Don't you just love "helpful" people?

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snappy
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Date Joined Sep 2005
Total Posts : 675
   Posted 3/3/2010 2:13 PM (GMT -7)   
people who don't know anything about Crohn's but tell you what you should be doing? People who assume that what helped them with their heartburn is gonna cure your Crohn's? Or how about people who tell you that you must not have Crohn's very bad because they know someone who died from it?
 
In my office, this is all one and the same person telling me all this. I just smile....
Bad fissure Feb 2005. Started Remicade 2006. Fissure #1 healed, now deal with smaller fissure that comes and goes. Clean scope 2009 except for fissure. Also on Pentasa.


Becky77
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Date Joined Dec 2005
Total Posts : 1768
   Posted 3/3/2010 2:25 PM (GMT -7)   
Gotta love em! My favorite is when someone suggests a diet that a friend's sister's mom's friend (etc.) tried and it helped them. (and usually this person does not have crohn's)

Some people just never learn...
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


snappy
Veteran Member


Date Joined Sep 2005
Total Posts : 675
   Posted 3/3/2010 2:29 PM (GMT -7)   
My own sweet Mom is guilty of this. She's always seeing some colon health product advertised and telling me about it.

Bad fissure Feb 2005. Started Remicade 2006. Fissure #1 healed, now deal with smaller fissure that comes and goes. Clean scope 2009 except for fissure. Also on Pentasa.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 3/3/2010 2:31 PM (GMT -7)   
Yeah I have got a guy I have worked with for over 6 years and he has seen me VERY ill, and brings me articles on things like the Raw Food Diet. Ummm yeah, like I could even think about eating that:( No matter how hard you try to explain it, they just don't get it do they??? Grrr!!!!
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
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"*

snappy
Veteran Member


Date Joined Sep 2005
Total Posts : 675
   Posted 3/3/2010 2:46 PM (GMT -7)   
Nanners, that's hilarious.
 
I also hate when people try to guess what you can and can't eat. Today I was offerred cornbread. I said "well, I can't eat it if it has corn, or bread in it".tongue  Although I do appreciate their kind thoughts, sometimes they offer me the dumbest things and start reading me the ingredients and asking if I can eat such and such. Last week it was doughnuts!
Bad fissure Feb 2005. Started Remicade 2006. Fissure #1 healed, now deal with smaller fissure that comes and goes. Clean scope 2009 except for fissure. Also on Pentasa.


lamb61
Veteran Member


Date Joined Jan 2005
Total Posts : 1719
   Posted 3/3/2010 2:51 PM (GMT -7)   
I have a lady at work that thinks all I need to do is eat organica & drink more water. She's a sweet lady, just misinformed so I just smile and continue on my way.
 


Terry73
Regular Member


Date Joined Oct 2009
Total Posts : 57
   Posted 3/3/2010 2:51 PM (GMT -7)   
My mom and my husband are BOTH bad for this. They don't read anything and they both think that i am sick because i do not eat right. I don't eat vegtables and if i just ate them all the time i'd feel so much better. I am very tempted to eat a really big salad and them fish it out of the toilet sometime dump it in front of them and say THIS IS WHY I DO NOT EAT VEG!!!!!
Offically diagnosed with Crohn's Oct 2009, been living with bowel problems since 1990
Current meds: Remicade Feb 2010, Immuran, rel-pax, Topomax, Corticosteriod Suppositories, lantus, humalog, 2000u vit d, calcium, multivit, omega 3, Vit B


sammies
Regular Member


Date Joined Feb 2008
Total Posts : 493
   Posted 3/3/2010 5:33 PM (GMT -7)   
I had a colleague spend 30 mins telling me about all the people in her family who have both crohn's and lupus and how sick they are. . . "as sick as you!" She kept asking me what I could eat and kept insisting there must be things I must need to avoid all time (couldn't grasp that this is changing for me). She went on and on and on about how terrible crohn's is and how mnay people in her family are deathly ill.

