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sickRN
New Member


Date Joined Oct 2008
Total Posts : 8
   Posted 10/22/2008 2:52 AM (GMT -6)   
Have any of you had people make comments to you like: 'I had the flu once so I know exactly how you feel.' Or 'You should have no trouble having a baby. You are so used to your stomach hurting that contractions will be nothing for you.' I even had someone tell me that they had a really bad stomach ache and then when I made a comment about my stomache hurting they said, 'yeah, but you're used to it.'
Has anyone else experienced this and if so how do you respond?
Female
Age 28
Newlywed
Meds: Remicade, Lialda, Rowasa, Cortifoam, Folic Acid, Imodium (my best friend)


Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2832
   Posted 10/22/2008 4:19 AM (GMT -6)   
I get it all the time too, so I simply let it go.... these "normies" have no clue that their agonizing day or two of stomach or flu pain or whatever is still like a walk in the park versus what many of us go through every day.  I have had my own parents puzzled asking me to describe what sort of pain I am feeling.  We can be like Eskimos describing dozens of different types of snow to someone who has lived their whole life in the tropics- i.e. where would I begin?

Pancolitis 20 years ago, full med-free remission 10 years,
Flaring/simmering on and off ever since
10 20 17.5 15 12.5 10 mg 8 7.5 20 mg pred, 100 mg Imuran
Probiotics (Primal Defense and others), TSO, hookworm
Turmeric/circuminboswellia, fish oil, many vits/minerals
Lower-carb version of Specific Carb Diet (SCD), Remicade next
 
 
 


Michelle8871
Regular Member


Date Joined Sep 2008
Total Posts : 90
   Posted 10/22/2008 5:14 AM (GMT -6)   
Oh yes...when I went the ER after being in pain and not eating for 12 days or drinking for 4 days....
 
I asked the Dr. "How can my body survive without eating or drinking?"
 
His response was....in a sarcastic tone...."You certainly don't look malnourished to me!"
 
Bear in mind.... I am 5 feet tall and weigh 125 lbs.  - its not as if I am obese!
 
Some Dr's just....SUCK!
Newly diagnosed August 2008
Currently on 15mg prednisone, 12 Asacol per day, Mesaline enema nightly,Multi vitamin, Omega 3 and Calcium
Realizing that disease is a real pain in the ass!
Mother of a 5 year old and 12 old trying to get through each day with a smile on my face!


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 10/22/2008 7:06 AM (GMT -6)   
When people complain about their mundane illnesses, I just remind myself that it's important to them, and listen. Or if they go on too long, I tell them they should see their doctor and either change the subject or walk away.

For the ER doctor: "I didn't say I was malnourished. I said I haven't been able to eat or drink for four days." We do get a lot of opportunities to practice our assertiveness skills, don't we?
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.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 10/22/2008 7:57 AM (GMT -6)   

people just do not know what we go through.  I have some friends that really just have no clue but are really great in other ways and I have some friends that are so understanding it is unbeliveable.

Not everyone will ever 'get it'.  Judilyn is right, it is good practice on standing up for ourselves. My original pc care Dr. was like you don't have colitis, you ate wow potato chips one time so this is why you have this problem, even though your Mom had it does not mean you do. 

Dr's are people too some are idiots just like everyone else.


Beth, 33 ~ hoping to taper pred successfully, wish me luck!
Major Flare Sept/Oct 07.  Flare May 08 (from aspirin?).
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. Close to remission since 9/08.
Prednisone 2.5mg 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!
 


TraciZ
Regular Member


Date Joined Aug 2007
Total Posts : 255
   Posted 10/22/2008 11:34 AM (GMT -6)   
My own mother who has diverticulitis has told me just to eat (spicy chicken wings) and suffer the consequences! Oh no, I won't put my body through that. Even she didn't understand.
Tressa 35 (F) in WNY
UC w/skip lesions & stomach ulcers
Asacol 12/day, prilosec twice/day, Canasa as needed


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 10/22/2008 12:15 PM (GMT -6)   
The stupidest thing anyone ever said to me was they wished they could also have crohn's so they could stay at home and not have to go to work...she then actually asked me (supposedly jokingly I'm hoping) to give her a stool sample so she could say it was hers and then be able to stay home as well.

It's important to realize that people are simply stupid when stupid things come out of their mouths and those people are the last type of people you should let ruffle your feathers, they are just not worth it. Dr.s included!

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


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 10/22/2008 12:30 PM (GMT -6)   

Since newly diagnosed at age 68 - my comments are all related to age.  Oh, all the people my age know exactly where my pain is and running to the bathroom.  Younger people think "there she goes again - old people are always whining about their health".  As for doctors - they go to school a LONG time - learn a lot - but do they have a class in how to deal with all kinds of people and have some compassion along the way.

