How do you explain this disease to others?

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fitmom00
Regular Member


Date Joined Mar 2008
Total Posts : 113
   Posted 4/8/2008 5:38 PM (GMT -6)   
I was put in a difficult position today at work. Part of my job is to meet with local caterers and determine if they are a good fit for my company's services. Often I am asked to do a tasting, where the caterer will bring out samples of some (or all!) of their food and have me sample it. I feel awful b/c they are so proud of their food and it's such an insult to turn it down. I'm not confident enough yet to say "I have a gastrointestinal disease..." but I don't know how to politely tell them "uh, if I eat that, I'll be poopon' blood for a week.." I thought about saying that I have severe food allergies or something? Or maybe just that I'm on a very strict diet from my doctor? Any ideas? This used to be my favorite part of the job!!! It also doesn't help that on days when I have appointments I starve myself b/c that so far is the only solution I've come up with to keep me out of the bathroom long enough to leave the house. So I'm usually ravenous!

Renee
Diagnosed Summer 07 w/ UC
Current Meds for flare: 4 Lialda, tapered to 15mg Prednisone, Rowasa
Hopefully on the mend!

dakotagirl
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Date Joined Apr 2006
Total Posts : 3402
   Posted 4/8/2008 8:29 PM (GMT -6)   
What a major bummer! I LOVE food and that part of your job would have such temptations for me. (thank goodness this evil flare hasn't hurt my appetite)

Could you tell them you have an ulcer? There are lots of things that people with ulcers - or GERD - can't eat. Sometimes the vague term "stomach issues" is enough to get people to understand.

Just add that everthing smells divine and it's really tough to stay away from those foods.

Is there some "safe" food that you have? That you could taste a wee bit of the offerings and then eat this "safe" food? Mine is usually french bread or bagels. They seem to add some "padding" to the offensive foods.

Last thought - maybe an immodium on just that day? Maybe even a half dose would help you. But keep in mind - if you're really not comfortable eating the food - don't stress yourself that way! Maybe a "helpful" coworker would like to taste test for you.
Pan-colitis and GERD diagnosed May 2003
Osteopenia diagnosed Feb 2006
Status:  Flaring :(
 
40mg pred, Asacol 12 per day,  Azathioprine 75mg, Rowasa, Canasa, Aciphex, Forvia, and Pro-Bio
 
Co-Mod for the UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate


sirpenguin45
Regular Member


Date Joined Apr 2008
Total Posts : 29
   Posted 4/8/2008 9:26 PM (GMT -6)   
I understand not being able to explain to people what I have. I say that my stomach and intestines are inflamed, and usually they don't ask any more questions. Even my girlfriend doesn't know exactly what is going on because it's embarrsing. SOmetimes I tell people that I have Chron's beacuse more people have heard of that.

FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 4/8/2008 9:34 PM (GMT -6)   
Digestive disorder usually does the trick... I can't eat it because I can't digest it works.
26 Year old married female.  Diagnosed w/ CD 3 years ago, IBS for over 10 years before that, which was probably the CD.  Currently on Pentasa 4 pills/4x day, hysociamine prn, nexium, and ortho evra.  Good times!!!
 
 


bookworm21
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Date Joined Mar 2008
Total Posts : 1766
   Posted 4/8/2008 10:05 PM (GMT -6)   
Yeah, I'm kind of going through the same thing. I have to tell my suitemate for next year that I'm not going to share the suite with her because I need a completely private room and bathroom. I'm not sure what I'm going to say yet. Maybe I'll just leave at that I've been sick quite a few times the last couple months and leave it at that?
 


bluepurl
Regular Member


Date Joined Feb 2008
Total Posts : 56
   Posted 4/8/2008 10:18 PM (GMT -6)   
I think you can get away with "digestive disorder" and that would be enough to explain why you can't do something and also head off any additional questions. I've been using that at my job to explain my lateness, time off, and midday disappearances, and no one has asked for more info. I also use it to explain to my teammates why I miss games and can't camp out. it's true enough without going into gory details.
Get me a box of kittens, stat!
28 year old Jersey Girl
Asacol x 12, nulev x 4, mesalamine at night
Thought it was IBS since 2002. Diagnosed left-sided UC 4/08. Starting SCD after Passover. Determined to get into remission before paintball season ends :D


78SilvAnniv
Regular Member


Date Joined Apr 2008
Total Posts : 289
   Posted 4/8/2008 11:14 PM (GMT -6)   
"Well, see...I've got this crappy condition called...."