The next day, she sat next to me again at lunch and asked point blank if I'm going to adopt kids since I can't have them (in a previous conversation I had told her it wasn't advisable for me and my crohn's).

so inappropriate!!
24+ years with Crohn's/colitis; fistulizing crohn's; ileostomy and proctocolectomy; TPN, propranolol and xanax; anemia of chronic disease


hld4good
Regular Member


Date Joined Jan 2010
Total Posts : 193
   Posted 3/3/2010 5:39 PM (GMT -7)   
It was so much easier 30 years ago when no one had even heard of Crohn's. I could make up any story I wanted just to get people to shut up.
Age 58, Crohn's since age 21
3 bowel resections, 1980,88,95
1 fistula repair, 2005
probiotic
digestive enzymes


FunGuy
Veteran Member


Date Joined Oct 2009
Total Posts : 1070
   Posted 3/3/2010 5:42 PM (GMT -7)   
They mean well and I try to smile and thank them for the advice. I find it touching that they care about my suffering. BUT I HEAR YOU! It can be "challenging" at times.
 


mirowpl
Regular Member


Date Joined Nov 2009
Total Posts : 380
   Posted 3/3/2010 5:48 PM (GMT -7)   
Snappy, you are so right. i keep getting people who say "why haven't you tried XX diet. It worked for my aunt"....... after discussing the "aunt" find out she has and ulcer. People think if if has anyting to do with the digestive track then it must be diet you are on. UGH

FunGuy
Veteran Member


Date Joined Oct 2009
Total Posts : 1070
   Posted 3/3/2010 5:52 PM (GMT -7)   
Oh yeah> I had a guy (really nice customer) tell me how his kids stomache troubles were cured when they gave him two teaspoons of Kerosene! He felt I should try it. I think I would jump off a cliff first. If he wasn't such a great guy I might have told him a thing or two.
 


pimfram
Veteran Member


Date Joined May 2009
Total Posts : 506
   Posted 3/3/2010 6:30 PM (GMT -7)   
It's definitely happened to me before. Family members suggest things that make no sense, tell me things I'm doing wrong, tell me to read articles written by some quack on the internet, etc. I usually just say I'll look into it, but obviously I never do. Thankfully, my immediate family is actually competent and doesn't get on my case for the things I do.
Diagnosed with CD July 2007
Currently on Remicade, Imuran, probiotics, folic acid, multivitamin.
Resection December 2009

Amor fati - Nietzsche


gumby44
Veteran Member


Date Joined Nov 2007
Total Posts : 4101
   Posted 3/3/2010 7:33 PM (GMT -7)   
I hate it when I'm not feeling well that the automatic assumption is that I'm "doing something wrong." It's also really hard for people to understand that I can and cannot eat different things according to how I'm feeling.
51 yr. old female, diagnosed with Crohn's in small intestine and terminal ileum Sept-Oct. 2007. Also have IBS, and had Salmonella Dec. '07
currently taking Pentasa- 4 500mg pills per day, Metamucil and colace for constipation, probiotics


sickandlucky
Regular Member


Date Joined Oct 2009
Total Posts : 253
   Posted 3/3/2010 7:38 PM (GMT -7)   
My Grandma does this alot... she means well and I do appreciate that she cares but sometimes it's very frustrating when she thinks she knows my own body/disease better than I do myself!
female 19, diagnosed crohns december 2008
entocort/pentasa previously, now prednisone(tapering) & 100 mg imuran, probiotics, calcium w/d3, biotin, folic acid, zinc, omega 3s, digestive enzymes & prenatal multivitamin


