09 Apr Dear CDC…
My name is Jessica Grossman.
In my 25 years of life, I’ve tried to live as healthy as possible.
I watch my diet.
I take vitamins.
I don’t really drink.
And I certainly do not smoke.
But I have an ostomy.
For reasons completely out of my control due to Crohn’s Disease, at the age of 13 years-old, I was told that my disease was going to kill me unless I had life-saving ostomy surgery. 12 years later, I’m alive.
I get it.
You want people to quit smoking.
I do too.
Smoking is gross.
It’s bad for you.
My grandmother died from smoking.
But you’re doing it wrong. So. Very. Wrong.
And I’m here to call you out.
I’m here to enlighten you on something you really should already know. You are a major health organization, after all..
Centre for Disease Control, this video that you put out, featuring a woman named Julia, is what you think is the perfect way to scare people out of smoking.
I’m not entirely sure, but I assume that you, Julia are a real person with this real story. But, Julia, if this your real story, I am saddened for you.
You had colon cancer due to smoking and you needed an ostomy.
But what you said in this video, Julia, to be honest, shocked me. You said:
“I had chemo and 2 surgeries, but what I hated the most was the colostomy bag.”
I’ve never experienced chemo myself, though I have witnessed many others go through it (including my father) and it looked horrendous. Losing hair, weight, being weak, nauseous, anemia, infections, … were all not as bad, you say, as being alive with an ostomy bag.
No, I’ve never had chemo.
But I have had those side effects as symptoms of my Crohn’s.
Losing hair and weight? Check.
Nausea and anemia? Check.
I am not comparing what I went through to having chemotherapy, but I still find it hard to believe that an ostomy bag is worse.
And you, the CDC, you chose to highlight this. You chose to highlight that no matter how horrendous chemo is, an ostomy bag is worse.
The campaign continues, with another, longer video from you, Julia. Here you give a bit more detail into what life is like with a bag.
It turns out, you only had a bag for a year. It’s sounds like that was a sad year for you. I’m sorry it was.
“I didn’t want to be around anyone.” You say. You say this because you were worried the bag would come loose and it would smell. You had gas and cramping and you say you were essentially “stuck at home.”
Julia, the only time I’ve ever been stuck at home was during the time I was sick with my disease. My bag rarely ever comes loose, and thanks to my healthy diet, it doesn’t even smell. Gas and cramping? My boyfriend has more of that than I do. He smells worse, too.
Julia, maybe you didn’t know we were out there – others with ostomies who could help you. Others who live meaningful and enjoyable lives. Lives that, without an ostomy bag, would not exist.
I can’t blame you, though, Julia.
It’s hard to find us. It’s hard to find the positive light hidden within our ostomy bags. You know why, Julia?
Because of organizations like the CDC.
Yes, CDC, because of you.
As your mandate states:
“CDC works 24/7 to protect America from health, safety and security threats, both foreign and in the U.S. Whether diseases start at home or abroad, are chronic or acute, curable or preventable, human error or deliberate attack, CDC fights disease and supports communities and citizens to do the same.
CDC increases the health security of our nation. As the nation’s health protection agency, CDC saves lives and protects people from health threats. To accomplish our mission, CDC conducts critical science and provides health information that protects our nation against expensive and dangerous health threats, and responds when these arise.”
Yeah, there’s a part in there that says you work to save lives.
CDC, do you realize that what you’re doing is completely contradictory to your mission?
Yes, you’re working to stop deaths related to smoking. But in return, you may actually be increasing deaths that could be avoided with ostomy surgery.
1 in 200 people in the US have some form of IBD. If it gets out of control, IBD can lead to the need for ostomy surgery. Without ostomy surgery, IBD can lead to death.
And this 1 in 200 number is just those with IBD.
Not those with colon cancer.
Not those with diverticulitis.
Not those who had traumatic accidents that need the surgery to make it through the night.
Ostomy surgery is a weird surgery. While in some cases it’s an emergency procedure like during an accident, in most cases, it’s elective.
Mine was elective.
I was literally given the option to choose between ostomy surgery or death.
And many other people are given this choice, too.
But they aren’t getting a chance to make a rational decision.
They are clouded with misconceptions and misguided notions.
Because of campaigns like this, the negativity surrounding ostomy surgery continues on.
Because of campaigns like this, many people are choosing to struggle through their disease instead of having ostomy surgery.
Because of campaigns like this, many people may choose to die.
Because of you CDC.
In the meantime, I’ll continue what I’m doing over here.
