Is IBD worse than cancer?

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nogutsnoglory

nogutsnoglory

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I realize this is a somewhat controversial post. Let me preface by saying no two diseases can be compared and all are horrible and debilitating in their own ways and only those who experience it truly know the horror that it is.

The reason I post this question and I am talking about severe/aggressive IBD only is because this is a chronic illness. Cancer & AIDS is thought of as the worst possible things you can get and I think that's mostly because if left untreated early it has a high risk of death.

IBD is a chronic illness that seems to destroy so many things and impacts our ability to live life and I wonder which is worse. People just don't understand how horrible this illness is.
 
when my Mom, grandma, sister, aunt were diagnosed with various forms of cancer, I was thinking "ohmygawdwhat'sgonnahappen".... All 3 had surgery, rounds of medications depending on aggressiveness of the surgery =

My sister had a double mastectomy even tho only ONE breast was cancerous - the other had a precancerous spot - that one went too)... (eta - due to her choice of aggressive surgery, she never had to take meds, and she's considered cancer free right now)

Grandma had waaaaay advanced breast cancer, double mastectomy, and kicked cancer's a@@ for over 25 years before she passed (this was in the 40's/50's that she was diagnosed) That woman stormed Disneyland when I was 5, and exhausted ME!!!

My aunt kicked melanoma for a while, but it wound up metastasizing, and she did pass away..

but in all of the above, and all my friends who've undergone cancer treatments -- there is an END. Cancer goes into remission. you test every 6/12 months for a few years, and are declared cancer free after 5. There aren't "flares" of cancer tumors popping out of you randomly for no apparent reason.

If my daughter TRULY has IBD/Crohn's/UC (still not fully diagnosed).. There is no END for her.. There's always going to be, in the back of her mind (and ours) "when will this flare up".. She's only 12 (13 this week), and is planning a Girl Scout travel adventure to Europe the summer of 2014.. This is so new, I wonder if she should even ATTEMPT this.. we worry about flares -- what if she's SOOOOO incapacitated in EUROPE that she needs medical assistance??

If it were cancer?? Depending on her form of cancer, the docs would have a better base to go off, to give her aggressive or non-aggressive treatments to get her healthy for the trip, and she'd know, and they would know, if she could go. There wouldn't be a "flare" that she'd have to contend with 10,000 miles from home... in a strange country..

I think this is much worse..
 
It's true there is no end with our illness but cancer could have an end. There is higher chance of recurrence. The other thing is there are billions of dollars going to cancer research and a plethora of excellent doctors. We have very little money in our camp and few who really understand IBD. There are many GI's but few who specialize in IBD.

Cancer involves surgery, medications and bodily shame in some cases. I have experienced all that with Crohn's. I have had so many surgeries, been on a range of meds and tried natural routes, and have experienced shame and depression from this brutal disease.
 
exactly noguts == people in general are sympathetic to baldies going through cancer treatment; but aren't sympathetic to the otherwise-healthy looking Lupus or IBD sufferer.

cancer can recur = I agree.. it happened suddenly and without warning for my aunt.. But cancer's recurrences don't land you at an opera dressed in evening wear, and caught off-guard with no bathroom to be found.. unlike IBD flares.. (from what I've been reading in the past couple days since my DD was admitted to the hospital with this..)
 
I don't think this thread was started to actually rate/compare Cancer and IBD. It seems to me it is more a case of... IBD doesn't get the ... respect.. it deserves. IBD doesn't have a beginning, middle and end like cancer. It just seems to drag on, and on, and on. If you tell someone you have cancer.. you get sympathy, comfort, support. Perhaps even a fundraiser held to help you cope. Tell someone you have IBD.. Crohns, etc., etc..
????? What? What is it? Is it contagious? It does what? Oh, I don't want to hear about that... Ever see Make a Wish offer to send a kid with IBD to Disneyworld. Not going to happen. Ever see a parade for us... a celebrity endorsing us.. our disease on a talk show? I'm not saying it doesn't happen, or can't... it just is a very low key disease. We've a website where we let people lurk... AND.. I'm not faulting that.. when I 1st got ill... I had a hard time dealing with my feelings... hard time being open about my disease. It takes time... and everyone is different.. to get past those feelings of embarrassment, or ... shame... or whatever. To step up, put a human name and face to this disease. So, my thoughts are.. this isn't about comparing IBD to cancer.. at least not as disease vs disease. But, I could be wrong.

I've seen cancer spring up and take my Dad in 6 months... my Mom in a bit longer period, a friend within 8 months... Mom and Dad were up there in years, but it was still hard to take.. The friend... early 30's.. 3 rounds of chemo... a life and death fight to the end.

The so called 'experts' told me IBD was incurable. But that my odds of dying from it were low. Took me a while to get my head straight, but.. I finally decided to fight it to win. Good thing was the disease gave me the option to do that. Often cancer won't.

A long, drawn out fight... with no end of the gauntlet in sight.. can wear anyone down.
But I not only think IBD can be beaten, I know it can. So, I'm glad it wasn't cancer, OK?
 
My gastro said on the radio/BBC news that IBD often has a worse prognosis than cancer. He said there is a cure for cancer but no cure for IBD.
 
Many of the chronic disease are pretty terrible, obviously but I've thought the IBD conditions are some of the worst to have. Often they strike when young, and can be a life long struggle to cope with.

Cancer can develop when younger, but often it shows up later in life.

I've been told by a few physicians that from what they have seen severe mental illness can be one of the worst afflictions to have.
 
Interesting topic. I've had crohns for 17 years and have had everything under the sun done to me, multiple times. And I can honestly say I'm not sure which side of the coin I would go with.

Ps I went to disney twice on a wish.... Wasn't make a wish foundation, it was called sunshine foundation must be a Canadian thing.
 
jlm said:
Interesting topic. I've had crohns for 17 years and have had everything under the sun done to me, multiple times. And I can honestly say I'm not sure which side of the coin I would go with.

Ps I went to disney twice on a wish.... Wasn't make a wish foundation, it was called sunshine foundation must be a Canadian thing.
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;)

I forget how it goes now, but reminds me some of that Jim Carey line of jokes about how Americans view Canada as the frozen lands to the north were the sun never shines.

When I first began taking the sunshine vitamin, D3, I signed up for a vitamin D newsletter. I recall not long after the Canadian Cancer Society was the first, I believe, to recommend the sunshine vitamin in order to help prevent some cancers.

"Vitamin D dramatically cuts cancer risk: researchers"

http://www.nationalpost.com/news/story.html?id=0ebe88ec-4996-47e4-8616-2667fde632b0
 
When I tried to make a consult with the dr to do my takedown I got this very rude nurse that said I couldn't get an appointment for 1.5 yrs. I begged and pleaded for a sooner app also I had some issues and was told my the dr that preformed the ileo he wanted it taken down withing three months.(this dr was suppose to do my takedown but moved two weeks after doing my surgery and transfered my record to a dr 250 miles away and the only one that could do it) I told her my dr wanted it taken down withing 3 months she said who said that I said my dr she what's his name I said robono she said well guess whhat that not this dr there people here with cancer way more improtant than your issue. I was in shock I cried and said but a yr she said do you want it or not ( the appointment) crying I said yes and she booked it. Come the yr and half all excited to finally get on with my horror and talk to someone that could help me I drive 250 miles go to check in and what do you know the smae lady. She said you know I cancled your appointment and told me she mailed me that info. I never got a thing. I said oh no I'm not leaving here till I see someone... I walked to the waiting area and she shouted there are people here with more important issues than your uclerative colitis so your just gonna have to deal with it.......I was so upset I stood up and said no I'm just as important as anyone in this room you don't live the hell I go through everyday.. very fast these nurses came running to me and apolagized for what she said to me I told them what happen .. another nurse that witnessed her yelling at me and saying personal stuff out lod in front of everyone was shocked..long story short she got let go. ..yesterday I said to my mom how I stare at people and wonder what its like to have a body that has no pain and can eat what they want and not have to worry to be healthy and full of energy.. :'( I hope this makes sense I'm on my cell and I can't see what I'm typing so there's probably lots of typos.
 
Beach said:
Many of the chronic disease are pretty terrible, obviously but I've thought the IBD conditions are some of the worst to have. Often they strike when young, and can be a life long struggle to cope with.

Cancer can develop when younger, but often it shows up later in life.

I've been told by a few physicians that from what they have seen severe mental illness can be one of the worst afflictions to have.
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I can totally agree with this my husband had severe mental illness I seen what he struggled with everyday. He lost his life due to it.
 
nogutsnoglory said:
The other thing is there are billions of dollars going to cancer research and a plethora of excellent doctors. We have very little money in our camp and few who really understand IBD. There are many GI's but few who specialize in IBD.
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Valid point...
 
My major concern is crohn's disease, probably because I have it, but for other reasons too. While UC is likely an autoimmune disease, or at least has autoimmunity, which is why people have inflammation over their whole colon, crohn's disease is something very different.

Crohn's disease is a disease where the cause isn't known at all and the drugs being used for it are dangerous, don't help for many, are chronic drugs and they are not treating the cause, only the symptoms.

Crohn's disease is a lot worse than some other diseases because the treatment is so inadequate I feel.

Crohn's disease can also lead to other diseases relating to the immune system, which is I feel severely underdocumented.


I remember when I was diagnosed with crohn's disease, and the doc told me it wasn't intestinal tuberculosis. I felt releived, until a few weeks in when I realised it wasn't curable at this time, the drugs can't treat it very well, it's possible to have complications, malnourishment affects your whole body..............I only wished we all had tuberculosis, it would at the least be curable.


I do feel there is hope, because there is a chance we are closer to the causes, I just read that the EU gave a 200,000 euro grant for a study into AIEC, they will research agents that might stop bacteria from translocating into tissue, etc. The microbiome project has basically gotten us nowhere.

The mere fact that it's now very unlike that crohn's disease is an autoimmune disease, means it's curable. Which is why I was always upset people called it that.
 
I hear where you are coming from ngng...:ghug:

I think there are many parallels that be drawn between cancer and many diseases, IBD included. There are varying degrees of affliction, they have the ability to change ones life and change ones outlook on life, treatments are very often are harsh and unforgiving, it affects the sufferer and those around them profoundly and yes, IBD does kill.

Then there are the differences, for those with Crohn's disease there is no cure and for those with IBD, as has been pointed out, you are very often left in a void of misunderstanding and contempt. Unless you happen upon someone that has walked in your shoes you don't get get that sharp intake of breath and sympathy that the word cancer begets. And speaking of contempt this is just the sort of thing I am speaking about...

I answered my phone at work one day to a woman asking if I would buy a book of tickets to raise money for bowel cancer. A very worthy cause indeed but I was in no position to be dealing with this at work and I honestly didn't have the funds. So I politely declined. That obviously didn't deter the woman so she went on the give all the stats about bowel cancer, again I politely declined and explained that I was at work. Again undeterred she then started with the guilt trip and it was at this point that I told her that I have two with Crohn's disease and I donate to that cause. Her response (in a shrill contemptuous voice)? You do realise that your children having Crohn's increases their chances of bowel cancer? My response...yes I do and thank you very much for reminding me! If only you could slam down a mobile phone with the same vigour as a landline! :lol:

This disease has been the making of children in many ways but in just as many ways it has taken so much from them. They have lost choices with both their diet/lifestyle and career, their spontaneity, their ability to function on a day to day basis and more that I can't think of right now.

I don't wish for children to have cancer and I wish they didn't this disease. What I do wish though is that they had a chance at a cure.

