Has anyone else noticed?

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sweetmelody
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   Posted 7/31/2008 9:14 PM (GMT -6)   
That a LOT of support groups and forums and internet things in general... have Crohns first. The website will be Crohns and then on the actual site it will say for those with crohns and colitis. It makes me feel like they're belittling our disease because Crohns is worse. Like we come second or something.

I don't know... it's just something I've noticed. Am I the only one?

Diagnosed with Ulcerative Colitis March, 07






Medications
Lialda - 4 pills in the morning w/ food.
Canasa suppositories


basa0806
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   Posted 7/31/2008 9:17 PM (GMT -6)   
No, I've noticed it too. I see way more magazine ads and tv commercials for Crohn's than I do for UC
Sam
Diagnosed March 2005
Remission since January/April 2006 (incident with mono)
3200mg Asacol, 25mg Amitriptlyine, Ortho Tri-cyclen lo, Imodium when I need it
"If you don't like something, change it. If you can't change it, change your attitude"
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kazygirl
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   Posted 7/31/2008 10:04 PM (GMT -6)   
i have UC and it sucks... i have bad flares wtih lots of pain... BUT...

crohns is worse really.
it affects so much more of the body and even my doc tells me i could have it worse than UC... i could have crohns.
and he is right.

not saying i agree that they should put us 2nd or whatever, just saying that it really is a much worse disease to have.
steph - 32 - female - UC since 2000
currently flaring again..  grrr! (triggered by stress - grrr)
mesalazine granules 3g x1 a day (much nicer than a million tablets a day)
enteric coated fish oil -omega 3 (so they get all the way to my colon)
vitamin D3 x1 a day
prednisolone 25mg x1 a day (ick ick and did i say ick?)
tumeric capsules x3 a day
 
 
 


sweetmelody
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Date Joined Aug 2007
Total Posts : 650
   Posted 7/31/2008 10:08 PM (GMT -6)   
i know it is... but it shouldnt take away from what we're dealing with...

it's like someone telling someone who lost a leg.... well it could be worse.. ya coulda lost two.. its just... who wants to hear that

and whatever you're going through is bad enough for you to be dealing with... so who's to say its not a big deal to you

Diagnosed with Ulcerative Colitis March, 07

Medications
Lialda - 4 pills in the morning w/ food.
Canasa suppositories


jujub
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   Posted 7/31/2008 10:31 PM (GMT -6)   
I don't think there's really a contest, although at times it certainly can seem that way to us. Probably part of the reason Crohn's is mentioned first is that it was identified as a specific disease earlier than UC.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
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Please remember to consult your health care provider when making health-related decisions.


sweetmelody
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Date Joined Aug 2007
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   Posted 7/31/2008 10:40 PM (GMT -6)   
that makes sense judy...

i wish we were known more... any time i say i have a stomach disease... everyone goes... like crohns? YEAH like freaking crohns but not. Oh well.

Diagnosed with Ulcerative Colitis March, 07

Medications
Lialda - 4 pills in the morning w/ food.
Canasa suppositories


Red_34
Elite Member


Date Joined Apr 2004
Total Posts : 23551
   Posted 8/1/2008 6:46 AM (GMT -6)   
Whenever I have to tell people what Uc is, I have to ask them first if they have heard of it and when they say no, I then ask them if they have heard of Crohns and when they say yes; I have to then proceed to say that Uc is like Crohns but limited to my large intestine (easy explanation because I don't want to get into the technicalities). I don't think that it's belittling our disease when Crohns is put first, it is just that this is disease that people have actually died from (my own mother died of Crohns) so it can be much more serious. But as long as Uc is being clumped in with Crohns, it is still strarting to get the recognition that it didn't have before. So it's all good in my book :)
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kazygirl
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Date Joined Sep 2007
Total Posts : 955
   Posted 8/1/2008 6:58 AM (GMT -6)   
i fully agree sherry and i say exactly the same thing to people..pretty much word for word.
seems more people have heard of crohns and its easier to explain UC from there.
steph - 32 - female - UC since 2000
currently flaring again..  grrr! (triggered by stress - grrr)
mesalazine granules 3g x1 a day (much nicer than a million tablets a day)
enteric coated fish oil -omega 3 (so they get all the way to my colon)
vitamin D3 x1 a day
prednisolone 25mg x1 a day (ick ick and did i say ick?)
tumeric capsules x3 a day
 
 
 


Beth75
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Date Joined Jul 2007
Total Posts : 2148
   Posted 8/1/2008 11:04 AM (GMT -6)   
yep, I was thinking maybe more people have Chron's than UC.....was a theory and also I think that they have more complications than UC since it can affect their small intestine among other things.

