freshman year and pushed through to take finals with everyone else. Every year in college, I ended up in the hospital at least once. I was sleeping through many classes from being so sick. Since I was having problems with my health constantly, I was told to drop out of pharmacy school. Luckily, my doctor was AMAZING and understood I was graduating on time if it meant me being wheeled across the stage! (I did finish with everyone else by the way and am now a fully licensed doctor of pharmacy!)
    Ever since I was diagnosed, I have had problems with people not believing I really needed to use the bathroom as much and for as long as I did. Even in pharmacy school it was a huge issue. They all thought I was just skipping out or on my phone. This even crossed into work when people complained about me and I had to bring in a doctors note stating that I needed to use the bathroom more often and for longer! I would constantly hear from other people that their brother/cousin/friend had IBD/IBS and all they had to do was eat yogurt or take fish oil. Or that they knew other people with the disease and they didnt have to use the bathroom all the time. One professor actually told me that it was physically impossible that I needed to go that often an that perhaps I didnt have ‘what it takes’ to be a pharmacist. (I ended up in the hospital with an ESR nearly 100 less than a week later) Until I went out for my ostomy surgery ( for ten months due to complications!) no one really thought I was as sick as I really was. I think it’s important for people to understand the bathroom issues we have since they are so foreign to others. People don’t understand how a twenty something woman can mess her pants because she couldn’t get to the bathroom in 15 seconds or how you’re rectum can basically stop working so you are constantly leaking. People need to understand the bathroom is not a place of solace where we text, talk on the phone or simply skip out of work. It’s a jail, a tether, a roving ball we can be chained to during our flares. It has us skip moments, miss friends and movies, make us scared to leave the house.
    The other side effects are horrible, this I know. The joint pain, skin problems, lethargy, food problems, and depressed immune system (I get severely photophobic as well) are all horrible. But for the most part, no one sees them and well, people don’t understand how bad try can be. I think we need to work on the most identifying issue that effect us then work on the others with time. Plus at least it’s better than people not even knowing what the disease is in the first place. I will take a little understanding over none.

  • John Choy
    Posted at 03:00h, 12 January Reply

    The CCFA has become a terrible organization. They owner by Big Pharma at this point and very little good is coming out of them. This doesn’t surprise me.

  • Tannis
    Posted at 03:06h, 12 January Reply

    Hi Jessica! You probably do not remember me at all from university days as we only met briefly, but this popped up on my newsfeed and I had to comment. As a medical student who is about to finish my degree, with the intention of focusing on the gastroenterology field, I have to say: I’m not impressed.

    I think what bothers me the most is the fact that they are making “light” of the people who have IBD, by characterizing them with stereotypes (like Santa Claus? A bride?). Maybe they should show a closed bathroom door with the light on inside at night with a caption saying “IBD hasn’t let her sleep in months” or the picture of the kid sitting in a hospital gown with an NG tube saying “IBD won’t let her have ice cream”. Marketing showing realistic situations would be more effective, in my opinion.

    Making caricatures of IBD patients and then using public bathroom stalls as a setting is not appropriate. I find it akin to a teenager making fart or poop jokes.

    I wouldn’t post these up in my clinic. In fact, I wouldn’t let it be advertised anywhere NEAR my clinic.

  • Paul Hastings
    Posted at 22:13h, 12 January Reply

    What complete and utter bullshit, stupid, short sighted, insulting and just wrong….time for a change at the top.

  • Paul Hastings
    Posted at 22:13h, 12 January Reply

    and see my post on FB

  • shelly
    Posted at 19:06h, 13 January Reply

    Jess, I totally agree and I hope they retract the campaign asap. I have serious misgivings about the CCFA and have never donated to them and never will (as I do believe they don’t have much of an interest in helping much less curing IBD patients. They refuse to name their corporate donors, refuse to trial things like dietary therapy etc etc). I don’t think “the brains” there know a thing about IBD and I hope someone gets the sack for this. My daughter has UC btw and I would do anything for a cure, but not through them. They ran a contest a few years ago where the “prize” was free toilet paper for a whole year! Get it? “We” shit lots so hahahah. They retracted it and apologized but it showed their cluelessness and lack of sensitivity then and this does now. So, while I appreciate everyone walking/running/wheeling for these people I feel the money would be better served going to independent researchers/clinics working on curing this evil disease.