I do not taste things at the Box Stores when they do free-samples. You know, where many people graze through their shopping trip? When they ask, I tell them I have severe diet restrictions and I'm sorry, but I cannot try thier samples.
You can be honest without including embarassing details.
You can be up front and still keep your dignity. "I have severe diet restrictions for an internal (or digestive) problem and I'm sorry, but I cannot taste your samples." I liked the suggestion of offering they smelled wonderful. How about "...problem and I regret that I cannot taste your samples because they smell fabulous."
I have the ability of single-minded determination and accurate project focu....Hey, look, a cat!
 
UC is pretty darn crappy, but if you can't laugh at yourself, you'll cry. 
I'd much rather laugh.


jamo0001
Regular Member


Date Joined Apr 2007
Total Posts : 75
   Posted 4/8/2008 11:17 PM (GMT -6)   
"Due to some digestive issues, my physicians want me to keep to a very strict diet."

That's the gist of what I usually say.
James

21 yrs old, diagnosed severe pan ulcerative colitis 2 Mar 2007
Hospitalized 27 Apr-5 May 2007
Remission since 4 July 2007
Asacol (mesalamine) 400 mg x 12 daily
Remicade <--first infusion on 3 May 2007; currently once every 8 weeks
Imuran (azathioprine) 50 mg x 2 daily
Eating fruits and vegetables like there is no tomorrow...
"God bless Remicade!"


theklep
Regular Member


Date Joined Nov 2007
Total Posts : 75
   Posted 4/9/2008 4:08 AM (GMT -6)   
As you become more comfortable with the disease it gets easier. I just tell people I have Ulcerative Colitis and it is a chronic colon disease. If they ask for details I start with the fun ones like urgency, and the all oldie but goodie stomach cramps. But I am confident in myself and I look at the bright side. Sometimes people I meet aren't worth the trouble so I usually tell them something along the lines of I'm Kosher or Vegan. Usually always works and you seem very healthy in that case. Good luck. Its not easy thats why were here to support you. Again cannot thank everyone here on the board for their continual help and encouragement.
Jeff, 23, Diagnosed July 2007 probably had it since 2005 but no real symptoms till July 2007 *Update 3/25/08: Entire Colon UC*
Lialda - 2.4mg 2x Day
Rowasa 1x (for spot treating and flare ups)
Centrum Multi-Vitamin 1X Day
Probiotics (Started Recently During a Long Flare Seems To be Working Wonders)
Lexipro- 2x Day 10Mg


fitmom00
Regular Member


Date Joined Mar 2008
Total Posts : 113
   Posted 4/9/2008 7:38 AM (GMT -6)   
You guys are the best. Thanks for the great suggestions. Does Immodium really help w/ UC? I guess I never thought to try it. I have a huge presentation today at 12:00 that I'm freaking out about, so I'm going to take some and pray that it works. I'm already having a rough day w/ my tummy. :( Thank the Lord 90% of my job is from a home office!!!

jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 4/9/2008 8:32 AM (GMT -6)   
I wouldn't even give them that much information. "It looks and smells wonderful, and I wish I could taste it, but I'm on a very restricted diet." Why you're on the diet isn't their business or concern.

For people I work with every day or see regularly, I tell them I have Ulcerative Colitis, and that it's a disease that causes many ulcers in the large intestine along with pain and bleeding. That's why some days I'm not up to my usual energy level and I always watch what I eat.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
The information I share on this forum is based only on my own experience and study. It is important to consult your health care provider when making health-related decisions.


