people say the most foolish things

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crohn's pt mom
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Date Joined Nov 2008
Total Posts : 86
   Posted 3/25/2009 9:54 AM (GMT -7)   
Last night my daughter was told "she wasn't trying hard enough".  Can you believe it.  Her boyfriend's family apparently feels she is milking this last surgery for her abscess.  What I don't understand is that they apparently have someone else in their family that has active crohns.
 
Although she was crying, at least she knows this isn't her fault.  Apparently they feel her diet could be improved, she brings this on herself.  However, at this time the abcess is all that is bothering her.  She knows what she can eat and when.  *you know ice cream on a night you are at home.*
 
I'm really ticked off and would like to tell them how stupid they really are.

Becoming undone
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Date Joined Jul 2007
Total Posts : 927
   Posted 3/25/2009 10:14 AM (GMT -7)   
I'd like to go with you...urrrrrrrrrrgh!!!!!!
It is so disheartening to hear something like this, especially from people who are supposed to care...even just a little.
My wonderful MIL (wonderfully a Pain in the donkey)goes one like this quite often. I just smile and walk away, while visualizing her strangulation and her eyes bugging out...not that I condone violence....just how can she be so inconsiderate???? I give her the benefit of the doubt, and I think she wants to help fix it...but it ain't helping...
I am glad that your daughter has you. It is nice to have someone to talk to...
"The earth laughs in flowers"


crohn's pt mom
Regular Member


Date Joined Nov 2008
Total Posts : 86
   Posted 3/25/2009 10:16 AM (GMT -7)   
Actually the most foolish thing I heard was when one sister-in-law told another, who suffers terribly from depression, to think "happy thoughts" and she would be fine.

Becky77
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Date Joined Dec 2005
Total Posts : 1768
   Posted 3/25/2009 10:20 AM (GMT -7)   
People just don't understand. I think it's even worse though, when it is family that's saying these things. My sis sometimes asks..."did you eat something you shouldn't have?" As if I eat things to torture myself. I think after 12 years I know what I can and can't eat.

I just ignore comments like that, because really, it's because they are ignorant about the disease. If they were to really care or want to understand, they would learn more and be more supportive. Everyone can't be perfect though....
Becky

31 yr old female-dx with Crohn's in '97 after emergency resection and appendectomy, 2nd resection '05
Currently on Humira, Prilosec, Effexor, Seroquel, Calcium, Vit D, sublingual B12; phenergan, ultram, clonazepam as needed


Kriss
Regular Member


Date Joined Mar 2005
Total Posts : 357
   Posted 3/25/2009 10:27 AM (GMT -7)   
Bar77 - I hear the whole "did you eat something different" kind of stuff, too... ug! I'm on prednisone and am prone to mood swings on occasion.... my boyfriend told me that I'm making myself sick... apparently I was having a day without a sunny disposition and can miraculously be cured with a positive outlook : /
32 year old female... diagnosed with Crohn's/Colitis at age 16, then with Proctitis in 2005... right hemi-coloctomy April 2001 (removed 12 inches)... currently taking 100mg 6MP, Canasa, acidolpholus, Protonix, B12 injections once a month, tapering dose of 40mg Prednisone, Bentil and Percoset as needed... considering Remicade


yellowfin43
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Date Joined Aug 2008
Total Posts : 305
   Posted 3/25/2009 12:10 PM (GMT -7)   
It's easy to spot someone who has never had to deal with a serious illness. They are usually the ones that say the dumbest things. I suppose it isn't their fault completely though. I would probably say something stupid if I had a conversation with an astronaut since I know nothing about rockets. I truly believe those of us that deal with chronic illness are blessed because we become sensitive to those less fortunate. We learn to appreciate things in a way the terminally healthy can't even imagine and I consider that a blessing. Jesus had a good point when he said "Forgive them father for they know not what they do". You might as well let the ignorant be blissful because your not going to change them.
Crohns 30 years. Ileostomy for 15 years. Symptom free for 14 years until 8 months ago. Now on Remicade and iron. Feeling much better!
God Bless. Tony


Trigirl
Veteran Member


Date Joined Jan 2006
Total Posts : 768
   Posted 3/25/2009 1:25 PM (GMT -7)   
I ignore people like that. In this day and age I do wonder how people can be so uneducated, since lots of people are sick one way or another in the world. All of the above council is so wise I just add my ditto. Lucky her for having a loving supporter like you!!!

