So this is not to start a debate just want opinions

[Vivvian's Mommy]

My husband has to do a arguementive paper in English.He wanted me to find out if I could get people's opinions on how they felt on both sides of the Crohn's and Ulcerative Colitis Spectrum.So please could you help?I on one side believe that everything happens for a reason and I just deal as I go along for whatever they find to help us.My husband on the other side believes they should be doing just as much research in to my disease as they do into Cancer,AIDS,etc. He believes that there are just as many of us as there are people with other medical conditions that ours just does not get recognized as much.What is your opinion for this and please keep in my mind it is for his paper and we will keep names unknown unless you inform us you want your name to be known.We need at least 5 resources.So any sites you know that debate this also please let me know.THANK YOU VERY MUCH!

 

[Cat-a-Tonic]

Personally, I don't think IBD will ever have as much support or research as things like cancer/AIDS, for several reasons. It's not terminal, for one. When you think of cancer/AIDS, you know that people suffering with those illnesses might not make it - not true of us. We certainly suffer, but we're not terminal. Plus, IBD is like the least sexy illness ever. Nobody wants to hear about our bathroom trips or our poop issues! And you can't look at a person and be able to tell that they have IBD. You can look at someone with a bald head and say, oh, they must have cancer. Not so with IBD, it's not apparent like some illnesses are. And I think a lot of people misunderstand what IBD is and think it's IBS. So yeah, I doubt it'll ever rise to the same level, research-wise and awareness-wise, as certain other illnesses.

 

[effdee]

I feel similarly to Cat. Cancer research is much easier to advertise and get donations for than Crohn's research because cancer is more known. A lot of people know someone who has or had cancer, when a lot of people still don't know what Crohn's is.

It's hard to say what should get priority in terms of research. Things discovered during research for a specific illness could very well have useful applications in other areas of medicine. Discovering anesthesia was an accident, and think of where we'd be without that. It's impossible to know what certain research will lead to, but it makes sense that diseases with a higher mortality rate would get higher priority. It might seem selfish to some to have it any other way.

 

[DustyKat]

Since research boils down to money and there is only so much in the pot then I don't ever see IBD getting the levels of funding that cancer and some other diseases do. Even within the autoimmune diseases IBD isn't anywhere near as readily recognised by the public when compared to RA, Lupus, MS, Juvenile Diabetes..........
I think there is more likely to be a cure through research into the whole autoimmune spectrum of diseases, just as most of the drug treatments trickle through from Rheumatoid Arthritis trials and approvals.

Is IBD terminal? not in the classic sense of the word perhaps but it is certainly has the potential to be life threatening for some sufferers.

Dusty.

 

[Guest]

i wish i knew of a site which was seriously taking this issue to debate, but i don't... all i can give is my personal view, gained from over 30 years of having my life changed by IBD..

way back when i was first diagnosed, discussing bowel problems just wasn't the done thing.. even my sisters who i'd always been very close to, hardly knew the ins and outs of my symptoms, my surgeries, my scars, and the full emotional impact of it all on me.

in fact, i didn't even know what Crohn's was when the specialist announced i had it - i just remember feeling relieved that 'it' had a name.

nowadays, i have noticed a growing trend of many topics being much more openly discussed, promoted, confided about.. for instance there's an advert being run on the tv here just now, appealing for support for prostate cancer research - the ad line is "save a bro, grow a mo" - meaning that people are being asked to grow a moustache & be sponsored for the prostate cancer research.. ten years ago you wouldn't hear people mentioning this kind of cancer on tv specifically, nor would it be talked about in this modern fashion..

personally, i've grown to be more open about my health issues.. it's not long since i put something about Crohn's on my facebook status for the first time - thus admitting to everyone on my friend list what i suffer from. most didn't know. and i felt ok doing it. i wouldn't have, years ago.

overall, i think all things like this are 'coming out' and i think that's a good thing, an essential step if we want the support and understanding of the general public.

i'm in my 2nd Crohn's phase of my life, and this time around i don't feel alone with it, i don't feel shy about it, and i don't fluff around the truth any more if anyone asks what's wrong.