I’ll continue to spread positive ostomy awareness wherever I go. I’ll continue to visit patients faced with the decision to have ostomy surgery and help them make that rational decision. I will continue blogging about how lucky I am to be alive because of surgery. And I’ll continue to call out organizations like you.
In the meantime, CDC…
I’m supporting the UOAC in their efforts to get the CDC to remove the campaign. I have signed their change.org petition, and you should too.
Jen DeVouPosted at 16:50h, 09 April
Jess, Thank you so much for writing this. My husband had rectal cancer and got an ostomy, as well. He never smelled. No one ever knew. I was never grossed out by it. In fact, I loved it. I loved it, because it gave me a few more years to spend with him. He had a rough time adjusting to it, but he eventually came to realize it was just a part of him too. I helped him with it and we always had fun \”fighting\” over who was going to mold the ring. My husband Dave, was the love of my life and because of the ostomy I got to spend a few more years making memories. He passed away in February of last year. He fought and fought. He is my hero. He\’s also my angel. Thanks for this letter. I hope it encourages others to change how they view living with an ostomy.
Deborah PaulPosted at 16:52h, 09 April
Way to go!! My letter went out to the CDC the first day I viewed the commercial!
EmilyPosted at 16:56h, 09 April
Thank you so much for this. I had Ulcerative Colitis, and I had my colon removed as well. It HAS progressed to Crohn’s now, but I had a reversal surgery a few months after my initial surgery. And truth is, I’d much rather have the ostomy bag! Things were much easier.
John HuthmakerPosted at 17:09h, 09 April
Same for me. My J-Pouch created far more problems, and I wish I never had that surgery. I’ll live with my pouch for the rest of my life, and I’m totally content with that.
John HuthmakerPosted at 17:08h, 09 April
The only people that know I have one are the ones I have told. Not that I care that people know I have it. Its a part of my body. So I forget that its even there. I live a very active life, and my ostomy only improved that. It did come with its own set of problems. But the pro’s far outweight the cons, and they 1000x outweigh the cons of living with Ulcerative Colitis.
Bil IrvingPosted at 17:13h, 09 April
Jess, thank you for this. I’m in the UK, so they aren’t an organisation that propagandise at me directly, but even so I was completely appalled at these videos. I’ve had an ileostomy for 15 years, and I agree with everything you say. Well done for writing it, and for putting it so beautifully. I can only hope the CDC read it and realise their mistake here.
MJRPosted at 17:21h, 09 April
A few years ago I was living with daily pain and often needed a stick to walk. I had endometriosis growing on my internal organs and sticking together my colon. A surgeon refused to operate on me because of the risk of damage to my bowels. I found a better surgeon who told me there was a risk that the surgery could damage my bowel and that if this happened, I would need an ostomy. I looked up ostomy on the Internet and I found your facebook, and the positive way in which you showed what living with an ostomy was like made me decide that having an ostomy could not be any worse than what I was suffering already, and was a comfort to me in making the decision to have the surgery. As it turned out, the surgery was successful and I did not need an ostomy, and now I am thankful every day that I had it done. Thank you for sharing your experience to educate and help others.
kimPosted at 18:41h, 09 April
Yes!!!! Yes!!! Yes!!! Go Jessssssssss go!!!!
Ed McComasPosted at 18:44h, 09 April
Thank you Jess. I signed the petition as well. I am appalled by this ad. My ostomy saved my life, and I have never smoked, not once, not even “tried it” as a teenager. The CDC should be ashamed of themselves. I get the need to educate / frighten people into not smoking, but not with such a life saving device as an ostomy.
Sally A. BickerstaffPosted at 19:06h, 09 April
I had my colostomy done in 1998, for rectal cancer, at 31. 17 years later, it STILL requires vigilant management, daily, sometimes hourly. It is NOT second nature, just a never-ending new normal. For me, Julia\\\\\\\’s comments were the truth, not a sugar-coated exaggeration. What I wouldn\\\\\\\’t give to have discretion back- where gas, and output, are concerned…To be done with chafing, heaviness, odor, explosions. To feel feminine again, to sleep on my stomach, to not ever need a strange, public bathroom. No dirty sheets, or expensive \\\\\\\”forever\\\\\\\” supplies. I am resigned, more than grateful. Grateful got edged out by relentless maintenance and complexity. I prefer honesty, any day.
