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songstress
Regular Member


Date Joined Jul 2005
Total Posts : 393
   Posted 8/17/2007 1:59 PM (GMT -7)   
Okay so Ive been living with some pretty excruciating bone pain for say now 6mths. I keep it controlled to where I can live my life with Pred but want to come off the Pred and start with other stuff.
 
Ive maintained pain in the past with Oxy, Percasets, Vicodin, and it only dulls the pain. I only got these when I would go to the ER once the pain would become unbearable.
 
Here is why I titled this post  WHY?    Why is it that my family (not my husband who knows)  extended and such think Im a hypocondriac? (sp)  or they make me feel like my pain is not real ...Im so tired of this crap....they put me in a bad mood they piss me off..they make me wanna pull my F N HAIR OUT.  Why is it that I am a liar? Why is it that I have some kind of problem where I think I have everything under the sun?
 
I dont..I have reallllll problems..and I just am asking advice cuz half of my family is in the medical field. Sorry but I had to vent.
 
I asked my mom today about Fentanyl and what it was and she acted like I was this crazy person. I wasnt saying I needed it..just had heard arthritis sufferers on here talk about it.  I cant wait to get my bone scans.  hopefully they will prove what Im been saying.  And my sister's friend try to tell me that I am hypocondriac cuz I have been doing research on ankylosing spond....and have ALL THE symptoms.
 
Anybody else deal with this kinda crap??

Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength

Diagnosed with severe Crohn's colitis in May 2005. I deal with daily arthritis ALL over my body, cystic acne, & fibromyaglia. Have taken Imuran, Remicade, TPN, Colozal, Entocort, Flagyl, PamineForte, Cipro, Dicyclomine, Prednisone, Asacol, Prevacid, and the list goes on. Taking low amounts of Pred now & 3600mg of Asacol currently...Can't wait till I can get back on Remicade, my miracle drug!


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 8/17/2007 2:09 PM (GMT -7)   
Everyday of my 32 years with this disease! Its sucks! I think we all can sympathize.
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


Mac_Gyver
Regular Member


Date Joined Aug 2007
Total Posts : 350
   Posted 8/17/2007 2:56 PM (GMT -7)   
I feel the same way. Everyone a work and home has no idea what is going on, the only person I can take to is my grandmother who is 6 states away. She also has recently began to suffer IB. Most of the time people feel Im faking a symptom to get out of something or cause I just don't want to go do something, but what they don't realize is that I want to go see a movie or want to go out to eat but I have such bad stomach pain ad cramps I can barley get off the couch. Glad Im not the only one who fels this way.
Symptoms Of Crohn's June of '06 (21 years old 285lbs). Colonoscopy in Jan '07 no sign of Crohn's. Surgery for a Fistula in April '07, diagnosed suggestive Crohn's in May '07. August '07 small bowel follow through, diagnosed with Crohn's (22 years old 165lbs). Starting HUMIRA 9/10/2007.


ginger71
Veteran Member


Date Joined Nov 2005
Total Posts : 722
   Posted 8/17/2007 3:58 PM (GMT -7)   
Yes. No one knows or understands us. I have learned not to care anymore. My mom thinks her hemmies are just like my abscesses and fistulas and she can't understand why I just don't go and get pregnant. I just tell them to stop making comments if they don't agree with me or my treatments and I don't tell my family much about my health anymore anyway. Just my sis who is awesome and does try to understand.
36 year old female. Dx'd and undx'd a few times. Was just redx'd again 04/2007.
History of rectal abscesses and fistulas (28 surgeries including abscess I & D, exploratory surgeries, 2 C-ton drains and 1 fistula plug) Count does not include self bursting abscesses.
1st Remicade infusion 6/5/07.  Lots of joint pain, and a new fistula since the 2nd infusion 6/19.
Praying I'll get better soon so we can have a baby.
Ginger :)


songstress
Regular Member


Date Joined Jul 2005
Total Posts : 393
   Posted 8/17/2007 4:30 PM (GMT -7)   
YEAH I think Ive decided I will not talk about my illness anymore around them. AND IM definitely not going to tell them what treatment the doc gives me!

Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength

Diagnosed with severe Crohn's colitis in May 2005. I deal with daily arthritis ALL over my body, cystic acne, & fibromyaglia. Have taken Imuran, Remicade, TPN, Colozal, Entocort, Flagyl, PamineForte, Cipro, Dicyclomine, Prednisone, Asacol, Prevacid, and the list goes on. Taking low amounts of Pred now & 3600mg of Asacol currently...Can't wait till I can get back on Remicade, my miracle drug!


Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 8/17/2007 4:54 PM (GMT -7)   
That's the ticket. I've stopped talking to just about everyone. They really don't get it. Even my father who lived with my Mom who had CD for their whole marriage doesn't get it, so I just don't try anymore. I talk to my Husband, who is wonderful, and my kids. Occassionally my friends, but not much because I don't want to be a Debbie Downer.
Suzanne

CD 19 years offically, 29 unofficially. 3 resections '93, '95 '97
Symptoms constantly but all tests show only minor ulcerations. Currently having multiple episodes of gastritis with no known cause.


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


ginger71
Veteran Member


Date Joined Nov 2005
Total Posts : 722
   Posted 8/17/2007 5:20 PM (GMT -7)   
Oh yes, my husband is wonderful. Very understanding and if it weren't for him I'd be really stressed.....I never knew that kind of understanding growing up. My mom just keeps trying to get me to drink prune juice in between telling me to just get pregnant and complaining about her hemrrhoids.....I'm not joking!
36 year old female. Dx'd and undx'd a few times. Was just redx'd again 04/2007.
History of rectal abscesses and fistulas (28 surgeries including abscess I & D, exploratory surgeries, 2 C-ton drains and 1 fistula plug) Count does not include self bursting abscesses.
1st Remicade infusion 6/5/07.  Lots of joint pain, and a new fistula since the 2nd infusion 6/19.
Praying I'll get better soon so we can have a baby.
Ginger :)


tiredtoo
Regular Member


Date Joined Sep 2006
Total Posts : 25
   Posted 8/17/2007 9:51 PM (GMT -7)   
I can relate songstress. My wife is great, she understands she has rheumatios arthritis. so she can relate to at least that part of my crohn's. My kids on the other hand think I'm making it all up. It also seems like the people at work think it's cool becouse I can't work every day. "Wow must be nice having so many free days off" Oh yea its great feeling like **@#$% every day. Its easy to fake things for a short time, but not for year after year. best wishes to you and hope you feel some relief soon.

Marie-Claire
Veteran Member


Date Joined Mar 2007
Total Posts : 900
   Posted 8/17/2007 11:01 PM (GMT -7)   
Songstress....I empathize with you. I've been living with this darn disease for so long and I think the ONLY people that have ever understood, truly understood....are you folks. When I found this forum, I felt a big weight come off my shoulders....I almost cried. It was sooooooo nice to be able to talk to someone who gets it. If I say I'm hurting, my bones, my head, my tummy.....I know that you will all get it. I think of you people when I'm walking along with both my crutches and my legs and hips are so sore. I'll say to my daughter, honey I think I've had enough, I need to go home now....she relinquishes out of love for me, but I know she has no idea. .....although, she is pregnant at the moment and is feeling some fatigue, some hip pain, headaches....you know the regular pregancy scenario , so I think she is beginning to understand a little better.
Tired old Mary
P.S. Vent all you want dear heart!
50 yr.old retired RN,Crohn's D for last35 yrs..severe esophagitis, migraines,strictures,urethral stricture,depression,probable MS.
 
 


karendee
Veteran Member


Date Joined Mar 2007
Total Posts : 1642
   Posted 8/18/2007 6:43 PM (GMT -7)   

I can understand. In fact the other day you may have seen my post on tylenol. I honestly was so sick of my back hurting I wanted to take a handful. Thank goodness I didn't. My rheumy says tylenol is all that I can take even though I told him it does not work. I almost feel like he thinks I am lying too.

right now my back is really hurting along with my gut. I took 2 tylenol and I know it won't help.

recently I started to cry because I think I will be in pain the rest of my life and i am 31. I think it bothers me more because the pred I took recently gave me some relief and I felt good for a little while.

I probably don't have as much pain as others here but I can sympathize and I don't think you are a hypochrondiac. I think you are just really hurting and the healthy people in your life just don't know how that feels.

I hope you get some relief soon and some answers from that scan. Let us know how that goes.

take care,

Karen


 ...