 

[Mountaingem]

Personally, I don't think IBD will ever have as much support or research as things like cancer/AIDS, for several reasons. It's not terminal, for one. When you think of cancer/AIDS, you know that people suffering with those illnesses might not make it - not true of us. We certainly suffer, but we're not terminal. Plus, IBD is like the least sexy illness ever. Nobody wants to hear about our bathroom trips or our poop issues! And you can't look at a person and be able to tell that they have IBD. You can look at someone with a bald head and say, oh, they must have cancer. Not so with IBD, it's not apparent like some illnesses are. And I think a lot of people misunderstand what IBD is and think it's IBS. So yeah, I doubt it'll ever rise to the same level, research-wise and awareness-wise, as certain other illnesses.

OMG Cat you are soooo right! Crohn's support isn't trendy, and I'm personally of the belief that we'd get way more funding if someone like Angelina Jolie advocated for us; like Cat said, no one wants to hear about our bathroom issues.

I also agree with effdee, most people don't know anyone with Crohn's and if they do, that person tries to hide it because it can be awkward telling people about it. I'm like Ding, I used to hide it but now I'm all about trying to educate people. And there's something seriously wrong in the world when you can joke about crapping your pants and the like(bathroom humor) but talking about a digestive disease is considered taboo. People need to grow up.

Here's a website that I hope might be helpful:www.crohnsdiseasesn.com

 

[Cat-a-Tonic]

OMG Cat you are soooo right! Crohn's support isn't trendy, and I'm personally of the belief that we'd get way more funding if someone like Angelina Jolie advocated for us; like Cat said, no one wants to hear about our bathroom issues.

"Hi, I'm Angelina Jolie and I'm here today to talk about diarrhea." I just don't see it happening, but I guess you never know! This reminds me of a TV commercial I saw years ago for a Crohn's medication (don't remember which one). The actors in the commercial were soooo vague. This was several years before I became ill myself, so I didn't really know what Crohn's was back then, and the commercial did nothing to inform me. The actors would say things like, "The pain is bad" and "I had to miss my friend's wedding" but that was as descriptive as they got. I remember thinking, what kind of pain, and why did you miss your friend's wedding?? So even TV commercials directed specifically at us can't talk about bathroom issues!

 

[Vivvian's Mommy]

I fully understand that crohns is not regarded as terminal. But i can assure you that it almost killed me. I was literally starving to death. I am a woman in my fifties and have only suffered for 2 years so i think i am very lucky. However the reason i believe it should attract more research funding is because of the number of children who are afflicted. My heart goes out to those poor little scraps who have no understanding of why this is happening to them, and to their families who must feel so helpless. I hope you read the blog on this forum by the brave young man who volunteered for stem cell treatment

Yeah I got diagnosed when I was 12 but they believe it started for me as earlier as 8.I had acid reflux and cramping so badly and then when I turned 12 they thought oh its just me starting my monthly time.Come to find out I was bleeding internally and it was going out my rectum and an abcess.I didn't know at the time that was what it was and neither did my mom.I ended up in the hospital with dehydration from food poisoning and a nurse tried to tell us it was just red in the toliet from a cherry popsiclce I ate.I stayed there for a week and 2 months later was finally diagnosed.I spent most of junior high and high school in the hospital from internal bleeding and treatment was just not working for me.I become a human pin cushion covered in black and blue marks from all the IV blood transfusions.I almost died when I was 16 after surgery my heart flat lined for a minute straight and they brought me back.I almost at 18 and 20 both also after surgeries.They gave me till I was 22.I am 26 and am now told I will be in total care by the time I am 30.My tissue are being damaged from being dehydrated and kidney failure along with my liver.I have had a ostomy 4 times and this one is permanent with no colon,rectum and less then 5ft of small intestines.I have drink 2 gallons of water a day and still when I get sick that does not help as it always is coming right back out.I have a 13 month old that we were very lucky to adopt as at the time I was not consider medically challenged.Now I am...I thank God for the blessing of our daughter and how lucky we are to have her as they would now have found me unable to adopt as stated by Homestudy and a Judge.