ElaineNY


68 yr. old granny
New diagnosed with proctosigmoiditis - 6/2008
10/3/2008 - agreed to try one Lialda and one Canasa every day due to my sensitivity to all medications and side effects. Colonoscopy 10/28 to reaccess.
Probiotic Align, Prilosec for GERD
Inderol for hypertension,Xanax,Lipitor, multivitamin, calcium w/D, Tylenol
 
 
 
 
 
 
 


P-Fit
Regular Member


Date Joined Jun 2008
Total Posts : 419
   Posted 10/22/2008 12:48 PM (GMT -6)   
People can be very clueless sometimes. I am at work today waiting for my GI doc to call. I feel like my stomach is about to explode. It husts for me to get up and walk. People are looking at me crazy like "it's just a stomach ache". I try to come to work whenever I can just to prove that Im not faking. Probablty should've stayed home today. SOme people are just jerks.
Dee-38yrs old 
Diagnosed with UC in 2004-PTSD/Panic Disorder/Depression in 2007 & Fibromyalgia 2008
750mg colozal 3 pills 3x a day, .5mg clonazepam, 7.5mg Lexapro
1,000mg canasa suppositories (PM),
 Fioricet-Migraines
Prilosec-Not sure(Heartburn/GERD), Fish Oils
GNC Womens Active Formula Multi-vitamin
Colonoscopies-4 


SocalJohn
Regular Member


Date Joined Oct 2008
Total Posts : 160
   Posted 10/22/2008 1:22 PM (GMT -6)   
Ignorance is bliss. If youve never experienced it, you would never know. Dont let it bother you.

Ive had plenty of asanine comments.

Luna0
Regular Member


Date Joined Jul 2008
Total Posts : 83
   Posted 10/22/2008 2:19 PM (GMT -6)   

You bet ignorance is bliss.  I have some friends that worry about me and others that get mad at me when i say umm i have been sick for lets seee.....6 years! They go ya sure you are just saying that. STUPID...

Then i have the people that complain about how i don't do a dam thing every day.

-i don't work

-i just go to school

-so how the hell do you say you know how life can be hectic...

*that is where i roll my eyes and say UC IS A FULL TIME JOB!!!*

And some professors are the biggist critiques of this. How can you be gone for a week...and expect me to think you are sick if you don't look like you have been to the hospital....STUPID!!!

WoW that felt good. redface redface :-) :-) smilewinkgrin wink

Thank You. smurf


Tawn 
18 years old, College Student ~WAHOO GO CATS=)
 
Diagnosed in 2004
Currently on:
Remicade
Imuran 3pills/day
And many other over the counter meds.


Luna0
Regular Member


Date Joined Jul 2008
Total Posts : 83
   Posted 10/22/2008 2:25 PM (GMT -6)   
pb4 said...
The stupidest thing anyone ever said to me was they wished they could also have crohn's so they could stay at home and not have to go to work...she then actually asked me (supposedly jokingly I'm hoping) to give her a stool sample so she could say it was hers and then be able to stay home as well.

It's important to realize that people are simply stupid when stupid things come out of their mouths and those people are the last type of people you should let ruffle your feathers, they are just not worth it. Dr.s included!

:)

Good God i wouldn't wish this on my worst foe! Let alone someone I know and can semi respect...I say semi because any self-respecting person would never say that. But it is funny.
rolleyes  
Tawn 
18 years old, College Student ~WAHOO GO CATS=)
 
Diagnosed in 2004
Currently on:
Remicade
Imuran 3pills/day
And many other over the counter meds.


marty1976
Veteran Member


Date Joined Nov 2005
Total Posts : 2045
   Posted 10/22/2008 2:39 PM (GMT -6)   
I've had far too many comments like that in the past and it used to bother me.I don't let them bother me now, ignorant people will always be ignorant.
                                     keep the faith 

         asacol/proctifoam/
Zoton (lansoprazole)/pred/colofac


       
                   http://www.myspace.com/martylogue


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 10/22/2008 5:08 PM (GMT -6)   
I love the "I wish I could have what you have so I could be skinny like you"
27 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.


neednewbody
Regular Member


Date Joined Sep 2008
Total Posts : 59
   Posted 10/22/2008 7:14 PM (GMT -6)   
I also hate people that dont think you are sick because you look fine. how do you look normal and fine anyway?

I remember post transplant I was on the subway and i needed to sit down. An old lady got on and people frowned at me because I didnt give up my seat. But truly, she wasnt that old, she seemed able bodied, and I was not. I just didnt look sick.
Liver transplant 2004 -- liver is only healthy part of me
Prograf 1mg bid for transplant
 
Remicade every 6 weeks - not working
pentasa 1500mg tid
palafer once daily
lomotil every day as needed
immodium every day as needed
 


Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4185
   Posted 10/24/2008 9:01 PM (GMT -6)   
pb4 said...
The stupidest thing anyone ever said to me was they wished they could also have crohn's so they could stay at home and not have to go to work...
I probably would have punched her.


