"most people with Crohns don't have pain"

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xraygrrl
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Date Joined Aug 2004
Total Posts : 102
   Posted 2/9/2009 7:09 AM (GMT -7)   
This is what my primary care doctor told me on Friday when we were discussing my hydrocodone prescription.  I then embarrassed myself with a frustrated blubbering meltdown & then she apologized & agreed to continue my prescription.  I'm glad I had finished up my prednisone a couple of weeks ago or I may have Hulked out & trashed her office instead.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 2/9/2009 7:12 AM (GMT -7)   
Just shows that not all doctors really know this disease. I am in remission of sorts and still have daily pain, mainly from the joint pain associated with Crohns. If I didn't have my pain killers I would be in a world of hurt. Glad you still got your meds.

Hugs,
Gail *Nanners*
Gail*Nanners* Co-Moderator for Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 2/9/2009 7:13 AM (GMT -7)   
(((((((((xraygrrl)))))))))) I am sorry she said that.

How in the world do they expect that this disease is not painful...


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…

Post Edited (MMMNAVY) : 2/9/2009 7:16:54 AM (GMT-7)


conorconan1
Regular Member


Date Joined Oct 2008
Total Posts : 245
   Posted 2/9/2009 7:25 AM (GMT -7)   
if only these people couyld feel the pain that the rest of us feel I bet they would change their minds ion a second. xraygrrl, no shame in needing your pain meds. I would be lost without my Remedeine tablets for my pain. My GP thankfully understands that and has me taken them 6 per day, on a long term script!
DX November 2008 - after years of searching for an answer
 
Prednisolone 50mg -Omeprazole 40mg for acid reflux - Buscopan 10mg (a daily) Remedeine 30mg-Probiotic


JAB
Regular Member


Date Joined Nov 2003
Total Posts : 351
   Posted 2/9/2009 7:42 AM (GMT -7)   
Your primary care doctor may want to have a conversation with a specialist (gastro). Perhaps then she maybe convinced otherwise. That is just ridiculous.

Kaycie
Regular Member


Date Joined Jan 2006
Total Posts : 449
   Posted 2/9/2009 8:11 AM (GMT -7)   
Wow... I'm so sorry!

Luckily, my surgeon understands. In fact, I just ran out last night and am putting a call into them now to get a refill. I have meltdowns with them too because I feel like I'm abusing them, though I know I'm in a lot of pain. It's such a difficult thing. But, like gail, I'm not functioning without them at the moment because my joints ache tremendously from the Crohn's and on top of that I'm having LOTS of gut pain...
Kaycie - Age: 26
Crohn's - Dx Nov 05
Failed Remicade, moving onto a Clinical Trial called ABT-874 - Tentative start date - 10/2/08 - 10/16/08  - Infusion, every 4 weeks.
IVF #1 (In-Vitro Fertilization) - Failed
IVF #2 - IVIg, Heparin, Baby Aspirin - TWIN GIRLS!!!
Reagan Dawn - 8/2/07 - Lived 1 hour 27 minutes due to Cloaca, NOT affiliated with my Crohn's
Addison Maria - 8/2/07 - 13 months old


xraygrrl
Regular Member


Date Joined Aug 2004
Total Posts : 102
   Posted 2/9/2009 8:32 AM (GMT -7)   
Thanks everyone. I was pretty upset all weekend. When I left her office, I just sat in my car & bawled. I never felt like I was abusing it, I can only take a half of one at a time because a whole one makes me nauseous. I've never taken more than 1 1/2 a day but she made me feel like a drug addict. This was after I had spent half the night awake with a stabbing pain in my gut. Last night, my aching elbows woke me up all night. I would love to pain free & not have to take anything. We didn't ask for this!

sassy28
Regular Member


Date Joined Jan 2009
Total Posts : 64
   Posted 2/9/2009 8:42 AM (GMT -7)   
Every website on Crohn's lists pain as one of the symptoms, usually it is the first one listed! Strange. I am sorry you had that experience. I hate when Dr. do that.

isergodur
Veteran Member


Date Joined Jan 2009
Total Posts : 831
   Posted 2/9/2009 8:43 AM (GMT -7)   
I wish your doc was right but unfortunately she is wrong :S

I was awake all last night with the worst cramps in stomach :( i had to take morphine pills to keep the pain away, i try to be very careful when using such strong pain pills but sometimes nothing else works.

I feel constant pain all day, if not my stomach than my joints or my eyes or my soul :S

I feel for you, i am always afraid docs will think i am some kind of a druggie, but i am not just in a lot of pain.
24 year old female

Diagonsed with Crohns disease in December 2008..

Medication - Asacol, Remicade, Entocort


Becoming undone
Veteran Member


Date Joined Jul 2007
Total Posts : 927
   Posted 2/9/2009 8:57 AM (GMT -7)   
so many docs are afraid...DEA, losing their license, their freedom...
So I see a pain management specialist. The best thing I ever did. The meds also had the side effect of slowing my GI system down, so I only use the restroom about 3 times per day...
I too felt like a user (people can be cruel, and many have never experienced true illness and pain). The PM doctor can come up with different options and education too. To have some life back, instead of being curled up in a ball on the bed or couch, it is worth the price. Hey I'm able to type this.
BTW, the Chronic Pain portion of this site is great...you can find a lot of information...there are some really good people there with good information, who suffer more than I...I hope this helps...

FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 2/9/2009 9:53 AM (GMT -7)   
Why don't you email her links to websites that describe Crohn's symptoms? Then ask her why she said what she said. Sounds to me like she needs to go back to school. If she is going to take on the responsibility of treating a patient with a chronic disease, she needs to be responsible and become really knowledgeable about it.
Diagnosed with rectal Crohn's in early 2007.  Several peri-rectal abscesses and two fistulae with setons.  Allergic to Remicade and Humira.  Currently on 6MP, and vitamins D and B-12.


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 2/9/2009 11:54 AM (GMT -7)   
It was a stupid and insensitive comment that your doc made....that said, I actually don't get pain, not in the guts anyways, only at my most severe of flares I had bad enough lower back and anal pain to put me into tears every single time I had to use the can (30 times/day), other than that I don't get gut pains which I've always found odd, but I believe most do have gut pains and your doc should probably get the 411 when it comes to IBD before making such statements.

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


Celey
Veteran Member


Date Joined May 2007
Total Posts : 1284
   Posted 2/9/2009 12:52 PM (GMT -7)   
Abdomen pain was pretty much the first symptom I had regarding Crohn's... //>.>\\'... And, no, I didn't think it was Crohn's... heck, when the pain first started up (in the morning) I thought it was just a simple stomach ache... So, I went to school.... it got worse... and worse.... and worse.... I made it until the end of school... but the moment I got home... I got on the bed, curled up in a ball.... wanting to rip my guts out because the pain was so bad.... Again, I refused to believe there was anything seriously wrong with me... It was a stomach ache, I thought.... just a stomach ache... it will go away, it will go away...

One of my aunts came into the room to yell at me for laying down instead of doing housework... Then, she noticed that I was in tears from the amount of pain I was in... She tried to convince me to go to the hospital... I didn't want to go to the hospital... I had school tomorrow (yes, this was my exact mind-set. I'm such a nerd.)... Then, she said I might have appendicitis... Well, this got me ready to go to the hospital... "I DON'T WANT MY APPENDIX TO EXPLODE!" Well... turns out I didn't have appendicitis, but Crohn's...

So... pain is most definitely a symptom... And one of my main symptoms when I am flaring (I don't have a tendency to get diarrhea, but I do have really bad constipation during a flare)...
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.


SeanM
Regular Member


Date Joined Dec 2007
Total Posts : 44
   Posted 2/9/2009 1:34 PM (GMT -7)   
I would be completely lost without my percocet script, it dulls the aching associated with joint pain but most importantly it slows down my digestive tract and takes away the persistent and knawing gut pain. My GI is great about understanding and never questions when I ask for refills. Sometimes a script of 60 count 5/325mg lasts me 4 months, sometimes it lasts a month, it really depends on my physical state.

My reg physician gives me a hard time and I can't stand when I get the stare down at the pharmacy counter. Makes me wish that these peeps could walk in our shoes for just one day. Maybe experience taking 20+ BM's a day, experiencing that gut wrenching pain or worry about going to sleep because your worried about not being able to control your bowels because your bottom is so diseased.
32 yr old male
Diagnosed with Crohns in 1994 (lower bowel/ileum)
Medication history:  prednisone, azacol, sulfasalazine, cipro
Current Medications: entocourt (periodically-as needed), Remicaid, flagyl
Surgeries: 2002 (remove fistula), 2004 (6" of ileum removed)


survivor49
Regular Member


Date Joined Oct 2007
Total Posts : 241
   Posted 2/9/2009 2:56 PM (GMT -7)   
My GI was kind of the same way- she said that she did not like to prescribe pain medicine because it may "Mask" something. I had to ask this woman to feel my abdomen- she had not touched me since the initial visit, 4 months ago (i see her monthly). Once she felt my abdomen she said_OOH, you are tender, and wrote me an rx for flagyl. it would be nice of all of the people that judge us had this pain for a day.

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 2/9/2009 6:10 PM (GMT -7)   
Hi I think some Dr.'s are in the mind set that if we mask the pain, then when a emergency situation arises people might put off going to emerg.. saying that most people don't get pain is rather strange as it seems to effect one area or the other in our bodies. Don't let Dr.'s make you feel belittled though because we have different issues and needs at different times with this disease. We all share your frustrations though and your in good company here.. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


Margie11
Regular Member


Date Joined Aug 2008
Total Posts : 467
   Posted 2/9/2009 9:04 PM (GMT -7)   
This ticks me off so bad, I don't even know where to begin to respond. I wouldn't wish crohn's pain on anyone, but for a day, and she'd get it.


