Do people take IBD seriously?

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nogutsnoglory

nogutsnoglory

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I can't help but feel that people don't even have a clue how awful this illness is. Sure they understand it's not a walk in the park but I don't think they know that it can be just as gruesome and burdening psychologically and physically like cancer.

People with cancer get enormous sympathy and people instantly understand the severity of their problems even if they don't know what treatment entails. But with crohns they often just say oh that sucks as if it's just another flu. I know some people have crohns and are ok and just avoid a few foods but otherwise they manage their disease well and for people who know these people they think crohns is not really a big deal. It's frustrating!
 
I hear you. It can be an invisible disease. Everyone knows cancer. They've done a great job it getting the word out. I've never heard anyone with cancer being told its in their head. On top of that IBD can be very hard to diagnose. IBS - IBD, what's the difference? You just need to learn how to handle stress better. Eat more raw veggies...that's you're problem.

Anyway, rant over.

So in short, I agree with you.
 
This has been on my mind lately, after a run in with a really uninformed acquaintance. She told me a friend of hers has Crohn's, and he just has to watch what he eats, no big deal. I didn't take the time to straighten her out. I think partly this is because of these commercials here in Canada about Crohn's. A person sitting in a restaurant looking around to see where the bathroom is, as if that is their main worry. I have almost died once so far, and to me these commercials trivialize a very serious illness. End of rant.
 
Gotta love those commercials. Not the person hows lost a third of their body weight brcause food leaves them on the floor crying. Never the person in the ICU clinging to life. Or the bathroom that looks like a crime scene because of all the blood.

But then again, we just need to find out what we've done to cause this.
 
Agreed. It seems it's a measure of understanding. It seems that folks just don't get it. I have a very compassionate boss (medical field, no less) who routinely asks if there are dietary restrictions or anything else the doctors can do. "Well," I tell her, (I give her lots of points for trying, but her point of reference is not a personal experience one, though she really does care) "not everything works for any one person. Also some foods are triggers some of the time, but not all of the time." She even pushes all the anti-pharma stuff.
So, then what? We, having this thing, do a lot of reading; trying to find out the thing/s that will work. I wish, at the very least, those close to us would do the same. It's not cancer but it can be just as debilitating or fatal. I have had two close calls myself. I do feel like a big fat whiner a lot though, strictly because people generally just don't get it. How can we raise awareness.....?
 
I know a member on the board of Crohn's And Colitis Canada and she actually gave aloe vera to my mother to give to me when I was sick. Can't say it inspired much confidence.

I guess because of the nature of it people don't always feel as comfortable talking about it, but that doesn't really help anyone since then no one is educated about it. I really want to volunteer with CACC since they do try to promote awareness for it, but I wish I knew other ways to do that more actively, too.
 
Don't get me started on those damn commercials. I want to take a baseball bat to my TV when I see a Humira commercial. (I hope Abbvie PR is reading this - your commercials suck!) Yes wondering if our symptoms will be an issue but those commercials sounds like we have IBS and they arent showing or talking about excruciating pain, complications and multiple surgeries many of us face. I understand they can't show anything graphic but cmon.
 
This is going to make me seem really dumb but I'm going to say it anyway - they advertise prescription meds on US TV?! It would really p me off seeing a medical necessary advertised like it was a new pair of trainers! Although the advert sounds like a load of rubbish - as long as I know the nearest route to the toilet everything will be okay.

In response to the original question, I'd say no, like that advert most people just think its a bit of an inconvenience and you have to go to the toilet a bit more than normal.
 
We don't have commercials about prescription medications here, which is both a blessing and a curse. Its a blessing in the way that it doesn't trivialize what we go through and it doesn't make the medication look like its just like choosing a new pair of shoes or something. Its a curse because most people I've spoken to have never even heard of crohns and therefore aren't interested in finding anything out about it.

My family and boyfriend take my illness seriously, partly because my parents saw how long I'd been ill for and how much of a toll it had taken on my body and partly because I have a step cousin who has crohns. She ended up in intensive care for five days and they weren't sure if she'd make it out, so we knew right from the start just how bad this thing can get.

In general though, most people don't have a clue, they think that its just like having a tummy bug or IBS. I've actually had someone tell me that they knew exactly what I was facing and dealing with because they have IBS. I responded by asking them when they'd last heard of IBS putting someone in intensive care.

Awareness is definitely key, crohns is at least being shown on TV programs more here but its only for short periods and never really enough to explain it properly. Unfortunately though other than that I don't see much around about crohns. The NACC does its best, but most people would rather support charities for things like cancer because they know what that is and as you said, cancer does get automatic sympathy. I don't begrudge them the support, I just wish once in a while they'd send some our way too.
 