Dusty. :heart:
 
I think with cancer - there is a more definitive pathway.
You kinda know what will happen, when it will happen and how.
With Crohns - it's just so random.
You literally have no idea what will happen.
There is no definitive pathway.
Treatments that work for some people completely debilitate other people.
The treatment that does work carries significant risks.
It has strange manifestations - everything from mouth ulcers to fistulae.
And you very quickly have to develop a thick skin and find comfortable language to discuss intimate matters such as bowel habits with strangers who need to know.

When you meet somebody new - cancer has a currency that people understand.
Crohns attracts a blank look and uncomfortable questions.
 
Sam I think that's spot on. They know so much about cancer and its likely trajectory, they know what to tell you it will be like.

With Crohn's we are constantly on edge, will the med work, will it last? Will I require emergency surgery for eating something wrong? The weird extra intestinal manifestations that can just randomly appear and the nature of flares. We have no consistency or trajectory. Crohn's is like a mad man on the loose on the street, you are afraid of them but you don't know if they are harmful, what they might do.
 
I think it's hard to compare and put all cancers in the same bag. Personally I think severe mental illness like schizophrenia, third most debilitating condition, is worst than Crohn's.
 
Not many things discourage me. I typically don't let them. This disease had me feeling totally helpless, totally hopeless. Thanks to my little pill, I haven't felt that way in years. But I vividly recall the dark place. What pisses me off... I see a story on the news about lids on disposable coffee cups here in Canada... and it makes headlines. But IBD... Crohns... Colitis... there are no news stories. There are no advertisements. There are no public information announcements. It is as if the disease, and those of us with it, are completely forgotten, completely overlooked, completely neglected. Know what I'm saying? It is just so ... frustrating.. aggravating. It is like nobody gives a **** (pardon my french). I don't know how/why/where the various foundations spend or allocate the funds they raise... I'm guessing mostly research. But someone, somewhere, needs to raise awareness levels... needs to educate people.. needs to get our stories out there.

That harrassing phone call... about cancer... at least there was somebody fighting for it.
I only wish I would get some half assed (no pun intended) fundraiser calling me about IBD
 
I think it also helps when people with crohn's disease tell people that they have the disease. I changed my mind on this slightly.

I didn't used to tell people, but other people knowing about this disease can only be positive.

The whole world knows about breast cancer, the amount of people who know about IBD is minuscule. I don't know the figures, but I'm pretty sure IBD is more common than breast cancer.

1 in 150 people in Canada have IBD.

It's probably not that fun to tell people you have an intestinal disease, but people won't be supportive and there won't be progress unless there is awareness.

Awareness is key to having the funds to actually help people with the disease.
 
I'm not sure that risk of breast cancer is lower than that of IBD, in the U.S. We commonly hear one out of every eight women will be diagnosed with breast cancer at some point in their life time.

Based on current breast cancer incidence rates, experts estimate that about one out of every eight women born today will be diagnosed with breast cancer at some time during her life.
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source

I wonder though, what the incidence rate for the world is and how that compares to that of IBD? Anyone have the numbers?
 
Breast cancer beats us in numbers 2,762,000 in the U.S. vs estimated 1,500,00 for all forms of IBD. IBD source: http://online.ccfa.org/site/MessageViewer?em_id=79128.0

All invasive cancer in U.S. is estimated at 12,549,000 by the American Cancer Society.

BC Source: http://cancer.org/cancer/cancerbasics/cancer-prevalence

I think it's the sheer numbers that generate the research money and the fact of the horrible deaths people see their loved ones go through.

People rarely die of IBD or complications and I think others just think we are a little stomach bug illness and don't understand the severity. I think awareness is key. I wish there were more videos or a documentary that went mainstream to help people understand.
 
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10% of people who develop breast cancer are male. But, if a male develops it, he is at greater risk of dying. Why? Lack of information, education. Virtually no mention is made of it.. and men who develop it don't know until it is too late. Straying off topic for a mo, same thing applies to women and heart attack. Symptoms slightly differ, and most think 'heart disease' is a male only issue. Again, it is all about information/education.
 
I've not had cancer, but from what I've heard from a few people who have, it is really not appropriate to say there is an "end" to cancer. They constantly fear a reoccurrence. Even if that's just a psychological fear, the chance they'll suffer cancer again is often quite high and it appears for many people the thought of it coming back overshadows them. In this respect I don't think it's "better" than IBD that's in remission - it really depends on the individual and the individual disease.

Anyway, I have a progressive neurological condition and endocrine problems. It's much worse than anything Crohn's could ever cause me.

What I do think is difficult with IBD is that the nature of the symptoms is embarrassing - and not the type of symptom you can expect much sympathy for. Yet this also occurs with certain cancers, though the word "cancer" seems to mean it will always be treated seriously no matter the type, cancer can't be dismissed as no big deal, just an embarrassment, like I have seen done with IBD. But then IBS gets dismissed much much more than IBD.

Mental illnesses have far worse stigma than almost any physical illness, except perhaps HIV/AIDS.

So I think Crohn's is not such a bad disease, all things considered.
 
nogutsnoglory said:
Sam I think that's spot on. They know so much about cancer and its likely trajectory, they know what to tell you it will be like.

With Crohn's we are constantly on edge, will the med work, will it last? Will I require emergency surgery for eating something wrong? The weird extra intestinal manifestations that can just randomly appear and the nature of flares. We have no consistency or trajectory. Crohn's is like a mad man on the loose on the street, you are afraid of them but you don't know if they are harmful, what they might do.
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I'm really not sure this is true - at least not for the people with cancer who I've known, though I'm sure everyone goes through different experiences. Cancer involves a lot of uncertainty. Will the treatment work? Will the remission end? Will I live or die? At least with IBD you can be pretty certain that you'll have a normal life expectancy. There are some where that's not the case, but it's a minority. While cancer can be put into remission, there are many more cases where it is literally a death sentence. So with cancer you either know you're going to die, or you know you might - which is just as uncertain as not knowing whether your Crohn's will or will not go into remission. There's even the uncertainty which it shares with IBD: will I pass it onto my children? or: my relatives have got this, will I get it too?

I do think cancer gets a disproportionate amount of charities, fundraising, publicity, etc. There are specialist nurses and hospices dedicated to cancer, when someone could be dying of a more unusual illness and be just as sick but not entitled to the supports available to those with cancer. With IBD, however, there are big websites and online forums like this one. There are posters advertising IBD support groups in my doctors' office. My neurological disease is so rare I cannot find any support of other people going through the same illness (the reason I don't like specifying it is because it's rare enough that anyone who knew me would probably work out who I am if I discussed it, and I know it sounds paranoid but I like to at least feel I'm anonymous here when I post such intimate thoughts).

I don't mean to make out that IBD is no big deal, obviously I know it's not. But I do think that, while we know all the horrible aspects of IBD, those of us who haven't been through cancer (or any other illness given) may not be aware of some of the less publicised horrible parts of that condition either.
 
My mom had a good friend who had testicular cancer and ended up having one of his testicles removed and he underwent several rounds of chemotherapy. Around this same time, I was just diagnosed and my Crohn's was out of control. He told me he was glad he was dealing with his testicular cancer, because either they would be able to cure it or they wouldn't, but once it was cured, he'd be better and wouldn't be struggling with a chronic illness. Over the years I've thought of that, as he never had any issues from his cancer again, and I've struggled periodically with flares.

While I can't compare my struggles to his, I think he was right. He's done with his cancer, and it is all over. But I'm continuing to struggle.
 
Dad had pancreatic cancer. He 'thought' he caught the flu after Christmas, he died the 1st week of June. The 'diagnosis' took months.. he went from a healthy, robust man to a ... skin N bone shell... So much so, that his wake wasn't traumatic for us, simply due to the fact that the man in the coffin didn't look like him. After his cremation, in the church, the little mini casket with his ashes in it wasn't hard to deal with, until someone placed a photo of him on top of it. That is when it really hit home.. I witnessed some of the things he went thru... in hospital.. in the midst of his dying. It mirrored my Crohns to a tee. OK, enough of the painful tripping down memory lane. I believe the survival rate of pancreatic cancer is 2% over 5 years... meaning 98% don't live 5 years with it. I heard the mortality rate for ovarian cancer is 70%.. I may be biased, prejudiced. Early on.. before diagnosis.. with my pancreatitis AND cysts.. a diagnosis of pancreatic cancer was discussed.. preliminary. Having seen what it did to my Dad, how fast it took him, I was so freakin relieved when I was told it wasn't cancer.. it was crohns. I can't tell you.

Cancer grabs the headlines. Cancer gets the big buck funding. Why? Simply because it scares the bejeepers out of EVERYBODY. Now, ask 100 strangers what they think of IBD
The majority will have never heard of it.... some will snicker, maybe giggle. A few will get it. (And by that, I don't mean they will develop it.. I mean they will understand. Some of you... those who have been around here as long as myself, or longer, will recall what was.. and I happen to believe ...still is... a common theme amongst us who have IBD. None of us would wish it on our worst enemy. IBD (CD, UC, CC, whatever) isn't cancer, I don't think we can compare the two... but, as I've found out, having IBD can result in developing cancer. I don't want to come across as if I'm ontop of my soapbox over this, but I will point out... there is so little positive about having IBD... please don't take away some idiot doctor trying to soften the blow of diagnosis by saying.. "At least it isn't cancer" ;-)
 
Yes, I heard the same thing, 1 out of every 5 women will develop breast cancer sometime in her life. This was what I heard. I asked my doctor about that when we were talking once and she said that if you put 5 women in one room, it is almost guaranteed that one will get breast cancer at some point. That is pretty scary.








Clash said:
I'm not sure that risk of breast cancer is lower than that of IBD, in the U.S. We commonly hear one out of every eight women will be diagnosed with breast cancer at some point in their life time.



source

I wonder though, what the incidence rate for the world is and how that compares to that of IBD? Anyone have the numbers?
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I have not been diagnosed with Crohns, but I suffer everyday with severe intestinal pains. I am not sure what is going on yet or what I have. However, I also suffer from another debilitating disease (IC Bladder) among other health issues.

My mother who passed away 11 years ago of secondary liver cancer was chronically ill most of her adult life. I remember when my mom found out she was dying of terminal cancer. I can still remember her telling me how she was not that unhappy about dying. She told me she has suffered so much with pain and health issues that it was kind of a relief to know there was an end in sight. Now with my mom, she suffered WAY more with her chronic illnesses in terms of pain than with the cancer. In fact when she was first diagnosed with cancer and found out it was terminal, she had a hard time believing it at first. I mean she was not in severe pain or anything.

I think it all depends on the individual and the type of cancer in terms of which is worse, IBD or cancer or any illness for that matter. I mean look at people with ALS. That is a pretty horrible disease. I also knew a woman who had scleroderma. OMG, talk about one of the worst diseases out there you can get. There are so many debilitating diseases out there and cancers too. But I do think some very painful illnesses can be worse than cancer for some people. It just depends on the person and how they feel. They are both horrible in my opinion. The one thing that really does piss me off, is that when someone says they have cancer, they are given all kinds of pain relief, no questions asked. Yet you take someone who has a chronic illness is in just as much pain, if not worse, and they will actually deny some people pain relief. It is crazy.

KINY: wow, I had no clue 1 out of every 150 people in the UK have IBD. That is a lot. I don't think it is like that here in the States. Hell, most people I talk to have never even heard of Crohns as sad as that is. Less even know about Interstitial Cystitis. These diseases need more publicity.
 
The incidence of IBD is growing, dramatically. Half a generation ago, the numbers were 1 in 300. Now, the last numbers I heard was 1 in 200, and that my part of the world held the distinction of having the highest incidence in the world. If it is 1 in 150 in the UK, then the crown has been passed. Yes, the rate of this disease is growing, and virtually no one knows about it. If they (the world) don't know about it, they won't contribute to solving it. Whoever is responsible for getting the word out, raising the funds to fight this... well, word isn't getting out. No one seems to know, and as a result, no one cares.
 
