Well meaning advice!!

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jeanneac
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Date Joined Feb 2009
Total Posts : 1812
   Posted 8/20/2010 2:23 PM (GMT -7)   
On top of being really sick lately, I have to listen to the crap that people will spew out of their mouths. I wonder if people think before they speak? Most of these remarks come out of people's mouths who have never been sick a day in their life. It's mind over matter when it comes to your health, blah, blah, blah....... I think it's just stress.......Yea right.....

They don't realize that most of their good health is b/c they have never had to work a day in their life, never had a worry in their life and have excellent genetics like parents and grandparents who lived to almost 100 with very few health problems in their family history. This was from a woman whose never worked a day in her darn life but her poor husband works himself to the bone, has heart issues et........ It's like these people are toxic and enjoy inflicting pain on others to make themselves feel better. Strike another relative off my list that I don't want to see.


Ok, I just had to vent. I am sick and crabby right now. Sorry-:)
d 1/09 with colitis sigmoid colon with some diverticular disease as well
IBS, high BP, fibromyalgia, Mixed Connective Tissue Disease
claritin, diovan, progesterone, VSL#3 probiotic, Vit. D, colazal, omeprazole for reflux.
Blood test positive for Crohn's via prometheus ibd serology panel ASCA
Positive ANA.
Currently on flagyl and it is helping. Have apt with surgeon soon

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 8/20/2010 2:28 PM (GMT -7)   

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 8/20/2010 2:41 PM (GMT -7)   
Have you been to ChronicBabe and looked at the articles in the "venting" category? I think you might like some of them:

http://www.chronicbabe.com/articles/cat/13/
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 14153
   Posted 8/20/2010 2:46 PM (GMT -7)   
Everyone in my family is very healthy and has great genetics and some how I still ended up with this horrible illness.
 
I hate these people who try to tell you that you should be eating or exercising because that would heal your illness. I've tried restricted diets and different fitness routines and I can tell you that straining physically only makes me feel worse and increases my symptoms. People who are healthy will never understand our struggles. I also hate hearing about people's petty problems that they think are significant. Get a terrible illness where you're in pain and running to the toilet 20x a day and see if you care that "john doe" didn't call you back. I am willing to bet you won't care. I don't. tongue
March 2007: Diagnosed with Mild Proctitis - Canasa as needed.
August 2008 - December 2008: FLARE & Anemic - Started Asacol!!
January 2009 - December 2009: REMISSION!! Asacol (9) + Canasa 2x Daily
December 2009 - January 2010: FLARE!! Asacol + Prednisone + Canasa
February 2010 - April 2010: Colazal + Prednisone + Canasa
May 2010 - June 2010: Lialda + Cort Enema + Prednisone : Colonoscopy: Mild / Moderate Active Pancolitis
CURRENT: DOING OK! Prednisone, 6mp, klonopin, Canasa + Vitamin D

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 8/20/2010 2:51 PM (GMT -7)   
Ooh. And here's another one for you:

http://www.butyoudontlooksick.com/boards/viewtopic.php?f=46&t=39103

I'm actually trying to find a brilliant post on one of these sites that I just know you'll love, but am not having much success at this point. I hope you enjoy / relate to these instead.

I.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~

jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1812
   Posted 8/20/2010 3:57 PM (GMT -7)   
Thanks Ivy. I liked the one that said it was "time to create some distance." Those words went through my mind as well. Who needs negative people in your life? I know a few people that lately are just on my s--t list for what they say to me regarding illness/wellness. I just can't be around them anymore and their comments. Another friend told me I'd be better if I took peppermint capsules. Sigh............ It seems the less people know, the more they like telling other people what to do.
d 1/09 with colitis sigmoid colon with some diverticular disease as well
IBS, high BP, fibromyalgia, Mixed Connective Tissue Disease
claritin, diovan, progesterone, VSL#3 probiotic, Vit. D, colazal, omeprazole for reflux.
Blood test positive for Crohn's via prometheus ibd serology panel ASCA
Positive ANA.
Currently on flagyl and it is helping. Have apt with surgeon soon

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 8/20/2010 4:22 PM (GMT -7)   
Yep. Same.

I love the smugness, how they're healthy because of their stoicism and fine moral character; everybody who is sick, is sick because they're lacking in some way, and just need to have a stiff upper lip.

Mind you, listen to those same people moan and go to bed as soon as they get a heavy cold or the flu, or listen to their self-importance if they have some sort of orthotic (sp?) injury.

I feel like yelling at them sometimes: I ALWAYS feel as if I have the flu. Your heavy flu is a good day for me, and look! I'm up and about and doing things. *sigh*
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~

jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1812
   Posted 8/20/2010 4:34 PM (GMT -7)   
Yes Ivy, smug is the perfect description of these people. Oh well, their day of reckoning will be here sooner or later.

