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I Know the answer to my question is because it involves our crapper. I was watching an episode of reality TV "Giuliana & Bill". She is a TV personality and host of E! News. He won the first season of "The Apprentice" and they are married.

Giuliana has had a bad year with the discovery of Breast Cancer. She first had a double lumpectomy and after testing for the type of cancer had a second operation for a double mastectomy with reconstruction. She's tall and thin and I think a great person.

As I watch the shows and see all the support she receives from their families, friends and co-workers I am happy she has all of the support. I think she's brave for going in front of the TV cameras on shows like the Today show, et al and tells her story. She is a great advocate.

She is not the first or will she be the last to share about breast cancer. No one talked about it much when I was growing up and I didn't even know about it until after High School. I'm from the pepsi generation - 70's.

Now to us. We know and have heard of celebrities, newscasters, sports stars and others that have had colon cancer, FAP and or IBD. The only people I recall hearing about this didn't attract the attention that other diseases do. One was Farrah Faucet and we all know how sad that ended. Her struggle was captured in a documentary but we didn't know anything other than rectal cancer and experimental treatment. We didn't hear about operations or choices. It was basically if you get this you suffer and die. At least it brought out some awareness.

There was Katie Couric's husband who died from colon cancer before that and she has done a marvelous job getting the word out about colonoscopies. Again we are at the Cancer stage before it comes out.

Sharron Osbourne had colon cancer and I know of at least one surgery that generated some awareness on the end of their reality show. Again it was to the cancer stage.

I wish there were more people in the public eye that felt good about discussing the diseases that can end up causing cancer as well. From my experience no one is familiar with what UC is until I tell them. I had a team in a walk and contacted our family and friends for donations so at least they have heard of UC and Crohns. They don't want to hear the details and some still don't want to get colonoscopies for very lame reasons.

There are a lot of people with good blogs about their experiences and trying to educate others but I'm afraid their audience is mostly other folks going through the same things.

The diseases are more rare than Brest cancer, for example. I wish someone would make a good documentary or movie about the subject so people wouldn't think of us as freaks, people that didn't follow good diets, or other dumb reasons they think causes or cures these problems.

I donate to breast cancer too as we lost a very special person in our lives to it. She was my husbands mother and if she's known to have mammograms back in 1975 they might have caught her cancer. She showed me her scars after her surgeries and made me promise that I would get regular mammograms as she didn't want me to end up like her.

I just hope that in the next decade or so that Butt diseases gain awareness so people will know the signs when they first appear. Also that others won't be looking at us all as if we can pass along cooties with poop problems. Like when HIV came out any everybody was afraid to hug a person with AIDS.
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Tough-really well said..I think UC and Chrons are a taboo topic..its not as common as the other diseases and it's very hard to find local support. And even less common to find local support on having this surgery. That's why this forum is so valuable. A coloned healthy friend of mine caught a stomach bug on vacation and said to me "I feel your pain" really? I said I pray you don't feel my pain. No one will ever get it unless they live it. Even my husband after watching me struggle with UC for 13 years thought having surgery would just be the answer to bring me back to the days of when we first met. This disease/surgery strips a lot away from you on many levels..loss of hair, body image, mental and emotional well being, depression, anxiety, fear of unknown, energy levels, and much more. I would imagine social situations become challenging too with watching what to eat, drink.. Takedown is Tuesday and I know in addition to the usual recovery protocol..I will have to face each of the the above challenges to get my life back..a documentary on this would be great..ever notice that it's never been a topc on Dr Oz and I'm sure not on the other Dr shows too..I wonder how many people would stay tuned to Dr Oz if he started his show by saying today we are going to talk about proctocolectomy and ileostomies..
Ok thought I'd my two cents in to your topic..I fully agree with you
Tough,
I have been pleasantly surprises while watching some more modern sitcoms that are starting to mention UC, Crohns and IBD..Dr House has had everything from Celiac disease, to short gut syndrom to UC and so has Grey's...there are a couple of other series that have mentioned them without turning them into sniggering, dirty jokes...I was very, very please to see that Grey's treated the U.C. question in a two-part that pretty much covered most aspects of the disease including short gut and the dangers, difficulties and rarity of bowel transplants...
As for the movie industry...there is a limit to how much sitting and crying your guts out on the John that they will show...they do not consider it sexy enough a disease for the big screen...
If my book ever gets published I will try to get more publicity on the subject...it is not a book about bowel disease and pouches but about life and living...the disease and the pouch are just part of that life and the way I am forced to live it...
Keep up the good fight...we will one day become mainstream....
Sharon
Loved limitless..I must have missed the mention of FAP in it..I did notice that Humira has a television commercial advertising for the treatment of Chrons symptoms..I had to rewind the DVR as I couldn't believe it..maybe slowly but surely acknowledgement is making its way..unfortunately I think all our diseases are becoming more prevalent with the younger generation..
my experience is folks are very sypathetic and no one i ever met made me feel any sort of shame etc..i live in cal. and i have run into people who know others or have collitus and chrohns..each year here in santa barbara there is a run to get money for chrones and colitus organization..
and i would not be surprised seeing something on it on dr. oz i tuned in a few times and they did something on picking your nose and habit of people than eating it..they also did a show on poop..so i do not think our issue is off limits..just not discussed yet..

rebe
I'm not saying no one knows about IBD and that everyone is uncaring about it. I'm saying that it is not on public radar. You hardly hear about it until someone has colon cancer. It's great that people are aware of colon cancer and polyps.