You think with how many people getting crohns disease that it would become more publicized, but it hasn't. I live in the States ( Chicago) to be exact and most everyone I talk to has never even heard of crohns disease. It just does not make sense that if so many people were coming down with it, then there would be way more people knowing about this disease. It is frustrating, and hopefully one day there will be more knowledge being spread about this and other diseases.









Kev said:
The incidence of IBD is growing, dramatically. Half a generation ago, the numbers were 1 in 300. Now, the last numbers I heard was 1 in 200, and that my part of the world held the distinction of having the highest incidence in the world. If it is 1 in 150 in the UK, then the crown has been passed. Yes, the rate of this disease is growing, and virtually no one knows about it. If they (the world) don't know about it, they won't contribute to solving it. Whoever is responsible for getting the word out, raising the funds to fight this... well, word isn't getting out. No one seems to know, and as a result, no one cares.
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What an awful and dis tasteful thread.

I have has Crohns for a few years now and I suppose I am finally coming to terms with it.
It would be very easy to sulk and let it get the better of me but you know what. I never let it stop me doing anything. I live life because I love the things in my life..and I am thankful for that. My children, my wife, family the beautiful world we live in.
I have had family members suffer/perish and die from cancer (various forms) and have seen first-hand how it leaves families, children and parent distraught, completely torn apart.
How can you compare the two? It’s like asking who’s poo’s are smelliest! Seriously people…we have crohns, and if that is my only deal in life then I will take that thank you. There are very encouraging developments with meds for crohns and it is only a matter of time. Maybe not our lifetime but it will happen.

Would I swap my sore belly and multiple trips to the bathroom with a disease that is the scourge of the human race…no thanks.
Please don’t compare cancer to crohns…completely different.

Instead of focusing on the negative and self pity, lets do what the cancer victims do. Fight and work together in beating the crap out of it.
 
N00b the thread is not meant to be offensive but clearly you don't have an aggressive version of Crohn's and cannot relate to those of us who have no lives because of this disease. I applaud you for going out fighting and living life. I can barely walk 5 feet without collapsing, I have been on a host of serious medications with crippling side effects, have had numerous surgeries, severe pain, weight loss and malnutrition. I don't have a life, I don't work, go out, my life is Crohn's. All day long I suffer and care for myself and wait till the next specialist appointment on edge not knowing when the next surgery or new medication might be. I think I have every right to pose the question. I'm not saying one illness is worse than the other but cancer gets all the attention and I think severe Crohn's is comparable in terms of suffering.
 
Of course I appreciate your comments and I feel for you more than you will ever now on a forum.

But I just dont think it does anybosy any good ready this thread. A young person who has just found out they have crohns and looking for more information is going to be horrified.

I know its reality but soemthings are not even worth talking about.

So is crohns worse than:
Parkinsons
multiple sclerosis
ect ect
why bother down that line of topic. Who is it going to benefit?
 
n00b said:
Instead of focusing on the negative and self pity, lets do what the cancer victims do. Fight and work together in beating the crap out of it.
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I'm sorry you're offended by the thread, but you've kind of illustrated one of the points which I believe this thread meant to raise (sorry if I've got that wrong, NoGutsNoGlory) - that people don't see Crohn's as that bad a disease as it can be. You refer to cancer victims as fighters - that's the stereotypical image of a cancer victim that we're all familiar with from the media and many cancer charities. In reality, people who get cancer can respond to it emotionally in as many different ways as people respond to having Crohn's.

I agree with you that cancer can, in many cases be far far worse than Crohn's. However, it's not that cancer patients are victims and fighters and people with Crohn's aren't.
 
Totally agree with you. Its not that I am offended and sorry if came across like that, eveybody has a right to vent/ask questions.

My point of posting was to highlight what a negative and inconstructive comparsion it is to compare such things.

Pairing off Cancer VS Crohns is the most negative outlook I have read.

I struggle like most to keep it all together on a daily basis and speaking from personal experince if I stumbled on this thread when I was first told I had Crohns (and we are all encouraged to educate ourself as much as possible on our condition) then I would have thought there is no hope and would have been ina worse state than what I was.

There is hope..there is ALWAYS hope. With cancer, crohns whatever, lets not forget that. But lets not start comparing who has had a worse deal in life.

There is no winner in this discussion..never will be.
 
Hey Nogutsnoglory,

I can really understand where you are coming from. Having a debilitating painful disease is not easy to live with. I still remember when I was diagnosed with having interstitial cystitis of the bladder( one the more painful issues I have endured), I remember asking the doctor when it will go away! He was a more straight forward type of doctor and said, it likely will never go away. He said it can get better with different treatments, but it usually does not go away. I remember when I was in my worst pain( I mean I literally prayed to die every night before I went to bed!), that is how much pain I was in. There was no relief for me, it was relentless. Well I told the doctor at the time that I thought I had something much worse than just that disease due to the severity of my pain, ( I thought I had cancer). The doctor told me that people with bladder cancer do Not experience the severity of pain that comes with IC and the disabling effects. He told me that they actually did lots of studies and found that people who were in late stage renal failure had more quality of life than that of an IC patient.

My whole point is, I understand that comparing diseases is insane and that each individual is different in how their diseases manifest. Some people with crohns have a mild version of it. My sons best friend was diagnosed when he was 16 going on 17. He is good right now for the last 5 years, takes no meds, nothing. He does smoke cannabis and attributes his good health to that(rolling my eyes Lol). For a person who has a milder form of a disease, yeah, it is much easier to be optimistic. But for one who is battling daily living in just survival mode, things look a lot different on that side of the fence.

My own mother suffered chronic illness for years before she got terminal cancer. I was so scared for my mom thinking , OMG she is going to be in so much pain. Well it turns out my mom even told me that her pain she had due to the cancer she had was not too bad, nothing like the pain she had been living with the last years dealing with her chronic illness. My mom said the only reason she was sad that she was dying was because of what it was going to do to us! It did rip us up emotionally, especially me and my dad. But mom said that was the ONLY reason she was sorry she was dying. In her own words she told me it was a relief to know her living in constant pain had an end in sight. So I understand what you are trying to say here.

NooB: I do not think Nogutsnoglory was trying to compare having crohns to cancer really, I mean it is hell to have either one. But what he is saying is that having a chronic illness can for some people be worse than dying. It is great that you are very optimistic and love life to it's fullest. I also love life and was extremely energetic and out going before I became sick. Had you told me 11 years ago how sick and messed up I would be now, I would never have believed it. It is very hard to stay optimistic when you are constantly in agony and jumping hurdles every minute of your life just living, or rather the correct word would be surviving each day.










nogutsnoglory said:
N00b the thread is not meant to be offensive but clearly you don't have an aggressive version of Crohn's and cannot relate to those of us who have no lives because of this disease. I applaud you for going out fighting and living life. I can barely walk 5 feet without collapsing, I have been on a host of serious medications with crippling side effects, have had numerous surgeries, severe pain, weight loss and malnutrition. I don't have a life, I don't work, go out, my life is Crohn's. All day long I suffer and care for myself and wait till the next specialist appointment on edge not knowing when the next surgery or new medication might be. I think I have every right to pose the question. I'm not saying one illness is worse than the other but cancer gets all the attention and I think severe Crohn's is comparable in terms of suffering.
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I don't think any two diseases can be compared unless they are sister diseases like CD and UC since so many of our problems overlap.

I realize the title of my post might be provocative and all of these ideas are dependent on the severity of the illness in question. The truth though is that some diseases get more sympathy than others even when they may be equally as bad, worse or at least very debilitating and chronic.

When you have cancer you immediately get sympathy and people think you are a fighter. I think when most people hear Crohn's they have no clue what it is or at best think oh ok a little diarrhea and pain. Big whoop? Get over yourself. They have no clue how serious and life altering this disease can be. I'd also like to say that it's ruined my families life as well. They see my constant agony which as parents is very depressing since it is out of their control. They try their best to care for me as an adult child and to support me. I have seen my mom break down crying. This disease tears people up and ruins lives. Us IBD people are fighters too and we deserve for people to be educated about this illness.
 
I don't think anyone intended offense. I've lost those I loved to cancer, I came damned close to it myself... yet I took no offense. On this site, we NEED to be able to say what we think... to stir up the pot occasionally.. to give utterance to thoughts niggling at the back of our heads.. And, the point about the 'value' of comparing crohns to cancer, or to any other disease... I agree that on one level it doesn't hold up to initial scrutiny, but... stop and think about this. When John Q Public is stopped in the street, or called at home.. and asked to contribute.. When the caller says they are calling on behalf of the Cancer Society... the wallet probably opens. If the caller says they are calling to raise money to fight Crohns... ?????? So, in the world outside our Crohnie Kingdom, the comparison is made every day... and Crohns never wins in that battle.. or against MS, or Arthritis, or Heart Disease... well, the list goes on and on and on. That is the problem. I had never heard of this disease before I was diagnosed, and I try to stay informed. I did recall, vaguely, years ago... occasional TV ads (public service announcements) for what they called illietis and colitis. But Crohns... where it came from (aside from the original Dr).. who decided it best to put all IBD under the one banner, why there are literally NO TV spots (I can't recall a single public service announcement in the past 7 years or more)
If it weren't for the ads promoting one of the biologics for treating Crohns, it would get no air time at all. I haven't seen any newspaper or magazine artilcles on it, nor have I seen any televised fundraisers.. no documentaries... no talk shows explaining it to their TV audience. The closest I've ever seen... Kelsey Grammars wife (now ex) appeared with Kelsey on the Howard Stern show years back to try to raise awareness of her IBS. Worst possible venue. Oprah, Ellen, Ricki... I've never heard any mention of our disease.
It showed up once, briefly, on an episode of House. Our disease is virtually unknown.

Oooops... Seems I've climbed up on my proverbial soapbox again. Apologies to all, okay?
 
DH developed Crohn's Disease 47 years ago; officially diagnosed 36 years ago. During his first visit to our family docotr after his diagnosis at a teaching hospital, the doctor told him, "Crohn's won't kill you, it will just make your life hell!" He was pretty much right...hasn't killed him yet, but life has not been fun either.
 
Ihurt said:
You think with how many people getting crohns disease that it would become more publicized, but it hasn't. I live in the States ( Chicago) to be exact and most everyone I talk to has never even heard of crohns disease. It just does not make sense that if so many people were coming down with it, then there would be way more people knowing about this disease. It is frustrating, and hopefully one day there will be more knowledge being spread about this and other diseases.
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I find here in Canada when I talk about my Crohn's, usually people know someone who also has it.
 
I have met one other person who has it, and when I used to bowl (I gave up on it simply because my work schedule made getting to bowling problematic.. way too much stress) a lady I bowled with knew someone with it... in her dart league. Talk about 6 degrees of separation. But I think the extent of the knowledge of the general population is the name... 'Crohns'. People don't know, and.. if anyone tries to tell them... it is one of those diseases where people either shudder at the details, the 'mere thought' of it all, or else they start popping jokes... either out of sheer ignorance, or some sort of defence mechanism. I understand both ... it is a real disease, but it sure presents 'surreal', right?

Hey, that's the way to educate the great un-washed. What we need is a reality show.
I mean, considering some of the stuff they turn into reality television... and how popular it is... I think there are networks who would air it, and folks who would watch it. Imagine, you don't get evicted from the house, or banished from the island, you would get flushed from the bowel....
 