Also, my mom used to say "God don't love ugly." Meaning people who are hateful.
d 1/09 with colitis sigmoid colon with some diverticular disease as well
IBS, high BP, fibromyalgia, Mixed Connective Tissue Disease
claritin, diovan, progesterone, VSL#3 probiotic, Vit. D, colazal, omeprazole for reflux.
Blood test positive for Crohn's via prometheus ibd serology panel ASCA
Positive ANA.
Currently on flagyl and it is helping. Have apt with surgeon soon

SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted 8/20/2010 4:45 PM (GMT -7)   
OOH this hits a nerve with me too! As Ivy said they are smug in their good health.
I have one lady client who thinks I will be 'all better' if I take a spoonful of natural honey a day and each time I see her asks how the honey is going - UGH - makes me want to scream and tell her 'oh yeah you were right and Im all better now' smilewinkgrin
"God dont love ugly" smilewinkgrin   that is priceless - I must use this one day.
((HUGS)) jeanneac
Jo
Crohn's Disease, Ankylosing Spondylitis
Current meds: Methotrexate, Humira
Bowel Resection Sept. 07
 
Forum Moderator - Rheumatoid Arthritis

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 8/20/2010 5:08 PM (GMT -7)   
Wot, she gives you stupid advice and then checks to see that you're following it? Now *that* is annoying.

Jo, I haven't forgotten that I owe you an email, and will try to pay up this weekend. Things have been pretty full-on this week, hence little communication.

Ivy.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~

jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1812
   Posted 8/20/2010 5:16 PM (GMT -7)   
You know, it is mostly ignorant people when it comes down to it. To think honey could cure CD or ankylosing spodylitis is stupid. When you have those two diseases, it's genetics for sure. I used to know someone who had both of those together too.

These are people who really have no compassion either. I guess "we" can be "smug" about our compassion, even if it comes from pain and suffering. My husband is a very compassionate person which is very unusual for a straight guy and it's because he's suffered some pain and loss in his life as well. I got sick about 2 years after we got married and most men would have been po'd but he is so supportive. I am lucky! Does that sound "smug?" LOL...

Another one of her sayings that means your "stuff" will come back to haunt you.

"Be sure your sins shall find you" or "chickens come home to roost"

Funny how these things stick with us and really didn't mean much when I was younger. They did kind of make me laugh.

Thanks Sydney Jo!!
d 1/09 with colitis sigmoid colon with some diverticular disease as well
IBS, high BP, fibromyalgia, Mixed Connective Tissue Disease
claritin, diovan, progesterone, VSL#3 probiotic, Vit. D, colazal, omeprazole for reflux.
Blood test positive for Crohn's via prometheus ibd serology panel ASCA
Positive ANA.
Currently on flagyl and it is helping. Have apt with surgeon soon

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 8/21/2010 7:53 AM (GMT -7)   
I hear ya, I do!! I have this broker I work with think if I ate the Raw Food diet I would get better. Yeah, right! I asked him if he was trying to kill me or what!! And I love all the sayings, my Mom had a bunch herself.
Gail*Nanners* Co-Moderator for Crohns Disease 
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1812
   Posted 8/21/2010 8:59 AM (GMT -7)   
Yea, I am sure a broker knows a lot about the GI system. Ha, ha... He could probably eat nails and be fine. Why don't you suggest that next time? I have to keep a lower residue diet as well. It kills me to sit and watch people eat salad, well, and spaghetti, pizza.
Have a good weekend everybody! Let's not talk to any negative people this weekend!!!
d 1/09 with colitis sigmoid colon with some diverticular disease as well
IBS, high BP, fibromyalgia, Mixed Connective Tissue Disease
claritin, diovan, progesterone, VSL#3 probiotic, Vit. D, colazal, omeprazole for reflux.
Blood test positive for Crohn's via prometheus ibd serology panel ASCA
Positive ANA.
Currently on flagyl and it is helping. Have apt with surgeon soon

GDen
Veteran Member


Date Joined May 2009
Total Posts : 703
   Posted 8/21/2010 1:09 PM (GMT -7)   
I hear ya... healthy people take their health for granted.
Cimzia, Asacol

tooth
Regular Member


Date Joined Jun 2010
Total Posts : 337
   Posted 8/21/2010 2:04 PM (GMT -7)   
Uggggh...I hate people like that. That happens to me sometimes when I explain how I was stressed out before I was diagnosed. People ask if all the stress I was going through caused my Crohn's and all the flare-ups. Then don't understand that the Crohn's is always there, stress just makes it worse. Do people really think that I'd want to make myself sick like this?? Or they say "just don't get worked up about x y or z." Easy advice for people not going through whatever it is that I'm going through.

