A little annoyed at some assumptions

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EdwardC
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Date Joined May 2008
Total Posts : 48
   Posted 1/26/2009 11:58 AM (GMT -6)   
I haven't personally met anyone else with UC and many of the people I know have no idea what this condition entails. After explaining to them, in depth, what the disease is and what may be some of the possible precipitating factors in its onset, they immediately blame me for eating too much spicey food which I never have. rolleyes I know violence is not the answer, it is the question, and the answer is: "Yes." devil
Mild pancolitis with some diverticular pockets diagnosed in April '08
Currently on 400 mg Asacol X 6 per day


basa0806
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Date Joined Feb 2005
Total Posts : 2103
   Posted 1/26/2009 12:10 PM (GMT -6)   
Welcome to the world of informed, ignorant people. When people say that crap like that to me, I just ignore it. It isn't my fault they can't comprehend the disease and I don't want to work myself up and make my colon worse. :) Don't feel bad, we've all been in that position before. My dad tells me that its just dairy and nuts and stuff and that he had the same problems when he was my age and I'll grow out of it. Not quite dad...
Sam
20 year old college student diagnosed with ulcerative colitis at 16
Remission since January/April 2006
400mg Asacol 2x, 10mg Elavil, 75mg Effexor XR for GAD

"If you don't like something change it. If you can't change it, change your attitude"
Maya Angelou


Anthony1977
Regular Member


Date Joined Jan 2009
Total Posts : 413
   Posted 1/26/2009 12:13 PM (GMT -6)   
My grandmother always attributed my problems to always eating cold and spicy food smilewinkgrin

RyanF
Regular Member


Date Joined Jan 2006
Total Posts : 358
   Posted 1/26/2009 12:17 PM (GMT -6)   
Anthony--

Then you should ask her, as a loving member of your family, to cook your meals for you. Ha! Bet she won't think that any more.
Ryan


Meds:

Began Humira on 10 Jan 2009

Second injection: two pens on 24 Jan 2009


Lonie
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Date Joined Feb 2005
Total Posts : 6448
   Posted 1/26/2009 12:17 PM (GMT -6)   
Hi EdwardC, and welcome to Healingwell! Yes, we've all heard almost the same thing...it's very frustrating. I'm always glad we have the folks on this board to vent to...therefore no violence involved...right? I'm happy that you joined us, and I know you'll get the support you need from all of these fine people. Again, welcome! cool
Carol

Remicade - will have my 25th infusion on November 26 
Vitamin B-12/Biotin, Probiotics
 
Co-Moderator for the UC Forum
 
 


kops2da
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Date Joined Jun 2008
Total Posts : 2865
   Posted 1/26/2009 12:23 PM (GMT -6)   

Edward - one of the things I hate the most about having this disease is tring to explain to anyone who is interested what is going on with me.  Why can't I go out to eat - am I lactose intolerant - gluten sensitive?  Etc?

Have no good answers - I just try to not say any more than I have to because they don't really want to know.  ElaineNY


68 yr. old granny
New diagnosed with proctosigmoiditis - 6/2008
 Colonoscopy 10/28 showed only 2 cm. left to heal in rectum - going to try Proctofoam first.
Probiotic Align, Prilosec for GERD
Inderol for hypertension,Xanax,Lipitor, multivitamin, calcium w/D, Tylenol
January 9 - doctor changed me from Protofoam to hydrocortisone enemas for two weeks - wish me luck.
 
 
 
 
 


UCinGV
Regular Member


Date Joined Mar 2007
Total Posts : 403
   Posted 1/26/2009 12:34 PM (GMT -6)   
kops2da said...
Edward - one of the things I hate the most about having this disease is tring to explain to anyone who is interested what is going on with me. Why can't I go out to eat - am I lactose intolerant - gluten sensitive? Etc?