What REALLY gets me, is the millions of pounds worth of research ploughed into Cancer Research and Heart disease etc and then they forget about everything else like Crohn's, MS, ME etc. I read somewhere that its something like £13million or something put into Cancer Research and like £3mill put into MS. And Cancer is EVERYWHERE - don't get me wrong, I would HATE to have it, and one of my best friends mum died from breast cancer - but it's on ATM's, adverts and EVERYTIME i see it, I wanna yell at the TV, WHAT ABOUT THE OTHER PEOPLE? WHAT ABOUT PEOPLE WITH CROHN'S? Or UC? or other things? WHY are we being forgotten about?!? Makes me so angry
 
The thing is... it is the squeaky wheel that gets the grease. I think that it is partly that whatever funds are raised... either from government, corporate or private sources.. the number (whatever it may be) goes into research. In college, one of my profs taught me a valuable lesson. It was one of the courses that he taught, accounting, business management... but the point he raised was... when there is a downturn in the economy, businesses typically will cut back, pare everything to the bone.. and they usually start with advertising. But (and he was a very successful businessman before he retired just to teach) he would cut everywhere but advertising. In a downturn, he would come up with extra money for advertising... and, any increase he gainned from it was gravy, and even if he only maintained his business base with it... hey, everyone else was in a slump.

As for the money going to cancer... this year, in Canada alone, 26,000 women will be diagnosed with ovarian cancer... and 70% of them will not survive. That is just 1 form of cancer, and 1 country, and 1 year... So, if it comes down to 'where should we spend our limited medical dollars' scenario... and it is me 'surviving' a living hell existence, or the lady in the next room... fighting for her life... I would shell out that dollar myself.

The insane thing... or, another aspect of the 'surreal' part of this disease.. I watched a Norwegian documentary on LDN that someone posted... AND one of the comments made in that film had to do with the cost of treatment... a traditional treatment that ran about $35,000.00 a patient... versus LDN... which cost about $360.00 a patient a year.
Dioes anyone else see the sheer absurdity here? Any wonder I say that Crohns is surreal.
 
When one is suffering enough, and it doesn't matter from what, life isn't worth living and I think each person should get to decide where that line is, for themselves. I don't think they should feel obligated to be a hero to others, who are NOT suffering. What bullsh*t.

Cancer is so varied. One kind is almost nothing, another prolonged, excruciating pain, followed by death.

I don't see anything abnormal about being upset about the fact that one's own suffering isn't taken seriously because it doesn't happen to fall under the blanket of cancer. But, even if I did think it was stupid to compare diseases, I don't think that gives me the right to tell others not to do it. If one doesn't like a particular thread, simply skip it. No need to thread bash.
 
I think of that old expression "I cried because I had no shoes, until I met a man who had no legs"... My point? It isn't that you can always find someone who has it worse than you... and, no one.. no matter what they are battling, has to be the hero.. (hmmm, I'm more befuddled that usual today).. we each are entitled to cope with whatever we're given the best we can, and we don't owe anyone any apologies... (given we aren't hurting them because of it)... However..., God Bless all of the Suzy Sunshines or Oscar Optimists out there... because they 'know' the secret, the truth... life is what you make of it. The occasional pity party... we're entitled, but it sure is a waste of 'life' to wallow in it. The odd rant... hey, you gotta let of a little steam now and then. Or the periodic wolf howl... grit your teeth (if you have them) and bay at the moon. And, if all else fails, a good old fashioned cry clears the crap out of the tear ducts. It is all good. Even beneficial. But is that the way one pictures getting through the rest of your life. I think not.

Yeah, cancer, other big name diseases get more respect, more attention, and a lot more research money.. while we live out our anonymous little lives battling a nasty disease. Maybe that will change if we stop being anonymous.
 
Kev said:
Yeah, cancer, other big name diseases get more respect, more attention, and a lot more research money.. while we live out our anonymous little lives battling a nasty disease. Maybe that will change if we stop being anonymous.
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I really don't think Crohn's is that unheard of. I have another illness where I know no-one with it, there's no online support forum for it, I don't even like to name it here because anyone who knows me would immediately work out it was me and I like to post here reasonably anonymously, and none of my local consultants had come across it - I was diagnosed by a worldwide specialist after over ten years of not a single doctor knowing what it was - not even having the faintest idea what it was.

So if we are comparing diseases (and I don't think that's necessarily a bad thing to do), from my perspective Crohn's is common, well known, there are pretty definitive plans of treatment options, and it's easy to find support groups online or off with other people suffering from Crohn's. Cancer is more prominent because it is very common and very deadly - also treatments and detection have advanced a lot, just a couple of decades a go it was much much more deadly, so perhaps a lot of its current publicity is a remnant from where it was a terminal disease for even more people. Plus the treatments for cancer are still absolutely horrendous.

I'm not saying every case of cancer is worse than every case of Crohn's, but I do think there are reasons as to why cancer has gotten so much funding and publicity. Not that that makes it any less miserable for those of us who suffer just as much physically but get a fraction of the support, but I think it's a case of suffering more for being in a minority. Ultimately a largely utilitarian approach seems to have developed to treating and researching diseases, which might not be the best way but I think it goes a long way to explaining it.
 
Well, I'm not saying the Crohns is the least known disease out there... far from it. There was a news story a little while back... "they" diagnosed a child with a disease.. he/she had the distinction of being the first known case... I've seen stories (documentaries, etc) on diseases where there were less than a dozen known cases worldwide. So, there will always be something that gets even less press than Crohns. However, my point is.. if you look at the incidence... the number, percentage, whatever, of folks getting Crohns, THEN compare that to how often it... makes the news, or there is a PSA raising awareness, or there is a fundraiser, celebrity endorsement, anything along that lines that tries to raise the profile... well, it just isn't happening. I've seen more drug ads for certain Crohns medications than I've seen news reports, or charity events, or PSA's, etc.
Draw yourself a little tally card... keep it near where you watch TV, or listen to the radio. Put a little check mark for any of the above.. news reports, fundraisers, PSA's for every disease that makes news... I'm betting you will fill reams of paper with tally marks for just about every disease under the sun... except Crohns. I don't think I'm imagining the ... pitiful .. lack of publicity, awareness, education, promotion. Like, I understand why those of us afflicted are... reticent, reluctant.. to shout it from the mountaintops.. but, why oh why, is no one providing a voice... an effective voice.. for our disease. Is it that the symptoms are sooooo ... disturbing.. distastful.. unpopular.. everyone ducks it.

I figure... we have our hands full... coping. I don't see us hosting a walk, or a run, to raise money... unless we could tow porta potties behind us. Don't think that would make the cut for the 6 o'clock news. But, it seems I've climbed up on my soapbox again.
 
I get your point, that given how common Crohn's is, the amount of publicity is low. I've heard the argument before that embarrassing diseases don't get talked about it - I read an article which talked about how incontinence is kept quiet for that reason. However, shouldn't that apply to colon cancer, prostate cancer, maybe even breast cancer? But breast cancer is talked about everywhere, no one seems embarrassed to talk about it. I think the lack of Crohn's publicity would be more likely linked to the fact that it is very very rarely fatal, and in most cases it is far less disabling than other common diseases like MS, Parkinson's, Alzheimer's, etc.
 
I think the key is that its rarely fatal unlike cancer and therefore doesn't generate the same enthusiasm. Also, breast cancer is very intimate and takes away from a woman's sense of self worth and I think that's why cancers gets the most attention.

We need a major philanthropist to help us get IBD on the radar in terms of awareness and research.

Somehow breast cancer through Komen has become commercialized and the pink ribbon campaign spread everywhere. I think most of the bc awareness is due to non bc people supporting the cause. With IBD its only patients and some family involved. You don't see college chapters dedicated to fighting IBD like you do with cancer etc. We need to get people on board but we don't have enough to mobilize.
 
I'm on both sides of the coin. I had kidney cancer and they didn't find out till at least five yrs. after I had the tumor. They later saw it from a catscan from 2005 and I was diagnosed in 2009. I had to have surgery which lasted three and a half hours and thankfully no chemo. Dr. said it doen't help for certain cancers. It is now exactly 4 yrs. later and thank God I am still cancer free.
I was diagnosed with crohn's in 2011 then. I've had a few bad bouts that lasted awhile and then good again. I am mild compared to most people on here I think and I am so thankful for that. As long as I eat right, I am usually ok. So for me the surgery was horrible pain for awhile afterwards. But it is gone now. All in all if you have certain cancers, it is probably just as bad. I know people that have been battling lukemia for yrs and it is no picnic. It is apples and oranges, really can't compare them. But Crohn's is horrible for many too.:(
 
Yeah... the low mortality rate is a double edged sword. Mind you, my 1st reaction when I was told it was rarely fatal was a sigh of relief that almost blew the doctor off his feet. (OK, bit of an exxageration). But, I think everyone gets my drift... been there, done that. But, then... living (if you can call it that... for me, it was more of an unending, almost unendurable nightmare at times).. with the disease... I was totally unprepared for it. Being sick, helpless, weak, housebound... spending more time in the bathroom than I did in any other aspect of my life... being faced with the loss of my career, my savings, my home... or looking at the cost of the treatments. My GI kept me in 5-ASA free of charge... (I wasn't working, had no income).. I got my pred from a 'charity' pharmacy at cost (lucky they were cheap)... but, if the biologics had been an option for me (they weren't)... there was no way on Earth that I could afford them. And my disease was raging through me like wildfire. So, maybe not fatal per se... but it was 'killing' my life as I knew it. And, as I've said before.. it was a disease that I had never heard of before.

I was aware of colo-rectal cancer... I reached a certain age, received a kit in the mail, paid for by provincial government.. an initiative of the Cancer Society.. to freely test for colo-rectal cancer. Great initiative... talk about clout.. and it makes economic sense. To screen for a disease early, on a broad scale, in the 'target' group it usually hits. You can overlook the potential savings in 'loss of life'.. just look at the savings in treatment, hospitalization, medication... just from a purely financial savings basis, it makes sense.
In countries where there is national health service, there must be a case that can be made for tackling Crohns in a similar fashion.. OK, early detection isn't a viable option.. but public awareness, education... AND maybe a.. less expensive treatment regimen.. so that big pharma isn't siphoning off so much into their own coffers. There's a wild idea.

A friend developed leukemia.. lost the battle. Here's the odd thing. The Cancer Society was there to offer assistance... to the patient.. but not to cover the cost of chemo. No, they didn't/couldn't help with that... but they did provide a wig to hide the hairloss. You know... that made me wonder... these.. non profits.. we contribute to, or turn to.. who decides where/when/why or how they spend their money. What goes to researchh? What (if any) goes to individuals ... what goes to advertising, fund raising, or overhead?

I wrote one fan letter in my life... and only one. To Mike Holmes. He and his daughter did a PSA on radio for Crohns. She has it. I never got a reply (never really expected one). And I only heard the PSA a couple of times about 2 years back... none lately, and none featuring Mike or his daughter. The only other mention Crohns ever gets up this way is the annual fundraiser M & M does. Amounts to a little air time before the event, the event.. and then it fades from sight for another year. We aren't flying under the radar. We are buried beneath the freakin catacombs. Imagine if this website didn't exist! WOW!
 
I think it would take someone like the president of the United States or someone Big up in the UK to get Crohn's disease, then they would scurry for a cure and it would be made more public and known. This is sad, but it is true. Like I said, same thing happened with Polio. Everyone was either dying from it or becoming permanently crippled. They sat on it, but when President Franklin Roosevelt got it, researchers went into action and found vaccine against it pretty quickly. Unfortunately not quick enough since Roosevelt succumbed to it. Also, I hate that people are so quiet about this disease and other diseases due to them being embarrassing. There is nothing to be embarrassed about. It is a nasty disease and it needs attention. Just like Interstitial cystitis, which is even less known about that Crohn's disease, but yet many women have committed suicide over this debilitating disease. Dr. Kevorkian's last suicide patient was an IC patient. But yet you hear nothing about this disease which is becoming more and more prominent. More and more women are getting it. It also fits under the "embarrassing" disease as well.

I hope one day Crohns and these other debilitating diseases will get the publicity and funding they deserve.