I'm lucky that I work in healthcare so a lot of people know how bad Crohn's can really be and are really sympathetic about it. But some of the worst advice I've ever gotten was from someone who didn't work in the field but knew that I wouldn't need medication anymore if I ate a lot of fiber. Yes, because when my intestines are ulcerated insoluble roughage is going to scrape those ulcers away and make them better.

Healthy people DO take their health for granted...which is fine, but just don't tell me how to cure my disease or how your aunt's cousin's sister-in-law has been med-free for 20 years because she ate pickled beets while doing the tango and you just know that it'll work for me too!
Diagnosed 2002 at 18. Remission for about 7 years. Getting back into the swing of things at 26.

100mg Imuran, 750mg Balsalazide 3x day, Flagyl (death pills. yuck)

Flaring...

Had to abandon SCD...for now.

jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1812
   Posted 8/21/2010 3:18 PM (GMT -7)   
I had to chuckle at your humor, tooth. Hey, nobody can accuse us of not having a sense of humor about our conditions, can they?

BTW, in the middle of my last flare, I swallowed a temporary crown, speaking of things that scrape the intestines.
d 1/09 with colitis sigmoid colon with some diverticular disease as well
IBS, high BP, fibromyalgia, Mixed Connective Tissue Disease
claritin, diovan, progesterone, VSL#3 probiotic, Vit. D, colazal, omeprazole for reflux.
Blood test positive for Crohn's via prometheus ibd serology panel ASCA
Positive ANA.
Currently on flagyl and it is helping. Have apt with surgeon soon

onthecan
Regular Member


Date Joined Mar 2009
Total Posts : 318
   Posted 8/22/2010 4:49 PM (GMT -7)   
Hi Jean don't worry about being cranky I so hear u and we have the right 2 when we r sick,,I got someone in my family just like that with no PHD but knows everything and I mean everything I broke alot of ties with people cause all they did is stress me out more...Good Luck.....~Jen~ tongue tongue tongue
Had Crohns 17 years had numerous bowel resections,fistulas,fissures,hemmies,kidney problems,fibro,arthritis,dignosed at 13 had GI feeding tube,nasal feeding tube,cental lines,ports,4 ruptured bowel emergency surgeries,TMJ,depression,current meds are Hydromorphone,30 ,Hydromophome,8 ,Ketoprofen,100 ,Trazadone,50 ,Lorazepam,10 ,Zopliclone,5 ,atriplyine,75 ,Losac,50 Tylenol Athritis ,B-12 injections ,Iron injections ,Gravol,75 Predisone,5mg ,Humira,40mg once a week.Still looking for the doctor with all the answers if you find him forward him to me please.P.S my bathroom is the nicest room in my house cause i spend so much time there,i am thinking about installing the computer and maybe a hot-dog stand.

Becky77
Veteran Member


Date Joined Dec 2005
Total Posts : 1768
   Posted 8/22/2010 8:33 PM (GMT -7)   
My solution is to say "oh, I did try that for a while, but it made me worse, so my doctor had me stop" It works every time!! Then they don't give advice anymore, because they might make you feel worse! Try it next time and let me know how it goes.

I do find that family is usually the worst for me. My mom thinks I should try every diet my Aunt (with diverticulitis) tries. I can't use the quoted statement above, because she knows what I have and haven't tried. I just nod and tell her maybe, and it makes her stop talking...till the next time...
Becky

32 yr old female-dx with Crohn's in '97 after emergency resection and appendectomy, 2nd resection '05, Bilateral pulmonary emboli 10/09
Currently on Humira, Omeprazole, Effexor, Seroquel, Calcium, Vit D
Coumadin stopped 3/15/10!!!!

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 8/23/2010 12:41 AM (GMT -7)   

ZenaWP
Veteran Member


Date Joined Aug 2007
Total Posts : 884
   Posted 8/23/2010 10:54 AM (GMT -7)   

What gets me the most is when older people say, "you're young, wait til you get my age," and "you're young, you still have your health."  Umm, no, I don't still have my health, and I'm already physically as old as you are. 

One guy in parking lot at work tried to tell me that Noni Juice cures Crohn's (imagine this...he sold Noni Juice).  And I'm not at all knocking religion here but everyone at church had their own "cure" for Crohn's.  One lady called my mom and told her that I would be cured of Crohn's if I took acidopholis (sp?) everyday BUT it would only work if I said, "Lord, I know you are going to heal me," before swallowing it.  I know God can work wonders, but I don't think he's doing it through acidopholis.  Also was told that God would cure my Crohn's if I followed The Makers Diet.  