My husband is one that still doesn't get it, don't get me wrong he has been wonderful. Still he doesn't get it. If my own husband can't fully comprehend after going through what he has with me how can I expect others too?

We don't limp. We don't show stitches or casts. When we don't eat people think your making the situation worse. They don't get how you can have YEARS with the disease.

This is one of the most psychologically draining conditions. I'm starting to feel the depression stage and I don't want to take another drug:(
 
I feel IBD takes the enjoyment out of doing things that many people get excited about, such as holidays, trips away, sports evens, camping etc. it can turn what should be excitment into dread.

I forget what it feels like to get excited about somewhere im going.
 
I hope you won't see this as criticism, but I disagree with the notion that other people should treat IBD patients differently than anyone else. As to cancer, IBDs might be painful and problematic to deal with, but it just is not a deadly disease if treated. Cancer, on the other hand, is quite deadly.

I had surgery 11 years ago and had Crohn's for 15 years now with years of problems and years of remission. Every person is different I suppose, but I don't really want anyone treating me differently than a "healthy" person.
 
Alex you are correct that unlike cancer the mortality rate with crohns or crohns complications is low. The thing is cancer can be cured and chronic diseases like crohns never go away even if one is in remission it can come back to bite at any time.

I agree the commercials are a blessing and curse. Atleast it's creating some awareness of how symptoms can cause distress and panic for us.
 
I just read this on FB....

The most powerful words you can say to someone with an invisible disease is " I believe you."
 
My mother in law is a good example of this. My husband was trying to explain to her how much pain I am in, and she just doesn't understand. She doesn't understand why I am unemployed, I can't just work through the pain, not eat something that doesn't agree, etc. She doesn't understand I am undiagnosed and can't just take anything....Hubby sees the pain I am in, though I do try to hide the severity regularly :(
 
Crohns is a chronic illness which can be life threatening. Personally I spent time in ICU and a young girl I knew died at 23. It is not cancer, and I am glad it is not cancer, but it can be extremely serious and destroy lives. I don't see it being about being treated differently, it is about understanding how difficult things are.
 
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Thanks for the optimism lol
When i was diagnosed, my consultant said to me.. and these are his very words 'IBD isnt a life threatning disease but its a life changing one'

So he was winding me up?
 
I've had 3-4 close calls when I was younger. The surgeon even told me a year later he didn't expect me to make it through the night. Almost bled out. Thankfully I was in the hospital.

I agree, I'm not looking for sympathy, just understanding of the reality of this disease.
 
I agree with Daisy123 .. I don't want people to treat me differently because of my illness, I'd just like more people to realize that it isn't just a bathroom disease. The amount of people I get saying I look 'too pretty' to be that sick is ridiculous, I also get an absurd amount of people tell me 'at least its not something serious'. The other day I had someone I thought was a friend tell me that I have a great life because they think im good looking, just minutes after I told them I was having intense pain from crohns. This is the sort of thing we have to deal with all the time and we shouldn't. I don't want to be treated differently, I just want people to respect my illness and not patronize me by trying to tell me that I'm just not eating right or I need some medicine.

Danico - Yes, IBD can be fatal but this isn't something that happens as much as it used to. Treatment methods are getting better all the time and in general the risk of death as a direct result of IBD is relatively small. Many of the deaths that do happen occur after a complication such as a bowel perforation leading to sepsis. While its wise to remember that crohns must be taken seriously and that regular monitoring and appropriate treatment is vital, I think its important to also remember that many people with crohns do reach a normal life expectancy and that extended remission can be possible.
 
I also don't want sympathy I just want people to understand I'm not a whiner or a flake. I also wish people would see me as a person and not a full time patient. After so many hospital visits and surgeries I think people don't even blink if I say I'm having an operation because it's just expected that I go for operations. Yes it might be my current normal, but it's not normal and it's not easy or routine. It's awful and people don't understand what it's like to watch other people in their 20's enjoy life while you beg for ice chips.
 
I can understand how non sufferers do not get the severity of what we face with Crohns. There are other illnesses I know virtually nothing about. Can you imagine how difficult it must be for someone out there who has a rare condition? One we have never heard of?
The two are very different illnesses. You get this when the labs/pathology come back with a positive Cancer result. The hair on the back of your neck stands up and you wonder how are you going to break it to your loved ones.
A chronic condition can be such a bummer. I am thankful for everyday, every experience. I try not to be hurt or angry for what others don't understand. We are living the human experience for whatever reason.......don't let the journey make you bitter or take any time from you. Time is one of our most valuable assets. Since this illness steals so much of our quality time ~ it becomes even more precious.
At least our condition is recognized and not in the dark like years ago. It is progress. I think IBD is taken more serious then before. How can we constructively educate others?
 