Bonnie: Wow, so Crohns seems to be pretty common over there in Canada huh? Here I will be honest, I heard of the disease for the first time years ago when we were having some remodeling done in our home. The man that was working with us had it. He was telling my mom about it. My mom had a digestive disease that was very rare as well( meinetrier's disease). She was telling him about it and he told her about his Crohns. Then when my sons best friend was 16 years old he was dx with it. Other than that, I do not know anyone else with this disease. My dad, husband and in-laws and everyone I know have never even heard of it. I don't think it is that common here, or rather maybe it is not widely known except by doctors of course and the people that have it. I gotta say, I have actually ran into doctors who have never heard of Interstitial cystitis though. That is sad as hell.

No one can really compare one disease to another. They can effect each person differently. Cancer gets the research because it is deadly in a lot of cases. IN my opinion, there are worse things than dying. Some diseases can be worse than death. I still never could figure out why they have euthanasia for animals but not for people. I mean they will put an animal out of their suffering, but not a person. Go figure.....
 
nogutsnoglory said:
I think the key is that its rarely fatal unlike cancer and therefore doesn't generate the same enthusiasm. Also, breast cancer is very intimate and takes away from a woman's sense of self worth and I think that's why cancers gets the most attention.
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I'm not sure. I'm infertile and that has a massive impact on my sense of self, life and feelings about being a woman, but infertility doesn't seem all that talked about to me - it does get talked about, but not so much given how common it is, and, for me, it is without question the most cruel thing that any of my illnesses have caused me. An illness like PCOS (which my sister has) is extremely common and can really harm a woman's sense of self because it can cause male characteristics like facial hair growth, cosmetic issues like acne and weight gain which can really affect self esteem, and infertility, which can radically alter your life. But read any medical page about it and it's basically treated like no big deal, because it isn't actually dangerous to a woman's health. (Well, I suppose that depends how you define dangers to health, but it's definitely not fatal and doesn't really debilitate other than the cosmetic and fertility and menstrual issues.)

So I wouldn't say breast cancer's high status is necessarily due to either the fact that it is widespread or to its intimate nature - I think it's the combination of being potentially fatal and being widespread, but I guess some more random factors also come into play - e.g. outcomes of research, whether a publicity campaign happens to catch on, the types of people it affects, etc. etc.
 
If the incidence is... and let's take a conservative number for North America.. 1 in 300. And the population is 300,000,000... then there are approx. 1,000,000 a year in the US alone. Add in Canada.. another 100,000 per year. And, it is incurable. Folks like myself are the exception. (although I don't consider myself 'cured'.. just extremely fortunate).

So, for big pharma... this is a veritable unending gold mine. And we live so long, suffer so much... that we will 'swallow' whatever drug they toss at us, regardless of the cost, regardless of the side effects... so big pharma is perfectly content with the status quo. You won't see them pressuring the government to fund research into a cure or vaccine.

I love animals. I had a number of pets over the years, lived on a farm, even fostered the occasional overflow animal from local shelters. Here's the thing that grinds my gears. I see more ads to help animals than I do to help fight Crohns disease. Priorities are all messed up. I don't know... seems to me we 'Crohnies' are the forgetten, maybe deliberately so.
 
Ihurt said:
I think it would take someone like the president of the United States or someone Big up in the UK to get Crohn's disease, then they would scurry for a cure and it would be made more public and known. This is sad, but it is true. Like I said, same thing happened with Polio. Everyone was either dying from it or becoming permanently crippled. They sat on it, but when President Franklin Roosevelt got it, researchers went into action and found vaccine against it pretty quickly. Unfortunately not quick enough since Roosevelt succumbed to it. Also, I hate that people are so quiet about this disease and other diseases due to them being embarrassing. There is nothing to be embarrassed about. It is a nasty disease and it needs attention. Just like Interstitial cystitis, which is even less known about that Crohn's disease, but yet many women have committed suicide over this debilitating disease. Dr. Kevorkian's last suicide patient was an IC patient. But yet you hear nothing about this disease which is becoming more and more prominent. More and more women are getting it. It also fits under the "embarrassing" disease as well.

I hope one day Crohns and these other debilitating diseases will get the publicity and funding they deserve.

Bonnie: Wow, so Crohns seems to be pretty common over there in Canada huh? Here I will be honest, I heard of the disease for the first time years ago when we were having some remodeling done in our home. The man that was working with us had it. He was telling my mom about it. My mom had a digestive disease that was very rare as well( meinetrier's disease). She was telling him about it and he told her about his Crohns. Then when my sons best friend was 16 years old he was dx with it. Other than that, I do not know anyone else with this disease. My dad, husband and in-laws and everyone I know have never even heard of it. I don't think it is that common here, or rather maybe it is not widely known except by doctors of course and the people that have it. I gotta say, I have actually ran into doctors who have never heard of Interstitial cystitis though. That is sad as hell.

No one can really compare one disease to another. They can effect each person differently. Cancer gets the research because it is deadly in a lot of cases. IN my opinion, there are worse things than dying. Some diseases can be worse than death. I still never could figure out why they have euthanasia for animals but not for people. I mean they will put an animal out of their suffering, but not a person. Go figure.....
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A person is not an animal and a person has a soul and a spirit. It is up to God to decide our time to go, in my opinion. Which may or may not be correct. I just feel that comparing a person to an animal is kind of a disgrace and belittles what people are. It dehumanizes human life and starts a whole nother debate as to," can we kill babies after they are born for having handicaps" etc... There would be no end to it if we allow these practices to become legal. It may sound cruel, but keeping a human alive even in pain is not for us to decide. The whole argument is based on religious type beliefs and if you don't agree with me, I understand, but we must cherish life.:hug:
 
I am sorry, but an animal has a soul just like a person does. God created animals just as he did humans and other life forms out there. Who is to say one is more significant than the other, we are all living beings. Everyone should cherish life, but we have to look at things realistically. For example, my grandfather died of pancreatic cancer. He became sick back in 1972 and back then they were not able to diagnose this cancer so easily as they did not have the scans we do today.. Well since they did not know what was wrong with him they had to open him up and take a look. Well they found he was riddled with cancer. His heart stopped on the table and they brought him back, only for him to suffer an agonizing 9 months. I remember my mom telling us that when he was lying there suffering, he kept saying, Why, oh Why did they not just leave me go when my heart stopped on the table. Of course now you can actually sign forms of DNR ( do not resuscitate).

You are correct though, religion is the reason they do not offer humane ways to end suffering for people. I mean of course there would have to be laws in place if this were to happen. I believe they offer Humane Euthanasia in the Netherlands today. I know a friend of mine was telling me about this. It is not about whether a person cherishes life. I am sure tons of people cherished life before becoming seriously ill. But for people who have such severe illnesses that are unrelentingly debilitating, there comes a point where you have to look at the quality of life for the individual. I know I have told my husband that if I were ever in a accident where it left me paralyzed that there will be NO intervention( I do not wish to be hooked up to machines), I rather nature take it course. A person who has terminal cancer or an illness that is just so bad where there is No quality of life anymore and every measure to get well has been tried, I think they should have a way out for those people. It is an individual choice of course. I mean everyone has their own beliefs....














723crossroads said:
A person is not an animal and a person has a soul and a spirit. It is up to God to decide our time to go, in my opinion. Which may or may not be correct. I just feel that comparing a person to an animal is kind of a disgrace and belittles what people are. It dehumanizes human life and starts a whole nother debate as to," can we kill babies after they are born for having handicaps" etc... There would be no end to it if we allow these practices to become legal. It may sound cruel, but keeping a human alive even in pain is not for us to decide. The whole argument is based on religious type beliefs and if you don't agree with me, I understand, but we must cherish life.:hug:
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I agree animals have souls and should be treated with the utmost respect. I believe it was Ghandi who said a society will be judged by the way it treats its animals.

Lets not get off topic though. This is about IBD and its lack of recognition as compared to cancer and a bit of a debate as to the individual struggles that each disease presents.
 
I think the point is simple- no one wants to speak up. PERIOD
Crohn's is not something that is announced at work or school.
my son has multiple issues-
they talk to the class at the beginning of the year about some of them- BUT
not crohn's.
children can be cruel ( and some adults)
so until more of those ( 1/3 even) with the disease are willing to WALK or campaign to raise money and awareness then more will suffer in silence.

My son is only 9 and has been dealing with the evils of this disease for two years in Sept.
I dont ask him to speak out about it publicly ( friends/family know) since the emotional cost could be very high at his age.
IF he choses to later on his own we will stand by him.
He does the ccfa walk and wears the crohn's shirt around but he also wears "other" t shirts as well so no one pays that close of attention or realizes what crohn's means.
I think it is a personal decision since it makes a very private matter public.


Once or if more people talk about it ( I mean really talk about how the disease truly is)
then and only then will it get some respect.
 
since I am on a soapbox-
one more thing
It only takes ONE to make a change.
For each person willing to make that sacrifice and be that one
IBD will be one step closer to gaining awareness.
 
And a child shall lead them... However, putting the onus on a child to be a symbolic banner wearer for Crohns... I'm an overprotective old thing... I wouldn't be comfortable with that. When I was first diagnosed, I was mortified, ashamed... as if I'd done something wrong. Took me a while to get over that... to come out with my disease as it were. Up until that time, I used a 'beard' (wherever did I get that idea) as my avatar. That was some years back... and at the time, I expressed the opinion (my own humble) that... if we, the 'adult' members of this forum... presented as fictictious names with make believe avatars... then we couldn't put a real face to this disease. Some folks were of the opinion that ... well, for security reasons, personal safety concerns, even identity theft... they didn't want to participate. I understand that, makes sense to me. Of course, seeing some of those folks on Facebook, Myspace, Twitter... with links to their friends, family, etc., etc.. makes me shake my head at their objections. But some folks replaced cartoon avatars with real photos... some folks joined using their real name. It was a start... a small start. But it never really snowballed, never dominoed. I personally don't think we are going to stop being anonymous until we stop it ourselves.
Children, or the parents of children... that is a totally different situation. But us adults???
We need to stand up... make ourselves known... tell the world we exist... that we live!!!
 
Kev said:
So, for big pharma... this is a veritable unending gold mine. And we live so long, suffer so much... that we will 'swallow' whatever drug they toss at us, regardless of the cost, regardless of the side effects... so big pharma is perfectly content with the status quo. You won't see them pressuring the government to fund research into a cure or vaccine.

.
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I've seen this said so many times on this forum, but I always want to know, how does this fit with the NHS? Here in the UK we have pretty much the same treatment options for Crohn's as you have in the USA, we don't cure Crohn's here either, but doctors are under huge pressure here to reduce the cost of health care as much as possible. How does that fit? Does the UK just have to accept what works financially in the US - i.e. that the US, prioritising the pharmaceuticals, dictates what medications get developed and then the UK just has to accept them even though financially it makes no sense here? Do pharmaceuticals make money by making their products available to UK doctors, and so they aim to make treatment as expensive as possible and it just overrules the NHS's interest in keeping costs of healthcare low? I'm really curious if anyone knows the explanation for this.
 
Kev said:
I love animals. I had a number of pets over the years, lived on a farm, even fostered the occasional overflow animal from local shelters. Here's the thing that grinds my gears. I see more ads to help animals than I do to help fight Crohns disease. Priorities are all messed up. I don't know... seems to me we 'Crohnies' are the forgetten, maybe deliberately so.
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I agree that sometimes it seems absurd to me when people prioritise raising money for animals when there are people suffering and dying everywhere, even though I love animals, they're not people.

I wonder if perhaps those of us on this forum are more likely to have exceptionally bad cases of Crohn's? I've known a couple of people offline with Crohn's, and for one of them at least it hasn't been too big a deal. He was very sick before getting diagnosed, but then as soon as he got put on prednisone it basically took care of it and he lives symptom free and his only real worry is dealing with medication side effects.