Have no good answers - I just try to not say any more than I have to because they don't really want to know. ElaineNY


If people rudely push for an answer, just tell them the truth. "I have extremely bloody diarrhea and painfully inflamed intestines." That usually shuts them up pretty quick.
12 Asacol
100 mg Imuran


ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 1/26/2009 12:43 PM (GMT -6)   
Arrrgghhhh! I know what you mean!! I was actually thinking of making a post exactly like this the other day.
 
My sister blames my drinking too much orange juice as a kid, my parents think it's my current diet that's making me sick, and it's always "you should eat this, you should not eat that, blah blah blah" and I just want to scream "Listen, I'm the one that's been dealing with this first hand for 10 years, I think I know what I can and can't eat"
 
The worst part is... My 15 year old cousin was just recently diagnosed with Crohn's disease. But it was a mild case and she's in remission and only on probiotics and vitamins. So after talking to my aunt about it, my mom comes home and tells me that my cousin's doctor told her that pizza is VERY bad for her because of something in the dough, and that she should NEVER eat chicken. So my mom's telling me now I need to take these vitamins and stop eating pizza and chicken completely, and that I'll get better.
 
I was so frustrated listening to her, especially when she was saying the doctor said IBS turns into UC which turns into Crohn's, and I tried to explain that UC and Crohn's are not the same, and it's different for every single person so just because she can't eat chicken doesn't mean I can't, and also IBS is a completely different thing and not even remotely related and that the doctor sounds like an idiot, but since my cousin is "all better", he MUST know what he's talking about. Grrr. mad
 
So I said screw it, went home and ate a chicken sandwich and went to bed. LOL.

Female, 23, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in femur head & lumbar spine from long term prednisone use...

Current Meds:
Lexapro 10mg, Azasan 100mg

 
 


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 1/26/2009 12:43 PM (GMT -6)   
That's my way, too. When people advise me if I'd just stop eating ______, I just tell them "I've stopped eating everything but water before, and still had bloody diarrhea."

Those two words - bloody diarrhea - always lead to a change of subject, and they never bother me about it again.
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.
"My life is an ongoing medical adventure"
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


ithurtsmom
Regular Member


Date Joined Nov 2006
Total Posts : 289
   Posted 1/26/2009 12:43 PM (GMT -6)   
As a mother of a 7 year old with UC, it's always fun when people look at me and say "Well what are you feeding her?"
Joan
 
Daughter 7, UC
Asacol 2X2 plus 1x daily
Omega 3
Folic Acid 1000mcg.
Fiber
Probiotics
calcium
 


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 1/26/2009 12:49 PM (GMT -6)   

The fact that I have had IBS for maybe 30 years which IS affected by what I eat and then diagnosed with UC which does not seem to be affected in any way - makes explaining difficult.  I tell a friend I can't go to a Mexican restaurant for example because my IBS won't allow me to eat spicey food such as that and I will have gas/pains in stomach, etc.  So, then when they know I now have UC they also assume food will affect it.

YIKES!  ElaineNY


68 yr. old granny
New diagnosed with proctosigmoiditis - 6/2008
 Colonoscopy 10/28 showed only 2 cm. left to heal in rectum - going to try Proctofoam first.
Probiotic Align, Prilosec for GERD
Inderol for hypertension,Xanax,Lipitor, multivitamin, calcium w/D, Tylenol
January 9 - doctor changed me from Protofoam to hydrocortisone enemas for two weeks - wish me luck.
 
 
 
 
 


ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 1/26/2009 12:58 PM (GMT -6)   
Judilyn said...
That's my way, too. When people advise me if I'd just stop eating ______, I just tell them "I've stopped eating everything but water before, and still had bloody diarrhea."

Those two words - bloody diarrhea - always lead to a change of subject, and they never bother me about it again.

Exactly. I was like "Okay, then if it's all about food then why does EVERYTHING make me sick? Why am I still in pain when I eat bland foods and cut out all the 'bad' stuff?" They don't know the answer so I just say, well if everything I eat is going to make me hurt, then I might as well continue to eat the things I enjoy and not worry about it.

Female, 23, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in femur head & lumbar spine from long term prednisone use...