I don't try an explain anymore - I'll get answers like - Oh I have a friend with Crohn's she controls it with diet. Really - it is so much more than that - friends you never see anymore because it is too hard to go out or the meds you take you can't drive let alone work.

All day long it is commercials for Humira/Remicade or Cialias - I wait to see which day it is one day it is one type the next it is the other - so I play guessing games - which one is it today?
 
Danico85 said:
i was under the impression the mortality rate with crohns was zero. thanks for making my day ;)
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I've almost died twice because of my Crohn's, and my SO has a relative that did pass away from it. Being able to explain that to people helps them understand the severity. I always tend to explain that in cases where it's untreated/improperly treated it can be fatal at worst.
 
I recently watched a Youtube video called The Slow Death of Compassion for the Chronically Ill. He talks about the impact of inspirational stories inundating social media at the moment. Like the person with a brain tumor who got their Master's degree. People get the impression from these, that if people with chronic illness only tried harder, they would get better. They're only a small minority, the rest of us struggle to go on with our daily lives. If I ran the Boston marathon, that would do nothing to heal the ulcers in my large intestine. I used to give it 110%, and only managed to wear myself out. I no longer talk about my illness, except to my immediate family, because I find that people just don't get it.
 
It's generally a complication of crohns like an infection that's antibiotic resistant or the loss of too much bowel, complication in surgery. These are rare so it's not something to get too nervous about.
 
Tuff said:
I recently watched a Youtube video called The Slow Death of Compassion for the Chronically Ill. He talks about the impact of inspirational stories inundating social media at the moment. Like the person with a brain tumor who got their Master's degree. People get the impression from these, that if people with chronic illness only tried harder, they would get better. They're only a small minority, the rest of us struggle to go on with our daily lives. If I ran the Boston marathon, that would do nothing to heal the ulcers in my large intestine. I used to give it 110%, and only managed to wear myself out. I no longer talk about my illness, except to my immediate family, because I find that people just don't get it.
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Very interesting speech. I only had time to watch the first few 12 minutes, but I definitely identified with what he was saying. What I found interesting is that, while I agree that I have experienced this type of treatment from others, I am also guilty of adopting that same type of mentality myself. Like I need to be the superhero who overcomes the obstacles or else I am a failure. I get angry with myself when I let this disease get me down or stop me from doing something I want to do or if I find myself feeling any form of self pity. I am finally starting to recognize that these are not signs of failure, but normal emotions and am trying hard to change my way of thinking. But it is very hard for the reasons that he states. We are being programmed to think that failure to excel, even (or maybe especially) under extreme circumstances, is unacceptable. Thanks for posting this. It has helped gain a bit of perspective.
 
Some, not sure how much, research $ comes from patient advocacy groups. More awareness means more donation and more research.

I think cancer groups have done a great job of keeping it front and centre. A model to follow.

Mental illness is talked about more than before but there is still a stigma around it that I don't see with cancer.
 
If* said:
this confuses me............ a lot
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When I say the effects of the disease, I mean things like loss of blood from heavy bleeding, weight loss, malabsorption, dehydration, the increased of incident of colon cancer for those with UC etc.

With cancer, you get cancer if it's not treated properly, the tumor grows it shuts down the organ it is attached to and/or spreads, it causes those organs it is attached to stop working.

When they refer to death rates for IBD, they use phrases like "Increased mortality rate". IBD doesn't directly kill, however things that it causes to occur in the body can. They use the terms lie "Crohn's/Ulcerative Colitis related complications". If that makes more sense.
 
I just think there needs to be more visibility of chronic illnesses. We tend to get celebs who have overcome which makes those of us who struggle feel like failures. And I wish that bowel habits weren't so taboo, after all it is natural to expel undigested food. I do agree treatment is great these days compared to when I was diagnosed. I think the future will be better.
 
Daisy123 said:
when people I know have gastric flu, I feel like 'welcome to my world'
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When people I know have gastric flu, they are all like "OMG how do you cope".

For like 5 minutes because once their flu is over, they forget and no longer sympathise.

Oh, and I am so sick of jokes made about colonoscopies, just for crude laughs.

Show me the Bridesmaids food poisoning scene and I will laugh because it's funny, or Billy Connoly talking about his scope and i'll laugh, because he has been through it for real, but show me Meet the Parents where cute Jessica Alba is giving a very fat guy an enema, and I will not laugh.

:ymad:
 
Do people take IBD seriously? I would have to say in the majority cases no.