I'm not saying more important, but just my thoughts on why......
Beth, 32 ~ hoping to taper pred successfully, wish me luck!
Major Flare Sept/Oct 07
UC dx'd 03/00 (Proctosigmoiditis); Pancolitis since 09/07
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Prilosec, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd 09/07 - partial remission since 03/08
Prednisone 20mg 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Tekturna 300mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your blood protien level!
 


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 8/1/2008 11:30 AM (GMT -6)   
Honestly I don't see what difference it makes if "crohn's and colitis" is how it's titled, they are BOTH an IBD, personally I don't see what difference it would even make to anyone and I certainly don't see it in any way belittling UC...CD was recognized first from my understanding, even so, both conditions are an IBD...there are definitely bigger things to worry about than that....like how to get your IBD under control and keep it there.

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


TraciZ
Regular Member


Date Joined Aug 2007
Total Posts : 255
   Posted 8/1/2008 11:35 AM (GMT -6)   
I always thought it was alphabetical- "c" comes before "u"???

Bad Gut
Regular Member


Date Joined Feb 2007
Total Posts : 304
   Posted 8/1/2008 12:04 PM (GMT -6)   
I don't feel a bit bad about it.  In fact I think occassionally I'm glad to have UC over Chrons, at least we have a surgery option!!!  Also I don't enjoy having a disease that is well known and everybody under the sun knows what it is that I have - too much attention for me.  On the flip side it doesn't help not to get the word out and get researching and funding.  So that puts it in a pickle!!  If I had my way I would love to have a cure and put all of it behind me, until then we must face each day as it comes and know we have each other to lean on.

Diagnosed Feb 2007
12 Asacol Daily
Rowasa nightly
Multi-Vitamin Daily
1 Probiotics pill daily - Culturelle with Lactobacillus
Tumeric and Garlic supplement 2x daily


tardofit
Regular Member


Date Joined Jul 2008
Total Posts : 28
   Posted 8/1/2008 2:49 PM (GMT -6)   
No fix for Crohns! That's bad news for anyone with Crohns. And Crohns can be (what seems like) anywhere in the GI track.

UC bailout with surgery, I can't wait for mine!

So my take on it is, yea, those with the Crohns need more sympathy let them have it first.
29 year old male
 
12th year suffering UC


ediekristen
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Date Joined Apr 2007
Total Posts : 1366
   Posted 8/1/2008 2:58 PM (GMT -6)   

I know what you mean sweetmelody. Like when it's all

CROHN'S DISEASE
...and ulcerative colitis

And I know I've said it before but I too hate when people say "at least it's not Crohns". Yeah, and at least it's not cancer or leukemia or AIDs or herpes or hepatitis or the bubonic plague too. I understand life could almost always be worse but saying "at least it's not..." really devalues something. If someone was crying because their friend died, I wouldn't say "Well at least it wasn't your mom"; that doesn't make anyone feel better.


sweetmelody
Veteran Member


Date Joined Aug 2007
Total Posts : 650
   Posted 8/1/2008 3:00 PM (GMT -6)   
Well I can't help feelin the way I do. I just think that we should have things that are JUST Ulcerative Colitis.. I think that it should be just as widely known as Crohns and not just something... like Crohns.

Whatever. That's just how I feel.

Anyways I never said that crohns wasnt worse... I knew that already... but so is cancer so is i dunno.. liver disease. anyways. i shouldn't have even given my opinion.. just wanted to see if anyone else noticed we dont have lots of internet things that are just uc

Diagnosed with Ulcerative Colitis March, 07

Medications
Lialda - 4 pills in the morning w/ food.
Canasa suppositories


FitzyK23
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Date Joined May 2005
Total Posts : 4219
   Posted 8/1/2008 3:19 PM (GMT -6)   
I have crohns but I do agree w/ you sweet. Like the crohns and me website or the scholarship for people w/ crohns through UCB. But you UC'rs did get to go to that drug conference and they had no interest in talking to us crohnies. And so far all the meds I have taken were developed for UC but used on me, a crohnie.

To be honest, I enjoy reading both boards bc our issues are so similar. But there are many times I feel the UC'rs have it worse. I think with the disease being lower you have more urgency issues, more blood, and have to deal w/ fun stuff like rectal meds that most of us crohnies get to escape.

I am blessed to rarely have blood and no rectal meds for me besides prescription itch cream.
26 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night. I also take a birth control pill to allow some fun in my life.


tardofit
Regular Member


Date Joined Jul 2008
Total Posts : 28
   Posted 8/1/2008 3:25 PM (GMT -6)   
It's nice of you to say that FitzyK23, good point of view from a Crohns person.

I agree, at least the Crohns peoples "holding tank" HOLDS.
29 year old male
 
12th year suffering UC


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 8/1/2008 5:49 PM (GMT -6)   
Well I have crohn's colitis (CD affecting my colon) and as a crohnie my holding tank doesn't hold.

