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Ulcerative Colitis
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Posted 10/19/2009 6:41 PM (GMT 0)
I haven't been on in a long time (I've been doing great), but I just had to get on and vent to you guys.

At work today we had ice cream cake to celebrate a late "Boss's Day" One of the women said to me "Jen, do you have any Lactaid on hand? If anyone here would have it, I would bet it was you, with all of your issues with your guts, you know!"

I know a lot of you guys on here deal with IBS along with your IBD, but not everyone does! When I am not flareing, I eat what I want and it does not influence my GI symptoms at all. So she is thinking that I missed 6 full weeks of work, 3 of which were in the hospital, and then spent 2 or 3 weeks phasing in back to my usual hours last year due to irritable bowel? I am a wimp, but not bad of one!

People like her, I am sure, are why a lot of you guys don't even tell your co-workers about your UC.

Sorry, I just had to vent about that and I knew you guys would understand.

Jen O
Posted 10/19/2009 7:01 PM (GMT 0)

So true about not telling some people.

In somewhat defense - I had IBS for many years before UC diagnosis.  Had many tests, etc. and always JUST IBS.  Do you know how really sick one can get with JUST IBS.  Yes, it is not as bad as UC because you don't have the colon inflammation.  BUT - I often had the symptoms of diarrhea (like many times a day) and weak, tired, dehydrated, etc. 

Most people just don't know much about UC.  I tell them "like Crohns disease" and sometimes that helps!

ElaineNY

Posted 10/19/2009 7:17 PM (GMT 0)
What was she thinking? She wasn't, that's all. People are just thoughtless, and if it doesn't concern them they don't give it a lot of attention. What most people other than my family retain is that I have digestive problems and really bad arthritis. They just don't worry about the specifics. It's maddening to us, but it's just human nature.

And even if you did have Lactaid on hand, if she's intolerant, why doesn't she carry her own?
Posted 10/19/2009 7:32 PM (GMT 0)
Argh, so aggravating. People say these things and trivialize the pain and suffering we go through.

When m son was diagnosed with pancolitis at age 13 and the doc had him pulled out of school for the last two months of the year - gosh, more upsetting for me than anything I myself had gone through! - a woman I'd done volunteer work came up to me at a meeting, bright smile, and said,
"Oh, I need to tell you - I had this when I was a kid and I was cured by eating a diet of angel food cake and jello!"
I'm a pretty patient and calm person, but I almost punched her.
Posted 10/19/2009 7:41 PM (GMT 0)
I can add to that! I had jpouch surgery 8 years ago and people still ask me if I have problems with food!!! Just last Friday some stupid, but well meaning, individual asked me how my health was because she knew about my illness and surgery. Like duh, I haven't been sick in over 8 years, what do you think people!!!

Sue
Posted 10/19/2009 9:26 PM (GMT 0)
When people say stupid things to me, I make them repeat it: Excuse me?? And, then again: I'm sorry, what? And again...
By then they have had a chance to realize what a stupid thing they are saying, and I can just watch them squirm.

I do that to my sister all the time...it's always good sport with her.
Posted 10/20/2009 9:57 AM (GMT 0)
or it could be that they're wanting to talk, somewhat nervous asking you about your health in general knowing you have/had serious issues....and it doesn't come out right.
Besides, they may be fishing for someone else....or even themselves.



Not everyone pays enough attention to specific health of others, and it's unfortunate Jen's colleague didn't just ask for the Lactaid and be done with it.
Posted 10/20/2009 11:03 AM (GMT 0)
I've been in a bad flare for several months now, and the people at work know something is wrong. I've also had a few appointments here and there. I've told a few people flat out that I have Ulcerative Colitis, etc. They still say things like, "is your tummy okay now?" Or, after my appointment things like, "are you all o.k. now?" My supervisor recently said, "Oh...it's all in your head!" I replied with, "I wish it was."  When they were going to go out to lunch I was mentioning that I probably couldn't handle some of the foods, etc., that same supervisor said, "Ohhh..you pooorrr babbbyyyy."  Because they keep saying, "how are you feeling today" (not realizing that it is a chronic condition), I've started saying, "I'm completely healed now!!"...or..."it's completely gone, and I'm amazingly cured!"  They look at me kind of puzzled and nervously laugh.