Current Meds:
Lexapro 10mg, Azasan 100mg

 
 


ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 1/26/2009 1:02 PM (GMT -6)   
Oh, and my mom brought a book home for the diet my cousin is on... The Maker's Diet.. which states of the author, "His world changed when his father contacted an eccentric nutritionist who said he believed Jordan was ill because he was not eating the diet of the Bible."
 
rolleyes  

quincy
Elite Member


Date Joined May 2003
Total Posts : 30976
   Posted 1/26/2009 1:33 PM (GMT -6)   
It only makes sense people who don't have UC to assume food causes problems..what goes in comes out....many on here do..and they have UC.



We don't know all about other diseases, but I would hope we ask the right questions as to not offend those who are in the know of what they have.

Educating people works better..raw to the point information may even have them lose their lunch...at least you can say..see..it's not the food.

q
*Heather* Status..Asacol  (3 x2 daily); flaring /Dec 22, tapered to every 3rd nite..back to nightly (Jan 22)..tapered too fast
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls, Natural Factors Ultimate). @ bedtime
~various digestive enzymes as needed; started Omega 3 
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


mbx5
Regular Member


Date Joined Sep 2007
Total Posts : 365
   Posted 1/26/2009 1:38 PM (GMT -6)   

I love when eating out or eating at someones house and they are having "chicken"....  They know I can eat chicken, but it happens to be spicy chicken soft tacos.....but "you can eat chicken, so what's the problem?"

My close family forgets....I have had this 14 years and my dad still suggests going out to a bar for pizza....gotta love him and I would sure love to have a pizza and a beer w/ my pop, but then he remembers and suggests having chicken - which is deep fried or breaded deep fried smothered in UC irritation fuel....




34 yr old male. UC for 14 years. Started left-sided, most recent scope shows pancolitis. 35mg pred (as of 1/20/09), 12 pills Asacol per day, 1mg Atavan per day (anxiety) when needed, Fish oil pills, Flax oil pills, Culturelle probiotics, Multivitamin. Recent Endonasal brain surgery to remove non-cancerous hormone producing tumor on pituitary gland (and I am still more afraid of my UC!!) "I poop in the woods because I can"


EdwardC
Regular Member


Date Joined May 2008
Total Posts : 48
   Posted 1/26/2009 2:08 PM (GMT -6)   
Thanks for the input everyone. Now I know that I am not alone in this. Oh and I am not a violent person but sometimes, Ka-Pow!! LOL.
Mild pancolitis with some diverticular pockets diagnosed in April '08
Currently on 400 mg Asacol X 6 per day


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted 1/26/2009 2:11 PM (GMT -6)   
Lol....I'm with all of you...totally understand!

Carol

Remicade - will have my 25th infusion on November 26 
Vitamin B-12/Biotin, Probiotics
 
Co-Moderator for the UC Forum
 
 


Bennie
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Date Joined Nov 2006
Total Posts : 552
   Posted 1/26/2009 2:19 PM (GMT -6)   

Someone here once mentioned that the next time you get someone who "knows" all the answers to tell that person to contact CCFA (or any other important medical foundation) because they haven't been able to find a cure so they would surely like to hear from the know-it-all!

 


--Mom of bratcat (17 years old) and nonamejames (20 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Flared Fall 2006, Fall 2007, Spring 2008
Asacol, Rowasa, hydrocortisone enemas, prednisone, 6-mp, Remicade
7/3/08-Step 1 j-pouch surgery and no more meds!
11/10/08-Step 2 reconnect!
 
Son nonamejames was diagnosed with Crohns in Spring 2008
Asacol, Pentasa, 6-mp


Kiss520
Veteran Member


Date Joined Jun 2008
Total Posts : 742
   Posted 1/26/2009 2:32 PM (GMT -6)   

I always leave the "cause" explanation very vague by simply saying that UC can be caused by a number of factors, some of them unknown.  End of story. 

(I still have no idea why I have it.  None of the "causes" I've ever read about have been likely for me.)