Why would UC be completely seperated??? It's an IBD just like crohn's, only it affects are restricted to the colon and rectom, crohn's can affect the entire GI tract from mouth to anus...maybe that's why crohn's is "first" because CLINICALLY it is worse.

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


Eva Lou
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Date Joined Sep 2006
Total Posts : 3442
   Posted 8/1/2008 6:33 PM (GMT -6)   
this is the wackiest post....who cares which comes first? Crohns is more well known, so maybe that's why. But if you look at a disease like cancer, you generally find plain old "cancer" websites first, not a bunch of individual types of cancer websites first. Of all the things to bother a person, & this is it? Hey if it makes you feel better, you just may have Crohns after all! I'm totally surprised people feel this way- it never would occur to me to think along those lines. ANY chronic, incurable disease sucks. They are probably lumped togther because the meds used to treat them are basically the same- & if you do some digging, you'll find that a lot of the IBD "support" websites are maintained by drug companies.

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
Culturelle
Fiber supplement
 
 
 


sweetmelody
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Date Joined Aug 2007
Total Posts : 650
   Posted 8/1/2008 6:45 PM (GMT -6)   
No but you can definitely google Breast Cancer and not have Colon and breast cancer... on one website lol

It might not occur to you... I just noticed it that's all.

Also.. i NEVER SAID CROHNS WASNT WORSE AND I DEF DIDNT SAY CLINICALLY IT WASNT WORSE.... All I said is... I noticed more sites are crohns and colitis.. not just colitis.. was just sayin. Oh and if you're bothered by this post... move on... don't read... or get over it.

Diagnosed with Ulcerative Colitis March, 07

Medications
Lialda - 4 pills in the morning w/ food.
Canasa suppositories


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 8/1/2008 7:36 PM (GMT -6)   
I know you didn't say it wasn't worse CLINICALLY or otherwise, I just added that for those who get stuck on "symptom" wise, which we all know, there can be a severe UCer that is "worse off" SYMPTOM wise than say a mild crohnie...because CLINICALLY, CD is considered a worse IBD than UC because of the simple fact that UC can be complete "cured" by having the colon/rectom removed, whereas that wouldn't do a crohnie any good symptom wise...ask any GI and they'll tell you the same...clinically speaking of course.

I have to agree with Eva Lou though, it is kinda pointless to get all worked up over this expecially because it's true that any incurable chronic disease does suck regardless of it's nature.

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


sweetmelody
Veteran Member


Date Joined Aug 2007
Total Posts : 650
   Posted 8/1/2008 7:44 PM (GMT -6)   
lord i wasnt even worked up till people totally didnt realize what i was sayin...

i never even brought up the fact that either or was worse or sucked or didnt suck or anything

i just said... theres more sites... that are crohns n colitis... than colitis alone.

read

Diagnosed with Ulcerative Colitis March, 07

Medications
Lialda - 4 pills in the morning w/ food.
Canasa suppositories


Silent Lucidity
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Date Joined Nov 2007
Total Posts : 625
   Posted 8/1/2008 7:49 PM (GMT -6)   
I'm just glad that there ARE websites for us.Back when I was diagnosed I didn't even have a computer!We should all be thankful for the wonderful resource that the Internet is,and the support we can give each other through sites such as this.The order the two are listed in doesn't affect the value of these sites to us one bit.
Procto-Sigmoiditis dx 1995.First Colonoscopy in ten years,on 29th Feb 2008,revealed moderate to severe Pancolitis.
Current meds;200mg Azathioprine daily.Pentasa 2 x 500mg 4 x daily.
Got Ryche?


sweetmelody
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Date Joined Aug 2007
Total Posts : 650
   Posted 8/1/2008 8:01 PM (GMT -6)   
yeah thats true.... thanks silent.

Diagnosed with Ulcerative Colitis March, 07

Medications
Lialda - 4 pills in the morning w/ food.
Canasa suppositories


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 8/1/2008 8:49 PM (GMT -6)   
Bottom line is they are both IBD and they both suck and in ways I actually think it's better that they don't single one or the other (CD/UC) out because think of all the extra work it might be for those who are newly DX and aren't even sure which they have...not to mention there are more things each have in common with one another than not, for example, same meds are used to treat UC as used for crohn's colitis because those meds are targeted to reach the colon/rectom and virtually all the same extraintestinal conditions can go hand in hand for either (osteo, arthritis, mouth ulcers eye conditions ect).

Don't you think it's actually easier that they group the 2 together rather than seperate them due to the above mentioned alone? Imagine how those with collegenous colitis (aka microscopic colitis) feel not having their condition plastered everywhere, they'd be happy to be grouped in with crohn's and colitis (which in some way they are because it's still a colitis condition but even less people have heard of it compared to CD and UC.

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)

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