Ashworthml
Regular Member


Date Joined Jan 2010
Total Posts : 222
   Posted 3/3/2010 11:37 PM (GMT -7)   
You guys are great, you made me laugh with all the comments.I can relate to all of them!! I think with me its mostly family that do it, my mother is the worst!! We go there and guaranteed she cooked the same thing over and over again, becauseshe reckons thats all I can eat, even though I only see her for 3 weeks out of the year as she's 6000 miles away!!!! lol Then if we go out to a restaurant and I have something different, she'll question me of whether or not I should be eating it!As if I dont know myself what I can , and can not eat!!!
And I always get the what are you stressed about or eaten when I have a flare!!!! Then I get my brother trying to give me books on diet that aren't even related to Crohns just some religious stuff....not hitting on religion or anything but whats religion got to do with crohns and diet???? The only thing I know is that sometimes I wish to God I didn't have it!!
Michelle 40 years old
Diagnosed with CD 2004 (undiagnosed correctly +- 3 years, wrongly diagnosed with IBS)
Bowel resection 2005
medication: pentasa 500mg , Co-codomol 500mg/32mg codeine
loperamide 2mg (prn - take as many as 10-20 a day)
calcium tablets, multivitamin tablets, Omega 3
Ferrous sulphate(anaemia)
levothyroxine (thyroid)
questran light (3 sachets/day), 3 monthly B12 Injections


ozonehole
Veteran Member


Date Joined Dec 2006
Total Posts : 559
   Posted 3/4/2010 1:15 AM (GMT -7)   
Well, I just want to add that what I think you should all do is...

Take a mouthful of water, then hold your breath for 10 seconds. Spit out the water, then stand on your head for three minutes. Then one minute of jumping jacks, followed by an enema, then swallow a spoonful of olive oil. Finally, place a flowerpot in the middle of your living room and run around it (in a clockwise direction) 30 times.

Repeat this procedure at least 3 times daily.


I heard (from my cousin) that this worked for his math teacher, who had migraine headaches. So it stands to reason that it will work for Crohn's too.

cheers,
Robert
Crohn's since 1988
3 resections

Post Edited (ozonehole) : 3/4/2010 1:18:42 AM (GMT-7)


lilcrohnieUK
Regular Member


Date Joined Dec 2007
Total Posts : 414
   Posted 3/4/2010 4:01 AM (GMT -7)   
Ha thats brilliant! However I think if I was ill my arthritis would not be able to cope with standing on my head, jumping jacks and running around a flowerpot. I swear I've heard of something similar for getting rid of hiccups smilewinkgrin

Whenever I get ill the amount of people who will say "what did you do to trigger it off?" like its my fault! I remember once one of my brothers getting a bit short with me when I was feeling poorly and I ended up snapping at him saying he should thank god he wasn't the one to end up with the faulty gene. Harsh I know but sometimes it can be hard to stay cool when people are being ignorant and your suffering!
 
 


snappy
Veteran Member


Date Joined Sep 2005
Total Posts : 675
   Posted 3/4/2010 5:14 AM (GMT -7)   
After righting this post yesterday I talked to my mother on the phone. She read that Archway brand (and ONLY Archway brand) coconut macaroons ease crohn's symptoms! God bless her. Ironic that I determined recently that cookies are the major source of my inflammation.

Bad fissure Feb 2005. Started Remicade 2006. Fissure #1 healed, now deal with smaller fissure that comes and goes. Clean scope 2009 except for fissure. Also on Pentasa.


sheep87
Regular Member


Date Joined Jan 2010
Total Posts : 31
   Posted 3/4/2010 5:18 AM (GMT -7)   
The thing that really gets to me is when people say "oh I might have Crohns because i get alot of D" or when i tell people what I can and cannot eat they say "oh eating that makes me ill too, i think I have Crohns".

What right do people have to assume they suffer just as much as us because every now and then they get D or be a little sick. I feel like turning round and saying If you borrowed my Crohns for 1 week you would know what its really like!

snappy
Veteran Member


Date Joined Sep 2005
Total Posts : 675
   Posted 3/4/2010 5:20 AM (GMT -7)   
For real, Sheep. Last week a guy in my office said he has "borderline crohn's". Like being kind of pregnant?

