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How do you explain UC to family/friends?

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Posted 1/26/2012 4:36 AM (GMT 0)
I have had UC for 15 months now with two full colonoscopies, numerous drugs, allergic reactions and switched doctors four times now....still no one in my family understands this disease. My family seems surprised this is still going on.....or that I am still going to the doctor for this "problem"....I think I need to start handing out brochures. Does anyone else feel this way?
Posted 1/26/2012 4:52 AM (GMT 0)
Yes! I don't tell the majority of people because I hate receiving unrelated advice. Yesterday, I opened up to this woman I know and she told me to start eating flax seed. People think they can cure everything with something simple like flax seed. I appreciate the positive thought but if they don't know what the illness is exactly, perhaps they would be better off not making suggestions. You should send them a link to an article that explains that this illness is chronic and consists of remission periods that do not last forever. I guess I understand people not knowing too much about IBD. If I didn't have it, I'd be in my happy world thinking this is nonexistent. Maybe it is our resposibility to awaken people.
Posted 1/26/2012 5:34 AM (GMT 0)
Brochures are a good idea, as is linking to CCFA's website.

My family can be the same way, especially my dad's family. My bobcia once asked me if I had had any more 'attacks' since moving for grad school. Um, 'attack' implies something acute. And they don't seem to understand that it wasn't something I ate that made me sick or that changing my diet during a flare is mostly to make it less painful. But then, they're mostly scientifically illiterate and my bobcia is the kind of woman who will ask for antibiotics for a cold. My mom's side is better though my grandmother is very bossy despite health issues of her own (notably hashimoto's and aphasia from a stroke she had when I was in undergrad). At one point she basically glared at my parents and basically went 'take her to the hospital' and was furious when I wasn't getting better.
Posted 1/26/2012 6:42 AM (GMT 0)
Its so gross, I really dont want them looking up UC symptoms. Besides I have not had any for 1.5 years. I just tell them food allergies that can put me in the hospital.

Thats all they need to know. It will make sense to them. Every person I tell about UC that is a friend or family thinks its the stomach, thinks its from hard drinking years ago. I can explain its 40 feet away in the intestines and it makes no impact. So simple they all just fall all over it and cannot be divorced from the simple concept - stomach + booze = UC.
Posted 1/26/2012 12:11 PM (GMT 0)
It took me a very long time to tell people exactly what I had. When I was first diagnosed, I was pretty vague on what I had. I remember my MIL giving me odd looks at times. I didn't know what those looks meant until I finally sat down with her and explained exactly what UC was. She threw up her hands and said, "Why didn't you say something sooner?! I thought you had anorexia! Now everything makes sense."

Now to this day, I do not hesitate in the least to let someone know what UC is. The way I look at it is, society has become immune to the shock factor for example look at the things that are on TV now such as Jersey Shore! LOL If someone can't handle talking about bathroom habits, that is their problem not mine. I will not hide what I have, it is not my fault so I am not going to hide it.

So what I did to explain things, was sit down with my family and friends. Explain in detail exactly what UC is; that it's not just a condition that makes you poop a lot but an auto immune disease that can be deadly if not treated properly. I also mention how many other things can go wrong. I found that by using the words, deadly or go wrong that people tend to take it more seriously. Of course, that opens the flood gates for unsolicited advice but hey, at least it is out there! :)
Posted 1/26/2012 2:31 PM (GMT 0)
I try as much as possible to not include food when I explain what is UC.
As UC sufferers we all know diet is important but its not the cause. Well I dont believe so.
But it will stop poeple putting their input about your indigestion problem.

I think most of them think its indigestion and because they all had it at one point in their life they think they can suggest a treatment.

I don't talk about UC to poeple i know little or even some at work.

If I have to explain like I did to my husband or my dad, I say wheres its affected. In my case the first 30cm of my rectum. I say inside its like when you have mouth ulcers but its very condensed and it makes all the daily loos trips more difficult. I explain some symptoms and mainly that if i ask for the nearest bathroom im not into a good position to wait.

I explain as well that mornings as most difficult but if im allowed enough time and privacy I should be fine.

I say thats its chronic and though diet improves a lot your life diet alone cant be held responsable.

I dont go into details like we do here but i say simply as it is. My husband for example came on this site and googled UC on his own out of curiosity. Its up to them at the end.