In many ways I am still angry with Crohn’s as a disease, the medical profession and also the way it’s effects are downplayed by those in positions that should know better. Yes, fatalities are rare but they do occur and the fact that this is rarely discussed not only works against getting this disease recognition but it also can lull the sufferer into a false sense of security. The last thing people with IBD need is to get a diagnosis and then tell the patient…You have IBD, take these tablets and you will be just fine. Now off you go and have a happy life. There is far too much laxity within the medical community as to the necessity to keep the disease closely monitored. I know of at least two people that now have terminal cancer because…well you know, IBD isn’t fatal and everyone is just like those people in the glossy brochures.

I know doctors think I am a pain in the arse because I question and request but I don’t give a toss. I never want to go through what I went through with Sarah again. She was undiagnosed and Crohn’s does kill, to say we dodged a bullet the day she had emergency surgery would be a massive understatement. If IBD isn’t fatal how is it that she came within a whiskers breadth of dying? It shouldn’t matter if she was diagnosed or not because as Crohn’s and Colitis Australia states: IBD is not fatal. ********!

A complication is a direct result by the IBD in most cases, those exceptions would be complications following surgery but then it could be argued that if it wasn’t for IBD they wouldn’t be having surgery in the first place.

http://www.derbyshiretimes.co.uk/ne...er-died-after-contracting-infection-1-6664825

Anyway, off my soapbox now and I just want to say that my tirade is not aimed at anything that has been said in this thread. :) It is just a topic I am very passionate about. :eek2:

Dusty. xxx
 
hey ! i do .... :p ~

actually, i think this is up there w/ MI in terms of stigma, 'cause it involves things that our society, culture, embarrassment, .... on and on.... big pharma . . . leave us clueless about.

IBD must come out of the closet, so to speak. ~ maybe ~ ? hugs.
 
Yeah I don't doubt people here with crohns or impacted as a caretaker don't get it. It's the rest of the world that doesn't. My family and close friends have seen the horror and agree with me that this is just as bad as cancer and in some cases worse.
 
What I find difficult is that a lot of people judge others by what they see.
No matter the disease.

Unfortunately I have a low self esteem and so I feel as though I should be 'keeping up appearances' but am on the journey of being strong and not giving a ****

If someone were to look at me and judge on what they see, they would see a lazy stay at home mum who does not work, but does not keep a very tidy or clean house either (well to my high standards anyway) and is disorganised about family meals too.

They would see an almost recluse who does not go out much, does not eat out, does not go to mums and bubs groups and does not visit her husbands sports games.

They do not see the pain, the anxiety of not having toilets close by, or the result of eating what I shouldn't.
They are not up at 1, 2, 3, 4am.
They do not feel the fatigue.

They do not experience the rollercoaster of tests, results, appointments, medications. The next thing, and the next.

They do not see that this is not a part of my personality.

I have learned that I cannot do everything, though I would if I could.

I hope it is the thought that counts in the end.
 
lol thanks for that valleys angels.

If i die im coming back to haunt my consultant. He basically laughed at me when i asked him if my IBD can be fatal. He looked at me like i was some sort of hypocondriate!

I have a group of about 8 close friends and 5 of us have been diagnosed with IBD.. some are worse than others. luckily ive not been hospitalised with mine. i was at my worst when i was told to watch what i was eating and eat rabbit food of a nutritionist.. i find my IBD gets better the worse my diet becomes which is weird.
 
Even though my husband is somewhat newly diagnosed (sept. 2013) I have done a crazy amount of research. And like most, I had no idea what Crohn's Disease was until that morning in the hospital the doctor came in and said, we think its crohns and in goes the NG tube. Scared me to death!

Yes, Crohn's can be fatal, and I know thats rare, but thats really isn't a huge comfort to someone or someones family member that is dealing with it. BUT, so can anything else, such as Bee Stings, food poising, riding in a car, walking down the street, a tree falling ontop of you while your walking under it, heck even dropping a soup can on your toe. Yes, that last one did happen, and the persons 's family is sueing a major corporation for "faulty bags" that allowed the person to drop said soup can on her toe, which caused a infection, which lead to her death.

Life is FULL of things that can take us out of this world everyday. I'm a person of faith and a FIRM believer that everything happens for a reason. Would I want my husband to not have this disease, H*ll YES! But, we will deal with it, do everything we can to keep it under control and spend our days making the most out of life.

We have discovered that people don't "get it" when we tell them Keith can't eat this or can't do this. Even his mom is like can he not just have this piece of bread, it shouldn't hurt him (he's gluten free and doesn't eat red meat or processed food). BUT we just roll our eyes and say No, he can't have that. That happens with EVERYTHING. Everyone has "something" to deal with in their life, and this is just ours.
 
I feel IBD takes the enjoyment out of doing things that many people get excited about, such as holidays, trips away, sports evens, camping etc. it can turn what should be excitment into dread.

I forget what it feels like to get excited about somewhere im going.