Karen (Karendee)

Diagnosed w/ Crohn’s Disease  March 2007 On Azathioprine (generic Imuran), Pentasa, & ENTOCORT

Diagnosed w/  Fibromyalgia May 2007 also on Cyclobenzaprine (generic of Flexeril)

Also taking Multivitamins, B Vitamis, Biotin, and Extra Folic Acid. (might add more when I do more research)


tinglebell
Veteran Member


Date Joined Apr 2007
Total Posts : 531
   Posted 8/18/2007 7:08 PM (GMT -7)   
I just recently weaned off pred, am on remicade x 3 doses now, and I just went to the rheumy also who told me to take ES tylenol for my neck and finger joint swelling and pain. I think he thought I was going to ask him for pain meds. If he were the last doc on earth I wouldn't ask him. I can get what I need from my PMD. Usually I take 1 or seldom 2 Lortab a day. And yes, my sisters are afraid I will be a junkie. The problem is most people know that I have been ill and they always ask, "how are you feeling". Well my answer has been lately, not much change. I don't feel great. (Spent 2 days in the hosp last week for vom, h/a and D). Two relatives said, we didn't know. First of all, I am too sick to talk to anyone, and my s/o was watching out for me at the hosp. I think it may have been withdrawal from steroids. I met 2 very dear ex-coworkers while I was there, and they said, "I didn't even know you had crohn's".
Karendee: Can't your PMD prescribe lortab or something for your pain? It doesn't even make me drowsy, it makes me more ambitious because I feel better. If you don't overuse, your doc should have no problem giving you a scrip.
DIANNE
Diagnosed at age 19 with CD.
3 small bowel resections, 1 for perforation, 2 for strictures 
 


songstress
Regular Member


Date Joined Jul 2005
Total Posts : 393
   Posted 8/18/2007 8:02 PM (GMT -7)   
well I think I am saying this right..but isnt MY PAIN subjective NOT objective?? Why does anyone much less a doctor think that they can tell someone they are NOT hurting. I really hope that I dont get a doc that says take Tylenol becuz I do and it DOESNT work and I take ibprofen like candy even tho I know its not good for me but its anti-inflammatory and definitely has more of an effect on joint swelling/pain then some Tylenol.

Karendeee..ur in my thoughts..of course I know how u feel and thx I will let everyone know what happens with the scan. I want others to know on here, that they are not alone. Our pain is real, this illness is real..it doesnt have to control our lives. And I nor others should have to live with daily pain at least we should have something to control it!

Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength

Diagnosed with severe Crohn's colitis in May 2005. I deal with daily arthritis ALL over my body, cystic acne, & fibromyaglia. Have taken Imuran, Remicade, TPN, Colozal, Entocort, Flagyl, PamineForte, Cipro, Dicyclomine, Prednisone, Asacol, Prevacid, and the list goes on. Taking low amounts of Pred now & 3600mg of Asacol currently...Can't wait till I can get back on Remicade, my miracle drug!


karendee
Veteran Member


Date Joined Mar 2007
Total Posts : 1642
   Posted 8/19/2007 6:08 AM (GMT -7)   
thanks both of you! I wll ask my other Dr for something for the pain. Maybe he will be more symathetic.
Karen

 ...

Karen (Karendee)

Diagnosed w/ Crohn’s Disease  March 2007 On Azathioprine (generic Imuran), Pentasa, & ENTOCORT

Diagnosed w/  Fibromyalgia May 2007 also on Cyclobenzaprine (generic of Flexeril)

Also taking Multivitamins, B Vitamis, Biotin, and Extra Folic Acid. (might add more when I do more research)


songstress
Regular Member


Date Joined Jul 2005
Total Posts : 393
   Posted 8/19/2007 6:24 AM (GMT -7)   
karen make sure u let him know that he "can't" feel your pain so how can he know how much you are in..remember pain is not objective GL KUP!!!!!!!

Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength

Diagnosed with severe Crohn's colitis in May 2005. I deal with daily arthritis ALL over my body, cystic acne, & fibromyaglia. Have taken Imuran, Remicade, TPN, Colozal, Entocort, Flagyl, PamineForte, Cipro, Dicyclomine, Prednisone, Asacol, Prevacid, and the list goes on. Taking low amounts of Pred now & 3600mg of Asacol currently...Can't wait till I can get back on Remicade, my miracle drug!


Matthew
Veteran Member


Date Joined Oct 2004
Total Posts : 3932
   Posted 8/19/2007 8:04 AM (GMT -7)   

 

 

             This is why I don't discuss my illness with my relatives at all, unless to mention I cannot drink or eat a certain food item. Also, if someone asks how are you today? My reply is been better, been worst. Let them decide how to take that.