Katie, 30.   Chicago 'burbs.
DX:  Pancolitis as of 9/08 (Proctitis as of 1/08)
Current Treament:  Spinach/Sunflower Seed Diet
Previous Treatment:  Canasa suppositories, Cortifoam, Prednisone, Colazal, Symex DuoTabs, Rowasa, Bentyl, Cortenema, Asacol, Iron, Zoloft, Acidophilus.
Status:  Remission
 
 
 
 


minnUCsince'89
New Member


Date Joined Jan 2009
Total Posts : 2
   Posted 1/26/2009 2:52 PM (GMT -6)   
I think, at least the people that I know, really don't have a clue of what really UC is.  I mean they are not any tv commericals for Asacol/or anything for UC.  Good luck. :-) It has gotten better for me, through diet and the right amount of meds.

MinnUSsince'89

Asacol and one a day multi vitamin


P-Fit
Regular Member


Date Joined Jun 2008
Total Posts : 419
   Posted 1/26/2009 4:56 PM (GMT -6)   
MY own mother claims to have had UC when she was younger but "grew out of her sensitive stomach". I don't even talk to her about my symptoms anymore. People react to my UC the way they do to my migranes ("oh you have a headache" and "oh you need to lay off spicy food"). Sometimes I get tired of trying to explain so I just not talk about it to people.

Dee-38yrs old 
Diagnosed with UC in 2004-PTSD/Panic Disorder/Depression in 2007 & Fibromyalgia 2008
750mg colozal 3 pills 3x a day, .750mg clonazepam, 7mg Lexapro
1,000mg canasa suppositories (PM),
 Fioricet-Migraines, Nexium 40mg(Heartburn/GERD), Triple Strength Fish Oils
Colonoscopies-4
Upper GI and Bowel Series 11/08


qsam6
Regular Member


Date Joined Nov 2008
Total Posts : 90
   Posted 1/26/2009 5:51 PM (GMT -6)   
The best thing I ever did since I was diagnosed with UC was taking a job at a hospital. It is a teaching hospital so I can access the latest information on my condition and I am surrounded by people who understand. Since UC is so rare they seem interested in my condition. It is also the only hospital that was able to give me the proper diagnoses and treatment, I was misdiagnosed for years by others.

kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 1/26/2009 5:59 PM (GMT -6)   
Not so rare - healthcentral.com says....
"Approximately million people in the United States have IBD.
about half a million have ulcerative colitis.



Men and women are effected about equally."

Only thing I can say is so many never talk about it and we don't see it so we are not aware there are so many with IBD and Crohns. ElaineNY
68 yr. old granny
New diagnosed with proctosigmoiditis - 6/2008
 Colonoscopy 10/28 showed only 2 cm. left to heal in rectum - going to try Proctofoam first.
Probiotic Align, Prilosec for GERD
Inderol for hypertension,Xanax,Lipitor, multivitamin, calcium w/D, Tylenol
January 9 - doctor changed me from Protofoam to hydrocortisone enemas for two weeks - wish me luck.
 
 
 
 
 


ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 1/26/2009 6:03 PM (GMT -6)   
I've worked in the medical field since I was 15 and I agree, it's so great. They're always understanding and I never have an issue when I need to take a day off or run to the bathroom a lot. All I have to do is tell them I have UC and that's it.

Female, 23, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in femur head & lumbar spine from long term prednisone use...

Current Meds:
Lexapro 10mg, Azasan 100mg

 
 


subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 1/26/2009 6:09 PM (GMT -6)   
I've never had an issue except with my last boss. When I asked to take some time off due to my Colitis coming back, she hounded me for hours and hours (literally). It was so bad that my Colitis flareup got worse, not better. I should have just called in with the flu.
Joy - 47 yrs and counting
Diagnosed w/ UC Dec 06 (also have IBS)
Currently in remission

Lexapro (for stress)
Probiotics
Vitamins (a whole bunch of them)
Anti-inflammatory foods: turmeric, seaweed, garlic...
Avoid: anything with high-fructose corn syrup, foods high in fructose, artificial sweeteners

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