Post Edited (desdwel) : 10/20/2009 5:08:44 AM (GMT-6)

Posted 10/20/2009 12:40 PM (GMT 0)
When I was in the hospital once, someone from my work came in, looked at me with relief and said, "Well, you LOOK pretty good...."

I gave her my sweetest smile and said, "The problem is not in my FACE."
Posted 10/20/2009 2:06 PM (GMT 0)

Generally people do not know what UC is.  When they ask what it is - most don't want to hear!  Blood, mucous and diarrhea not in their vocabulary!  Even my son and wife ask me not to "describe" so much my disease!  YIKES!

ElaineNY

Posted 10/20/2009 2:32 PM (GMT 0)
I agree, it's not realistic to expect people to research it to know exactly what it is, or whether it chronic or can be treated.
I'm sure most people have never even heard of it.

And I would not expect to or even want to hear details of people's health problems, so we should respect that, too. I'm sorry you are going through this, is all the conversation that needs to happen. I guess I expect everyone else to be as private about their health as I am. (I'm the one who would not allow any visitors, let alone a co-worker, to see me in the hospital, it's just not dignified).

Again, easier all around just to keep it to yourself.
Posted 10/20/2009 4:26 PM (GMT 0)
I never tell anyone. That includes my parents.
Posted 10/20/2009 5:41 PM (GMT 0)

I am sorry you can't get support from your family.  I have two sons who are 45 and 46 and I would feel terrible if I thought they kept an illness from me no matter what.  I love those boys and they came from me and I would respect their not wanting to tell everyone and be quiet but I would want to be able to support them when/if they needed it.

ElaineNY

Posted 10/20/2009 5:45 PM (GMT 0)
My parents can't be trusted. They would tell everyone they know. I don't need my illness being the talk of the town. I don't live nearby. It is better being distant.
Posted 10/20/2009 5:49 PM (GMT 0)

Sorry - wish you had a better relationship with your parents - it is worth a lot!  Mine died at age 92 and 96 and I loved them so much and of course I did not tell them every little thing - but somethings I NEEDED to talk to them about - this would be one of them!

ElaineNY

Posted 10/20/2009 6:49 PM (GMT 0)
We have a good relationship, I just prefer not to tell them too much. I used to tell them everything and it turned into everyone I knew knowing things about me before I had the chance to tell them because my parents were off gabbing to all of their friends. I learned my lesson and now I don't tell them anything too personal. I tell them about vacations, plans, work... I don't tell them about my health. I tell my siblings more, they don't gossip.
Posted 10/20/2009 7:17 PM (GMT 0)

That is good!  I do gossip unless they tell me not to tell anyone and then I respect that.

ElaineNY

Posted 10/20/2009 8:38 PM (GMT 0)

Jen O said...
One of the women said to me "Jen, do you have any Lactaid on hand? If anyone here would have it, I would bet it was you, with all of your issues with your guts, you know!"

I know a lot of you guys on here deal with IBS along with your IBD, but not everyone does! When I am not flareing, I eat what I want and it does not influence my GI symptoms at all. So she is thinking that I missed 6 full weeks of work, 3 of which were in the hospital, and then spent 2 or 3 weeks phasing in back to my usual hours last year due to irritable bowel? I am a wimp, but not bad of one!
Jen O

It is true that most people don't understand what IBD is. When I bump into someone who doesn't understand the severity of the disease, I'll let them know that I loose tons of blood when I get a flare. Only then do they understand the severity of the disease. They don't always understand how I loose this blood, but they do understand that loosing tons of blood is hard on the health.

