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Poppysocks

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Anyone else hate using the "Crohns" or "Colitis" label when talking about your illness? I've grown to hate it. And normally if I am ever describing my illness to somebody (which is rare), I will usually just say "chronic inflammation" or "intestinal inflammation".

I just don't like the fact that there are other people out there, that are diagnosed with Crohns, that are on the weakest of medications and go about life fine. There are people diagnosed with Crohns that can consistently have normal BM's and go once or twice a day. UM, YOU DON'T HAVE WHAT I HAVE, NOT EVEN CLOSE.

Not to mention I've heard from a few psychologists that once you are labeled, YOU BECOME THAT LABEL. I've always thought about this, that maybe a lot of this disease is "in my head", but that mindset is quickly erased when colonoscopies are performed and ulcerations are found all throughout my colon LOL, and you lose about 25 lbs in a months time, and you need to consistently be on drugs to literally stay alive.

Plus why do we feel a need we have to label EVERYTHING??? We all have different symptoms, we all are effected different, we all experience different symptoms.

Sorry for the weird thread just had to get some thoughts out of my head.
 
Nope I used to feel that way when I was young and early dx'd. Now I just say I have Crohns and no one knows what it is and if they want to know I tell them, most don't. If they step away, then I KNOW they have no clue. I don't profess to know everyone else's disease but just being compassionate rather than being ignorant helps me cope.

BTW venting is aloud lol. ;)
 
No this is a good thread. Whenever people ask after Meg, I don't say, "Crohns" anymore just that her intestines were inflamed as her appendix was and the poorly part right next to where her appendix was has been removed and now she's doing great. I was usually met with a blank look when I said, "Crohns Disease." Yes it has a name but everyone is different. A friend said her friend with Crohn's Disease was on the loo every couple of hours and that Meg must be. Actually Meg has never had any problems with bowel movements at all ever! She didn't quite get that.
 
I'm the opposite. For me, its a relief to have a name for everything other than being labeled a head case.

Well, except with the insurance company... that's where the label SUCKS!

p.s. Keep venting! I don't mean to squash the intent of this thread!
 
Personally I don't have a problem with labels. Maybe working in the health field all my life has something to do with it. Labels allow me to know what to expect in a general way but I'm probably a bit biased in my way of thinking. ;)

Dusty. :)
 
This IS a great thread. Yes, you're given a label and it's hard to move past that. If a kid in your class had a serious illness in second grade, chances are you can't look at their picture on Facebook without recalling the illness. I agree that everything runs on a continuum and that it can be hard to be lumped in with everyone else when your symptoms are dramatically different from the norm, or from the single example that someone else is thinking of. But, I think the labels do serve a purpose in that they are little aids to thinking (schemas) -- i.e., a physician can diagnose Crohn's and understand that inflammation is the major factor, but will also know to be aware of possible extraintestinal manifestations. If we remove labels, the physician might not have that mental guide to help with monitoring. Everyone's different, but most people with Crohn's will have some things in common with most others with Crohn's, and other things in common with a smaller number of people with Crohn's. Labels help us know what to watch for, in my view.

But in talking with friends who might have little or no medical knowledge -- yeah, I can see not wanting to use the label. I know that my mom describes my Crohn's to people at our home church as inflammation of the GI tract, because she's aware that many will not know about the disease. On the other hand, I'd never think to describe it to my set of friends as anything BUT Crohn's because my friends all either know what it is or have Googled to learn about it. In this way, the label has given those who were not intially "in the know" a way to learn about it. It's more precise to Google Crohn's than to Google "inflammation of GI tract."

The labels that I don't like are "patient" and "sufferer." More respectful, according to the literature, is "person who has Crohn's." This helps separate the person from the disease and it reminds people that the individual isn't just a disease. And, not everyone with Crohn's suffers from it every minute of every day. Not to mention, if you are not a physician or nurse directly involved in my care, I'm Not Your Patient.

Personally, I'd hesitate to remove the label of Crohn's entirely because it does help with classification and organization, but I accept this label knowing that, increasingly, researchers and physicians understand that illness and disease -- and health -- lies on a continuum. Knowing that the people in charge of my care understand this makes me feel more comfortable about taking on the Crohn's label.
 