 

[Mountaingem]

After all the things alot of stars do today, talking about diarrhea should be the LEAST embarassing thing they do!

I, too remember that commercial, it was hilarious and maddening at the same time. And not one person making a mad dash to the bathroom-lol! I guess "I had to miss my friend's wedding" sounds better than "I was stuck in the bathroom crapping my brains out.":ylol2:

It's a strong message drug companies are sending-they don't hesitate taking our money for these meds, and yet have the gall to refuse to even acknowledge the symptoms of Crohn's-unbelievable!

 

[Jennifer]

Personally, I don't think IBD will ever have as much support or research as things like cancer/AIDS, for several reasons. It's not terminal, for one. When you think of cancer/AIDS, you know that people suffering with those illnesses might not make it - not true of us. We certainly suffer, but we're not terminal.

Not everyone dies from cancer and AIDS either and its not true that you can't die from Crohn's disease because you most certainly can if its not treated. The severity is different from person to person but I was told that I would have died in two more years had I not gotten treated, meaning I would have died back when I was only 12 years old. With the way health insurance is run its easy to not get proper treatment which could result in further complications (including cancer) and death.
http://crohn.ie/archive/crohns.htm

Crohn's may not be classified as terminal but it is a chronic autoimmune disorder which I personally feel is deserving enough for a cure. If people are dying from it, it needs a cure.

 

[KellyMc]

I agree with everyone so far. Crohns does not get any publicity. I am a nurse so I knew what it was. When I tell people that I have Crohns they always say what is that.....and then of course they think it is just a little tum tum upset! When I hear coworkers complain about a stomach virus I just want to say welcome to my world! Crohns is definately not sexy or trendy...Im sure there are stars that have it, but would never talk about it. Its like HPV ( human papilloma virus )......you hear it on tv now they even have a vaccine....but Im betting most people don't know that some of the HPV's cause Genital Warts. Why don't the commercials for crohns/UC just come out and say it....Im bloated up like a dead fish, Im crapping niagra falls, my butts on fire, I missed my interview/friends wedding because Im a bazooka butt farting machine, and Im just wondering when Im gonna have to start wearing a diaper

 

[cally]

AIDS and cancer certainly do get a LOT of research attention (after all, they affect far more people than Crohn's does), but there are many research labs working on Crohn's disease and it's become somewhat of a 'hot topic' in immunology and computational research circles. In the last decade alone, we've gone from not knowing any genes that cause Crohn's disease, to knowing about over 70 genes that can be involved! We've also started to refine our understanding of how Crohn's disease actually works; scientists first thought that Crohn's was caused by the immune system hyperactively attacking the body's own gut tissue (i.e. that Crohn's was an autoimmune disease), but now Crohn's is thought to be caused by having a weaker/defective immune system that makes it easier for gut microbes to invade the intestinal walls. These invaders could thus be responsible for the chronic inflammation seen with Crohn's (and may explain why antibiotics seem to help some people with their flares).

I think one of the reasons we as patients don't see the benefits of research as quickly as people with some other diseases do is that Crohn's is an extraordinarily complex illness that we are still struggling to understand. Yes, we've found over 70 mutant genes that can be linked to Crohn's, but some of these mutations can also be found in healthy people - and we don't know why these people don't have symptoms. Many scientists believe that there is also a strong environmental component to Crohn's disease, and we don't know what that might be either. Of the 70 genes found, we don't even know what some of these genes *do* in humans. The big push in research in the coming decade will be to figure out what each of these genes is responsible for in healthy people, and figuring out what goes wrong in Crohn's.

Once we figure out what's gone wrong, we can start to try to make it right with new, better targeted drugs. (If you think about it, none of the drugs currently available to treat Crohn's do anything *specifically* for Crohn's; we're stuck with general anti-inflammatories and immune system suppressors, and anti-TNF drugs that they discovered for RA patients first).

I'm very interested in the science directed towards understanding Crohn's disease and would love to discuss further with anyone that is interested!

 

[Jennifer]

I'm very interested in the science directed towards understanding Crohn's disease and would love to discuss further with anyone that is interested!