Can't agree with you more Danico. I wish I could just get a mind wipe for one day so I could get up in the morning not thinking "I wonder how today will go?" I want to look forward to trips, social events etc. without dreading how my bowels will be. I know it isn't life threatening, but it unfortunately affects just about everything in my life...I've had enough. Even when I push through, it is draining sometimes (no pun intended). I need a bowel transplant. Sorry for the vent, it's all Danico's fault :tongue:.
 
Frustrating, confusing, humbling, humiliating, hopeful, exhausting, fear, hope, anxiety, depression, and so much more, an illness that brings you to your knees.
Weight loss, hair loss, blood loss, test, medications, surgery, wound care, bed rest, tube feeding, tpn, ng tube, central line/port, dehydration, malnutrition, malabsorption, fatigue, brain fog, pain, nausea, eye problems, joint pain, arthritis, scars, incontinence, and more.....
Loss of job, activities, memory, food limitations, sleep, and more.....

What illness does the above describe?
Does it sound serious?
 
vonfunk said:
But the thing that annoys me (possibly irrationally) is that spoon thing that keeps floating around Facebook (perform an action take a spoon away etc).
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I've actually used this to ease people into the idea of how Crohn's can effect social life, but in the example I've seen there are a finite amount of spoons, so you can budget them, whereas with Crohn's you never know how many spoons you'll have. It's a very simplistic explanation for a very complicated disease.
 
I have used the spoon theory and I'm not sure people really get it anyway. They nod their heads but do they even have a clue? I guess we can only try to explain it but ultimately nobody who doesn't walk in our shoes can get it fully.
 
I understand the spoon thing, I get it, but for some reason it is one of those things that annoys me.

It's not nearly as bad as when people personify disease and say a person is "fighting" X disease, because when someone dies of whatever disease they had, saying they "lost the fight against X", blames the patient for dying because they weren't strong enough, they didn't try hard enough.

End of rant.
 
I have a number of chronic illness friends who use the spoon theory... but at the same time I feel like we're also the only ones who pay attention to it and understand it to the same level, since it is about us. I don't use it myself, but I do find it interesting. Anything to potentially get people to understand a little better.
 
I think of it more like an hourglass. The sand is my energy. It starts when I wake up in the morning. If I do something strenuous, it runs out faster. If it gets empty by the afternoon, I have to have a nap. On my bad days there's not much there to begin with.
 
nogutsnoglory said:
I can't help but feel that people don't even have a clue how awful this illness is. Sure they understand it's not a walk in the park but I don't think they know that it can be just as gruesome and burdening psychologically and physically like cancer.
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I was JUST thinking about this a few hours ago. I have never had cancer, so I can't say for certain, but I think it is just as debilitating. And I HATE that either no one knows what it is, or if they do "know" what it is they think its a simple stomach ache!

What drives me nuts is the pharmaceutical companies. They down play it SO much. The Humira commercials have someone constantly searching for a bathroom. Yes, that does happen. A lot. But its not our biggest problem by far!

CCFA posted a video about Crohn's for IBD awareness week a while back. They gave statistics of how many people are affected blah blah but they had bathroom stick figures representing the amount of people. So even CCFA is making people think that it is simply a disease that makes us go to the bathroom a lot.

How are we supposed to overcome the lack of general knowledge that people have about Crohn's when the companies that SHOULD be our biggest advocates for IBD awareness don't take it seriously enough to properly explain what it is?
 
afidz said:
I was JUST thinking about this a few hours ago. I have never had cancer, so I can't say for certain, but I think it is just as debilitating. And I HATE that either no one knows what it is, or if they do "know" what it is they think its a simple stomach ache!

What drives me nuts is the pharmaceutical companies. They down play it SO much. The Humira commercials have someone constantly searching for a bathroom. Yes, that does happen. A lot. But its not our biggest problem by far!

CCFA posted a video about Crohn's for IBD awareness week a while back. They gave statistics of how many people are affected blah blah but they had bathroom stick figures representing the amount of people. So even CCFA is making people think that it is simply a disease that makes us go to the bathroom a lot.

How are we supposed to overcome the lack of general knowledge that people have about Crohn's when the companies that SHOULD be our biggest advocates for IBD awareness don't take it seriously enough to properly explain what it is?
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Maybe we are the exception and most people with Crohn's find their symptoms are minor? I really don't know the percentage of severity for people. Obviously those of us coming on here are struggling and that's why we sought out this forum but maybe the vast majority find this disease more of an inconvenience.
 
nogutsnoglory said:
Maybe we are the exception and most people with Crohn's find their symptoms are minor? I really don't know the percentage of severity for people. Obviously those of us coming on here are struggling and that's why we sought out this forum but maybe the vast majority find this disease more of an inconvenience.
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I would really be interested in info on the 'spread/variance of severity or crohns' if anyone has any?