I don't necessarily have a problem with labels. It's the fact that people tend to think we all fit into this specific mold that's associated with said label. It's just like the saying, "you can't judge a book by it's cover." We are all individuals and each and every one of us are effected differently by certain illnesses. Peolple tend to make assumptions about others as well. My former employer always pointed out that when you assume, you make an ass out of u and me. I have learned to not pass judgement, nor make assumptions about others. Everyone has their own story. You know what I mean.
 
no i usually dont care to talk about it unless its someone i know well and trust. I generally find that when you tell me someone you have crohns you get that pitty "ooh im so sorry" or something else like that. I really dont need or want that attention.

Its kind of insulting though to say you dont like someone like me who has a mild version of crohns, im sorry you have a harder time with it than I do, but i dont see why you have to be angry with me. I still deal with the pain, the bleeding, the fatigue, the weight loss and the colonoscopys. Ive had problems my entire life with pain/weight loss and trips to the hospital with no idea what is wrong, its at least nice to be able to know what the problem is.

Im sure you are just upset and frustrated so i dont take it personally.
 
No problem with labels here. When I was first dx I didn't even know what crohn's was. I didn't have a clue. Waiting for my bx results I was so nervous it was colon cancer. I was happy to hear it was crohn's and not cancer. I have had the opportunity to teach others who were as clueless as I was in the beginning.
 
I've got the opposite problem - being undiagnosed, it's difficult to explain to people what I do have, since I don't have a name for it! So I either tend to not tell people I'm sick, or I am vague and say I'm having some stomach issues. I wish I had a label so I could say for sure to people what is wrong with me!
 
I guess I'm just confused by this thread. How is a disease a label? It's not like being labeled emo or whatever (not that there's a problem with emo, just using it as an example). I don't see diseases as being lables and I don't feel the need to compare my disease to someone elses' whether they have the same illness as me or not.

Like you said Poppysocks, we all experience different symptoms and we're all affected by them differently. Our severity of the disease is different from person to person so just because someone's symptoms aren't as bad as yours doesn't mean that they don't have what you have. You both have Crohns disease, yours is just more severe. If people don't get that, then that's their problem.
 
CrabbyRelish said:
It's not like being labeled emo or whatever (not that there's a problem with emo, just using it as an example).
Click to expand...

I disagree, there's a huge problem with being emo.

But back to the topic at hand. I have no problem with saying I have UC, I usually talk openly about it. However if it's with people that I'm not particularly familiar with I just say I have stomach issues or problems with my digestive system. If I'm refusing food because it, I'll often refer to it being a hardware incompatibility.
 
-jayson- said:
Its kind of insulting though to say you dont like someone like me who has a mild version of crohns, im sorry you have a harder time with it than I do, but i dont see why you have to be angry with me. I still deal with the pain, the bleeding, the fatigue, the weight loss and the colonoscopys. Ive had problems my entire life with pain/weight loss and trips to the hospital with no idea what is wrong, its at least nice to be able to know what the problem is.

Im sure you are just upset and frustrated so i dont take it personally.
Click to expand...

You took the words out of my mouth Jayson. People with milder crohn's or crohn's in a different part of the intestines like me still suffer from this disease, just in a different way than others do. We still have all the pain and the weight loss, and it still controls our lives as well, just not as bad as yours does.

I still sympathize a lot with you and I know I don't completely understand how crohns inhibits you from living your life, but please try to have sympathy for the rest of us who also have this disease.

Much love :)
 
I happily take my label of moderate to severe crohn's. It would be especially nice if I could take that label of moderate to severe crohn's so that one of these younger ones in this thread can keep their mild crohn's label and that their disease always stays mild. I'd happily take them all so that they could have a normal life. I'm 51 and had lots of good years. These younger ones deserve the same.

I'm not much on labels cuz frankly I could give a rats hind end what anyone labels me. You either get me or not. If I choose to tell someone I have crohn's and they ask what that means I'm blunt and honest.

I never dismiss another's severity or lack there of. We're all chronically ill. There's no cure. We get sick, we take drugs, we get better, we get sick, we take drugs, we get better. We have surgeries, we go to the ER, we stay in the hospital. It's what we do. It's our attitude towards what we do that makes the difference on how we feel. We all get down at times. I throw regular pity parties for myself whenever I need. I whine, cry and become very unpleasant. But I never lose my compassion for what others are going through... No matter the severity.