Diagnosed with UC March 2007; Asacol 4 tablets 3x/day; Rowasa; Canasa; Viactiv; Metamucil wafers; multivitamin; sublingual allergy drops


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5182
   Posted 10/24/2008 10:49 PM (GMT -6)   
We did a thread on this about a yr & a half ago, with emphasis on people offering us unwanted advice. I remember that Shrek wondered if these types behave the same way toward cancer patients! / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 10/25/2008 1:06 AM (GMT -6)   
I didn't have to do anything, about 5 yrs ago I found out she has severe IBS...but she doesn't qualify to stay at home as a result of it...I solely rely on karma, and once again it bit someone in the "ass" that should have thought before she spoke, you know what they say, "careful what you wish for, you might just get it"

BTW, she made those comments to me 17 yrs ago when I first got sick, so karma might have been slow at it but better late then never, not that I wished any harm on her of course, I didn't have to, she said something stupid and must have really meant it because karma got her.

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


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 10/25/2008 8:24 AM (GMT -6)   
No, Old Hat - cancer patients are treated differently.  My husband has lung cancer and I have UC.  Poor "Paul" (husband) he has cancer AND he has to deal with his sick wife (sarcastic thinking).  Oh well, I would rather have UC than cancer but yes there is a lot of difference in the treatment as far as compassion, etc.  I KNOW many people don't think what I have is any big deal - I would not wish it on my worst enemy however.
ElaineNY
68 yr. old granny
New diagnosed with proctosigmoiditis - 6/2008
10/3/2008 - agreed to try one Lialda every other day and one Canasa every day due to my sensitivity to all medications and side effects. Colonoscopy 10/28 to reaccess. Taking Reglan now for nausea, etc.
Probiotic Align, Prilosec for GERD
Inderol for hypertension,Xanax,Lipitor, multivitamin, calcium w/D, Tylenol
 
 
 
 
 
 
 


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 10/25/2008 9:17 AM (GMT -6)   
People don't get it because they've never experienced it and there's still alot of ignorance about IBD because it's not the type of thing most folks feel comfortable talking about. Same with colon cancer. Kudos to Katie Couric for trying to educate people.

A lot of people don't understand the digestive system in general. I have an aunt who always asks how my "stomach" is feeling. I have UC. It's my COLON that's affected, not my stomach.
Diagnosed with ulcerative colitis spring 1999.
 
Maintenance dose sulfasalazine.
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice. Oregano oil antibiotic, antiviral, antifungal. Long-term remission with only minor blips.
 
 


Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4185
   Posted 10/25/2008 10:54 AM (GMT -6)   
princesa - One of my best friends always asks about my "stomach" too! I haven't corrected him yet, but it kind of aggravates me.
Diagnosed with UC March 2007; Asacol 4 tablets 3x/day; Rowasa; Canasa; Viactiv; Metamucil wafers; multivitamin; sublingual allergy drops


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 10/25/2008 10:58 AM (GMT -6)   
Now you guys are letting technical things aggravate you, I always refer to my stomach bugging me, I never say my colon is bugging me, you can't expect people to relate to my colon is bugging me compared to my stomach is bugging me besides which, isn't it your stomach that hurts/aches due to your colon being inflamed?

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


Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4185
   Posted 10/25/2008 11:37 AM (GMT -6)   
I usually say my "tummy," or my colon, since it isn't actually my stomach. Plus, tummy is such a cuter word.
Diagnosed with UC March 2007; Asacol 4 tablets 3x/day; Rowasa; Canasa; Viactiv; Metamucil wafers; multivitamin; sublingual allergy drops


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 10/25/2008 12:09 PM (GMT -6)   

Now there is a good question!  I don't believe that my colon has anything to do with my stomach hurting.  If I have GERD or stomach aches it is due to digestion, something I ate, etc. but nothing to do with my colon.  Maybe I am wrong!

To be fair to those who don't understand - I am 68 and probably did not understand either until about 2 years ago - I always thought it was all "stomach" problems!

ElaineNY


68 yr. old granny
New diagnosed with proctosigmoiditis - 6/2008
10/3/2008 - agreed to try one Lialda every other day and one Canasa every day due to my sensitivity to all medications and side effects. Colonoscopy 10/28 to reaccess. Taking Reglan now for nausea, etc.
Probiotic Align, Prilosec for GERD
Inderol for hypertension,Xanax,Lipitor, multivitamin, calcium w/D, Tylenol
 
 
 
 
 
 
 


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 10/25/2008 12:56 PM (GMT -6)   
In correlation with intestinal issues people relate it to stomach/tummy issues so since there still are too many people that have no idea about IBD, telling them you have stomach/tummy issues is easier for them to relate to than saying colon or bowel issues, besides which I know many if not most IBDers do have tummy/stomach pain as a result of having IBD.

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

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