Try not to feel too hurt by what your co-worker said. When I first got into remission, I had tons of Lactaid on hand. If your co-worker asked me if I had any Lactaid on hand, she would have been right. And then your co-worker said "with all of your issues with your guts." So she understands that you have a lot of issues with your guts. She didn't say that you missed six full weeks of work, three of which were in the hospital, due to being a wimp.
Posted 10/20/2009 8:45 PM (GMT 0)

songlady said...
When I was in the hospital once, someone from my work came in, looked at me with relief and said, "Well, you LOOK pretty good...."

I gave her my sweetest smile and said, "The problem is not in my FACE."

This is an interesting comment. When I had my last bad flare and lost tons of blood, my face was as white as a ghost. It took at least six months for the color to come back. When friends asked me how I was doing, I would tell them that I was doing great and point out that my face was no longer so white anymore.
Posted 10/20/2009 8:51 PM (GMT 0)

kops2da said...
Generally people do not know what UC is. When they ask what it is - most don't want to hear! Blood, mucous and diarrhea not in their vocabulary! Even my son and wife ask me not to "describe" so much my disease! YIKES!

ElaineNY

You're so right, Elaine.

When I talk about losing so much blood, people usually don't say too much after that. They look like they are afraid to ask too much once they understand the severity of the disease.

They also don't want me to describe too much. Once they get it, they don't need me to tell them all the gross details.
Posted 10/20/2009 9:00 PM (GMT 0)

notsosicklygirl said...
My parents can't be trusted. They would tell everyone they know. I don't need my illness being the talk of the town. I don't live nearby. It is better being distant.

I understand that! My mother blabbed, to the parents of my high school friends at bridge club. I was so mad. It was the first time I ever scolded my mother.
Posted 10/20/2009 9:08 PM (GMT 0)
A well-known man in KC dropped out of a political race and revealed that the stress had made his UC or Crohns (I can't remember which) flare, which meant lots of bloody diarrhea and losing weight...and a local columnist scolded him for TMI.

I have to admit, I thought it was generous of a public person to talk about the disease (and help inform) and I was angry with the reporter.

Doesn't mean I will do it.
Posted 10/20/2009 10:26 PM (GMT 0)
Where I live people seem to know what Crohns is. When I tell people that I'm on pred they usually know the severity of being on it and ask why. I tell them I have UC and if they ask what it is I tell them it is similar to Crohns and if they don't know what that is, I just tell them I get ulcers throughout my large intestine.
From that they seem to understand how bad it is and what symptoms comes with it.

I don't seem to get rude comments from other people. Most of the time people are wanting to know how I deal with the disease, how it affects my life, etc. To be honest, I'm glad people are asking these kind of questions. IBDs are something that people don't know much about and the more people that understand it the better.

People seem surprised when I tell them that the disease doesn't affect me unless I'm flaring up. They do make fun of me taking "horse pills" but I make fun of them myself, lol.

Although, I'm actually surprised that a lot of people I talk to know what prednisone is and they know that they shouldn't say anything that would tick me off easily tongue
Posted 10/21/2009 1:29 AM (GMT 0)
I tell people I have UC and share my other health issues too, as I find it makes them think a bit about what I may be going through and also hopefully make them think about appreciating their good health.
Posted 10/21/2009 3:27 AM (GMT 0)
Peety, sounds exactly like my mother. They must have abo****ely nothing interesting to discuss if they are discussing our gastro issues. For some reason these are the things people want to flap their lips about. My mom would talk to the same type of people you mention. People from my youth or their parents. Eventually it gets back to me. Why are they like this?? I don't tell her about my relationship anymore either because last time I broke up with a boyfriend she went running her mouth all over town and people were calling me to ask questions. I never tell my mother about money, that always travels fast. She's very proud of anyone who has money so she would have to tell the world every detail of any penny you ever have in your pocket. It's sort of funny but also disturbing. I am happy I set a boundry and learned to keep my mouth shut otherwise the whole eastern seaboard would know my business.
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