It's just the way I am.

Ann
 
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I just wish the doc who pinned down this stuff all those years ago had been blessed with a nicer-sounding name than 'Crohn'. ;)
 
Christy said:
I just wish the doc who pinned down this stuff all those years ago had been blessed with a nicer-sounding name than 'Crohn'. ;)
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I don't even understand why would you want your name forever tied to a chronic debilitating illness of the intestines which consists of symptoms such as frequent urges to go to the bathroom, bloody and watery diarrhea, and overall just feeling like crap all the time. I wouldn't want my name tied to anything like that.
 
Forever fame and fortune to "discover" a disease and put your name on it. However, I certainly wouldn't want my name forever tied to something like herpes or syphillis!
 
-jayson- said:
no i usually dont care to talk about it unless its someone i know well and trust. I generally find that when you tell me someone you have crohns you get that pitty "ooh im so sorry" or something else like that. I really dont need or want that attention.

Its kind of insulting though to say you dont like someone like me who has a mild version of crohns, im sorry you have a harder time with it than I do, but i dont see why you have to be angry with me. I still deal with the pain, the bleeding, the fatigue, the weight loss and the colonoscopys. Ive had problems my entire life with pain/weight loss and trips to the hospital with no idea what is wrong, its at least nice to be able to know what the problem is.

Im sure you are just upset and frustrated so i dont take it personally.
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I am frustrated, didn't mean to insult anyone, those were not my intentions. I'm angry with the ambiguity of the Crohns label, not you personally. I understand why you'd take it that way though my post wasn't very explicit.
 
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2thFairy said:
Forever fame and fortune to "discover" a disease and put your name on it. However, I certainly wouldn't want my name forever tied to something like herpes or syphillis!
Click to expand...

I'm sure the parents of Edward Herpes were very proud of him when he discovered it.
 
I believe that putting a name on it gives patient's more control of their condition and from that they can deal with it in whatever way they wish. Before any of us were diagnosed (or not in some cases) there is a real desire to know what is wrong. I can only imagine that there is nothing worse than being left in limbo, and personally I was relieved to be diagnosed with CD than some other illness's out there.

People are ignorant as to what crohn's is (like many many other illnesses) and it's up to us to educate them and change their perception of the disease, we are learning all the time and it's forums like this that enables us to see the wide diversity that IBD is and how different people deal with it.

I can sympathise with the younger members though as it's not nice to be 'labelled' with anything at that age as there is enough other pressures of growing up.
 
I guess if you want to say having "mild" crohn's as opposed to "severe" crohn's shouldn't have the same label, you would be saying that about any disease. Everyone suffers differently with each different disease. Two people with cancer, or lupus or anything really all have different degrees of severity. I understand you are frustrated, but it isn't a fair thing to say. Who's to say that 6 months from now one of these people with "mild" crohn's won't get into a huge flare up and be just as sick as you. I don't wish that on anyone. So yeah, i guess you could say that any disease has its ambiguity with each of their labels.

I personally am happy for those people who have a mild case and are not sick all of the time. For the last 13 years I've been very very sick for just about the whole time. I wouldn't wish it on anyone, and I wish I could be one of those with a mild case.
 
Poppysocks said:
I'm angry with the ambiguity of the Crohns label, not you personally.
Click to expand...

I'm still confused though. How is Crohn's disease a "label?" It's a disease and that's what its called. The severity is irrelevant as its still the same disease.
 
CrabbyRelish said:
I'm still confused though. How is Crohn's disease a "label?" It's a disease and that's what its called. The severity is irrelevant as its still the same disease.
Click to expand...
It's a label because you are encapsulating a group of people with a broad range of debilitating symptoms, and grouping them together as all having one illness, when the symptoms vary greatly between everyone. This is precisely the reason that drugs/diets don't work for everyone, we all have different biochemistries and symptoms, none of us are the same. If I say I have Crohns what does that mean? One person with Crohns may have ulcerations and skin tags in their colon/rectum, while another may have stricture/fistulas/fissures all throughout their small intestine. One may exhibit vomiting and abdominal pain, while another may show signs of bleeding and weightloss.

