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does anyone get annoying advice from family/friends that hurts but you know they are trying to help

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Ulcerative Colitis
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Posted 4/27/2009 5:17 PM (GMT 0)
how do you deal with them. I am in a flare and have been pretty sick and the comments I get. "i looked up your disease and its caused by your diet and stress" " you need to change the way you think" Chinese medicine and mushrooms will cure you" This one is the best "there was this lady who cured herself by talking to her flowers" Help me! although I dont post often I am constantly on this site and many days it has been the only thing that has kept me sane.
Posted 4/27/2009 5:20 PM (GMT 0)
god i get it all the time! my latest is my ex best friend's mom saying it's all about colon health... they make great things to wash out your colon in the health stores.. TAKE HERBS... there are herbs out there that will make everything better! (it wont cure the disease) YES IT WILL!

ugh.
Posted 4/27/2009 5:40 PM (GMT 0)
Oh I get it all the time too... I hope someone will come up with a great response. No matter what I say it always comes out sounding snotty and then I just feel guilty on top of everything else.
Posted 4/27/2009 6:07 PM (GMT 0)
I would tell them what I know, about how this disease is individual, about my reasons for having Colitis and what my treatments are. I would tell them about fecal transplantation, Probiotics, foods I need to avoid, foods I should eat. Once they see I know much more about this disease than them, they become quiet.

I've done colon washes twice. It helped, but not much.

As for mushrooms, I have read that they are good for immunity. However, there are foods that are even more anti-inflammatory. Turmeric is the best anti-inflammatory property in nature. I eat mild curries and rice with turmeric.

As for Chinese medicines, I do think they can help, not just the colon, but the liver. My liver has trouble digesting fructose. I haven't had a chance to look into taking Chinese medicine, because I've been so busy. Plus, I'm not flaring; so there is no rush. I should be less busy in June.
Posted 4/27/2009 6:13 PM (GMT 0)
My sister always says to me "its your own fault for eating chocolate" ! and if im too ill to go out for something to eat my friend will say " oh just go you might be on the toilet in the morning but youll be on it anyway!" they dont realise i pass blood etc, they think its just like eating a dodgy burger in the morning. To be honest no one bothers with me anymore (sob) im a recluse!
Posted 4/27/2009 6:20 PM (GMT 0)
I wouldn't waste breath trying to reason with folks. Simply smile, say "thanks for letting me know" and walk away.
Posted 4/27/2009 6:35 PM (GMT 0)
lol that makes no sense.... you're too healthy to have something without a cure???? ***?
Posted 4/27/2009 6:41 PM (GMT 0)
I don't tell anyone anything because I don't want to hear it. My boyfriend knows and he has mentioned that I don't eat healthy or work out and that is probably why I continue to be sick and feel like hell. I ignore him.

Posted 4/27/2009 6:57 PM (GMT 0)
My mom the other day said... you should try to eat almost 100% gluten free... i'm like yea mom... whatever! (btw i did do the gluten free diet for 3 months when I was originally testing to figure out why my tummy was all messed up and thought it was Celiac... it didn't help...although I do admit I felt happier?) I still don't eat too much wheat though cuz I have some sort of intolerance.

Still I don't eat TOO bad.

I def don't excercise though and I need to. I'm mostly too tired to motivate myself enough to do it. Oh well...whatevs.
Posted 4/27/2009 7:41 PM (GMT 0)
Most outrageous from a colleague who gleefully announced, "What you need to do is deliberately get a tapeworm -and that cures it!!!!" seems he heard it on the radio...
mostly people confuse it wit IBD and tell me that it's all down to stress.
Very difficult to get people to understand that needing the loo 'urgently' can mean as fast as seven seconds, which makes pic-nics, music festivals, boat trips, parties in other peoples' houses, crowded pubs and school concerts a nightmare.
Most recently my pompous arse elder brother told me "Oh, I had that. It was no big deal..." Notice 'had' which I think proves he's both misdiagnosed - and missed the point.
Posted 4/27/2009 8:19 PM (GMT 0)
Thanks so much for all the posts. They crack me up and have made my otherwise downer time fun. ps. talking to flowers doesnt work
Posted 4/27/2009 8:44 PM (GMT 0)

NOPE - talking to my flowers doesn't work - been talking to them for years LOL!

One lady told me to drink Aloe juice.  I know many believe that I have this DD because I am obese.  If losing 80 lbs would cure it I would be there in short time.  Best thing to do is not talk about it much except to those who have to know - you know that "need to know" thing!! 

One woman told me today - "you STILL have colitis - I thought you got rid of that".  Don't I wish!

ElaineNY

Posted 4/27/2009 8:49 PM (GMT 0)

My Mom has been the biggest douc*$ bag about my UC since day one- unless she's the one who's ill, it's never a real problem. She's said everything from "It's all in your head!" to "So you get the surgery & a year later it'll be something else!" to the ever favorite "You're just never happy- there always has to be something wrong!". She just has no clue, none. I finally dragged her to a consult with the head of the GI Department at Beth Israel Hospital in Boston- after listening to the entire appointment, she was awestruck that I had been on so many meds for so long, & that yes, there really IS inflammation & ulcers in my colon & rectum! She also was right there when the doctor recommended surgery- the 3rd doctor to do so. So that helped, but since I backed out of surgery, she's sort of back to her usual crap. It's not like I'm looking for sympathy, but a little empathy would be nice! She's seen my colonoscopy reports, horrific. I'm not really sure what her deal is- and to make it worse, my family & I live with her! I mean, she's a decent enough person day to day, but I don't really tell her much. Especially when I'm having a bad day!

Posted 4/27/2009 9:37 PM (GMT 0)
I do the reverse: instead of talking about it less, I talk about it more.