Bible
Regular Member


Date Joined Jul 2007
Total Posts : 188
   Posted 3/25/2009 1:31 PM (GMT -7)   
People are cruel and they don't get it. This disease is viscious (sp). If it was in our control- none of us would have it; much less ever deal with another flare-
Wish you all the best!!

Celey
Veteran Member


Date Joined May 2007
Total Posts : 1284
   Posted 3/25/2009 1:48 PM (GMT -7)   
:(.... I'm sorry to hear your daughter had to go through with that.... *Hugs*

It can be hard to blame people for being uneducated, sometimes... This disease is so... difficult to understand... Even doctors really don't understand it...

And... for those of us who do have it, it can be hard to understand, too..... Everytime I have a problem, the first thought that goes through my head is that I ate something I wasn't suppose to... I can't help it... It seems like I'm always looking for something to blame.... I guess it makes me feel like I have more control. Maybe it's cause I've only had this disease for a couple of years (going on three in November)... I'm still trying to grasp with the concept that I have very little, if any, control when it comes to this disease...

Still, it shouldn't be asking too much from people to show a little compassion... I'm sure they'd expect it if they had just had surgery....
I think I am being picked on by life, sometimes. But's that okay. Life and I are good buddies... I know life doesn't mean no harm. It just is the way it is. I can accept that.


donnaeil
Veteran Member


Date Joined Jun 2006
Total Posts : 1156
   Posted 3/25/2009 2:10 PM (GMT -7)   
Does her boyfriend stand up for her to his family?

Donnaeil

crohn's pt mom
Regular Member


Date Joined Nov 2008
Total Posts : 86
   Posted 3/25/2009 5:09 PM (GMT -7)   
 
Her boyfriend doesn't understand the illness yet - he's trying. It seems to be stressing him out too. 
 
 

MAG102886
Veteran Member


Date Joined Jul 2008
Total Posts : 674
   Posted 3/25/2009 5:30 PM (GMT -7)   

I hate when people make those comments.  To be completely honest Id rather people not say anything at all when I tell them I dont feel well...I just say it so they know, not so I can get some pity or nasty comments back.  My favorite is everytime I tell my bestfriend that my stomach hurts her reply is...."well what do you think it is?" HMMMMMMMMMMMMMMM I think it starts with a C and ends with rohns.....Im not sure tho.  I love her, but I just want to smack her when she does that.

Sometimes, as crazy as it sounds, I can really appreciate this disease, because I know that Im not one of those ignorant people spitting out comments like that, Ive learned to have compassion and patience with myself, as well as others.


Dianogsed with Crohns: At 16 years old. 22 years old now.
Surgeries:2 Bowel Resections, Gallbladder Removed.
Current Meds: Imuran 50mg, Vitamin B12 (injection), D, and C tablets. Fish Oil Tablets, Cats Claw, Slippery Elm, and Reishi.
 

crohn's pt mom
Regular Member


Date Joined Nov 2008
Total Posts : 86
   Posted 3/25/2009 5:39 PM (GMT -7)   
when i'm having an IBS flare my mom always asks why... she means well -but I don't usually know why and I've said that a hundred times.

Kittikatt
Regular Member


Date Joined Jul 2004
Total Posts : 422
   Posted 3/25/2009 6:07 PM (GMT -7)   

This topic always fires me up.  I'm so SICK AND TIRED of hearing people, who I've TRUSTED ENOUGH to even tell them I have Crohn's to begin with, ask me about FOOD!  "Well, what'd you eat last night? Is that why you don't feel good today?"  Grrrr! mad   IT'S NOT about FOOD!!!

I don't know how many times I have to tell them I have NO TRIGGER FOODS.  But they don't even take the time to understand what THAT even means.  Food doesn't CAUSE me to flare, I flare because it's the dern nature of my disease!  Do they just not want me to eat at all?!

I did get a nice break from that kind of stuff this week when I was at my surgeon's office. I'm having my gall bladder removed in 2 weeks.  I was telling the girls at my surgeon's office that my "girlfriends" at work all keep saying, "Oh, when you get that gall bladder out with those nasty stones, you are going to be feeling SO much better!"  Well, MAYBE.  But I'm in a Crohn's flare right now and taking my gall bladder out isn't going to just miraculously take away my flare.  THEY think I've been sick the past few months because of the gall stones because THEY along with everyone else understand gall stones...everyone KNOWS someone who's had their gall bladder removed.  They just can't wrap their brain around a Crohn's Disease flare.  So one of the girls at the surgeon's office said to me in a COMICAL, sarcastic tone, "The problem is, you don't LOOK sick."  She said she totally knew what I was talking about because her sister has RA & Lupus and she gets smart-aleck comments like us Crohnies do all the time.

