Posted 1/10/2008 9:41 PM (GMT -7)
When I was first diagnosed, I had lost sooooo much weight, people couldn't help but ask why. I told them (my secret drama queen side).

I've never hidden it from anyone...because eventually it somehow came up.
I don't care who knows.

I'm not in a position that it interferes with my job and when I worked full-time, I was off maybe twice because of it.

quincy
*Heather*Status: mini flare Dec 28... increased enemas to nightly
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....bromelain 1 - 2x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!

Posted 1/11/2008 2:51 AM (GMT -7)
I would never deny having UC. eVERYONE IN MY FAMILY AND FREIENDS KNOW I HAVE IT. It's just whenyou are sick for soo long you get fed up telling people you are sick. Now i just get on with it.I must stress that i'm very pro-active in telling people about this condition, i just seem to handle it better myself when i keep my bad days hidden.
                                     keep the faith 

         asacol/proctifoam/Zoton (lansoprazole)/propranalol



        http://www.myspace.com/martybuzz1<FONT]

Posted 1/11/2008 3:01 AM (GMT -7)
I'm with sodbuster19. If people ask, I tell them. If they ask questions, I answer in basic terms.

If they don't know what is right away, I tell them its somewhat like chrons and it seems if they don't know what colitis is, they know of chrons... Most people in Australia seem to know what at least one of them is... the usual response is "I have a friend/relative/workmate with that...".

So yeah - I agree with sodbuster19. I don't stand on a box and scream it to the world, but if people ask questions, I give concise factual answers in the hope that it will help break the taboo. The increased awareness will hopefully help the next generation of UCers come to terms with their diagnosis a little better if they don't need to worry about their family/friends/work not understanding.
"We are dreamers, shapers, singers and makers..." - Elric, elder Technomage
    - 2xColazide, twice a day; 1x6-mp twice a day; 1xAbatacept 10mg/kg per month;
    - 1xZinc per day, 2xScoop of Sustagen Sport per day;
    - 1xBIOCeuticals UltraBiotic 45 per day, 1xBIOCeuticals SB FlorActiv per day;
    - 1xHeaped teaspoon of Metamucil smooth orange powder 3 times a day.

Posted 1/11/2008 4:20 AM (GMT -7)
I am incredibly open about my UC. I tell everyone. I don't offer it but if it comes up I have no problem explaining things. I think more people should be aware of conditions that may not present themselves in a physical way. The most common response has been "but you don't look sick!"

I do try to stick to basic terms "ulcers in the colon" ect. when explaining and any oh poor girl comments are combated with an it could be worse kind of answer. My mom and husband worry more than I do about me. They are the two people who really, really know how UC affects me. They have seen the writhing on the floor and messed pants.

Being so open has paid off. I am a sub ina middle school and one teacher i had been subbing for alot and I got to talking and it turns out she was in the middle of being diagnosed with chrons. They gave her pred and explained nothing to her. I made a new friend and was able to help someone (the first thing i did was giver her healingwell.com)

I feel that if I explain things and am willing to answer questions then fewer people will have misconceptions. My mom has even started handing out my number to people she meets who have digestive problems so that I can explain tests and share my story with them. She is a little proud of me for haveing UC. It's strange but she sees the courage we all have and is proud.
Kelly, 29

Left sided UC diagnosed 1/98 age 19, Pan colitis diagnosed 1/07
Currently on 4x3 Asacol, 15 mg pred. until immuran kicks in...
75mg Imuran starting 8/23/07---bumped to 100mg 10/8/07--bumped to 125 11/14/07...
Prontonix once daily for acid reflux, zofran twice daily for nausea

Posted 1/11/2008 5:47 AM (GMT -7)
I don't advertise it, but I am not embarrased to say I have it. My coworkers know I have it and some close friends, but that is it.
 
 
Dx:  UC Proctitis 2006
 
Meds:  None so far. Garlic works to ease flares. My GI laughed when I told him and said it was just coincidence.
 
Diet:  Regular fresh garlic, Biobest yogurt daily, Omega 3 supplements, very limited junk food, carbs and processed food, low fat diet.  Lots of fresh fruit and veggies (limited potatoes). 
 
Added: tumeric and probiotics.
 
 

Posted 1/11/2008 7:26 AM (GMT -7)
I used to be vauge like Sherry was, until my horrible flare this sept b/c before that I was never really that sick. I was a shell of myself during that time and I told some additional people and they were/are so worried for me, it was nice but I don't want people worrying.......but it has meant so much to have them there for me and being concerned.

One thing coming up is we are going away with friends (that I am not super close to but they are really nice) and we are renting a big house for superbowl weekend and there are three big rooms with a ton of beds (so we will not have our own room) and I know I am really, really gassy at night and the phazyme doesn't work for me, so I am worried about that. I'll figure it out somehow....
Beth, 32
Major Flare Sept/Oct 07 ~ working on remission almost there
UC Diagnosed March 2000 (30 cenitmeters)
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Probiotics.
Minimal Change Disease (Kidney Disorder) Diagnosed Sept 2007
Prednisone 60/40mg alt days 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Potassium 600mg 2xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.