What is the problem with just explaining what you have? Why can't you just say, "I have inflammation throughout my GI tract", or "I have fistulas and ulcers all throughout my intestine". Why is there such a need to give everything a name? It's not just diseases, we label EVERYTHING.

What is the criteria to even be diagnosed with Crohns in the first place? Is there some standard doctors define it as? Or do they just see the inflammation and hear the patient's symptoms and say "ok you have crohns". I'm probably just going insane but I just don't like having anything with a negative connotation such as Crohns attached to me.

I understand using these labels in medicine is beneficial because it gives the doctor a "general idea" of what someone has so they can treat the symptoms. But in normal colloquy I just don't like saying "Crohns".

I know I just went pretty deep but it's good to think about.
 
VintageAnn said:
I happily take my label of moderate to severe crohn's. It would be especially nice if I could take that label of moderate to severe crohn's so that one of these younger ones in this thread can keep their mild crohn's label and that their disease always stays mild. I'd happily take them all so that they could have a normal life. I'm 51 and had lots of good years. These younger ones deserve the same.

I'm not much on labels cuz frankly I could give a rats hind end what anyone labels me. You either get me or not. If I choose to tell someone I have crohn's and they ask what that means I'm blunt and honest.

I never dismiss another's severity or lack there of. We're all chronically ill. There's no cure. We get sick, we take drugs, we get better, we get sick, we take drugs, we get better. We have surgeries, we go to the ER, we stay in the hospital. It's what we do. It's our attitude towards what we do that makes the difference on how we feel. We all get down at times. I throw regular pity parties for myself whenever I need. I whine, cry and become very unpleasant. But I never lose my compassion for what others are going through... No matter the severity.

It's just the way I am.

Ann
Click to expand...

Wonderful Post Ann !!!!!
 
Poppysocks said:
If I say I have Crohns what does that mean?
Click to expand...

It means you have Crohn's Disease.

Poppysocks said:
One person with Crohns may have ulcerations and skin tags in their colon/rectum, while another may have stricture/fistulas/fissures all throughout their small intestine. One may exhibit vomiting and abdominal pain, while another may show signs of bleeding and weightloss.
Click to expand...

Having Crohn's disease doesn't mean that you will experience every single possible symptom. People in the medical field and those who have heard of it or have it or have studied Crohn's disease know this.

Poppysocks said:
What is the problem with just explaining what you have? Why can't you just say, "I have inflammation throughout my GI tract", or "I have fistulas and ulcers all throughout my intestine". Why is there such a need to give everything a name?
Click to expand...

What's the point in saying what your symptoms are if your symptoms are constantly changing? What if you have ALL the symptoms? Why list them all? I don't have inflammation in my GI tract at the moment because I'm in remission. Does that mean I no longer have Crohn's? No. I could go out of remission at any point in time.

Poppysocks said:
It's not just diseases, we label EVERYTHING.
Click to expand...

I still don't see it as a label. AIDS itself isn't a label yet back in the day and ignorant people of today thought/think that it was/is something only homosexual men got so many used to think that if you had AIDS and you were male, then you were gay. But Crohn's disease doesn't have a label like that unless you're referring to the ignorant people out there who think that Crohn's disease is simply pooping your pants. Then that would be a label.

Poppysocks said:
What is the criteria to even be diagnosed with Crohns in the first place? Is there some standard doctors define it as? Or do they just see the inflammation and hear the patient's symptoms and say "ok you have crohns".
Click to expand...

Hold on here. Crohn's disease is a chronic autoimmune disorder. Which means that our own immune system attacks both bad and good bacteria throughout our GI tract from the mouth to the anus and for some even affects your skin which causes ulcerations, inflammation etc. etc.. Specialists run tests to find out if you have this disorder through biopsies and blood work. They don't just say, "sounds like Crohn's" and treat you for that when really maybe your gallbladder needs to be removed (because the symptoms for Crohn's disease are so similar to many other illnesses).

Poppysocks said:
I'm probably just going insane but I just don't like having anything with a negative connotation such as Crohns attached to me.
Click to expand...