If for many people Crohn's simply means taking some drugs and maybe getting diarrhoea quite a lot, then it would be easy to see why Crohn's doesn't get all that much attention despite being widespread. If those who end up having multiple surgeries and living in constant uncontrollable pain unable to eat are a minority - but the minority who's more likely to end up on this forum (probably because they're more likely to be stuck at home desperately seeking help and support for their condition) - maybe some of us on the forum see a need for Crohn's' visibility that the majority of Crohn's sufferers aren't so fussed about, as it's never occurred to them that Crohn's may be a horrible a condition that could be compared to cancer?
 
I don't come to this forum often, but I'm glad I saw this thread today, because this very subject has been on my mind a lot over the years. I've had Crohn's for 18 years and have some serious complications. I have wondered to myself if Crohn's was worse than cancer and have even wished at my darkest moments that I'd gotten a diagnosis of cancer when I was 17 instead of Crohn's. Please don't judge for those thoughts; I've seen the ravages of cancer as well. But Crohn's has affected nearly every aspect of my life since my diagnosis: my work, my relationships, friendships, daily living, etc. I generally don't dare to speak my thoughts to anyone for fear of being yelled at for thinking that way.
 
This thread has been very interesting to me. I often do compare my crohns to other ilnesses and cancer. The most "acceptable" comparison seems to be to diabetes. Both need to take meds daily and pay attention to what they eat and untreated can be fatal. This is what my shirink (who knew nothing of crohns) wold often do.. not realizing or wanting to that crohns also comes with pain and operations.

In my darkest moments I too have wished to trade my crohns to cancer. Atleast there would have been an end to it in cure or in death. And wiht my crohns death at times has been a wish. Every operation I wnt to I secretly wished something would go wrong and I just would not wake up.

Today I am feeling quite well and have for the last 5 years and right now the comparison to diabetes seems more approprite to me.

What annoys me with this cancer vrs crohns is exactly that what most have said.. the attention cancer gets. My aunt had breast cancer maybe 6-7 years ago. It was a hard experience to her and both her breast were removed. Durring her treatments she was doing yoga and pilates and all sort of hobbys. In my wors of days that would never had been possible.. getting out of bed was allready a ordeal. She was lucky and survived her cancer and is now healthy. I know she lives in fear of it coming back.. I dont know how likely that really would be. At the same time she strugled with her breast cancer my step-uncle diesd of intestinal cancer. To me this is partially of luck.. she had it he did not.
One thing that eats me (and my stepdad) up is when she comes to visit and starts up her "cancer survival" speach. Like she survived because she faught so hard. For me its undermining all the fighting I have done with my crohns for 20 years now. Like fighting it would cure me. And for my stepdad its hurtful because to him its like saying your brother did not fiht har enough and thats why he died. So to say I dont like the image that comes with cancer. This waving the pink flag proud and high.

Even still today 7 years or more later my American relatives (of my fathers side) will ask me how my aunt (my mothers side living in the US) is doing with her cancer. My reaction in my head is what cancer... she is cured of it. But they never ask me how I am doing with my Crohns.

So even if symptoms cannot be compared a comparison is there where two equally severe ilnesses dont get equal attention and care and knowlage.

Right now I am happy with my life and like somone here said its due to learning my life is what I make of it with the cards i was dealt. No use dreaming of what you wanted in life. Live with what you are given and you can be happy.
 
To me there is no comparison. Crohns is treatable as is cancer to a point and I emphasize point. Cancer in my opinion carries a higher death risk My oldest son had a Retinoblastoma when he was 6 months old this is a childhood form of cancer he's lucky to be alive there are other children that get this form of cancer that are not so lucky. I do however think this disease is just as debilitating. Cancer eats and consumes Ive had several family members die from Caner. My aunt died 2 years ago from a long battle of cancer while my other aunt which is her sister who has UC is still living and healthy or as healthy as one can be with UC.

Let me edit to say this is just my opinion
 
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OK, said this before (least I think I did... but I rarely listen to myself, so who knows) but ... the forum is here for US. Whether that be looking for answers, or for help, or for a sounding board. God, we at times have so little going for us, take advantage of this site. Speak your mind (when I do it, it is referred to as small talk.. go figure). Rant even. Cry occasionally. So don't be afraid to share. Together we are stronger than just our individual selves.

Comparing Crohns to Cancer... ???? It isn't a moot point. I think it denotes more how we see our... lot in life.. our life even. I mean... there have been some very dark days for me... I stared into the abyss. Felt like I was plummeting there, and no lifelines near me. So, I 'think' it is more a case of... how 'it' appears to us.. at any given time in life. Know what I mean? Do we see ourselves as living with our disease, or slowly dying from it? And, to me, the real piss off part is... (you can debate the pros/cons of having one versus the other for eternity).. Crohns doesn't command the respect Cancer does, and as a direct result... having Crohns doesn't receive the respect WE deserve. There is one area where Crohns surpasses Cancer... at least with Cancer, people respect the patient.
 
You are right Kev about that. Crohn's does not get the attention it deserves, nor do a lot of diseases out there. And doctors do not even treat patients like they would a person with cancer. I remember when my mom first got dx with terminal liver cancer. The doctor was bending over backwards trying to give my mom narcotics for pain, Practically pushing them at her even though my mom did not have much pain at the time and did not want them. Yet, you take a person with a chronic illness that is suffering beyond belief, Doctors will not readily give pain relief to these patients, which I think is just awful.











Kev said:
OK, said this before (least I think I did... but I rarely listen to myself, so who knows) but ... the forum is here for US. Whether that be looking for answers, or for help, or for a sounding board. God, we at times have so little going for us, take advantage of this site. Speak your mind (when I do it, it is referred to as small talk.. go figure). Rant even. Cry occasionally. So don't be afraid to share. Together we are stronger than just our individual selves.

Comparing Crohns to Cancer... ???? It isn't a moot point. I think it denotes more how we see our... lot in life.. our life even. I mean... there have been some very dark days for me... I stared into the abyss. Felt like I was plummeting there, and no lifelines near me. So, I 'think' it is more a case of... how 'it' appears to us.. at any given time in life. Know what I mean? Do we see ourselves as living with our disease, or slowly dying from it? And, to me, the real piss off part is... (you can debate the pros/cons of having one versus the other for eternity).. Crohns doesn't command the respect Cancer does, and as a direct result... having Crohns doesn't receive the respect WE deserve. There is one area where Crohns surpasses Cancer... at least with Cancer, people respect the patient.
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I would think Schizophrenia would be worse than Crohn's because it damages the mind in catastrophic ways.

I think the unpredictability of Crohn's and the fact that the medicines available often do not manage the conditions make it a very difficult disease to live with. The patient seems to have manage the symptoms as best they can. While in other conditions like HIV or MS (if caught early) the patient has effective medication to keep the condition in check for the most part and can manage their life very well.

For Cancer like other's have said there is a definite pathway of treatment that isn't available in Crohn's.

I am just learning about Crohn's but these are my observations.
 
Schizophrenia can also be managed very well with medication but one can say the same for many with ibd who are in remission for years with their medication. The truth is these diseases vary in intensity and don't fit in any cookie cutter mold.
 
Ihurt said:
You are right Kev about that. Crohn's does not get the attention it deserves, nor do a lot of diseases out there. And doctors do not even treat patients like they would a person with cancer. I remember when my mom first got dx with terminal liver cancer. The doctor was bending over backwards trying to give my mom narcotics for pain, Practically pushing them at her even though my mom did not have much pain at the time and did not want them. Yet, you take a person with a chronic illness that is suffering beyond belief, Doctors will not readily give pain relief to these patients, which I think is just awful.
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When this happens, it's almost always because the cancer is terminal. Getting addicted to and/or tolerant of pain meds isn't a priority when the illness is terminal. Or, the cancer is treatable, so, again, the time for which pain meds are needed has an end point. With Crohn's, a patient has to live with it for the rest of their life. They are likely to live a functioning life - work, do sports, have a social life or whatever. I know that's not the case for all of us, but most of us do have a normal life expectancy and are able to engage in something approaching a normal life. So not only to we want to minimise tolerance to pain meds - so we can use them effectively during acute flare-ups or after surgeries - most of us don't want to be so knocked out on pain meds that we can't do everyday things, such as safely driving a car.

Doctors should be treating the pain of a chronic illness (especially when it begins in a young person) differently than they treat the pain of a cancer patient. (Though again, cancer can vary hugely - some will continue engaging in everyday activities, some might not even need pain meds.) If a doctor immediately assumes someone with Crohn's cannot have pain that's as bad, physically, as someone with cancer - that's a problem, the severity of pain and its impact on quality of life needs to be recognised. But they should not be treating as they'd treat the pain of terminal cancer. Even if they recognise that a patient with Crohn's has severe pain, they have to think about the repercussions of giving a patient dangerous, addictive pain meds and whether this is sensible for pain that may need to be managed continuously for decades more of the patient's life.

I would think Schizophrenia would be worse than Crohn's because it damages the mind in catastrophic ways.

I think the unpredictability of Crohn's and the fact that the medicines available often do not manage the conditions make it a very difficult disease to live with. The patient seems to have manage the symptoms as best they can. While in other conditions like HIV or MS (if caught early) the patient has effective medication to keep the condition in check for the most part and can manage their life very well.

For Cancer like other's have said there is a definite pathway of treatment that isn't available in Crohn's.
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Schizophrenia has worse stigma, but I really think it depends on the individual case as to whether it's worse. I know very little about HIV, but MS can be absolutely devastating (and in some cases terminal) whether or not it's caught early. I've watched someone gradually lose all mobility, bowel and bladder control, speech, and finally mental capabilities from MS. She spent years in awful pain, knowing the illness was only ever going to get worse. She died in her fifties after over a decade of terrible illness and about a year being housebound. Definitely worse than Crohn's.
 
Unfortunately, there is no such thing as an absolute effective medication in any illness. Yes, there are medications out there, but for some people, they do not help them or they cannot take them due to the severity of side effects. Everyone is different. Bottom line is, each person with any disease or cancer is afflicted in individual ways. I had a friend I use to work with that got diagnosed with breast cancer, thankfully it was caught early. She did not suffer physically too much at all. But mentally it was horribly terrifying. I mean cancer is very, very scary and can be deadly in a lot of cases. So that is just as bad having that hang over your head. But you can also take a person with a chronic disease who suffers so much that to that person, life is just not worth living, I mean that person could just be in survival mode.

Back in the old days before medicine and heck, before there was even a name put on diseases( back when a person died, it was just blamed on consumption or natural causes), when a person got cancer, either their bodies fought it off, or they succumbed to it. There was no such thing as medicines and chemo, so suffering was usually short lived depending on the type of cancer or how bad it was. Also, I think it was pretty much the same with chronic illnesses, except I do not think there were as many cases of these orphan diseases that we deal with today( Crohn's, IC, Autoimmune issues, etc...). Back then things were more organic and in their natural state. Herbs were strong enough to fight off some of the nasty infections people use to get( not always though), and those people would just die. Nowadays there is all kinds of intervention( hospitals, antibiotics, medications, antivirals, vaccines etc...). These things can be both good and bad. Meaning that due to some of these interventions, well, all these diseases started popping up as a result. They invented penicillin which saved tons of lives. But doctors thought it the miracle drug and handed it out for everything from a cold to a tiny scratch on your toe! Well, over time the bacteria's have gotten resilient and strong and the penicillin that once was a life saver hardly works at all anymore. Herbs stopped working completely as they are not string enough anymore. People got greedy and wanted to have their crops grow abundantly and so they started cross breeding our crops and low and behold what did we get, a bunch of people having strange illnesses that were unexplained.

