just venting...

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jamiii sayys
New Member


Date Joined Mar 2009
Total Posts : 13
   Posted 4/28/2009 4:09 PM (GMT -7)   
I'm so sick of people telling me to think positive and put my mind over matter.
That if i just think positive it will get better.
 
And "i know if hurts but you just have to be strong"
im being as strong as i can. and if all i had to do was think positive dont you think i would.
 
AHHH! people are just so a;lsdkfjw;oeif.
I know they're just trying to help but it is so frustrating when people try to down play the pain you're in.

MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 4/28/2009 4:23 PM (GMT -7)   
Jamii,
I think people do not understand. I wish I had some way to make it all better. I wish I could make people understand.
Vent away!
Hugs,
Navy
Forum Co-moderator - Crohn's Disease:_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…


jamiii sayys
New Member


Date Joined Mar 2009
Total Posts : 13
   Posted 4/28/2009 4:29 PM (GMT -7)   

thank you.

and i dont know why but reading that little bit made me tear up a little, but not bad tears, relieved tears. i'm glad i can come here to vent to people who understand.


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 4/28/2009 4:33 PM (GMT -7)   
Honey we understand and I think most of us have relatives or friends who have done that to us. (((((((((((((BIG HUGS)))))))))))
Forum Co-moderator - Crohn's Disease:_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…


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 4/28/2009 4:35 PM (GMT -7)   
Vent away all you need! I know this disease and the responses it provokes can be so frustrating and unbelievable sometimes...
I'm so sorry you're going through this, but please know we're here for you. Do not be afraid to share what is bothering you because there will always be someone here to listen and understand.
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."


WorrywartNana
Regular Member


Date Joined Dec 2008
Total Posts : 86
   Posted 4/28/2009 4:51 PM (GMT -7)   
I am so sorry you are hurting jamiii. You & all the other people on this forum are my heros! And, I (one of the people) say the stupidest things when I see you hurting.

Most people (including parents & grandparents) feel so very inadequate & helpless when a loved one becomes ill & is suffering & in pain. As relatives, we would give up our lives to stop our loved ones from hurting.

My g'son is right now in the hospital, laying there in pain & agony with his CD .... 19 yrs old, wearing a "diaper" because of uncontrolable diahrrea, bleeding, 105 degree fever, low blood pressure, anemic, rash all over, etc. just started Humira... now back on antibiotics which are giving him nausea, sore mouth, itch, etc.

Just last night I said to him "I know it hurts, honey, but you have to be strong.... things WILL get better... hang in there, babe".

Believe me jamiiii, I am NOT downplaying his pain and suffering. I am NOT being condescending! It just tears me apart not being able to help him. I would gladly die a thousand deaths to spear him just one pain!

The best we, as on-lookers can do, is to be symathetic & show empathy, caring & love.... the only way we know how.... through words and gestures.
 
19 yr old Grandson - Dx UC 12/08;  DX CD 4/09
Dec 19/08 - Hospitalized (1st time)
Apr 9/09   - Hospitalized (2nd time) CD flare
Current Meds in Hospital: Humira injections started Apr 24/09;  Oxycodone 15mg
 
Is still in hospital 
 
Previous Meds:  Prednisone 40 mg.
Asacol 800 & Morphine (allergy to both).
Hospital Suppliments:  boost, low fiber diet.
 
 


isergodur
Veteran Member


Date Joined Jan 2009
Total Posts : 831
   Posted 4/28/2009 4:54 PM (GMT -7)   
It is so boring to hear this 24/7 and people are always asking the same question "how are you doing?"

People think they are helping so I try not to let it bug me.

Actually staying positive does help but I understand it can be hard to do when life is not working like you hoped to.

Hope you feel better soon.
24 year old female
Diagnosed with Crohn's disease in December 2008..
Medication - Asacol, Remicade, Entocort, Cipralex and Cerazette.
My wonderful dogs :) ~ www.poodle.is ~


Kittikatt
Regular Member


Date Joined Jul 2004
Total Posts : 422
   Posted 4/29/2009 4:57 AM (GMT -7)   

Staying positive DOES help in every aspect of life becaue it helps to reduce STRESS.  Stress for me is a trigger for Crohn's flares.

HOWEVER having said that, when you're feeling like CRAP and SOMEONE ELSE (beside yourself) tells you to "stay positive/be strong" you just want to kick them-shove them-poke them in the gut. 

I've been up and down going to the bathroom since 3am this morning.  I'm tired.  My body aches.  I've got those weird skin chills but no fever.  My lower back hurts from going to the bathroom so many times.  I stayed in bed an extra hour this morning.  But I finally started talking outloud to myself: "You can do this.  Just step out of bed.  Get moving and the day WILL get better...and if it doesn't, that's OK.  At least you gave it a try." 

But if someone ELSE had been there telling me that stuff...OMG.  I'd have been screaming for them to leave me alone!

We feel ya, jamiii!  People who DON'T have this illness just can't possibly understand the frustration and pain behind it...any more than I could understand what it would be like to not be able to walk; see; hear; have Parkinson's; cancer; etc...