  • Kat
    Posted at 00:56h, 14 January Reply

    Well said, and thanks for this post. Once again the CCFA is making life more challenging for people with IBD… first those humiliating Humira ads and now this. I suffer so much – surgeries, fistulas, abscesses, wait loss, anemia, malabsorpion, no energy, side effects from medication and constant, excruciating abdominal pain that keeps me from living my life – frankly, the occasional bout of diarrhea is among the least of my concerns. I’m so sick of people reducing IBD to IBS! It’s a very complex and serious and debilitating medical condition and they are making it into a crude bathroom joke. You’re right, it is embarrassing – maybe it’s unfair, but there’s a huge stigma in our society against people with bowel irregularities; it’s seen as a weakness. This campaign is really just reinforcing the negative stereotypes about people with Crohn’s and UC.

    I’m never letting my friends or family donate to the CCFA again. Please, everyone, email them and let them know this isn’t okay!

  • ael
    Posted at 17:57h, 25 January Reply

    The commercials in question do not enlighten, they give people a very superficial view of IBD by perpetuating the misconception that it’s all about diarrhea. This is a misconception the CCFA should be dispelling, not perpetuating. This is the kind of ignorance about UC that led people to ask me…”Can’t you just take some Immodium?”

    Those Big Pharma commercials are equally misleading, making people believe all you have to do is take this ‘miracle drug’ and you’ll be symptom/disease free. I’ve actually had someone ask me why I was still suffering, when there are new drugs that will allow me to live disease and symptom free, that he saw on TV. UGH. I wanted to say, “Really? Seriously? You believe every paid ad you see on TV! Use your brain! Big Pharma is paying to run those commercials as their personal ad campaign!!” Please. There’s no truth out there, no honest presentation of Crohn’s or UC.

    I agree with what Karlton wrote…”The word “stupid” comes to mind. Not to make light of irritable bowel syndrome but inflammatory bowel disease can kill you. It isn’t mere diarrhea which is what the ad suggests. Have a pool of blood seeping out of that bathroom stall and then you have some accuracy at least. Show someone who is half-starved because their bowel is not allowing their body any nourishment. Talk about abscesses, fistulas, a once active person now bedridden, and then you begin to describe IBD.”

    Yes, show a toilet bowl full of blood, show the blood, pus, and diarrhea running down someone’s leg or in a pool on the floor when out in public. Show blood and diarrhea all over the floor or carpet from not being able to make to the toilet and being forced to release wherever you are…at work, at the supermarket, at the pharmacy.

    Show someone suffering from terrible abdominal pain, crying, unable to eat. Show the pain caused by systemic manifestations of Crohn’s or UC. Show someone who is dangerously anemic, literally starved (hasn’t been able to eat in weeks or months), laying in a hospital bed like pumped full of toxic IV drugs, with a nasogastric tube or a TPN needle or catheter stuck into a central vein in their chest to keep them alive. Show how all this hits suddenly, and how devastating it is in mind, body, and spirit to go through this time and time again, relentlessly, or for months at a time.

    Show someone in active disease who is housebound, can’t participate in life, can’t function, can’t even make it to the toilet in their own home. If they’re going to talk about the diarrhea, show the blood and what bowel incontinence is really like!! Show what it does to a person to have ulcerated, infected, sores covering their large intestine. Give people a realistic visual of what that’s like.

    I suffered horrifically and repeatedly for many years through every single one of the horrors above, before my entire colon and rectum was removed.

    I’m shocked that CCFA is NOT educating the public fully and properly. I believe CCFA commercials and the Big Pharma commericals are doing more harm than good, but invalidating and minimizing the devastating consequences of IBD. There are far too many people who don’t think IBD is a big deal and those commercials just foster that belief.

    We need to work on realistic awareness and education. Please write to CCFA and complain, if you concur. Thank you Jessica, for blogging about this and bringing it to light.

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