SanniPosted at 07:58h, 10 April
I am sure for someone with a sudden decrease in health like getting cancer, getting an ostomy is a shock. For me it was a relief. People with IBD have gass and constat uncontrolled diarreah living their normal life. Not being able to leave the house not knowing where the closest “strange” publick bathroom may be (and they definately become less strange the more one needs to use them). Having to dread an accident in your pants.. also waking up to an accidents and soiling your bed. For me my ostomy relieved me from this. I have had Crohns sinve I was 12. So I know what I am talking about. Sure I still need to empty my bag several times a day.. due to short gut several times is about 15.. even at night. BUT I have controll over it. I can wait in line to a toilet. I can survive one more buss stop. Or even finnish a conversation. Would I rather choose a healthy life with out an ostomy.. OFC. Would I go back to what my life was 7 years ago.. hell no!
It is insulting when people say things like ostomys smell… or ostomys are discusting. I do not smell. I am not discuting. Sure.. having an ostomy is no a desired way of life but there is no need to give it a bad image.
Part of adjusting to something is yor own attitude to it. If you have a bad attitude it will be much more difficult to adjust. So giving a positive attitude about ostomys to the public is important. And yes. I feel feminine and wear whatever clothes I want to.
SariahPosted at 19:11h, 09 April
I signed the petition as well. I am proud of you for speaking up!! I had to have a urosotomy due to an auto immune disease affecting my bladder known as Interstitial Cysitis. My bladder wasn’t functioning anymore. When the surgeon removed it, it was the size of a walnut and he said it was the worst bladder he had ever seen. There was NO WAY I could live with that diseased bladder anymore. I’m only 5.1/2 weeks post opp and am already grateful for the osotomy!! Before my urosotomy, I was in the bathroom 40-60 times per day. Now I can go to walmart and not have to stop to pee 5 times before I leave. I do feel the CDC sheds a negative light on it. It’s a completely false illusion put out by the CDC.
Andrea DeerPosted at 19:48h, 09 April
I’m going on 23 yrs old and I’m living with a colostomy. I’ve had the hardest time dealing with it and I am still having trouble everyday. I still cry and still get emotional with it. Once I saw that commercial I was unbelievably upset and and distraught that they could say such a thing on TV. Never have I dealt with chemo either but the things I went through from multiple surgeries and infections and unmeasurable amounts of pain and nausea. I can’t imagine someone saying they would rather have all those symptoms then a barely noticeable skin colored bag that doesn’t smell especially if taken care of. I was so hurt by this. I am so moved that you posted this. I’m glad I’m not the only one.
BrittanyPosted at 23:41h, 20 April
Andrea Deer, I am also 23 and had an ostomy for a year and a half. Your comment stuck out to me because I am the same age as you and saw that you said you’ve had a hard time dealing with it. I find sometimes it is easier when you have someone the same age as you who is going through the same things to talk to and connect with which is why I replied to your comment. Please feel free to add me (Brittany Collard) on Facebook if you want to and maybe we could talk. It was helpful for me when I was having trouble dealing with things and was feeling overwhelmed to talk to someone my own age who understood.
Joy HooperPosted at 21:33h, 09 April
Thank you Jessica for voicing what many of us feel…an ostomy can save a life, and can give someone their life back. I support the CDC’s war on not smoking, but its not right to show ostomy-life as all negative.
Jo picklerPosted at 00:56h, 10 April
I appreciate your post, your fight, and all the awareness you are brining to Crohn’s disease. However, I do not think it is appropriate to be in your underwear. Your letter to the CDC would be more powerful if you were wearing pants and just showing your scars from your surgery. It is fine to show our scars and how we have healed to our community. But the graphic pictures/selfies that you are posting are not just showing your ostomy bag. Be aware of your audience and the young teens (and males) who see your pictures on the internet. You have the opportunity to be a strong advocate.
High School Counselor and Crohn’s Disease Patient.
Audrey SilkPosted at 04:14h, 10 April
Jo, your advice is completely understandable in this day and age but I think this is a rare exception. As long as it’s kept in context it is an illustration to show that she’s physically beautiful regardless of the ostomy — that there’s nothing “ugly,” “nasty,” or unacceptable to others which the CDC is trying to portray. You can’t get that across by just showing a scar.
Audrey SilkPosted at 04:08h, 10 April
I hope you all accept this in the spirit in which it is offered…
I am the founder of a smokers’ rights organization. What that means most of all is that it’s less about smoking and more about civil liberties (i.e. being left alone to make an informed decision on the use of a legal product). I’ve also testified at hearings against soda and trans fat bans on the shared principle that my organization is fundamentally about.
What the CDC does in the case of smoking is an example of pushing beyond the boundaries of acceptable simple education and advice in EVERY form, not just this particular ad in their series of anti-smoking ads. They are ALL intended to stigmatize — to turn society into judgmental scolds and foster hatred against others in order to shame them into compliance. That is not choice, it’s tyranny.