I think we'd ALL be interested yet sadly my knowledge on the subject it a bit lacking. I've always been interested in reading scientific studies yet I haven't come across one for Crohn's yet (not that it isn't there, just that I haven't read any).

 

[cally]

Unfortunately I think most of the scientific literature out there requires paid subscription access to various journals Which sucks a lot. I get free access through my university but it's unfair that the majority of people don't get that privilege.

David in Seattle is amazing about publishing reports that he finds about IBD on this forum; a lot of the articles he posts are about microbe-host interactions in IBD and trying to use this to our advantage.

Also, Dr. Richard Blumberg is doing a ton of active research in IBD *and* he posts some of his freely available journal articles on his website! Here is a very short article where he talks broadly about research in Crohn's for those interested in what's been done and what's looking to be done in the future:

http://rsblumberg.bwh.harvard.edu/JAMA Crohn Disease.pdf

And Dr. Blumberg's website (with more articles at the bottom) is here http://rsblumberg.bwh.harvard.edu/ . However, these articles are only one lab's contribution to the fight against Crohn's (it seems like Dr. Blumberg approaches it mainly by studying mouse models of the disease); there are many, many more labs approaching Crohn's from many different angles.

Please let me know if you want more reading! I'll do my best to find whatever anyone is interested in seeing

 

[Jennifer]

Seeing how diseases work in animals is interesting but I'm more interested in what they do with people now or what they have done with people. Such as human DNA and genes, all that research that you spoke of in your first post really.

 

[Absentminded]

I've been very surprised about how many people DO know about crohn's when I tell them I have it. Most people know at least one other person who is affected by it.
I am very open about telling people and 'educating' them, especially my class mates at Uni, so that they understand better if I'm not my usual cheerful self somedays.

With regard funding, like others have said Crohn's isn't really the most Attractive of illnesses (not that any are really) but talking about your bms on a daily basis is not something that most people do.
My dad has had Mulitple Sclerosis for about 35 years now, and I was always disappointed by how seemingly little money there was for researching that. He and I are both very similar in that we believe that things do happen for a reason, and it's just the way it is.

Hey, life would be boring if it didn't have it's challenges.....(says my Dad, who can't walk anymore.)

 

[Manzyb]

OMg Cat you crack me up!!! Hi I'm Angelina Jolee and I'm here to talk about diarrhea!!! LOL I love it.

I wouldn't really mind talking about it. It seems like everytime I'm having a conversation it always turns back to poop at some point or another! why is that??

In all seriousness, I just don't believe it is a well enough known disease for it to really have that much research being done for it.

They've done all kinds of research on things like AIDS and cancer, but still haven't come up with a cure for that. I know this is horrible, and completely pessimistic, but i think that many cures will never be found for these diseases because there is way too much money to be made by sick people. Gosh! Not starting a fight, I just have to wonder sometimes.

 

[porter89xxx]

In my opinion crohns and uc are never going to be as reconised as cancer and other auto immune diseases, in ways i think it is disgusting there are young people out there that just dont no what is going on with them, other auto immune disease such as asthma, arthiritis, lupus etc you even get leaflets in the doctors surgery in the uk but never crohns or uc, i even tried to find the wristbands you can wear called got guts to give support and yet i had to have them shipped from the usa. I for one never heard about crohns until i read up on it even the doctor did not tell me about it in detail just there is some active inflammation you have we need to calm down to make you feel a little better, i really do feel there should be more done to make people aware about this illness and to show people you dont have to feel embarrased that you got it people with crohns and uc in my opinion are so strong for the amount of time/crap/**** that it takes to diagnose and go through hell and there is just no awareness of it.

 

[cally]

Seeing how diseases work in animals is interesting but I'm more interested in what they do with people now or what they have done with people. Such as human DNA and genes, all that research that you spoke of in your first post really.