Posted 1/11/2008 7:43 AM (GMT -7)
I must admit, if someone who knows about my condition gets pushy with me - like obnoxiously insisting I try some food I know I can't eat, or getting snippy about my stepping out of a meeting to go to the bathroom - I tell them something like "I could eat that, but it would give me constant bloody diarrhea."

There's just something about those words "bloody diarrhea" that backs them off. Fortunately, I've only had to do this a couple of times.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Intolerant to Asacol and rectal mesalamine preparations.
On Prednisone then Entocort 2001-2006 with only short periods off. 
Current meds are Colazal, Azathioprine Remicade, Nature's Way Primadophilus Reuteri.
In remission since April, 2006. Remicade has been my wonder drug.
 

Posted 1/11/2008 8:23 AM (GMT -7)
Yeah, after having it for so long - you just get tired of having to explain everything. So I understand where you're coming from Marty.

Judy, that reminded of another pushy person that I confronted once. I mean I like her and all but.....anyway, we were at a huge fund raiser and we were outside mingling when a waiter came up to us with hor'deuvs (sp?). This woman takes one and the waiter brings the tray to me and I say no thank you. They were mini spinach quiches and I was in the middle of a flare. She then puts her hand on her hips and says "Oh yeah? Well why not?" I told her that it wouldn't agree with me so she tried getting me to try just one. I wasn't feeling that great plus I was cranky so I told her that I have Uc and I don't feel like peeing blood out my tush! Her mouth just sort of opened and apologized because she knows what Uc since she's a nurse.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc -'92 - Colazal (9 daily), 6mp (50-100mgs), Colocort, Prilosec, Biotin, Forvia, Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa** ~Allergies - Allegra & Singulair
~Secondary Reynauds Syndrome - '04 - Norvasc~Fibromyalgia - '06~No meds
To help Healingwell - click here: DONATE
http://www.myspace.com/82595818
"The quality of my life depends on the quality of my thoughts."
 
 
 
 

 
 

Posted 1/11/2008 9:14 AM (GMT -7)

I actually just "came out" to a couple of coworkers just the other day and they were *really* supportive. I decided the time had come because I was occasionally showing up late for work (mornings are the worst for me) and was always leaving my desk for the bathroom. Both coworkers thanked me for my openness and said they would do whatever they could to accommodate my needs. I knew they were nice, but I was still suprised by how well they reacted!

Otherwise, the only people who really know are my immediate family, my partner, and two friends (one who is in the process of being diagnosed with IBD). While I don't try to hide it, it doesn't come up that often. I'm all for making it less taboo, though my partner seems to be more secretive about than I am, because he's worried about embarrassing me. Like, he's told a couple mutual friends that I have a chronic illness, but refuses to tell them which one! I told him I really don't mind people knowing, but oh well... It's better than having him blab it to the world I guess.


Erin, 25

Diagnosed with left-sided UC June 2007
Flaring since June 2007

Asacol 400 mg x 9
Prednisone 20 mg (since 01/09/08)
Iron, Multivitamin, & Probiotic Yogurt
Zoloft 75 mg (for depression/anxiety)

Posted 1/11/2008 9:27 AM (GMT -7)
I don't recommend telling anybody at work. Though it's illegal, you still run the risk of getting fired to get your expensive treatments off the company's insurance rolls.
12 Asacol
100 mg Imuran

Posted 1/11/2008 10:31 AM (GMT -7)
I understand too Marty. I used to hide it, as a matter of fact, I didn't tell my family for quite some time. I didn't want them to worry about me, but it's good that I did since my nieces are showing some signs of intestinal problems. They now feel comfortable talking to me about what they are experiencing. Also most of my coworkers know and are very accepting of it and a lot of them come and tell me things they wouldn't anybody else because they know I'll understand. So it's all good. I don't like to whine to anyone either that I'm not feeling well, but those closest to me know right away without me saying a word.
Carol

Remicade - will have my 20th infusion on February 21.
Imuran - 100 mgs....taken before bedtime
Vitamin B-12/Biotin, Probiotics

"Life is short -- make fun of it"
 
Co-Moderator for the UC Forum
 
 

Posted 1/11/2008 10:33 AM (GMT -7)
To be honest...I really don't give a pooh...I tell everyone, even strangers if I'm in the mood. On the job most of my friends know, BUT they don't know the full extent of the harm this disease does...so long as I perform at work, no one cares or even notices. But if I was to drop dead today, they might say, "was it the colitis?"

NBT


Diagnosed with Ulcerative Colitis January 2007
Meds: Remicade, Primal Defense Ultra, Multi-vitamins (also iron, B12, Magnesium and Zinc), Flaxseed/Natures Bounty Fish Oil
Swanson Ultra Caprylic Acid (natural anti-fungal) 600mg x2 daily
Carrot & Garlic supplements (natural anti-fungal) x2 daily
Currently taking herbal meds in the search to regain full health.

Posted 1/11/2008 10:37 AM (GMT -7)
If my company let people go because of their illnesses and expenses of medications, most of our company would be gone due to the aging workforce we have here. Wouldn't be good for business! :-)
Carol

Remicade - will have my 20th infusion on February 21.
Imuran - 100 mgs....taken before bedtime
Vitamin B-12/Biotin, Probiotics

"Life is short -- make fun of it"
 
Co-Moderator for the UC Forum
 
 

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