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 4/9/2008 8:38 AM (GMT -6)   
Immodium can help. It's not a long term solution. Beware of the possible rebound the day after.

Let us know how it goes :)
Pan-colitis and GERD diagnosed May 2003
Osteopenia diagnosed Feb 2006
Status:  Flaring :(
 
40mg pred, Asacol 12 per day,  Azathioprine 75mg, Rowasa, Canasa, Aciphex, Forvia, and Pro-Bio
 
Co-Mod for the UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate


ddneilson
Regular Member


Date Joined Mar 2008
Total Posts : 21
   Posted 4/9/2008 11:00 AM (GMT -6)   
fitmom00 said...
You guys are the best. Thanks for the great suggestions. Does Immodium really help w/ UC? I guess I never thought to try it. I have a huge presentation today at 12:00 that I'm freaking out about, so I'm going to take some and pray that it works. I'm already having a rough day w/ my tummy. :( Thank the Lord 90% of my job is from a home office!!!


Immodium's pretty hit & miss for me. Sometimes it'll work great, sometimes it'll stop me having to run to the washroom but I'll get painful intestinal bloat that I can't seem to release, and sometimes it just flat-out does nothing.

As for telling others, it depends on how well I know them. If it's just someone I'll likely never see again, I just stick with some variation of "digestive problems." If it's someone that I know then I'll usually just say that I have an intestinal disease that's related to Crohn's (seems more people know of Crohn's but not many know of UC), and so I have a restricted diet and often have to run to the washroom at a moment's notice.
Universal Colitis since 09/2003
Current Meds:
Asacol (1200mg 2x daily), [occationally alternate Asacol with Pentasa]
Prednisone (10mg, tapering),
VSL #3 (1 packet/day),
Calcium Supplement,
Multivitamin

Post Edited (ddneilson) : 4/9/2008 10:04:30 AM (GMT-6)


UC since'76
Regular Member


Date Joined Dec 2006
Total Posts : 77
   Posted 4/9/2008 11:09 AM (GMT -6)   
I tell people I have ulcerative colitis. Virtually everyone I have told that has never heard of it. I feel like a freak.

Ulcerative Colitis since about 1976
Pan colitis since at least 1994
 
Never had a flare until MD gave massive dose of Magnesiun while hospitalized for bronchitis.
 
During subsequent hospitalization for the flare, GI looked me straight in the eye and said "don't ever stop using Asacol."
Insurance company thought otherwise so I'm on no meds.


fitmom00
Regular Member


Date Joined Mar 2008
Total Posts : 113
   Posted 4/9/2008 1:27 PM (GMT -6)   
Well I made it thru the presentation!! I took 2 Immodium along w/ my regular meds and so far it's working. (Although I didn't eat anything all day which also helps but gives me a raging headache. I'm so tired of this disease I feel like I'll do anything! I came up with something on the fly today though and it worked ... I cater in large meals for these presentations and as everyone was eating, someone asked me why I wasn't fixing a plate and I told her I had a restrictive diet. She asked why and I said, "oh, I'm just a health nut." -- Which works b/c I am sort of a health nut! She just smiled and said "Wow that's great that you're so healthy!" Oh, if she only knew! LOL!
Renee
Diagnosed w/ UC in August 2007
Current status: Flare

4 Lialda/day, Tapering off Prednisone (15mg), Rowasa at night, Wellbutrin XL


Bigphule
Regular Member


Date Joined Dec 2007
Total Posts : 137
   Posted 4/9/2008 1:38 PM (GMT -6)   
Yes telling people about your UC is... interesting. The way I explain it (if I feel there should be further explination) is to ask them "if they ever bit their cheek and got a sore?" Then tell them I have those on the lineing of my colan. That usually kills the conversation but they completely understand that I'm in a world of suckiness.