So while I applaud Jessica and everyone else here and those who have signed the petition against this ad and the CDC’s behavior for reasons that have my whole-hearted agreement and support, I ask you to simply take a moment to consider that it is not in isolation as it pertains to bad behavior by the CDC when it comes to going after smokers. Each ad is just a different form of the same attack. In that case, I ask everyone to think twice before conceding (in writing) that, “except for this ad,” it’s otherwise okay for the CDC to go after smoking the way they have. Because the way they have for many years now has been non-stop coercion and stigmatization, not education and advice. It’s been this ugly for a long time. It’s the full ugly that has to stop, not just one ad, or else there will be the next group as rightfully offended as yours in order “to get those damn smokers.”
I’m certainly not saying you have to “defend” smoking, only that there’s no need to give them a pat on the back for their efforts otherwise, while you take them to task for one ad.
Know too that I’m don’t come totally out of left field as just a smokers’ rights advocate. While my sister never (though probably should have) had an ostomy she suffered from Crohn’s Disease from the time she was 18 (two operations) until her death at 55 a few years ago. I’m fully aware of all that’s involved with that suffering. It wasn’t the Crohn’s itself that killed her but the toll it took on her general welfare both physically and mentally.
Bottom line though… thank you, Jessica! Great pics too.
Judy KlingenhoferPosted at 03:20h, 09 January
Audrey Silk, thank you for. writing this post. I don’t know how old it is, but it needs to be read by everyone.
You don’t have to be a smoker to be targeted by the CDC, and obviously any one with an ostomy has been indirectly targeted by them. Audrey is exactly right about the way they go about their campaigns.
I’m not sure if anyone is aware, but anyone that has an ostomy has gone through pain and pain management. The point is, the CDC now has another target, pain management through opioids. They have dicided to target everyone who uses opiates for pain relief, for trauma, for post surgical pain, and for chronic pain.They have decided that any pain management by opioids should be abolished.
It has been proven that they released over blown numbers of deaths due to over doses to further their agenda. They mistakenly believe that opiates in any form should be banished, when they know that most over doses are caused by street drugs, but are targeting doctors for prescribing and patients who take pain meds in any opiate form. What they are doing is criminal in my opinion.
Can you imagine going through your ostomy surgery, or any surgery without being able to use narcotics for pain? What about those of us who have chronic pain from the long term intestinal and extra intestinal effects of IBD? Well the CDC seems to think they aren’t needed that we can use alternative therapies like acupuncture and therapies like mindfulness instead.
I understand that opiates can be addictive, and that there are problems related to that, but once more the CDC is willing to write us off to further their campaign against opioids. The people who need these medications for many reasons. There are policy decisions being made all over the country to stop the usage of opioids for any reason based on the incorrect information the CDC published, even though they admitted to inflating the numbers to further their agenda. This is how powerful this organisation is. Even Medicare is using the erroneous publications by the CDC to change policy on the coverage of opioids.
I am 60 years old and have had Crohns disease my entire life. When I was diagnosed the life expectancy was around 40 years. I beat that number by the grace of God, many surgeries, colostomy and ileostomies, and yes, pain medications. Without all of these I wouldn’t be here. And now the CDC is shaming and trying to rewrite policies nationwide, all which will and do effect me, and will effect each one of you.
The question is what do we do about it? Yes, I signed the petition 4 years ago when the first commercial came out, but the commercials are still running. This organisation needs to be stopped simply because they use their power to further their agendas no matter who they hurt.
I’m open to ideas, and organisations like Audrey is talking about are needed to fight them because they are too powerful to take on with a few posts.
May BaliPosted at 13:39h, 10 April
Well said! My daughter was born with anorectal malformation and had an ostomy surgery the day after birth. She just had it for four months and I have to say it was not such a big deal for us. Of course we were shocked to begin with, needed two people and one hour to change her bag, it was hard… But it got easier and easier to deal with it everyday. Some days later I was able to change it alone, fast and without any problems.
I am very glad she was diagnosed and operated in time. Without the ostomy she wouldn’t be with us today.
PS. Julia, honestly the smell of a smoker is far worse than the smell of a loose ostomy bag. And smokers don’t seem to care if they are bothering others with their stinky clothes, hair, breath and skin. Think again…
May BaliPosted at 13:56h, 10 April
Let me correct it. Many smokers don’t care if they stink. Some do!