Sorry to diverge from main question.:blush:
 
Hi,

Just wanted to share this with everyone. My daughters boss has severe Crohn's. She belongs to another Forum other than this one, but Fox News contacted her and interviewed her regarding her experiences with Crohn's - I'll keep you updated - when I find out when it will air or if it will be just in writing - I'll share with everybody!!!

So glad a National News Station is bringing attention to our issues!! :rof:
 
I gotta say that as much as I hate Fox News, they are the only station that has ever discussed crohns disease that I have seen. I'm sure others have especially local but I have only seen fox discuss the CCFA Take Steps walk and the director explain what the illness is about. I think it's because one of the news anchors has crohns so I guess he puts pressure for the 2 min segment once a year.
 
At first I didn't want to tell to many people I had Crohn's. It seemed like an embarrassing disease. I even said that in a way it was a good thing I have it, because I have a big history of cancer in my family and now the doctors would be watching for it.

It didn't help that my parents didn't understand the potential severity of things, my husband was more upset than me and friends just didn't get it. Like all of you probably have heard, I heard things like, "I know what it's like, I have hemorrhoids" and "don't tell people you have that, just tell them..."

That all started this year. Then recently I got sick of it. I shouldn't have to hide the fact that I have Crohn's. I don't shout it out to the world but if it pertains I will bring it up. If someone asks how I can dring veggie juice I say I need to because I can't eat many veggies since I have Crohn's. If they tell me they understand because they have heartburn or whatever, I politely tell them that it's not really the same thing.

Not everyone will take me seriously but it's part of who I am now so I'm going to try not to let it embarrass me. I even bought my first package of adult diaper/pads so I can take walks without worry, and I barely hid them in my cart. ;)
 
nogutsnoglory said:
I gotta say that as much as I hate Fox News, they are the only station that has ever discussed crohns disease that I have seen. I'm sure others have especially local but I have only seen fox discuss the CCFA Take Steps walk and the director explain what the illness is about. I think it's because one of the news anchors has crohns so I guess he puts pressure for the 2 min segment once a year.
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The last Fox news article I read about Crohn's went on to say how awful IBS was...
Not exactly credible
 
i regretfully told a woman I work with that pizza bothers me sometimes and now she proceeds to say (every time she sees me get a slice of pizza) that if she had been working in the food court she wouldn't have let me get it, blah blah. it makes me mad because she doesn't know what it does to me and she doesn't understand that it's not EVERY time and I can eat whatever the hell I want...just because we decide to share that we have Crohn's doesn't mean we want your "advice" or your judgement when you really don't know anything about it.
 
afidz said:
The last Fox news article I read about Crohn's went on to say how awful IBS was...
Not exactly credible
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Really? they said IBS? Not IBD? They can't even get that right. I didn't see the article. I'm tired of people thinking it's one in the same.
 
Danico85 said:
I feel IBD takes the enjoyment out of doing things that many people get excited about, such as holidays, trips away, sports evens, camping etc. it can turn what should be excitment into dread.

I forget what it feels like to get excited about somewhere im going.
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You hit the nail right on the head.I'm suppose to be packing my motorcycle to to go visit a friend.This person said to me,after my resection,"your all better now,right?". What?!?!

I should be excited....but I am apprehensive.I try to take advantage of opportunities to educate.I share what I know when I am asked.I also have times when I don't want to talk about it.

The first question anyone asked me,after I was able to get around,after my resection was "are you contagious?". There are times when I don't want to see people I use to know because they treat me 'differently' now.It's hard to explain.

I am fortunate to be in remission.Thanks to all you crohnies I have found support my family does not give me.

I was fairly ignorant before my emergency surgery for blockage about CD.I figure I can be patient with the masses and there stupid and insensitive comments and questions...or the lack there of.

o.k....I do want to slap 'em upside the head from time to time.There,I feel better for saying that.
 
I have even seen medical sites refer to IBD as IBS or use them interchangeably. Campaign to change the name of IBS? It's so dang annoying.
 
I have to agree with the majority of the posts here, people don't really take IBD seriously enough. I'm lucky in that my symptoms are relatively minor compared to some of you guys but I still get the awful stomach pains that feel like my gut is being torn out, the 'runs', joint pain, tiredness etc etc, and yet people will just write it off as 'you haven't slept enough' or 'what did you eat?' (I don't know, it just happens!) or 'it's just a tummy ache'. Er... no?

Sometimes I just want to slap people, lol.

Mind you, you'd think that with celebrities like Dynamo (magician guy), Carrie Grant (singing teacher and general awesome person) and Sam Faiers (reality TV girl) suffering from Crohns, people would be more aware of it and take it more seriously.
 