Imodium for me has yet to fail. If I need absolutly need to act like someone who has a normal digestive system I take it. I'll pay a small price usually the next day mainly just my normal bm routine gets thrown way off and it makes the morning a bit difficult. But a night out with the new girlfriend is well worth the cost. ;)
Diagnosed UC 12/2007
 
 
Folic Acid 1mg x 1/day ~ On going
Asacol 400mg x 6/day ~ Failed (Allergic)
Prednisone 30mg x 1/day ~ On going recent change 2/26/2008
Sulfasalazine 1g x 3/day ~ 2/26/08 


UC since'76
Regular Member


Date Joined Dec 2006
Total Posts : 77
   Posted 4/10/2008 3:03 AM (GMT -6)   
I have heard people taking Immodium when they get in a tight spot. Then they say they pay for it later. What happens? I am thinking of trying it once in a while.
Ulcerative Colitis since about 1976
Pan colitis since at least 1994
 
Never had a flare until MD gave massive dose of Magnesiun while hospitalized for bronchitis.
 
During subsequent hospitalization for the flare, GI looked me straight in the eye and said "don't ever stop using Asacol."
Insurance company thought otherwise so I'm on no meds.


perach
Regular Member


Date Joined Apr 2007
Total Posts : 116
   Posted 4/10/2008 6:41 AM (GMT -6)   
I am a lawyer and end up at a ton of business lunches and dinners and I always just say that I am on a very restrictive diet. People are generally polite enough not to push further. If they do, I usually just say I really can't, wish I could but my system is like a delicate flower, I really can't push it. Usually they will take the hint.
-currently having a flare
-cortenema, Lialda (4 pills/day), flagyl, cipro, canasa, probiotic, multivitamin, calcium with vitamin d, iron


love4cats
Regular Member


Date Joined May 2007
Total Posts : 458
   Posted 4/10/2008 8:44 AM (GMT -6)   
Depends on who I am talking to. If I don't know them well, I just tell them I have some health issues. If I know them quite well, then I simply tell them I have UC. Some ask for more info out of curiousity, some just leave it. Normally I have to explain, uc is similar to crohnes, then they understand.
 
 
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.
 
Started Meds:  Apr 9 08 500mg 5ASA (salofalk) to ease flare.
 
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.
 
 


fitmom00
Regular Member


Date Joined Mar 2008
Total Posts : 113
   Posted 4/10/2008 11:54 AM (GMT -6)   
The Immodium worked great for me, and I must say even today I'm having a good day. BM's are muuuuuch more solid (I'm guessing after-effects of Immodium) and since I took the 'advanced' Immodium that treats gas, that has been better as well. I wish I had known about it sooner. Although I know it's not a long-term solution, it definitely makes me feel better about those occasions where I have to keep the UC at bay for a few hours!
Renee
Diagnosed w/ UC in August 2007
Current status: Flare

4 Lialda/day, Tapering off Prednisone (15mg), Rowasa at night, Wellbutrin XL


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 4/10/2008 7:28 PM (GMT -6)   
Hooray! I'm glad things worked out :)
Pan-colitis and GERD diagnosed May 2003
Osteopenia diagnosed Feb 2006
Status:  Flaring :(
 
40mg pred, Asacol 12 per day,  Azathioprine 75mg, Cortifoam, Aciphex, Forvia, and Pro-Bio, Calcium, Vitamin D
 
Co-Mod for the UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 4/10/2008 11:25 PM (GMT -6)   
wow, it's like an oxymoron for someone with IBD (or even IBS) to have a job where they have to taste food, that sucks...but I agree with the term "digestive disorder" then if anyone asks you to elaborate (because they may have an idea about either/or IBD/IBS) then for those people you could get a little more detailed IF YOU feel comfortable doing so...with IBD becomming so wide spread these days, I'm thinking more and more are aware compared to even say 10 yrs ago.

I love food too, and a food-tester job would have been ideal if I wasn't a smoker (kills off a percentage of your tastebuds) and if I wasn't and IBDer and IBSer.

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

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