I enjoy telling people what's wrong with me after they tell me how I'm young and I don't understand the aches and pains that come with age...puts them in their place.  Don't tell someone that they don't understand something when you don't know anything about them!       


Crohn's Disease with Arthritis, Non-Erosive Reflux Disease, Gastritis, Hashimoto's Thyroiditis, Endometriosis, Depression/Anxiety 

misspriss82
Regular Member


Date Joined Mar 2008
Total Posts : 221
   Posted 8/24/2010 5:20 AM (GMT -7)   
OOOH I have a story to contribute! My BOSS actually told me the other day: "What you put in your body, you get out of it" And basically tried to send me to her "voodoo" dr. to help make me feel better. She told me that medication doesn't work, that I should be eating organically, etc. Then she said she never sees me eating things like salads or raw veggies - perhaps that would make a difference. I came home and told my husband (jokingly of course) that she's trying to kill me! haha

The thing is, while I do go to work 4 days a week, I don't feel well most of those days and just push through it. I have gotten good at putting on a "good face" and smile so no one knows I feel like poop, literally; and vomit almost every single morning. And because of this, people seem to think I'm "fine" and that this disease isn't serious. argh.
28y/o F, diagnosed with Crohn's Disease at 25 y/o , 2000 units of Vitamin D , 1500 Units of Calcium
60mg of 6-MP once daily since Feb. 2010
 
 

mdf34
Veteran Member


Date Joined Feb 2010
Total Posts : 925
   Posted 8/24/2010 6:18 AM (GMT -7)   
Yeah, I've heard a lot of those.
 
My mom, did you try milk to coat your stomach before eating.......
 
A Friend.......You are not getting enough fiber.....
 
Another friend..........fix your diet and you'll be fine.....
 
Neighbors............Oh, crohns is just food allergies..........
 
My dad.........quit drinking milk........
 
and another friend............do you really need to take all of those pills.........why are you upset with me for polluting your cubicle while I am at work with a cold?!?!?
 
my ex-wife........eastern medicine has a cure for crohns....try acupuncture  ( I might actually like to see about that, seriously)
 
My oldest son........quit living in fear and eat what you want.....He totally does NOT understand the fear I have about eating and the potential pain fear/risk.
 
My youngest.........so is it ok if I tell people I have crohns since I have so many problems like you do.........medical marijuana is approved for that, you should try it.....I have to tell him it's not legal here yet.
 
 
 
**MODS**  Not a medical MJ discussion......
Diagnosed (FINALLY) UC Sept 09/Diagnosis amended 5-3-10 to Crohn's
Taking Pentasa 500mg/8x/day
Entocort 3X/day
Bentyl as needed
1000 mg Vitamin C
Prilosec 1X/day
Flonase
 
 

mastersmom
Regular Member


Date Joined Dec 2009
Total Posts : 93
   Posted 8/24/2010 6:29 AM (GMT -7)   
What my daughter hates most is, "Are you okay now?" For most people she tells them she's fine just because she doesn't want to talk about it and hear all the stupid things people can say to you. All the well intentioned advice can be maddening. And there's sometimes a story about a friend or relative they knew who died with Crohn's thrown in there for good measure. She REALLY appreciates those.

MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 8/24/2010 8:11 AM (GMT -7)   
Even we have to be careful ourselves because this is such an individual disease. What works for one person may not for another. I am somewhat hypocritical (and am working on it), but I do get mad when people think that it is ok to tell someone else what to do just simply because they have the same classification of disease.
Forum Co-moderator - Crohn's Disease/Thyroid Disorders: All comments have the caveat contact your local health care provider.
I will find a way or make one. –Phillip Sidney 1554-1586
All that I am and all that I shall ever be, I owe to my Angel Mother.
The Bucket List- Have you found joy in your life? Has your life brought joy to others?
Make sure your suffering has meaning…

Djin
Regular Member


Date Joined Jan 2010
Total Posts : 265
   Posted 8/24/2010 10:14 AM (GMT -7)   
I like when ppl tell me to take "C vitamin" or any other substance to "help the imune system". It's sign to tell that I don't want to wreck my imune system's "mind". If I am trying to knockout it with imunodepressors why help it grow stronger.

When they discover that eating salad is "bad" for me too, they usually realize that I'm crazy and beyond any help.
Male, 35 (lovely family of wife and two daughters)
Diagnosed in nov/94 - Started with Prednisone, followed by Pentasa, entocort, flagyl, Imuran, Cipro, etc.
Blockage (popcorn!!) - First Surgery 2001 (no ressection)
Severe bleedind - 2003 - Stopped by 60mg of Prednisone
Stricture leading to a ressection in Dec/2008 - Second Surgery
Now on Remicade + 100 75mg Imuran + Iron (doc said i'm in remission, but I'm not sure at all)
 
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