Diagnosed in October, 2004 at age 32 (misdiagnosed with IBS in 2002)
37/F/SC
Current Rx's: Colazal (generic), Omeprazole, Ferrous Sulfate, Librax, One-A-Day multivitamin, Probiotic, Omega-3 Fish Oil, Vitamin D, Cranberry pills
Secondary conditions: swelling ankles, extreme fatigue, mouth ulcers, joint pain
Previous/occasional Rx's: Prednisone, Flagyl, Levaquin, Xifaxan, Carafate
4/7/09: Gall bladder removal laproscopic surgery (gall stones)


orngie
Regular Member


Date Joined Feb 2009
Total Posts : 161
   Posted 4/29/2009 6:03 AM (GMT -7)   
I feel your pain. Literally and figuratively.

karendee
Veteran Member


Date Joined Mar 2007
Total Posts : 1642
   Posted 4/29/2009 6:31 AM (GMT -7)   

So sorry! I have felt the way you do before. Others just don't get it sometimes.

I do think being positive can help stress but that is easier said than done. Especially when we feel like crap and are sick a lot.

I hope you get some relief soon. Maybe a kind word back to those people that you are being as positive as you can but you are very sick and positive thoughts alone won't cure you.

Karen


 ...

Karen (Karendee)

Diagnosed w/ Crohn’s Disease  March 2007 Started Humira June 2008 (have been on other cd meds)

Diagnosed w/  Fibromyalgia May 2007 on Soma and Lyrica

 

 


dt19&99
Regular Member


Date Joined Apr 2009
Total Posts : 174
   Posted 4/29/2009 8:42 AM (GMT -7)   
Yeah, thinking positive definately helps but its not quite as easy as putting mind over matter (that would be nice though, cause if I coulda just thought the disease away it would have spared me those barium dirnks and bowel preps)

Last night I actually had a friend (who apparently became a doctor over the weekend) tell me how to take my medicine...

Kittikatt
Regular Member


Date Joined Jul 2004
Total Posts : 422
   Posted 4/29/2009 10:28 AM (GMT -7)   
I've had a friend say she didn't understand why I wouldn't just go ahead and have all of my intestines removed so I wouldn't have to deal with Crohn's anymore and have a better quality of life...I'd only been in a flare for a few weeks when she made this comment. rolleyes
 
Diagnosed in October, 2004 at age 32 (misdiagnosed with IBS in 2002)
37/F/SC
Current Rx's: Colazal (generic), Omeprazole, Ferrous Sulfate, Librax, One-A-Day multivitamin, Probiotic, Omega-3 Fish Oil, Vitamin D, Cranberry pills
Secondary conditions: swelling ankles, extreme fatigue, mouth ulcers, joint pain
Previous/occasional Rx's: Prednisone, Flagyl, Levaquin, Xifaxan, Carafate
4/7/09: Gall bladder removal laproscopic surgery (gall stones)


crohnielass
Veteran Member


Date Joined Mar 2009
Total Posts : 1118
   Posted 4/29/2009 12:03 PM (GMT -7)   
Hi i think some people don't understand because  if you had a broken arm ,leg they can  see it  and imagine what it feels like but they can never imagine what IBD is like. cry I understand  exactly where your coming from. Bev x 

Valerie3
Veteran Member


Date Joined Feb 2009
Total Posts : 529
   Posted 4/29/2009 6:47 PM (GMT -7)   
I know what you mean, my father was telling me that "if I was really in as much pain as I acted like, I'd be in the hospital". There have been times where people have been convinced that I must be exaggerating the pain I have, and it can get really frustrating. I hope that the pain gets better for you and you can go back to having a better quality of life. I am personally thankful in a way that I have Crohn's (that probably sounds weird. To me, having a disease this painful makes you a lot more compassionate and understanding towards other people, and even though I have been diagnosed only a few months ago, I am looking forward to doing whatever I can to help with research and finding a cure for this horrible disease.

FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 4/29/2009 8:52 PM (GMT -7)   
Valerie, that is my pet peeve. My normally supportive husband will always say "you should go to the hospital then" or "do you need to go to the hospital?" all the freaking time. And I just want to be like, no, I have crohns, so this is normal for me, even though the same level of pain would send you to the hospital. For you it could mean appendicitis or gall stones or kidney stones. For me, its just the crohns and unless I am dehydrated or obstructed the hospital isn't going to do anything for me. And I know it sounds like he is concerned (which most of the time he is) but I often feel like what he is really saying is "unless you need to go to the hospital, I don't want to hear about it."
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). 


Valerie3
Veteran Member


Date Joined Feb 2009
Total Posts : 529
   Posted 4/29/2009 9:19 PM (GMT -7)   
It bothers me too. I know the last thing that hospitals need is emergency rooms clogged up with people who don't need urgent help anyway. If it is ongoing and I haven't died, there is no point in going there and taking the place of someone who could have something much more urgent wrong with them. It can really be frustrating, I had friends try to drag me to the hospital screaming and crying because I was in pain at one point, and it really drove me crazy, because when I'm in pain and need to go to the bathroom every 5 minutes, the last thing I need is to be sitting in a crowded emergency room waiting room for 8 hours waiting for my name to be called.
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