But I just make sure to say thats its a condition and no way we are responsable for having uc.

that helps a lot.
Posted 1/26/2012 2:47 PM (GMT 0)
It is very frustrating. Most people don't take the time to educate themselves...or LISTEN. That said, family really should, but often do not. I can deal with the average joe not "getting it", but family and close friends....come on. The cold reality with this is that we will find out who are our true friends....and family with this. Sincerity and selflessness can't be taught...its within.

My young son was hospitalized in the beginning of this mess and was in serious condition. Blood transfusions, anemia, morphine, serious drugs, etc. During that time, true friends and family showed up or reached out to help comfort us. Of those, my father and his wife did not. They were instead busy camping, going to movies, etc. This was very difficult for me to understand....bottomline, they are selfish people, and it sucks.

That said, I'm very grateful for the true friends and family that we do have....including this forum.  The ones that matter, understand. 

Post Edited (trojen) : 1/26/2012 10:35:10 AM (GMT-7)

Posted 1/26/2012 3:26 PM (GMT 0)
I've found this easiest way to describe my UC is just to say -it's like the worst stomach flu you ever had.
I have this yearly explanation with my family on why I don't come visit them in Florida, they say "if you'd travel to this warmer climate your "attacks" wouldn't happen."
My reply : "Would you want to travel with the stomach flu" That usually shuts them up..until next year.
Posted 1/26/2012 3:36 PM (GMT 0)
I don't blame outsiders (nonUC) for stupid/irrelevant comments because even UC-ers don't all have the same symptoms. I don't discuss food with anyone becuase even here we don't all agree that food/diet has an effect on symptoms (It does for me majorly).

When asked by someone on a need-to-know basis I explain that it is similar to Crohn's Disease because there has been much more publicity about Crohn's and that some people with UC have their colons removed if their condition is serious enough.

The people that really get to me are people with or had UC who are rude. Someone I once played tennis with had a colectomy due to her UC. She is totally functional but amazingly unempathetic. We were standing at a tray of cheese danish and I said "I wish I could eat one but it would cause problems". She picked one up looked me right in the eye, took a bite and went "Yummmmm". Imagine my thought balloon.

I don't want sympathy from anyone so I tell almost no one unless they are a close friend.
Posted 1/26/2012 3:54 PM (GMT 0)
imagardener2, I know exactly what you mean. I went to a UC support group once only to find it was mostly people who had surgery who wanted to attack anyone who didn't go the surgery route.
Also, my 1st GI had absolutely no sympathy and was downright mean about it saying "if you don't have your colon out, I can't help you at all"
I've found that many (not all) people who have had surgery have crossed a line that theres no return from and like to haunt UCers into having it done.
Posted 1/26/2012 4:07 PM (GMT 0)
When I began having UC symptoms and a frequent need for bathroom stops on social occasions, I found myself apologizing to people for inconveniencing them.
After several years of this and trying to explain my problem to people who mostly don't want to hear it, I have a different attitude.

I guess the turning point was on an overseas holiday when the bus from Heathrow to the cruise terminal did not have a bathroom. I had to make the bus stop at a "loo". Every set of eyes on the bus was on me as I went through the single door into the building containing the bathrooms... ALONE. When I returned, someone actually asked what took me so long and commented that several men also entered and left while I was in there.
I answered (to the entire bus load of people), "I had to pay for the trip somehow." :-)

Now I seldom apologize and I don't try to explain unless someone has had a similar problem (themselves or a close relative). They seem to understand better.

Have to keep a sense of humor...........
Posted 1/26/2012 4:09 PM (GMT 0)
Handing out brochures is exactly what I did. I made sure close family and friends had the information and asked them to read it to help me not have to waste energy explaining it over and over. I was so sick, I just couldn't do that.
Posted 1/26/2012 4:09 PM (GMT 0)

imagardener2 said...
The people that really get to me are people with or had UC who are rude. Someone I once played tennis with had a colectomy due to her UC. She is totally functional but amazingly unempathetic. We were standing at a tray of cheese danish and I said "I wish I could eat one but it would cause problems". She picked one up looked me right in the eye, took a bite and went "Yummmmm". Imagine my thought balloon.

 

LOL, I can picture that. You know, just because  you have UC doesn't mean you can't handle a cheese danish once in a while.

Posted 1/26/2012 4:13 PM (GMT 0)

beatUC said...
imagardener2, I know exactly what you mean. I went to a UC support group once only to find it was mostly people who had surgery who wanted to attack anyone who didn't go the surgery route.
Also, my 1st GI had absolutely no sympathy and was downright mean about it saying "if you don't have your colon out, I can't help you at all"
I've found that many (not all) people who have had surgery have crossed a line that theres no return from and like to haunt UCers into having it done.