The major human studies have been limited to exploring the genetic aspect of the disease (since it's impossible to control all the variables for humans and raise them in a lab to functionally study them). Most of these genetic studies are "Genome Wide Association Studies" (GWAS), which use a lot of powerful and complicated statistics to analyze enormous pools of data (data for entire genomes from hundreds of patients at a time). The data for these studies comes from microarrays, which are like little computer chips that have little pieces of DNA corresponding to unique bits of all of the human genes arranged on it. You take a sample of a patient's DNA and 'hybridize' it to the microarray chip. When there is a binding match for a particular gene marker, that segment of the chip lights up and fluoresces. Since Crohn's DNA will be mutated at some locations within certain genes, they won't bind in the same way to the microarray that a healthy person's genes would. In this way, we can quickly scan the entire genome for differences between genomes from Crohn's patients and genomes from healthy people.

One of the most famous scientists who does work in this area is Mark Daly - here's his website: http://www.wi.mit.edu/research/summaries/daly.html.
He unfortunately doesn't provide PDFs to his journal articles, but honestly I don't get much out of reading beyond the paper abstract for GWAS studies anyway - they're mostly long tables of gene acronyms and lots of statistics. Is there a way to send PDFs through this site? I could send you one of his papers if you're feeling up to plowing through it!

The other major thing done for humans in the lab is to actually grow human cells or tissues in a petri dish and study what proteins they're making, what immunological mediators they respond to or produce, how they deal with bacteria, etc. This is such a widely used method to study any disease, though, so it's hard to point you to a particular study for that. To start, Ramnik Xavier at MGH has some great work that uses these techniques.

At the end of the day, mice studies make up the bulk of all immunology research and have been truly invaluable for researching Crohn's disease, since you need to be able to manipulate and study the immune system in a living host. You can't really do that with isolated cells in a petri dish (and certainly not with actual human subjects).

 

[Fourlocos]

We are lucky that Crohn's is a bit more common that some of the super rare diseases which really get no funding for any research at all. That being said, when my son was diagnosed recently with it, many people thought it was from a single guy living on his own and not eating properly. They had no clue the severity of the disease and the complications that arise living out your life with it from a young age. Nor the serious nature of the medications used to try to control it. They don't know it is immune related either. If eating chicken instead of McDonalds could cure this wouldn't the world be a better place. I feel that the amount of research is okay right now considering so many other serious illnesses. And I do feel that AIDS and Cancer would be higher on the list of funding and should be. I will say that I have met tons of people who do know someone who has Crohns and I suck up as much information as I can from them to get educated. And so true that anything related to the colon isn't really what most would call SEXY!

 

[Mountaingem]

They've done all kinds of research on things like AIDS and cancer, but still haven't come up with a cure for that. I know this is horrible, and completely pessimistic, but i think that many cures will never be found for these diseases because there is way too much money to be made by sick people. Gosh! Not starting a fight, I just have to wonder sometimes.

My husband totally agrees with you-he thinks sick people create too much revenue for pharmacutical companies, and that there is no financial incentive to cure people. He believes that it isn't in their best interests to cure something even as simple as the flu-he always says, "Look at the empty shelves at the drug store that would cause.Tylenol, cough syrup, Kleenex, Pepto would take a huge hit if they cured the flu."

He thinks that's why medical insurance companies push the flu shot-they make the bulk of their money during flu season, and he thinks they purposely give it to people. He works at schools around kids, gets coughed and sneesed on, and never gets sick...I guess with him being so healthy it balances us out as a couple lol!

This is the only subject he is such a cynic about, BTW, so it's not like it's his personality trait to think like this as a rule...sometimes I think he has a point.

 

[outlier]

Mountaingem: Always remember ulcer research. It was better for companies to treat people with ulcers for long periods of time so the people who found h. pylori was repressed for along time as being ridiculous, until it was realized they were telling the truth. It's now silly to think anything else. So long term treatments are in the pharmaceutical companies best interest.

While Crohn's research isn't trendy and most like never will be. Autoimmune disease are as class common. They seem to be relatively trendy. Any research for any other other autoimmune disease will help crohn's.

 

[DustyKat]

Personally I don't doubt for a minute that Pharmaceutical companies have far too much of a vested interest in their drugs to ever want cures. After all why would they, there's no money to be made in a cure!

Dusty.