I know having a disease isn't fun but it doesn't mean that its all negative or that it can't be treated. I don't like having Crohn's Disease either, no one does.

Poppysocks said:
I understand using these labels in medicine is beneficial because it gives the doctor a "general idea" of what someone has so they can treat the symptoms. But in normal colloquy I just don't like saying "Crohns".
Click to expand...

You don't have to tell people that you have a disease if you don't want to. Tell them your symptoms if it makes you feel better but Crohn's is a chronic illness that isn't going to go away.


Even if by definition Crohn's fits that doesn't mean its bad to label it. If Crohn's is a label then so is Cancer, AIDS, Diabetes etc. I guess I'm still confused as to why it matters. Ya gotta know what you have so you can treat it properly.
 
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My personal opinion and please dont take this the wrong way Poppysocks, is that you might want to consider seeing someone to help you accept and come to terms with having a chronic disease thats bad and it sucks and it messed up your entire life. It's like having to deal with the trauma of LOSING a life that you once lived, and that in itself is like losing someone close to you.

People can't always work through those traumas and emotions on their own and as you said in another post, you feel depressed.

Just a thought, maybe it can make you feel better.

xxx Hang in there
 
Good point Dras. Counseling is always a good idea. Even though I was diagnosed 20 years ago Poppysocks, I still need counseling from time to time. When you lose control over your own life it's mortifying and everyone handles it differently but counseling can be a HUGE help. I'm off to see my therapist today actually. ;)
 
I really do not have a problem saying that I have Crohn's, however I am recently diagnosed. I think the only problem I have is when I say disease, I get that look from people who do not know what it is and think that they might get it from standing next to me. However, I think of it as a way to educate people on what it is. I do think people are becoming more aware of Crohn's. I had someone in my class one time claim they were very familiar with Crohn's disease. So I figured a member of the family had it, but turned out it was his favorite football player, David Garrard.
 
I accepted it a long time ago, it's not as if I have been diagnosed yesterday. I've had it for the last 15 years. I'm completely content with it ruining a good portion of my life, I accept it and realize some things just aren't fair. I just can't seem to see any "lights at the end of the tunnel". I just need a few good years and that's really all I want now and I can't even seem to get that. I've always had it pretty bad, and I've been through all of the standard treatments.

I don't need to "see" anyone. I've looked at this disease from every different perspective I can possibly think of. I've been a very positive, strong person up until this point in my life. Now I'm just losing the will to fight it I guess. It's frightening for me to look down the road and see me battling with this my entire life. I don't want that. It's not something I want to go through. Me seeing someone isn't going to change the fact that I'm always sick, and a good chance I will never get better.

Didn't expect the thread to take this type of turn, but I guess my cynicism has become pretty conspicuous in this thread.
 
There is no need to get offensive love, we are all just trying to help you see things in a different light. Seeing a therapist wont make your disease better but it will help you get through this emotional rough patch.

I guess at the end of the day it's you who has to deal with it,whether its alone or with the help of a therapist.

cheers
 
Labels, or diagnoses are used so that doctors/psychiatrists ect ect know how to treat you. It is also useful if you want to claim disability of some sort.

I now have six such labels, including Chrohns of course. Some I will tell people about, some I wont.
 
Dras said:
There is no need to get offensive love, we are all just trying to help you see things in a different light. Seeing a therapist wont make your disease better but it will help you get through this emotional rough patch.

I guess at the end of the day it's you who has to deal with it,whether its alone or with the help of a therapist.

cheers
Click to expand...
Ok, thanks. You've really helped me see things in a different light. I cannot possibly understand how you could've taken my above post as me being offensive but again you've seemed to interpret my post in a different way. Maybe this is my fault, maybe not.
 
Poppysocks said:
...
I don't need to "see" anyone.... It's not something I want to go through. Me seeing someone isn't going to change the fact that I'm always sick, and a good chance I will never get better.

Didn't expect the thread to take this type of turn, but I guess my cynicism has become pretty conspicuous in this thread.
Click to expand...

You have to expect when you post on a public forum that people will naturally try to 'help'. No one wants to go through this and no, counseling won't change the fact that you are always sick. But it very well could help you discover strength and learn to be thankful for what you do have in life. Trust me, it could be worse.
 