 

       Matthew


karendee
Veteran Member


Date Joined Mar 2007
Total Posts : 1642
   Posted 8/19/2007 10:00 AM (GMT -7)   
thanks Songstress! that is so true no one can feel what I am feeling.

Matthew I might have to steal your response. Sometimes I get the feeling people really don't want to know how I am feeling. They just ask to be polite :)

Karen

 ...

Karen (Karendee)

Diagnosed w/ Crohn’s Disease  March 2007 On Azathioprine (generic Imuran), Pentasa, & ENTOCORT

Diagnosed w/  Fibromyalgia May 2007 also on Cyclobenzaprine (generic of Flexeril)

Also taking Multivitamins, B Vitamis, Biotin, and Extra Folic Acid. (might add more when I do more research)


Hayleybaby
Regular Member


Date Joined Aug 2007
Total Posts : 76
   Posted 8/19/2007 2:33 PM (GMT -7)   
Have you ever had your liver enzymes checked since you are on Imuran?? That caused me severe joint pain that landed me in the hospital for 6 days because my enzymes were dangerously elevated from Imuran.
 
And yes, I hate talking to my family. As my mom says "aah poor Rachel, lets have a pity party, it always has to be about Rachel". Many a days in my mind I tell my mom to go f--k herself. I know thats not cool to say about your mom, but I'm fed up with her negativity, cinacism, sarcasm, and just plain sick of hearing her speak everytime she opens her mouth. devil
 
I can't moan and groan about my pains yet she can talk down to me and yet in the very next breath swear up and down I have arthritis, osteoporosis, and colon cancer just because I have CD and she says, "well that's what CD causes in people". Mother just shut up--you have no idea cuz everyone is different.
 
Sorry didn't mean to take over your vent session.
30 yr. old dx with CD 10 years ago. Currently on folic acid and azulfadine.  Had ileum removed and resection May 2007.  Just started back to work after being off 13 weeks.  Still feeling lousy.  In the process of trying to get approved to start Humira ASAP!!!!  It scares me immensely!!!!
 
Allergic to: Asacol, Pentasa, Imuran, Paxil, Zoloft, Penicilian, Ampicilian
 
And prednisone does not work for me anymore!!!


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 8/19/2007 5:11 PM (GMT -7)   
hi Song I know that pain can stress us out when we have it and sometimes maybe we do sound a little hypo.... anyway I guess it sort of comes with all those times we feel like this has gotta stop hurting .Really hope your Drs. can help you that is a long time to be hurting. lol gail

keepingthefaith
Regular Member


Date Joined Aug 2006
Total Posts : 331
   Posted 8/19/2007 5:47 PM (GMT -7)   
I've come to realize, if its not one health issue, it's another, we're not faking, its just always different each day & thats why we 2nd guess ourselves.  I have learned to keep my mouth shut on my medical issues & most everything else, unless, well, maybe, its family.  God Bless

Dx with CD 1987, 3 resections, 3 abcess sx, OA back & hips, bulging disk, depression/anxiety, kidney stones & sx to remove, now 44 yrs old.  Still trying to figure this disease out & of course all the little extra complications that come with this rollarcoaster of a life with CD. I love BON JOVI MUSIC- Lost Highway, Keep the Faith; Living on a Prayer,
 
Meds:  Hurmira every other week 80 mg, Imuran .75 daily,xanex .25 nightly(prn in the day), cymbalta 40 mg daily, Lortab 7.5/500 x 4x, fish oil, fovia,vit e,folic acid,Vit B12,inject monthly,
 
         
 
 


karendee
Veteran Member


Date Joined Mar 2007
Total Posts : 1642
   Posted 8/20/2007 6:43 AM (GMT -7)   
songstress, isn't it great you thought you were just venting and others feel like you do too! You certainly helped me a lot. I hope you realize that.

Let us know how you are doing.

Karen

 ...

Karen (Karendee)

Diagnosed w/ Crohn’s Disease  March 2007 On Azathioprine (generic Imuran), Pentasa, & ENTOCORT

Diagnosed w/  Fibromyalgia May 2007 also on Cyclobenzaprine (generic of Flexeril)

Also taking Multivitamins, B Vitamis, Biotin, and Extra Folic Acid. (might add more when I do more research)

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