Why, I mean WHY did they have to name Ulcerative Colitis such a nasty  sounding misleading name that is always misinterpreted as an ulcer or IBS?!  I'm tired of having to explain what I have (had J-pouch) and trying to sound lady-like at the same time.  

Come on.  It's bad enough to actually have Ulcerative Colitis... to make matters worse, we are tormented with having to explain what it means to everyone.  No, it's not an ulcer, no it's not colitis, as in IBS, it's a disease.  Yes, it's gross.

Didn't someone discover it? Name it his or her name!  I had a neighbor once by the name of Kolonowski.  He always laughed and made a joke of it that I had Kolonoski Disease because he didn't like to say I had Ulcerative Colitis.  It does sound much better.  Let's name it that!!  That sounds cool.  Nice play on the word "Kolon" = "Colon".

Sometimes I just say I have the sister disease to Crohn's to maintain a bit of dignity just because in some professional or not as personal conversations I don't want to say something that sounds so disgusting and leads to questions that make me have to explain what it isn't but having to explain it is more disgusting and debilitating than it sounds.  

Most diseases have real names, not names that are really just a misleading description.  I want to keep it simple and matter of fact. It needs a plain name.

I'd rather be called any of the 'terrible' words that are no longer allowed by the PC police.  Call me anything but don't make me say Ulcerative Colitis.  Blahhh.  No offense to my fellow UC-ers but don't you feel the same sometimes?  We really received the short straw for disease names.  Somebody was too lazy to give us a dignified sounding name. 

I feel better now after that rant.  It's been building up for 20 plus years now after the GI doctor put a brochure in my lap after barely waking up and said you have Ulcerative Colitis, here, read about it.   What? Wait... no way.  Is that really what they call it?  You've got to be joking.  Rude.

Last edited by Gutless Wondergirl
Original Post

"Colitis" means inflamed colon. Anything ending in -itis means inflammation.  My daughter has "Indeterminate Colitis," as her IBD is all colon, but more likely Crohn's type, as skip lesions.

"Colitis" is not IBS: they have no inflammation, so whoever is getting *that* mixed up is REALLY misinformed  

Ulcerative, well... We *do* have ulcers in the colon. It's true! 

Its actually pretty appropriately named, really.  I don't really feel so harshly about the name, but I'm a nurse. To me, it's very descriptive, actually. �� 

But you're allowed to hate it.  

I often just say I have inflammatory bowel disease, because I have a murky new dx anyway; it's just easier.

 

Rachel, case in point. We can't even agree on what the words composing the name mean.  Most people aren't nurses like you (I'm just a bean counter) so that makes it harder to have to explain what the name means.  It depends on the context of what the person you are talking to already knows. THis is one of the main reasons I hate the name of this disease and believe the name is misleading.  For example, the diagnoses code ICD-10 K58.0 is IBS and contains back references to "colitis" as included in icd-10 k58.0(IBS). Although icd10 k52 is used specifically for Ulcerative Colitis.

So the word Colitis used by itself does refer to IBS. So we can't even shorten the name, we have to always add the gruesome word ulcerative. Then laymen think stomach ulcer and I have to explain it's not that. I'm not a medical professional and I don't want to explain the difference between ulcers and such. Regardless of how descriptive our disease name may be, why can't it have a name and leave the descriptions for people to go look up themselves.

Most Nouns are actual names, not descriptions and even worse a description that sounds like something more commonly different to the layman. I don't want to have to become a scholarly healthcare professional every time I want to say the name of my disease.  Most descriptive nouns (like my play on words of my own profession above) are used to make a joke or make fun of a proper noun.   

It just needs a real name. When you order a soda, you say you want a soda or pop. You don't say I want a cryo brown colored sugary fluid. Crohns's disease is not a description. It is perfectly just a name. I think life would be easier if our disease had a name not a lousy (debatably accurate) description.

Last edited by Gutless Wondergirl

Good point, but even if UC had been named after some doctor who discovered it, you would still be explaining what it is. I am sure folks with Crohn's disease are explaining all the time. 

I've had UC for 45 years and I have not found that many people need to know I have it or need an explanation. I think most people aren't all that interested in my medical history (except for family and close friends).

Jan

Thanks Jan, I was hoping to hear your view. I guess I have nosier non-medically informed friends and business acquaintances that don't stop with the questions until I get to autoimmune disease with explosive bloody diharrea and a pain in mu side that feels like a knive twisting that is not caused by stress like the IBS/colitis or ulcer they think I have when I give them the name. I don't want to be handled with kid gloves leaving anyone thinking stress causes this to happen to me.  Although the name does seem to cause me stress.

In the future, I will have to go with Racheal's Inflammatory Bowel Disease generic name and leave it at that unless they actual know there are different types and ask me which one. I  just thought someone would agree and maybe we could  rally some likeminded frustrated people that would try to get it named after the doctor who discovered it or have fun coming up with some cool kind of name instead of description. I guess I'm the only one with serious issues about the name, err I mean descriptive name. I like to keep things simple and there is nothing simple about UC. 