Bad fissure Feb 2005. Started Remicade 2006. Fissure #1 healed, now deal with smaller fissure that comes and goes. Clean scope 2009 except for fissure. Also on Pentasa.


Sniper
Veteran Member


Date Joined Feb 2004
Total Posts : 6518
   Posted 3/4/2010 6:01 AM (GMT -7)   
Borderline crohns ???? Hmmmmm . My brother found an article that says I did not eat enough mud when I was a kid . Yep, I need to make mud pies I guess...I know he means well but he tick me off sometimes.
If we would read the secret history of our enemies,we would find in each mans life sorrow and suffering enough to disarm all hostility.


HabsHockeyFan
Veteran Member


Date Joined Jan 2006
Total Posts : 3130
   Posted 3/4/2010 6:06 AM (GMT -7)   
ashworthml...know the feeling with your Mom. Mine was the same way. I gave up trying to explain it and now I kind of miss her questions. God bless her she tried.

Then there are the other people who are not trying. They just want a quick solution for you. I usually just grin and say "thats nice!" unless I am testy that day. Then i say "I'll ask all those doctors I have to pay money to what they think and get back to you. Can I have a number to call you for more solutions when i am puking on the toilet at 3am or when I am stuck in the bathroom for 3 hours. I should probably call you everytime I look at food to get your opinion on what I should eat. It's OK I have a cell so I can call you anytime for this great advice."
Dx'd '90 (emergency rupture), symptoms ignored long before that, '03 fistulas and bad flagyl reactions, B12 weekly, Pentasa [until I surrender to the bigger meds]
I'm riding on the escalator of life....


JavaJay
Regular Member


Date Joined Mar 2009
Total Posts : 452
   Posted 3/4/2010 7:05 AM (GMT -7)   
snappy said...
After righting this post yesterday I talked to my mother on the phone. She read that Archway brand (and ONLY Archway brand) coconut macaroons ease crohn's symptoms! God bless her. Ironic that I determined recently that cookies are the major source of my inflammation.

I have to say I heard this years ago...and tried it.  No, it didn't work.  Now I am older and when I think about it, isn't coconut like a laxative at times???  (Remember Tom Hanks complaining about it in Castaway) How the hell is a macaroon going to help??

Anyway...this post really put a smile to my face.  Some of these are really funny...like drinking kerosene.  That can kill a person.


36 yr old Male with Crohn's Disease since '88 - No Surgery yet
 
Been on almost every type of drug with bad results
Remicade since Nov 2009
Prilosec 20.6mg - 2x a day
Multivitamin daily


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 3/4/2010 7:25 AM (GMT -7)   
I must say that we have been pretty lucky in this regard. I've not had any of my friends or family really give us irritating and bad advice - they know us, and know that we will have researched every avenue, so they just give us support when we need it, and not the "you should have done this instead" bit.

I do have some superstitious relatives, who believe in astrology. They tell me (when my husband is sick of course), that his astrological chart tells them that he's going through a rough time, and give me dates when things will start to improve (and of course they are sufficiently in the future, that if he didn't see improvement by then, he'd be in surgery). And when he starts to improve, they pat themselves on the back, and are full of pride at their "prediction". They mean well - a lot of India believes in astrology, and I know they are just trying to give me support and hope, but it really grates on my nerves when they start talking about it. I try to change the subject to anything else at that point. :-D

I think overall though, it's because people care that they give advice (and sometimes appalling advice) :-D So, I just try my best to not get annoyed with them, and just smile through it, and try to change the subject.

PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Crohn's in Remission since June 2008
C-diff recurrence Sep 2009
Reactive Arthritis Nov 2009
Currently c-diff free
Stomach Flu Feb 2010
Canasa (1gm), Lialda (4.8 gms), Remicade (6 weeks), Pred (5mg every other day)
Hoping to stop pred, and move remi back to every 8 weeks soon
Currently In Remission

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