I didn't see the television broadcast, but I've just read the online article, here is the link -http://www.bbc.co.uk/newsbeat/27810066.

Personally, I'm disappointed, Crohns and Colitis UK were aiming to raise awareness about the other effects of IBD with a major focus on fatigue. The article focuses more on a rise in the number of hospital admissions. However, it also says that eating junk food is s trigger, which might be the case for some people, but even if it does make symptoms worse, it is certainly not the sole cause and simply cutting it out will not make us better. I remember a patch last year where all I could eat was chips, rice, chocolate, bread etc and I was so underweight that my GI told me that if all I could eat was junk then he didn't care at that point, because if I'd tried to stick to healthy he could see me being admitted to the hospital and being tube fed.

Articles like this don't do enough to explain that the disease is different for everyone and that what works for one person does not work for another. In honesty it doesn't go far enough to explain the severity of the illness and it does not explain the debilitating effect crohns can have. Last night I had someone tell me that I must like being sick, because other wise I would make myself better by eating better :ymad: . I only eat small amounts of chocolate, I hardly ever drink alcohol, I never go to fast food stores and any chips/fries, burgers or sausages I eat are home cooked and I eat a lot of rice and gluten free pasta. I have the healthiest lifestyle of anyone I know, but yet I'm the sickest out of all of them too :ybatty: . The 'just eat better' brigade will be out in force tonight.

Sorry. Rant over.
 
I agree that the broadcast this morning and subsequent article did absolutely nothing to show people what living with Crohn's is really like. I was actually really disappointed with how it was shown - one GI's opinion was taken as fact and the presenters latched onto it for the entire duration of the piece. While junk food and maybe even antibiotics can be triggers for flares what many people seem to forget is that these can be irritating even to people with perfectly healthy guts! The few people I know personally with Crohn's (or those who are close to someone who does) were also disgusted with the way it was presented. I can only hope that we make a big enough storm in the wake of the event that someone admits their mistake, although that's unlikely. The last thing we need is people newly diagnosed blaming themselves and feeling the unnecessary guilt that comes from thinking it all could have been prevented by not eating one particular food. Sorry if this didn't make much grammatical sense - it's just really annoyed me!
 
MY IBD nurse told me a while ago that some doctors in the hospital think that ibd and ibs is the same thing practically and will ask them to come up to the wards and see a patient whos been diagnosed with IBS. o_O

On the other hand, I'll be completely honest. I didn't take ibd seriously when I was first diagnosed. I only had a mild case at the time, and when reading up about it, I couldn't really relate because I didn't really have any symptoms apart from a bit of stomach pain and diarrhea.
 
I didn't take it seriously when I was first dx and it was at the very least moderate. I look back now knowing what I do and can't believe how stupid I was
 
Afidz I was the same way. I had no idea what was coming. In a way when I first got diagnosed I thought it was cool. "Oh I'm joining a special club" I know it sounds nuts but I didn't have a damn clue. Oh how I'd like to rescind my membership.
 
I must admit until I got saddled with it I,d never heard of crohns,so I suppose it's understandable most people don,t have a clue.
 
When my brother was diagnosed with Crohn's, he was in & out of Children's Hospital for the better part of 6 months until someone figured out that Crohn's was the issue. Thankfully, having a family GI made my diagnosis take only a few days when it was my turn.

Over the past 20 years, I've heard everything: "My son's friend's cousin has Crohn's - they don't eat grapes. Have you stopped eating grapes?", "You don't look sick - you look great!", "Have you tried XYZ fad diet?".

While I know many people have Crohn's worse than I do, I know I'm on the road to a having a bag. Is that timeline 2 years, 10 years, or 20? Not sure, but unfortunately it's the only long term option available if the drugs don't work.

For better or worse, the wide spectrum of Crohn's symptoms hurts us in the eyes of the uninformed: they know of one person, where one thing "worked", and that's the cure for Crohn's. There have been plenty of nasty remarks on my part (I blame the Prednisone... that's the story), but it's hard to inform people on such a "random" disease. I mean, how many times of you talked to a Crohnie that has a new symptom you've never heard of?

Best we can do is keep our heads-up when we can, and give people the real story. If they don't want to listen, clog their toilet. That will teach 'em!
 
I get the dietary responses from people all the time. If it's not gluten free or specific carbohydrate, it's kefir or the like. I understand sometimes foods can cause more symptoms and sometimes avoiding those foods can help make me feel better (but only sometimes). Food, or lack of, isn't a cure. The best we can hope for is a long lasting remission.
I feel like people make the judgement that because it's digestive system related it has to be strictly food related. Ummm, not. I just try to explain in simple terms that it's an autoimmune disease that has no cure as yet, and I never know how I will feel from one day or one minute to the next. I might not look sick, so that sure doesn't help people understand. If they persist I just tell them about the lengths of bowel I'm already missing and that seems to shut them up. Lol
 
nogutsnoglory said:
I can't help but feel that people don't even have a clue how awful this illness is. Sure they understand it's not a walk in the park but I don't think they know that it can be just as gruesome and burdening psychologically and physically like cancer.