Yes, so true! Nothing is ever simple with UC. Things are changing though. I see ads on TV for UC/Crohn's meds, which was unheard of when I was first diagnosed in 1972. These days if people think they need to know, I just tell them I had my colon removed and it saved my life. If people get mixed up between IBD and IBS, I tell them that IBS does not destroy your colon or lead to cancer, but IBD does.

Now I have enteropathic arthritis, and that is even more difficult to explain!

Jan

Jan, to come to think of it the EA (I'm not even going to try to spell it or pronounce it) is actually what got me back to talking about UC.  Like you, after my colon was removed I had been saying very similar things like you about the colon being removed- saved life and avoiding the term UC.  However, for me during menopause (so much fun), when other things like EA started popping up caused by the original culprit, I found myself talking about UC again and after 10 years of latent repressed name irritation from the name came flooding back to me.  And now maybe another Cholinergic Urticari.  I guess the auto-immune part of it likes to keep rearing it's ugly head in other ways.  

I was put back on some of those new drugs and they were super expensive (more than 10 years ago), nothing went to generic as they just add something like time release to keep the patent and then my joints were freezing up.  So I either am getting EA or allergic to the meds or both.  

CeeeCeee, is that a term used for both UC and Crohn's or a way people mess up the name or what you want to name it?

Last edited by Gutless Wondergirl

I believe "Crohn's Colitis" is just another way to say, "Crohn's".  Both UC and Crohn's involve inflammation of the colon.  The big difference is if inflammation exists anywhere else in the digestive tract. 

I agree with both Rachel and the original poster. It's an accurately descriptive name which can sound kind of harsh. From having reviewed my own past scope pics I know it's accurate because the disease in the colon is characterized by ulcerations. Now I have ulcerations in the pouch and we could call it ulcerative pouchitis or we could call it Crohn's. Ulcerative pouchitis would be accurate and so would Crohn's and if you want to sound less descriptive you go with Crohn's. Yet I don't like Crohn's because people think once you have Crohn's the sky is falling and your life is over. Yet I go out for dinner every month with 3 ladies who have Crohns and all are doing well and managing their illnesses with different treatments and diet and I don't see sky falling on them.

Don't get caught up in labels, just treat what you have and whatever you want to call it.

Last edited by CTBarrister
Jan Dollar posted:

Good point, but even if UC had been named after some doctor who discovered it, you would still be explaining what it is. I am sure folks with Crohn's disease are explaining all the time. 

I've had UC for 45 years and I have not found that many people need to know I have it or need an explanation. I think most people aren't all that interested in my medical history (except for family and close friends).

Jan

Ya... If involves poop people are just turned off.  But.  If they get a digestive tract disease or have it and don't know it until it flares late in life.  Well.  Then they will discuss.  

I didn't know I had it until I was 40. But looking before that there were subtle signs.  Definitely. 

As for the name.  UC is all I say.  Ulcers in the colon.  They understand the later.  But not really how devastating it is.  Cause it really doesn't sound bad.  Like cancer.  That's not a good name for a disease either. 

Maybe they need to be named after candy. 

Nah.  Nevermind. 

Just trying to make light of the whole thing. 

Richard. 

P. S. 

I don't think Lou Gehrig would want to be remembered by a disease.  But rather his baseball skills. 

Last edited by Mysticobra

Hola

I'm mexican and in spanish we call it CUCI (pron: ku-see) = Colitis Ulcerativa Crónica Inespecifica. Even if your spanish is not good you can understand the whole meaning, which is Ulcerative Colitis Chronic Unspecific, which in resume is a chronic colitis (WITH ULCERS, of course they are ulcers, have you ever seen the pictures of your colonoscopies?) which appears without an specific reason, other than our super effective immunologic system (I got UC's activated by high contamination of the environment and lots of stress).

By this you can even explain easier WHY you got ill and define it with a proper name, CUCI. For me it works great when it comes to explain people, and I think you should all try this 

Hey Gutlesswondergirl,

I'm an disabled "bean counter". Most people these days don't know that term means. I have counted many things during inventory testing. For example an entire brick yard as they sold the manufacturing company as of the end of the year. 2 days in the cold Midwest I had to actually climb to the top of the piles to make sure they weren't stacked so it looked like there were more bricks. Those were no beans. I've counted shirts, socks and turkey bags for a few other non beans examples

So from one former CPA, certified public accountant, CMA, certified management accountant,  to another bean counter, UC is a below the waist disease. My 7 year old grandson understood that I was sick, the doctor operated and I am still alive description. 

You are right people have heard of Crohn's more than UC. I also had ulcers in my inflamed colon and agree that UC is more descriptive than many other diseases. Last stats I recall 1 million people in the USA have crohn's and 400,000 have UC. So crohn's name is more recognizable.  

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