I really DO try to be patient when my friends make comments that rub me the wrong way...because they DON'T have an auto-immune disease and because I KNOW their heart is in the right place; they just want to give opinions to show they care about what's going on with me...they just don't get that some of their "opinions" anger me.
 
I'm sure everyone on this board has a story similar to yours.



Diagnosed in October, 2004 at age 32.
37/F/SC
Current Rx's: Colazal (generic), Omeprazole, Ferrous Sulfate, Librax, One-A-Day multivitamin, Probiotic, Omega-3 Fish Oil, Vitamin D, Vitamin A, Calcium-Magnesium-Zinc, Cranberry pills
Secondary conditions: mouth ulcers, joint pain, swelling ankles, extreme fatigue
Previous/occasional Rx's: 20mg Prednisone taper, Flagyl, Levaquin
No surgeries to date

Post Edited (Kittikatt) : 3/25/2009 7:15:01 PM (GMT-6)


scotia22
New Member


Date Joined Mar 2009
Total Posts : 3
   Posted 3/25/2009 6:11 PM (GMT -7)   
my fave is when you tell someone you have to stop to go to the washroom and they say "can't you hold it till you get home?" I also feel that people with CD should be given a special washroom pass that we can use at stores that do not have public washrooms if we flash the card they will allow us to use the washrooms.

mamande3
New Member


Date Joined Mar 2009
Total Posts : 11
   Posted 3/25/2009 6:28 PM (GMT -7)   

Scotia, that is an AWESOME idea!  Like a pass for disabled persons' parking.  Brilliant!  How can we get something like that done?

 

Heather


13 y.o. ds diagnosed with Crohn's this year.
My father and sister have it too.
 
DS is currently on Pentasa, Perinethol and Euro-Fer. Hoping to see some improvement soon...


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 3/25/2009 7:36 PM (GMT -7)   
People have tried including Pearl Jam's Mike McCready(sp?) as posted in an article by another member of the board. The problem is that people feel that is infringing upon their rights somehow to be giving us this 'special privilege.' Those who weren't sick said we should just wear diapers. Hmmmm.
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone 10 mg, pentasa 2 pills 4x a day, bentyl as needed, omeprazole in the morning, prenatal multivitamin, humira every other week, and Align probiotics given to me by my GI.
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
Diet almost completely without refined sugars, wheat, flour, gluten, high lactose dairy, and/or junk food in general.
Learning how to live again.
"He who has a why to live for can bear with almost any how."


Miss J
Regular Member


Date Joined Mar 2009
Total Posts : 27
   Posted 3/25/2009 8:23 PM (GMT -7)   
Scotia and mamande (and anyone else who is interested):

U.S. citizens with Crohn's ARE allowed to use ANY bathroom we want! We're protected under the Section 504 of the Rehabilitation Act of 1973 for Americans with serious health issues.

I've found that the nicer you are in a place without a public restroom, without evening mentioning Crohn's, you can still use it as long as you promise to be clean. Of course, it's a little hard to do when you're clenching your teeth, sweating, and your legs are shaking because you're about ready to have an accident- but that extra second of politeness counts. If they don't extend the courtesy, then it's time to pull out the big guns and tell them you have a severe intestinal disorder and denying you access to a restroom will result in federal action against their business.

FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 3/25/2009 8:30 PM (GMT -7)   
Miss J, unfortunatly I do not think you are correct. The Rehabiliation Act only applies to entities that recieve federal funding. Your typical business does not. You may be thinking about the ADA, Americans with Disabilities Act. However, as far as I am aware, federally, there is no mandate that a business let you use their restroom, disability or not. That is why states are trying to enact Allies Law. Those that have enacted do require businesses with more than x number of employees on duty to allow someone with a disability to use their bathroom.
27 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night.  I take xanax prn for situational anxiety (aka no easy bathroom access). 


78SilvAnniv
Regular Member


Date Joined Apr 2008
Total Posts : 289
   Posted 3/25/2009 9:50 PM (GMT -7)   
scotia22 said...
my fave is when you tell someone you have to stop to go to the washroom and they say "can't you hold it till you get home?"
Ha!  Those comments make me want to say:  "Sure!  If you want to chance it, that is just fine.  But, I will need to sit on YOUR lap while I 'try to hold it until we get home'.  Still want to take that chance?"  *smile sweetly and blink your eyes at them* while thinking: ...well, do ya?  Do ya?  Punk.
 