People with cancer get enormous sympathy and people instantly understand the severity of their problems even if they don't know what treatment entails. But with crohns they often just say oh that sucks as if it's just another flu. I know some people have crohns and are ok and just avoid a few foods but otherwise they manage their disease well and for people who know these people they think crohns is not really a big deal. It's frustrating!
Click to expand...

All those commercials with the smiling, happy go lucky people that make it seem as if the very worst of it is needing a close bathroom during a flare up do not help at all. Some doctors are no help as well, when I first had signs of my running battle with whatever it is I have I actually walked out ashamed I had so much pain and thought I was being a big baby. It wasn't until years later that I was in for something else I even had a clue it wasn't just really, really, really severe cycles of "gas" and firm to soft to puking out your insides from the wrong end cycles that I just had to deal with.........
 
I wish the crohns orgs made commercials with awareness. We need some big money person to be affected and change the game on our advocacy.
 
The best is when you tell people what you have and they say "oh I have a friend who has Crohn's/Colitis, and he/she is just fine! Just has to watch what they eat". This always shows me how educated people really are! Granted, before being diagnosed with Colitis I was oblivious to the disease but I did know all about Crohn's since a friend has suffered with it for years. That goes to show that there is still a lot of education needed regarding all the IBD diseases, not just the more severe ones. Either way, no one can ever compare one person's case to the next as everyone's case is different.
 
I don't think people take it serious enough. I have heard a dismissive "you look fine" so many times. They weren't there when I was diagnosed with crohn's disease in intensive care, being so underweight I could barely stand. Now I am better, but regular people can't grasp what someone goes through.

I was in high school when I got crohn's disease, the people I got most support from were not my teachers, nor my family, they were my classmates, it surprised me that children were more understanding of my disease than adults.
 
Saratay05 said:
I get the dietary responses from people all the time. If it's not gluten free or specific carbohydrate, it's kefir or the like.
Click to expand...

I have heard pretty much everything I think. Yoga, aromatherapy, acupuncture..everyone is suddenly a doctor. Can't blame them though, most people are just trying to offer help, it's the thought that counts. If yoga helped, I would be standing on my head 24/7, it's just not that simple I think.
 
Well, even in the medical community, stuff like this wasn't taken as seriously until recent years.

And like I said, blame a lot of it not taken seriously on those damn commercials.
 
In my surgical technology classes, I have stressed to my classmates as much as I can just how damaging Crohn's disease can be. All of us have scrubbed in on bowel surgeries and I've tried to rise awareness on IBD in connection with these surgeries. I gave a presentation on ileostomy surgery that ended with me doing a show and tell with my own stoma---and they didn't know I had one before that day! More exposure is needed for people to take it seriously. Otherwise, it is just a label.
 
2thFairy said:
In my surgical technology classes, I have stressed to my classmates as much as I can just how damaging Crohn's disease can be. All of us have scrubbed in on bowel surgeries and I've tried to rise awareness on IBD in connection with these surgeries. I gave a presentation on ileostomy surgery that ended with me doing a show and tell with my own stoma---and they didn't know I had one before that day! More exposure is needed for people to take it seriously. Otherwise, it is just a label.
Click to expand...

This is great.Nothing like hands on experience.What was the reaction to your stoma? What questions did they ask you?

I'm pretty open about CD with 'normal' people...quite sure they don't want to see my setons though. :eek: :yfaint: It would be something they wouldn't forget. I know a few people I'd like to show them to,but that's another story.
 
dave13 said:
This is great.Nothing like hands on experience.What was the reaction to your stoma? What questions did they ask you?

I'm pretty open about CD with 'normal' people...quite sure they don't want to see my setons though. :eek: :yfaint: It would be something they wouldn't forget. I know a few people I'd like to show them to,but that's another story.
Click to expand...

Shocked to realize that someone can have a stoma and it not be a debilitating or detectable thing, and especially to realize that it gave me a life, not took it away. They were excited to see it up close and to get to touch it (with gloves on), with lots of questions, but mostly about diet and pain issues. It was a good session.
 
2thFairy said:
Shocked to realize that someone can have a stoma and it not be a debilitating or detectable thing, and especially to realize that it gave me a life, not took it away. They were excited to see it up close and to get to touch it (with gloves on), with lots of questions, but mostly about diet and pain issues. It was a good session.
Click to expand...

That is encouraging,they can be a better resource for others now.
 

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