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Crohn's Disease Forum » General IBD Discussion » Do people take IBD seriously?


 
06-11-2014, 06:47 PM   #1
nogutsnoglory
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Do people take IBD seriously?

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!
06-11-2014, 07:04 PM   #2
DJW
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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.
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06-11-2014, 08:08 PM   #3
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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.
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06-11-2014, 08:38 PM   #4
DJW
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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.
06-11-2014, 09:05 PM   #5
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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.....?
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06-11-2014, 09:19 PM   #6
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Awareness is key. I'm thinking about that a lot.
06-11-2014, 09:49 PM   #7
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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.
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06-12-2014, 12:02 AM   #8
nogutsnoglory
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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.
06-12-2014, 03:56 AM   #9
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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.
06-12-2014, 04:43 AM   #10
valleysangel92
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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.
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06-12-2014, 05:37 AM   #11
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My mates have all known about my IBD for years and still think its IBS lol
06-12-2014, 05:49 AM   #12
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Like Danico, everyone I've told just think I have IBS and then proceed to tell me to take Buscopan and try eat better.

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06-12-2014, 05:52 AM   #13
Daisy123
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when people I know have gastric flu, I feel like 'welcome to my world'
06-12-2014, 06:10 AM   #14
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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
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06-12-2014, 06:13 AM   #15
Danico85
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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.
06-12-2014, 06:44 AM   #16
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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.
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06-12-2014, 07:39 AM   #17
nogutsnoglory
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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.
06-12-2014, 07:43 AM   #18
Danico85
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i was under the impression the mortality rate with crohns was zero. thanks for making my day
06-12-2014, 08:11 AM   #19
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i was under the impression the mortality rate with crohns was zero. thanks for making my day
It is low , but not zero
06-12-2014, 08:14 AM   #20
Danico85
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I wonder how long i have left then lol
06-12-2014, 08:21 AM   #21
LodgeLady
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I just read this on FB....

The most powerful words you can say to someone with an invisible disease is " I believe you."


06-12-2014, 08:34 AM   #22
alex_chris
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It is low , but not zero
We all have a 100% mortality rate. The fact just is that for Crohn's disease mortality sets in at age 80 or above...
06-12-2014, 08:38 AM   #23
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Have to agree with Danico, forgot what it's like to be excited to go out and do something. Ignorance is unbelievable with this, if you even try and explain it's usually..

Change your diet, watch what you eat, get more exercise all the typical malarky that makes NO SENSE whatsoever to any of us and all it wants me to do is turn around and volley them in the face.

Nobody will understand unless they have it, it's an absolute joke it's not taken as serious as it is because lets face the reality of it..

It slowly kills off your social life, takes over your home life and literally leaves you with nothing but a plate of medication and constant hospital visits.
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06-12-2014, 08:59 AM   #24
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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
06-12-2014, 09:44 AM   #25
Daisy123
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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.

Last edited by Daisy123; 06-12-2014 at 10:09 AM.
06-12-2014, 09:48 AM   #26
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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?
06-12-2014, 09:52 AM   #27
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I have lost third of my body weight since diagnosis, which is fine for me because I was little over 300lbs before my first flare up, most people I know and my former workplace have seen me when I was really sick, there were days that I would leave work at 10am and go to the hospital for a few days.
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). I personally want to demonstrate IBD in the following manner: Hang around someone who doesn't understand, and then watch everything they eat, pick several random foods and then when they eat one wait 20 minutes and punch them in the stomach. Don't explain what food it was, then punch them every 20 minutes for the next 2 hours. When they go to the washroom, lock them in there for an hour. Then when they go to bed call the to wake them up at random times without any pattern.
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06-12-2014, 10:24 AM   #28
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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.
06-12-2014, 10:29 AM   #29
valleysangel92
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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.
06-12-2014, 10:29 AM   #30
nogutsnoglory
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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.
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