KirstyPosted at 08:46h, 11 April
My mum is still alive today thanks to her ostomy, we live in the UK and are horrified to hear about this advertising campaign. Having an ostomy has not only been life-saving but it has been such a positive experience for my mum, she says she now feels part of a very exclusive club of the best and bravest people and how anyone could think chemo was worse than having an ostomy (yes, she had chemo too) is just beyond us both.
LisaPosted at 18:06h, 16 April
Thanks, Jess, you’re a great spokesperson for all of us, and I appreciate you getting this message across in such a poignant and powerful way. I have a permanent ileostomy and I signed the petition and wrote the CDC, as well. I’m happy with my ostomy and I’m proud of it, too. Contrary to what the CDC would have society believe, there’s life after ostomy surgery, and it’s very, very good. Ostomy Pride!
TomPosted at 16:40h, 17 April
Good for you Jessica and I too emailed CDC. I had colorectal cancer. I had emergency surgery when my colon ruptured and thy found cancer. I had 30 rounds of radiation with chemo and then had surgery to remove the tumor. They were not able to reconnect me and I have a colostomy for the rest of my life. After the second surgery I had IV chemo treatments. Not fun since the side effect include a whole host of side effects. I did not loss my hair but I have nerve damage in my hands and feet from the chemo. The Ostomy bag hasn’t been that big of thing and has become part of me and likely will seem to be more just part of me.
Now your are right the Ostomy bag is a walk in the park compared to having radiation and chemo. Oh I never smoked or drank and lived a very healthy life. So smoking was not the cause of my cancer. Again good for you Jessica for just a fine letter.
AviePosted at 23:45h, 19 April
The thing is….. Julia is a real ostomate, not an actor. As a real life ostomate, Julia has the right to voice how she feels about HER ostomy, whether we agree with it or not. Are we going to write a pre-approved script for every ostomate and gang up to shut down and silence every ostomate who doesn’t abide by the script? My problem with the petition is that it seeks to silence an ostomate and her right to express her feelings and experiences about her ostomy as a participant in the anti-smoking ad campaign.We may not all agree with her or share her perspective and experiences, but I don’t agree with starting a petition to silence the voice of a ‘fellow’ ostomate and her right to publicly express her own feelings and experiences.
This isn’t about whether you or I or any other ostomates ‘approve’ of her personal ostomy experience. It’s about respecting an individual ostomate’s right to her own voice.
Audrey SilkPosted at 03:54h, 23 April
Julia was handed a script.
AviePosted at 13:54h, 26 April
And maybe she was expressing her true feelings. It seems to me like all the ex-smokers featured in the anti-smoking commercials are expressing their true feelings. We don\’t know that she was told what to say. I wish someone involved in this petition to shut down her ad would reach out to Julia and give her the opportunity to speak for herself, because if her commercial expresses how she feels about her ostomy, I fully support her right to say what she feels. It\’s not up to any of us to dictate what she\’s allowed to say or what her feelings \’should\’ be.
If Julia says it was just a script she was handed and she doesn\’t really feel that way, so be it. I think the UOAA and everyone helping to spearhead this petition to the pull Julia\’s ad is taking the wrong approach in not attempting to contact Julia to let her speak for herself. If these are her feelings we have no right to shut her down and try to silence her. The thing is, no one care enough to try and ask her.
AviePosted at 13:58h, 26 April
Pardon all the \\’s. I typed it out correctly and have no idea how that even happened. ???
TrishPosted at 23:34h, 25 March
Hello Jess, so glad to fall upon your site and blog. I am currently researching and writing a book for new ostimates, with a focus on nutrition, lifestyle, sex, exercise, etc. etc. I have spoken to many ostimates and as a colon cancer patient had an ileostomy for 18 months. The thing I’ve come to learn is that the two groups of ostimates view their appliance very differently. In the case of IBD, an ostomy provides relief from typically what is years of pain. To the cancer patient, it is an unexpected shock resulting from a very frightening disease. Many of my fellow cancer patient friends hate their ostomies… in my estimation, more because of what it represents to them… disease and the threat of death. People with IBD view an ostomy as a positive life changing surgery. I think it is because of the two different paths to ostomy that you have two very different views of the appliance and all that goes with it. I wasn’t thrilled that I woke up with an ostomy after emergency surgery, but I knew it was what was needed to save my life. And because of that, I appreciated it. But, I was some glad to have it reversed. As much as the CDC advertisement may seem offensive to you, it does reflect what I am hearing from cancer patients.
Jess, I’d love to hear from you so that I can be certain that my publication has both perspectives fairly represented. This is an important distinction that health care providers, suppliers and general populations should know.