Wouldn't it be better if people knew about IBD and FAP before it escalated to cancer or they suffered needlessly before receiving any kind of treatment?
I've been thinking about this since it's been mentioned by a number of people - especially the comparison between us and 'them' (the breast cancer people). I think that we're hyperaware of this disease yet we too are not aware of other diseases that people struggle with. I only know about FAP because of this board. I'm barely aware of ALS, MS, and other diseases because I have friends or family who are dealing with it.

For me I don't normally tell anyone about my surgery because I just don't want to go into a long, drawn-out explanation about it (which is required if understanding is to be expected). I also don't like to have the focus on me - I'd much rather focus on anyone else other than me.

But you're absolutely right toughenough - it's not something that's comfortable for most people to talk about. I have a friend who said to me (way before I had any of my surgeries) that the only thing he couldn't ever talk about was bloody diarrhea. Yep, that stuck in my brain and still makes me smile. And I can still tweak him by just mentioning the term in casual conversation. One would think that if people could talk so freely about breasts, mastectomies, and prostates that IBD/FAP/IBS could also be discussed without embarrasment.

kathy Big Grin
Kathy
Saw your response and kind of chuckled.

I too seldom talk about my surgeries. I have learned to only briefly mention them if the subject comes up and only give more detail when quizzed. I generally find people's eyes glaze over as soon as I mention colitis. At that point 90 percent of the time I can just drop it, which is fine by me. It'smy issue to deal with and I'm doing fine with it so far (which doesn't mean there are no issues).

Guess it's not one of the more popularly discussed diseases!

Lew
there are actually so many ibd diseases..ours is just one among them..also in terms of millions of americans the number is far smaller who contract our disease than say breast cancer or lung cancer..but do not dispair it is getting more known..i run into folks who have no idea about colitus,chrohns but most people do know someone who has it..

truthfully up until i got it in 04 i was not so aware of colitus..unfortunately learned through experiencing it and than the jpouch i wound up with.

rebe
quote:
Wouldn't it be better if people knew about IBD and FAP before it escalated to cancer or they suffered needlessly before receiving any kind of treatment?


Oh I think it is ridiculous that colonoscopies aren't done at least once as a kid. I have no family members who have FAP, 30% of people with FAP also are the first mutants. I had no symptoms either, besides the extra teeth and lypomas that nobody questioned. I was slightly constipated and had Anemia this past year so I had a scope and there were all the polyps. If I was diagnosed A LONG time ago I would have had more options.
You are a great illustration of the point Vanassavy. Wasn't it too late for you to get to have a j-pouch?

My GP looked up my rectum with a spectulum and thought he saw bleeding lesions. He referred me to a surgeon of some sort who said I wasn't having blood in my stool it was just tomatoes. I told him I knew what that would look like and it was not tomatoes. He was very dismissive and said that he'd seen experienced nurses mistake tomatoes in their stool as blood. He did not examine me at all.

This was many years before the diagnosis. I just thought my bouts of diarrhea we from stress. I continued to chew prescription strength Ibuprofen like candy when the pain came. My GP wrote the script. It was before it became OTC. I was takin 800mg at a time.

Here was 2 doctors that were totally clueless about the possibility of an IBD. If they didn't know how was I to know. There's stories all the time in here how ER personnel,GP's, other doctors and medical professionals that don't know about J-pouches ect. I went to see my OBGYN after the surgeries for a potential bladder prolapse and told her about my surgeries and she asked where my external bag was. She didn't know about j-pouches and she is one of the top OB's in the area.

I know there's mentions here or there in the media but not enough. I think I heard the other day that 400,000 people in the USA suffer from MS. I could have heard that wrong but there are more people with UC/Crohns and FAP etc. than 400,000. I believe IBD suffers are at least a million.

I don't think it's because MS doesn't deserve to be recognized - I've known several people with it and it can be a horrible disease leading to death. I think the reason why IBD isn't talked about more is because it has to do with our digestive systems and COLONs.

I would have benefited from an earlier diagnosis and might not have my j-pouch now.

I think CCFA does what it can and I've participated in walks but it's usually us and our families plus a few friends. The people that already know about IBD.

Maybe we could start a campaign by all of us emailing or writing letters to shows like Dr. Oz, The Doctors, Dr. Phil (there are a lot of us that suffer mentally), Dr. Drew, talk shows etc.

It would be a better world if people were more aware and knew to seek help before their diseases progressed to the level where their choices are limited.......
Classic bs happened today.

I was at Central Market here looking for Tummeric/Cucermin since that is the so called holy grail for FAP/Polyps. A lady that worked there, or maybe was a rep for something came up and pointed out a bottle and said, "Oh that is really great for joint pain, is that what you have"? I didn't even turn around I was in a horrible mood and having a pitty party in my head and kept reading the bottle ingredients and said "No, it is used to help suppress polyp growth." She just said "Oh" very slowly and walked away.

pffft

Anyway since your last reponse I have written even more contributors for the NY Times and more New Stations. Still nothing. I bet if I had some rare boob cancer they'd be all over it. Colons are just not cool I guess to talk about. Sad thing is if someone wrote about having extra canine teeth growing in as a kid is FAP related I could have been diagnosed AGES Ago. I wrote that as a final closing sentence.

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