Well, all I can do is wish you luck. My doctor is HEAVILY involved in Remicade testing and studies, etc. He used to be a board member of the CCFA, and he is VERY confident that they will find a cure in my life time. Granted, I am 26, but the strides they have had hit with Remicade is proven, and results are very positive. I understand your cynical attitude, but I do not think that it is something that will help the people here who are still holding on for hope. If anything, you can be an inspiration to others having lived so long with the disease. Listening to you, it sounds like I should give up hope right now since by the time I am your age, and have lived with the disease as long as you, its not going to get better.
 
Poppysocks may be younger than you........ You have been through a lot Poppysocks to have coped with it at such a young age..........

I believe this thread was simply do you or do you not like the label, "Crohn's Disease?":ycool:

:eek2::eek2::eek2::eek2::eek2::eek2:
 
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Dallies said:
Poppysocks may be younger than you........ You have been through a lot Poppysocks to have coped with it at such a young age..........

I believe this thread was simply do you like or not not the label, "Crohn's Disease":ycool:

:eek2::eek2::eek2::eek2::eek2::eek2:
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Thank you. Didn't mean to insult anyone in the thread, and it's gone off on a tangent I wish it hadn't.
 
My bad, the length of time you have had Crohn's threw me off. Didnt realize the signature.

Man, you are 22. Hang in there. You should be able to do anything you want. Dont let the disease control you. Dont let it win.
 
don't worry about it poppysocks, if you can't vent your anger here then were can you, better out than in... you've had to put up with a lot and we're all here to support one another, chin up
 
I've read the whole thread, and I'm gonna say this
I'm ecstatic to have Crohn's!
It means that I'm no longer mental!
It means that the ***** I have to put up with has a name at last!
Every quack in the world can call it what the hell they like, they can call it Edna if they want!
I don't give a flying frig to be honest!
 
Oh my gosh, Joan!!! I totally agree with you!! For like 3 years before my diagnosis they told my parents it was in my head or I was doing it to myself!! That's awesome!

And, I think what Dras meant was she didn't want you to get DEFENSIVE and not offensive.... correct me if I'm wrong Dras!

I also don't think therapy is a bad idea. I started getting sick at 11 years old, by the time I was diagnosed at 15 they acted like I had been crazy all that time. I did need to go and talk to someone. It helped a lot. Even now when things get bad and I lose my self esteem, have image problems, problems coping, OR feel like I lost the will to fight, they do help out.
 
astra101 said:
i've read the whole thread, and i'm gonna say this
i'm ecstatic to have crohn's!
It means that i'm no longer mental!
It means that the ***** i have to put up with has a name at last!
Every quack in the world can call it what the hell they like, they can call it edna if they want!
I don't give a flying frig to be honest!
Click to expand...

yes!!!
 
Poppy, you brought up a great subject that I don't think we have ever discussed before. I respect your thoughts on "being labeled" and I understand them. I went through a period when I didn't like being labeled and would only say I had problems with intestinal inflamation.
I started "educating" others when I had problems at work with missing time. It helped get them off my back and actually made me feel better.
I cannot begin to know what it was like to be diagnosed at such a young age as I was 28 when they finally put a name to it. It was bad enough then because Crohns wasn't as well known as it is now and the treatments were pretty much steriods back then.
As far as "labeling" to each thier own belief and please everyone respect each others belief.
At 52 I too would be happy to take on all the Crohns of the younger people here if I could since I've already spent almost 25 yrs with it. But it isn't possible so I will just be here to help in anyway possible.
 
Manzyb said:
Oh my gosh, Joan!!! I totally agree with you!! For like 3 years before my diagnosis they told my parents it was in my head or I was doing it to myself!! That's awesome!

And, I think what Dras meant was she didn't want you to get DEFENSIVE and not offensive.... correct me if I'm wrong Dras!
.
Click to expand...

Lol, yeah thats actually what I meant. Forgive me I come from S.A!!:ybatty::ytongue:
 
Very few people know what Crohn means, like us.

I think the best and self explanatory way to call this ******* illness is:
Inflammatory Bowel Disease.

In places I don’t want to be labeled I pretend to be a healthy person which has odd eating habits and the strangest sense of humor :):mad2:
 
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