We started throwing pesticides in our crops to keep the bugs from eating them( they did not want any loss), so this way the crops remained bug free. Well people were ingesting all these pesticides. I mean pesticides Kill bugs! What good could come from a person ingesting a chemical that kills??

Anyhow, Sorry,I think I got off the beat and path here. Bottom line is, Each person who is sick, whether it be with cancer or a chronic illness, well, each one is fighting their own battle and who can say what is worse. For the person that just got diagnosed with cancer, nothing is worse to that person, nothing. They would likely give anything to have that cancer taken away. Just like a person who is fighting and struggling everyday living with a chronic disease, well nothing seems worse to that person either as they are indeed suffering. We are all dealt a deck of cards in life, some get lucky and seem to glide on through with not too many problems. But then some of us got a ****** hand dealt to us and we just have the play the game and take what comes and do the best we can with what we have. Do I think there should be more help and options for a person with a chronic illness?? YES, I DO. I think there needs to be more attention given to these disease and more money spent to research them. The more people out there that know about these diseases, the better chance of finding out the cause so there can be a possible cure..






Quote:I think the unpredictability of Crohn's and the fact that the medicines available often do not manage the conditions make it a very difficult disease to live with. The patient seems to have manage the symptoms as best they can. While in other conditions like HIV or MS (if caught early) the patient has effective medication to keep the condition in check for the most part and can manage their life very well.
 
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I think the stigma of HIV is worse than all of the diseases because unlike IBD where you have the ick factor and cancer the aww factor I think with HIV/AIDS there is a fear factor. Even though one cannot obtain HIV unless there is a transmission of bodily fluids I think there still is a lot of misunderstanding and fear surrounding that illness. Nobody is afraid of catching cancer but people are reluctant to shake a person with AIDS's hand even in today's and age. Even I knowing its impossible to get sick am uncomfortable with shaking hands with an HIV positive person and I feel awful but it scares me.
 
I have Crohn's for 11 yrs now had many treatments. They now want me off 6mp to go to remicade. I think all are bad but don't wish this on anyone! Have been told twice I had time to live so far still alive! As far I know you can die of causes from Crohn's. So Good Fight to all no matter what you have!!!!!!!!!!! P.S. I know when they do my blood work besides the normal to look for also is cancer. Like I said 11 years have pouch and never got better and always struggle and NO HELP from Doctors. Always bandaids
 
Ihurt, do you have any evidence that herbs used to work? Academic research or anything with solid evidence? Most early medicines that are no longer in use stopped being used because it was found they didn't work, or at least that something much more effective was found. I'd be really interested if you know of specific cases where herbs (or any other early remedy) had actually been working and then somehow stopped because diseases got stronger. But I've spent too long at university - I need academic research to convince me of something ;) , so if you've links to some books or papers on this I'd like to read them.
 
nogutsnoglory said:
I think the stigma of HIV is worse than all of the diseases because unlike IBD where you have the ick factor and cancer the aww factor I think with HIV/AIDS there is a fear factor. Even though one cannot obtain HIV unless there is a transmission of bodily fluids I think there still is a lot of misunderstanding and fear surrounding that illness. Nobody is afraid of catching cancer but people are reluctant to shake a person with AIDS's hand even in today's and age. Even I knowing its impossible to get sick am uncomfortable with shaking hands with an HIV positive person and I feel awful but it scares me.
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When I was at school, there was a poster on the wall in the classroom, with a picture of a child and the caption "I have AIDS, please hug me, I won't make you sick." Maybe my school was unusual in the amount of education we got on HIV/AIDS? I remember at age 11-12 we were taught about HIV/AIDS, not just in sex education, but also about the spread of the disease in Africa as a public health issue - I think it was part of our Social Education course.

This reminded me of the point raised earlier in this thread about how if an important figure - the US president or someone - got Crohn's it would get more publicity and a cure would be developed. Surely the fact that most of us on this forum live in First World, developed countries means our illness already gets a disproportionate amount of research and treatments? If a high profile person got Crohn's, even if it did lead to the development of a cure, who the cure would actually be made available to would still depend on where you live, just as the treatments and preventative measures for HIV and other treatable (sometimes curable) diseases are often not accessible in Third World nations.
 
Unxmas: I do not have literature to prove that herbs actually worked at one point. Back in the day herbs are what they used and obviously they helped a lot of people. For instance one herb that is known to help and has been proven to be effective still to this day is cannabis. Some of the medications that are used today are derived from some sort of herb or plant. Also, I know I use to take a herb called White Willow which is the herbal form of aspirin just without all the chemicals. It does work, not as strong, but it does help pain. The only draw back is that, like aspirin, it can cause the whole GI upset and bleeding as well so I can no longer take that. Back in the day when drug stores first came out with the fountains, they were for medicinal purposes. My grandfather said when you were not feeling good( headache, feeling sick), you would go to the drug store and get a coke, which contained the herb cocaine to get rid of the pain. This worked very well for pain. Bad thing was that it started being abused and was eliminated. BUT, derivatives of cocaine were still being used in some prescription drugs. I know the History channel had a whole documentary on how the fountains originated in the drug stores.

As far as whether drugs were invented because herbs did not work as well, or because the bacteria's just got stronger, that is hard to actually prove. I mean those herbs must have worked to a certain extent otherwise it would have died out, it would not have been passed along through the generations. No doubt, people did suffer with illness back in the day. I mean they had their pain relievers ( usually alcohol, they would get the person so drunk they had no pain) or they used the potent herbs like coke and cannabis and whatever else they used. But I would think that now with all the antibiotic resistant bacteria there are out there, well this is likely why they started inventing more Pharmaceuticals. The herbs just were not cutting it anymore.








UnXmas said:
Ihurt, do you have any evidence that herbs used to work? Academic research or anything with solid evidence? Most early medicines that are no longer in use stopped being used because it was found they didn't work, or at least that something much more effective was found. I'd be really interested if you know of specific cases where herbs (or any other early remedy) had actually been working and then somehow stopped because diseases got stronger. But I've spent too long at university - I need academic research to convince me of something ;) , so if you've links to some books or papers on this I'd like to read them.
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Ok, no problem. :) I've heard about aspirin being developed from herbs, and of course cocaine being used medicinally. I think I've come to think of "herbs" as referring to alternative medicines that perhaps haven't ever gone through trials to determine whether they really work, but of course you're right - that isn't always the case and some remedies that have been around a long time are still being used or have been stopped because some of their other effects were very strong but they were being misused. My mum was telling me that she went on a school trip as a child and got sick, and they gave her morphine as you could just buy it back then as a liquid medicine, without a prescription and without even needing to see a doctor!
 
Just tossing my two cents in here.

I think folks are probably spot-on about IBD failing to get due recognition as a serious, chronic, debilitating and potentially incapacitating disease.

That said ... yesterday, I had a colonoscopy to conclusively rule out Crohn's. My doc didn't find Crohn's ... but he did find a polyp.

Rightly or wrongly, I think I'd rather he found Crohn's than the polyp :-/.
 
Unxmas: You know, My grandmother and my mom also said there use to be a drug they could just get over the counter for stomach pain. I don't remember what it was called, but it had some pretty potent stuff in it( I think it was like morphine, but not sure). It was a white liquid. My mom said they took it off the shelves long ago though. But she said it really use to work well. My mom suffered digestive issues a lot so she was disappointed they took that stuff off the market. She said it worked very well. I remember her telling me the stuff they have nowadays is so watered down and hardly helped...
 
Why would you rather your doctor have found crohns than a polyp???? Polyps are very very common and usually benign? Why would you rather have the doctor have found a devastating disease??? Sorry, I am confused.....








BureaucraticNightmare said:
Just tossing my two cents in here.

I think folks are probably spot-on about IBD failing to get due recognition as a serious, chronic, debilitating and potentially incapacitating disease.

That said ... yesterday, I had a colonoscopy to conclusively rule out Crohn's. My doc didn't find Crohn's ... but he did find a polyp.

Rightly or wrongly, I think I'd rather he found Crohn's than the polyp :-/.
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Once the polyp is removed that's the end of it.....not so with Crohn's-----
Each colonoscopy has resulted in removal of polyps which would have progressed to cancer had they not been removed., in my case.
Too bad the crohn's could not have been eliminated at the same time.!
Has your doctor referred the polyp to pathology for analysis. Were you given the results?
It is likely you will be given future colonoscopies to check for any new polyps.
Opinion has it that a polyp may take ten years to become malignant.,allowing space between scopes.
Hope your ulcers heal quickly.
Feel better soon
Hugs and best wishes Trysha
 
I know my MIL had a colonoscopy 2 years ago and they found a polyp as well. She will Not get another colonoscopy though as the risks are too high, especially in the elderly. There is more of a chance of intestinal perforation. She said her doctor told her that colon polyps grow VERY slowly and that most never would amount to anything anyhow even if they were left alone. Of course, it is wise to remove them if they are found. Also if there is a history of colon cancer in the family, then it is good to be checked.
 
Ihurt, Trysh --

You're right that polyps are common -- but they're common (about 1 in 3 patients) in people older than 50. When you're 25 (edited to add: and you don't also have some form of IBD), any kind of polyp is quite unusual. A while back, before my scope, I remember my doctor saying that given my negative CT, there was about a 10% chance he'd find evidence of Crohn's or UC with a colonoscopy -- and that if neither of these were present, odds were next to nil that he'd find anything else at all.

I say I'd rather have found Crohn's because it's something a good gastroenterologist sees rather frequently. The incidence of Crohn's in your 20s is high enough that there's a decent body of evidence to support various treatments and prognoses. Plus, there's a robust online support community and quite a bit of research available for self-education.

With a polyp, it's not so clear. Hopefully it's nothing, but I think I need to stay away from web research for now because the only thing I can find about polyps in young adults is a problem that's linked to a high probability of developing colon cancer and an increased risk of other cancers.

I'm praying it's just a weird ideopathic thing!! And I wish everyone the best -- I have several close friends with IBD and wouldn't wish the difficulty they struggle with, especially during flares, on anyone!
 
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You are correct, that colon polyps are more common in older adults, but they can happen to anyone, anytime. I have had polyps in my bladder! I am only 38 years old. Polyps can happen in any organ really. Some say they are from irritation or inflammation of some sort. Also diet can attribute to these as well. I mean how big was your polyp? Maybe it was just starting. I would not worry to awful much over it. I am sure your doctor sent it for pathology right? I think some people are more apt to get polyps than others...










BureaucraticNightmare said:
Ihurt, Trysh --

You're right that polyps are common -- but they're common (about 1 in 3 patients) in people older than 50. When you're 25 (edited to add: and you don't also have some form of IBD), any kind of polyp is quite unusual. A while back, before my scope, I remember my doctor saying that given my negative CT, there was about a 10% chance he'd find evidence of Crohn's or UC with a colonoscopy -- and that if neither of these were present, odds were next to nil that he'd find anything else at all.

I say I'd rather have found Crohn's because it's something a good gastroenterologist sees rather frequently. The incidence of Crohn's in your 20s is high enough that there's a decent body of evidence to support various treatments and prognoses. Plus, there's a robust online support community and quite a bit of research available for self-education.

With a polyp, it's not so clear. Hopefully it's nothing, but I think I need to stay away from web research for now because the only thing I can find about polyps in young adults is a problem that's linked to a high probability of developing colon cancer and an increased risk of other cancers.