 
 
I have the ability of single-minded determination and accurate project focu....Hey, look, a cat!
 
Crohn's and UC are pretty darn crappy, but if you can't laugh at yourself, you'll cry......I'd much rather laugh.
2001 Dx'd with UC.  No remission.  No improvement with Remicade.  5/2008 surgery, removal of 6" of left side colon.  Dx changed to Crohn's.  Remission for 8-9wks after surgery, symptoms returned after resuming 6MP.  Changed maintenance med to Methotrexate (MTX) and had great results with IM injections.  Nausea and symptoms returning with oral MTX.  Switched back to IM injections and am slowly improving.


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 3/25/2009 10:47 PM (GMT -7)   
I live in Australia, and I have been given one of those toilet access cards. Any IBD patient who joins Crohn's Colitis Association is given one. I seriously think your Crohn's Association needs to get off its backside and start doing something to help you all.

As far as I know, there's no law that forces businesses here to recognise the card; we just rely on shop keepers being appropriately sympathetic and empathetic. There was also a big awareness campaign to draw attention to our need for urgent toilet access, and that helped.

As far as peoples' stupid comments go, I have fibromyalgia and joint disease as well as Crohn's, and often use a walking stick to get around. Sometimes I use it because I'm in pain; often I use it because it helps me stand up for longer. It always amuses me how much attention I get with the walking stick, "oh, you poor thing, you look so sick, good on you for making the effort to come to this social function," when, in reality, I'm often actually feeling pretty well, despite the walking stick. If I were *really* sick, I'd be stuck at home, tied to the toilet and wouldn't be going out at all.

People respond to what they see. We suffer by having an invisible disease... which is made even more invisible by the fact that we don't go out as much when we are really flaring.
Co-Moderator Crohn's Forum.


Bane
Veteran Member


Date Joined May 2007
Total Posts : 589
   Posted 3/26/2009 2:15 PM (GMT -7)   
My friend once told me I wasn't trying hard enough to get my Crohn's under control. It might have even been true. I punched him in the shoulder anyway.
21, Male, diagnosed over Christmas Break of my Junior year in High School. BEST CHRISTMAS EVAR LOL

(not really)


mintyamy
Regular Member


Date Joined Mar 2009
Total Posts : 50
   Posted 3/26/2009 6:42 PM (GMT -7)   
I was in the middle of flare and had lost about 10 lbs. Being tall and thin to begin with, 10 lbs. made me look like a twig. I got so many comments on how good I looked! Normal people would be happy to hear that, but I was in such termoil, it pissed me off! I also had someone say "Wow, I wish I had a stomach problem!" AH! I couldn't believe she even had that thought, let alone it come out of her mouth!

I sometimes wish diarrhea on people! lol


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 3/26/2009 9:00 PM (GMT -7)   
Heh, there were two girls on my campus that were talking about salmonella poisoning (most food poisoning or bacterial infections just make me think of having Crohn's for a day...or week) and all they could say was "At least I'll lose weight!!!!"
I think sure, you'll lose weight and feel too terrible to feel good about anything else if you even still feel good about that at all.
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone 10 mg, pentasa 2 pills 4x a day, bentyl as needed, omeprazole in the morning, prenatal multivitamin, humira every other week, and Align probiotics given to me by my GI.
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
Diet almost completely without refined sugars, wheat, flour, gluten, high lactose dairy, and/or junk food in general.
Learning how to live again.
"He who has a why to live for can bear with almost any how."


leabug
New Member


Date Joined Mar 2009
Total Posts : 6
   Posted 3/26/2009 11:57 PM (GMT -7)   
I got all those "I wish I had crohn's!" comments too, after I lost 60 pounds... every time I just decided to gross the person out by saying "I'd rather be fat than be glued to the toilet all day".
 
Of course, once I got to the 115 lb mark, those comments stopped coming, as I resembled Skeletor from He-Man.
DX with Crohn's at 21 in '06
Resection of TI and Cecum/3 Strictureplasties in May '08
I've been on most entry-level meds out there: prednisone, AZA, pentasa, ciprofloxacin, metronidazole, etc etc etc... starting Remicade soon, after discovering an enteroenteric fistula.
Flock of Parrotts- my family blog.

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