 

LOL, how is your GI going to help you if you take your colon out.

 

Well it depends, I think that people that are happy with their J pouch are more apt to coerce you to go the surgery route.

 

And in a way, UC is also a "line that there is no return" at least for the moment. You always have to take non stop meds.

Posted 1/26/2012 4:23 PM (GMT 0)
not really, i am med-free much of the year. And some GI docs are just pro surgery like this guy was. He wanted me to have my colon out within a few months of diagnosis. I often wonder how many of his patients jumped the gun when they might of healed.
I just find that many (not all) people who have had surgery can be very rude and unsympathetic
Posted 1/26/2012 4:24 PM (GMT 0)
oh my god imagardener so true!

I onced for a retail company and they just hired a new district manager.
She was a total but really a total bullier. Every occasion for anything she would give you written warnings, she would also lie about what you said just to mix your mind.

And one day i was very sick at work and she asked me what i had and I told her i have UC but it was manageable. Then she looked at me an whispered me to I have UC. And she had a sneaky smile and looked at me in the eyes and said: Well I had UC, was very sick but you know what... at least im cured now. Im a lucky one who is cured and you obviously not! And she ran to her work. Didnt have a chance to tell her that shes in remission but not cured ahah

And it brings me to an old gynecologist I saw once. He asked me about other medical problems and when I told him I have UC he was surprised and told me: It's strange but you dont seem to me you have UC cause you kept your sense of humour and it seems lots of UC sufferes I met were biter and sad!

And I had a thought about my ex manager and it felt good!

And I think most poeple on this forum still have humour and im glad!
Posted 1/26/2012 4:30 PM (GMT 0)

tournevice said...
She was a total but really a total bullier. Every occasion for anything she would give you written warnings, she would also lie about what you said just to mix your mind.

And one day i was very sick at work and she asked me what i had and I told her i have UC but it was manageable. Then she looked at me an whispered me to I have UC. And she had a sneaky smile and looked at me in the eyes and said: Well I had UC, was very sick but you know what... at least im cured now. Im a lucky one who is cured and you obviously not! And she ran to her work. Didnt have a chance to tell her that shes in remission but not cured ahah

 

 

LOL, ..that's hilarious, where do you get these people. Whispering I'm cured, you're not. LOL

Posted 1/26/2012 4:35 PM (GMT 0)
somedude lol you find lots of caracters in retailing!
I could write an humoristic book or a modern greek tragedy from my experiences!

At the end of the day bitterness is something you shouldnt take on board often cause it doesnt help your UC thats for sure.
Posted 1/26/2012 4:41 PM (GMT 0)
I, too have been confused about the attitude of some of those who have had colectomies. Some seem to be very mean-spirited and insist it's the only answer. Can it be that they are trying to convince themselves that they made the right choice?
Posted 1/26/2012 5:23 PM (GMT 0)

ItsAlwaysSomething said...
I, too have been confused about the attitude of some of those who have had colectomies. Some seem to be very mean-spirited and insist it's the only answer. Can it be that they are trying to convince themselves that they made the right choice?

 

Actually it's a bit of both. I think the people that can control their UC tend to go towards keeping the colon and people that couldn't control the UC go towards surgery.

 

I think the people that had surgery made the right choice in their case. If you can be on constant remission obviously you don't need surgery. I don't feel surgery people are mean spirited.

Posted 1/26/2012 7:07 PM (GMT 0)
Its like you get salmonella poisoning but it keeps coming back.
Posted 1/26/2012 7:16 PM (GMT 0)
ahaha sorry but this one is good the salmonella! Can we had also the solitary worm?
Posted 1/26/2012 8:52 PM (GMT 0)
"How do you explain UC to family/friends?"

From the bathroom, but before you turn on the exhaust fan. :-)
Posted 1/26/2012 9:15 PM (GMT 0)
I tell them that my stomach bleeds internally. It's less embarrassing for me that way.

As for my family, they know what UC is and often try to help me by recommending changes in my diet and whatnot. It can get a little frustrating at times, but they do care about my well being.
Posted 1/31/2012 8:21 PM (GMT 0)
Thanks for the posts! There are some great stories in here! Lol!

Hearing everyone's approach is helpful. I actually explained it to my MIL last night after several failed attempts. I used some of the tips you all recommended like using "key words". I think it was finally starting to sink in....the longevity of it all.....
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