I'm praying it's just a weird ideopathic thing!! And I wish everyone the best -- I have several close friends with IBD and wouldn't wish the difficulty they struggle with, especially during flares, on anyone!
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Ihurt said:
You are correct, that colon polyps are more common in older adults, but they can happen to anyone, anytime. I have had polyps in my bladder! I am only 38 years old. Polyps can happen in any organ really. Some say they are from irritation or inflammation of some sort. Also diet can attribute to these as well. I mean how big was your polyp? Maybe it was just starting. I would not worry to awful much over it. I am sure your doctor sent it for pathology right? I think some people are more apt to get polyps than others...
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I hope you're right! My polyp was a small sessile one, just 3mm -- and it's being analyzed now along with some other tissue samples to make sure there's nothing weird going on that couldn't be seen just with the scope.

I never smoked heavily (was a social smoker during college), but I did drink extremely heavily until I stopped completely about 14 months ago, so perhaps the alcohol's to blame? Other than that, I have super low cholesterol, a rather healthy diet, and am quite active. No history of colon cancer (or much of any other cancer) in the family, either...

It's probably nothing, and I'll be very relieved if that's the case, but it's still kind of frightening :-/ -- like, what if I didn't pay a little too much attention to my bm's? I'd never have noticed the blood, might've waited until the usual age 50 for my first colonoscopy, and if this one was 3mm now ... what could have happened in the next 25 years?!?!

I just wish I could find a bit more information on these things -- but for now, I think you're right. Best not to stress too much. I'm just glad I got that sucker cut out!
 
Yeah, when they tell you they found something... and you have to wait for the biopsy results... I mean, sh.... eeesh. In my case, it was pre-cancerous. And, if the protocol is similar there, they did random tissue biopsies around it... and in my case, those came back clear. Weathering the initial shock... the seeming... 'unfairness' of it. First Crohns, then the other big "C" jumps out of the woodwork... or the colon. I was very fortunate. The issue I'd run into with the AZA.. going toxic on it.. placed my doc on guard. So she was looking for it.. and we'd started routine annual scopes.. And, sure enough, voila!. I have undergone 4 semi-annual scopes for the 1st two years, and now I've ramped up to annual scopes. So far, so good. So, you aren't alone. It is a frightening experience, so I commisserate. But, worst case scenario, it is highly survivable if caught in time, and it seems you are ahead of the game. Strange how a bad thing can turn into a good one.
 
BureaucraticNightmare - I completely understand hoping for Crohn's in that context. But polyps can be benign, I really hope that's the case for you, and monitoring with regular colonoscopies (if necessary) can make a big difference in detecting any problems right away should any arise.

Ihurt - usually colonoscopies are safe, the chances of perforation or some other complication of that severity are very small. For anyone with a family history of bowel cancer (and perhaps other cancers - I seem to recall that a family history of one kind can be linked with a higher risk of other kinds) or certain other bowel conditions, the benefits of a colonoscopy can outweigh the potential risks. Perhaps your mother in law had unusual circumstances that made it more risky for her, but for the majority of people (people on this forum in particular!) regular colonoscopies are a good idea.
 
My dd had a polp found on her colonscopy at only 17 years of age. The wait for results is the worst.
 
Unxmas: My gastroenterologist told me that it is a good idea for everyone over 50 to at least have a colonoscopy. He did say it is more important for those with a family history of colon cancer to have it done every 5 to 10 years after age 50, so yes in that case the benefits of the test outweigh the risks. But actually as you get older the chance of having a perforation during a colonoscopy increases. When you get older, your intestines become weaker naturally and are more risk for a perforation( this is what the GI told me). I was worried when I had to go through my colonoscopy and I asked him to be honest with me. He said that perforations happen all the time, they are just not openly talked about. He also did say that for most people everything goes smoothly with no issues though. But it does happen. My MIL did get a colonoscopy, but she says her doctor said if you have one done at age 65 or older and it is fine you really don't need another one unless of course you are having issues or have crohns or UC that needs to be monitored.












 
nogutsnoglory said:
I have a feed that shows me articles on crohns and this one from a local newspaper op-ed called "Crohn’s: Ranked right next to cancer" caught my attention in light of our discussion here.

Take a read. I couldn't agree more. http://www.crestonnewsadvertiser.com/2013/09/04/crohns-ranked-right-next-to-cancer/ck2ev0i/
Click to expand...

Thanks for the link. It does sound like this was a very extreme case of Crohn's though - I wouldn't want everyone on this forum to worry they'll end up that bad, because a lot won't. I know you also have a very bad case, though, nogutsnoglory, and whilst people shouldn't fear the worst, at the same time it's important for people - people in general, not just those with Crohn's - to know how bad it can get.

I know it's not exactly on-topic, but what also struck me on that webpage was the mention of keeping an ostomy hidden "to maintain pride". It's awful that so much of the pain of this disease comes from the knowing that so many aspects of it are not socially acceptable - which seems like it should be easier to rectify than the physical pains, but actually could be the hardest thing to change. Perhaps that really is relevant to the thread topic, then; ostomies have to be hidden - though I'd imagine that goes for ostomies that result from cancer as much as ostomies that result from Crohn's.
 
I think the educational component needs to emphasize that like all diseases they run along a spectrum from mild to severe. There will be those with crohns who just need to avoid a few foods and otherwise get by fine while others can't stay out of the hospital and require TPN and countless surgeries and medications.

I think the sense of shame is critical to the discussion because it doesn't factor in as much in some other diseases. Breast and testicular cancer would also be ones that can bring shame to a person but IBD does have so many socially unacceptable topics.
 
UnXmas said:
Thanks for the link. It does sound like this was a very extreme case of Crohn's though - I wouldn't want everyone on this forum to worry they'll end up that bad, because a lot won't. I know you also have a very bad case, though, nogutsnoglory, and whilst people shouldn't fear the worst, at the same time it's important for people - people in general, not just those with Crohn's - to know how bad it can get.
Click to expand...

To me that sort of is the problem. Most people think all crohns is is a little stomach cramp now and then and a diet that will controll it. Maybe a daily medication. They dont realize it can be as bad as cancer. If you say to someone you have cancer people take you seriously. If you say you have crohns you get advise to drink blueberry juice and eat oatmeal for breakfast (the two fundaments of a diet here in Finland it seems.. they will cure any stomach illness). Bringin us back to the matter of respect that crohns does not get and cancer does.

I wish it was more known that the sevirenes of crohns can wary greatly. If you cant make it to work cus of crohns your collegues (if they know what you have) will think you are faking it.
 
You are so right. Another thing is that I notice, is that if you are able to walk and talk and you look ok physically, then you cannot be that sick!! I know when I was stricken with the disease Interstitial Cystitis of the bladder, I remember a neighbor asking me why she did not see me as much as she use to out and about. I told her about being diagnosed with IC and my other issues. Her reply was " oh, just drink some cranberry juice, you will be fine!". I mean it was obvious this lady knew NOTHING about this disease. I think with Crohns it is the same way, if you look ok on the outside, people think you are not that sick. My best friend is also battling chronic illness and just went on disability because she could no longer work. Her own family member( sister) told her in these words " sorry, but someone as sick as you claim to be for that long would be dead by now"! Total utter ignorance! It makes me so sick that people can be so ignorant and have such a lack of knowledge. I mean I would love to tell these people, Please educate yourself before you open your mouth!!! Hopefully one day Crohns disease and other debilitating diseases will get more attention and be more widely known about....








sanni said:
To me that sort of is the problem. Most people think all crohns is is a little stomach cramp now and then and a diet that will controll it. Maybe a daily medication. They dont realize it can be as bad as cancer. If you say to someone you have cancer people take you seriously. If you say you have crohns you get advise to drink blueberry juice and eat oatmeal for breakfast (the two fundaments of a diet here in Finland it seems.. they will cure any stomach illness). Bringin us back to the matter of respect that crohns does not get and cancer does.

I wish it was more known that the sevirenes of crohns can wary greatly. If you cant make it to work cus of crohns your collegues (if they know what you have) will think you are faking it.
Click to expand...
 
Interesting viewpoint:

COMEDIAN Jennifer Saunders has hit out at cancer survivors who wear the disease as a badge.

The British comedian, 55, was diagnosed with breast cancer in 2009 but kept her illness and treatment a secret until she was pictured at a party without her blonde wig.

The Absolutely Fabulous star received the all-clear in 2010 but said she was attacked by some former sufferers for suggesting she was "free" from the disease after she revealed her regrown hair at a party.

"People were writing, 'How dare you say that! You're never free of cancer!'" she told The Times Magazine.
"And I thought, 'No, actually I am free of cancer now'."

Asked if she believed some people keep wearing cancer like a badge, she responded: "For ever - and I'll give you why.

"Because it is the job you don't have to work for.
"You suddenly get so much attention, and if you're not used to that, I bet it can sway you a little bit.
"I'm used to it. My job gives me the attention I would otherwise crave.
"They must be so pissed off when their hair grows back. And you think, 'Oh, come on, cancer is so common now'.

The comedian and mother of three, who received chemotherapy and radiotherapy after doctors found a number of malignant lumps, said she never worried she would die from the disease because "they told me I wasn't going to".

Saunders, from Richmond in west London, has previously made light of her illness and joked about her "lovely pert new bosoms" when she spoke out about it for the first time.

But her husband Ade Edmondson has described difficulties endured by those with cancer and said the ordeal should not be referred to as a "battle".
"It's not a great three-part TV drama full of moments. It's a long grind, like a slow car crash that will last five years and then, hopefully, we'll get out," he said.

Read more: http://www.news.com.au/entertainmen...et/story-e6frfmqi-1226729576537#ixzz2gJdsuKEU
Click to expand...
 
I know someone like that Dusty. They are a cancer survivor for many years but also an attention seeker. They are full of cancer paraphanelia like buttons and shirts and want to talk about cancer constantly. Perhaps it's how they cope but I think a lot of it is for attention.
 
I figure... whether it is Cancer or Crohns, a diagnosis like that changes a person. Some it changes for the worse, others for the better... but I think the majority of us end up with a little of both. For instance, my diagnosis opened me up like I never would have thought possible. Your typical male, a man of few words (yeah, I know, EVERYONE here wants that guy back)... stoic... raised with some outdated notions of propritey, ettiquette... only speak when spoken to... if you can't say something nice, don't say anything at all... keep a stiff upper lip... all that claptrap from my grandmothers childhood in England. Now... I'm here constantly.. sticking my nose in, trying to help, and determined to get the message out about LDN to those who don't know what it is. Outside the Crohns Kingdom, I don't talk about it at every given opportunity.. but if the subject (Crohns or health in general) comes up, I don't shy away from it. I'm not the man I was when I first got ill... and the very thought of having it made me feel ashamed.

Now, as a child, my mom got very ill... and battled health issues all of her life. I believe she spent as much time (if not more) hospitalized than home.. but that may be just my impression. I do know that... she got to a stage where it was literally all she talked about. Some of it was attention... seeking (after a while, it didn't get her attention, just the opposite).. some of it was ... conditioning. Doctors, nurses, etc., trained her to talk about her health... And some of it was habit. But a lot of it was just... this was her sole experience. You know what I mean? You get to a point where the only places, the only things you have to talk about are health, health related, what else do you know. So, sure... there are folks who milk things... maybe they always wanted to be the center of attention... and cancer/Crohns is their reason, excuse, or perhaps AFTER the disease they feel so damaged, so... lessened by it... that they feel it is the only thing about themselves worth talking about. I hope that is the case.. with the real survivors.

As for Cancer vs Crohns... I've seen several cases in the news where someone claimed they had cancer... which turned out to be a falsehood. As far as I know, there has only been one case where someone claimed they had Crohns when they didn't, and that was here. I personally hope that the majority of folks who have really had either really aren't given to being attention seekers. That would divert folks attention from me, wouldn't it?
 
Very well put Kev.

I think the main thing is not to be a victim.
Whether is IBD or cancer or any disease.
Don't be a victim.

As a mom, all I want to do for my girl is teach her to succeed.
She might have things different but I don't have to make her different.

HUGS
 

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