Think about it. If you meet someone at a party, and they said they can't eat this food or that food, then you might think this person has some kind of a mental issue. But if the person tells you they have a condition in which they could flare and end up bleeding profusely every day for three months if they eat something wrong, then it's a lot more understandable. Nobody wants to bleed profusely out their butt for three months.
Posted 4/28/2009 4:36 AM (GMT 0)
My flatmate used to try and tell me that I didn't need to tkae meds, and "if you don't think your sick you'll get better". I just told him that if I don't take my meds I start pooing blood. He hasn't mentioned it since. I havn't told that many people, the ones I have told just don't really get it unless they've dealt with a serious illness themselves.
Posted 4/28/2009 11:31 AM (GMT 0)
Don't tell anyone you have UC and you won't have to deal with dumb comments. Even my close family know that I don't discuss it. It's so undignified, why would you talk about it to anyone?

(especially when we have HW, where people actually understand)
Posted 4/28/2009 1:31 PM (GMT 0)

Peety - I try not to voluntarily talk about UC but most family and close friends know there is something wrong and ask questions, etc.  They are genuinely concerned - just don't understand.  I have to tell them when shopping or eating out that I may spend some time in the bathroom - they are worried why so I have to explain somewhat.  May be my age, of course, since I am a senior and us seniors always have something wrong anyway!!

ElaineNY

Posted 4/28/2009 1:53 PM (GMT 0)

subdued said...
I do the reverse: instead of talking about it less, I talk about it more.

Think about it. If you meet someone at a party, and they said they can't eat this food or that food, then you might think this person has some kind of a mental issue. But if the person tells you they have a condition in which they could flare and end up bleeding profusely every day for three months if they eat something wrong, then it's a lot more understandable. Nobody wants to bleed profusely out their butt for three months.

I think you can impress upon folks the seriousness of IBD without going into gory detail. Most folks don't want to hear about someone bleeding "out their butt," particularly not in a social situation.
Posted 4/28/2009 4:11 PM (GMT 0)
I dont say much that way it is easier also most people do not know about IBD or think they do which is worse?
Posted 4/28/2009 7:42 PM (GMT 0)
food doesn't cause flares, and it certainly wouldn't cause bleeding from one's butt for 3 months.

You could just say "whatever....when you get it, at least you'll know how to deal with it". or "I didn't realise you did so much research on it...where did you get such valuable information?".

What's the difference of people on here who say the same things? There is stupidity and ignorance all around....either people who don't have UC or people who do.

People believe what they believe, I doube we will ever change it.

quincy
Posted 4/28/2009 7:59 PM (GMT 0)
Most South African doctors are so ignorant about IBD and their advice is just as annoying
Posted 4/28/2009 8:24 PM (GMT 0)

quincy said...
food doesn't cause flares, and it certainly wouldn't cause bleeding from one's butt for 3 months.

You could just say "whatever....when you get it, at least you'll know how to deal with it". or "I didn't realise you did so much research on it...where did you get such valuable information?".

What's the difference of people on here who say the same things? There is stupidity and ignorance all around....either people who don't have UC or people who do.

People believe what they believe, I doube we will ever change it.

quincy

Food doesn't cause Colitis; however, it is possible that certain foods can trigger a flare and they definitely can make a flare worse. For me it's HFCS, foods high in fructose, and artificial sweeteners that usually end in "ose." My body has trouble digesting them. My abdomen makes horrible noises that sound like a thunder storm. I have severe diarrhea. My digestive system is weakened, and I end up flaring.

I got all my three flares after eating HFCS. So for me, yes, certain foods can trigger a flare. They definitely cause me to have severe diarrhea, and all of my flares have lasted at least three months in which I've bled out my butt the whole time.

I'm not the only one in which the wrong food can trigger a flare:

http://www.associatedcontent.com/article/548115/avoiding_your_ulcerative_colitis_trigger.html?cat=70
http://www.everydayhealth.com/ulcerative-colitis/ulcerative-colitis-pain.aspx

Of course, your situation could be different.
Posted 4/28/2009 9:12 PM (GMT 0)
hahahaha... I always get people saying, "Oh, I think I have that! I go to the bathroom all the time!" I'm thinking... I wish it was that easy... They normally confuse IBD and IBS... They have know idea!

I try to educate as many people as I can. It is hard to spend the day talking to flowers if you 1 can't get out of bed, 2 have to work, 3 don't have flowers... :) I usually try to tell people that's great that worked for them... My doctor, family and I have seen different results with different suggestions. I just try to let those important to me know what is going on and what I need from them. Usually, people just want to help but they don't realize how they make us feel...

I also hate when people think because I'm young I have nothing wrong... That leads to questions as to why I am calling in sick all the time, how could I be disabled, "Everybody poops, what's the big deal!"

Good luck and try to keep focused on what really matters. :)
Posted 4/28/2009 11:47 PM (GMT 0)

subdued said...
I do the reverse: instead of talking about it less, I talk about it more.

Think about it. If you meet someone at a party, and they said they can't eat this food or that food, then you might think this person has some kind of a mental issue. But if the person tells you they have a condition in which they could flare and end up bleeding profusely every day for three months if they eat something wrong, then it's a lot more understandable. Nobody wants to bleed profusely out their butt for three months.

But why do you have to say anything about what you can or can't eat at all? Just don't eat it or just don't drink it. "No, thank you." No one will notice or care. They probably won't even notice or care if you use the bathroom every 30 minutes.

The response you suggest sounds like you are trying to shock people, or get sympathy. Really, can't we be more dignified about it?
Posted 4/28/2009 11:56 PM (GMT 0)
people start to wonder when you feel like sh !t all the time
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