              Never go faster than your guardian angel can fly!                  
     Be Patient And Tough, Someday This Pain Will Be Useful To You
               I get by with a lotta help from my friends!     
 Crohn's DG 2003 , symptoms included terrible joint and soft tissue pain, just met first cousin who suffers from Reactive Arthritis-explains sooo much.
      Followed SCD Strictly 2003-06, then modified by adding new things 10-12 days apart to avoid delayed reactions in the form of arthritis symptoms. Scope on 2-5-09 was great! Doc says no symptoms,No scope for 10 years!!!
                                                                                    Margie11

Post Edited (Margie11) : 2/10/2009 11:28:45 AM (GMT-7)


randynoguts
Veteran Member


Date Joined Jan 2003
Total Posts : 6049
   Posted 2/9/2009 9:45 PM (GMT -7)   
X-grrl, thats too bad. maybe print out something online from CCfa etc.. and give it to her next visit.or have her look at my website..
randynoguts 



     http://www.geocities.com/randynogutsweb/


aquagirl900
New Member


Date Joined Nov 2008
Total Posts : 17
   Posted 2/9/2009 11:13 PM (GMT -7)   
My doc is always willing to write a script for pain...but...my problem is pain meds don't help me...when I was in the hospital with my abcess and subsequent surgery...the ONLY thing that would help was 2mg dilaudid IV q 2 hours...oral meds just don't work...and morphine didn't work...

I wish I could find something to help me with the pain I get periodically...I have 7.5 mg vicoden which pretty much helps me as much as tylenol helps the avergae Joe...

Texan with Crohn's
Regular Member


Date Joined Dec 2007
Total Posts : 362
   Posted 2/10/2009 5:19 AM (GMT -7)   
I wish we could live without pain. I spent a great deal of yesterday at work trying not to cry due to pain. I broke down and called my PCP and left a message asking if there is such a thing as a time-released pain pill because the hydrocodine stuff wears off leaving me to hide for about 1/2 an hour before the next one starts working. I don't know about anyone else but I am just emotionally spent from the suffering that CD is causing. Again morning, I awoke and can hardly walk, type, hold a cup... and have that immense sharp pain in my gut.

I am tired of being looked upon as some kind of drug seeker because I am in pain.

I am tired of taking so many medications and vitamins.

I am tired of doctors.

I am tired of all the medical bills. I just filed my taxes. I paid out 19K last year in medical expenses... yes 19K. Good thing I saved all my receipts.

I am... tired.

I just want to curl up into a ball and cry.


{too many I's in this... but there is no "I" in my life, no time for any "I"}

xraygrrl
Regular Member


Date Joined Aug 2004
Total Posts : 102
   Posted 2/10/2009 6:54 AM (GMT -7)   
Hey Texan, I'm a Texan too! Sometimes you need it to be about yourself. And sometimes you need to curl up into a ball and cry. I have to say that I felt much better after I cried in my car. I usually try to put on the brave face & not let on about how frustrated & depressed I am about this whole thing but it felt good to finally give in & let it all out. You go & have yourself a good cry. Hugs!

Becoming undone
Veteran Member


Date Joined Jul 2007
Total Posts : 927
   Posted 2/10/2009 9:24 AM (GMT -7)   
Texan,
Me too. just crying right now. Too many tears...too much pain... too much of everything...
Don't want to let it show to those who mean the most to me either.
I am glad that I have a good PM doc. One of the best decisions ever, but I am too am tired of all the meds and all the doctors (I now am supposed to see a rheumatologist as arthritis is my hands is getting real bad (joints are being disfigured)).

xray: what different docs do you see? is it hard to get a referral or are you in a rural area where docs are hard to come by?
BTW, AZ just got hit with some MAJOR storms which I think have gained strength and headed your way.

karendee
Veteran Member


Date Joined Mar 2007
Total Posts : 1642
   Posted 2/10/2009 10:11 AM (GMT -7)   

Wow, that is stupid of the Doc to say.

We all know that is a bunch of crap. I have pain even when I am currently in remission.

 

hang in there... I am on pred for a sinus infection and I went nuts last night. I was a crazy person... I could imagine if you just went off you may also be having some emotions that are harder to handle as I taper I can feel the weepy part of me coming out more.

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

 

 


mojowo4
Regular Member


Date Joined Jul 2007
Total Posts : 137
   Posted 2/10/2009 10:57 AM (GMT -7)   
My doc is reluctant but does give me oxycodones. I try to ration them out and use them only a couple times a month so when I go in to get a refill I can "justify" asking again by saying, "look how long it took me to use the last script!" I feel like an adict too even though I carefully ration. I probably could take more but am so scared of becoming dependant. It would be so wonderful to a) have no pain or b) have good pain meds with no side effects or guilt trips!

Dx CD 2003 but probably had it 10 years prior

Dx Primary Sclerossing Cholangitis 2006

GB out '95, Appendix out '96, Kidney stent '02/stone removal '02, Resection '04, fistulectomy '06 2x, tubal '05

Currently on 100mg 6mp-50 mg,  and Remicade every 8 weeks, Ambien, predsnisone, humira 1x wk, flagyl, cypro, diflucan, probiotic


indigosunrise
Regular Member


Date Joined Nov 2007
Total Posts : 497
   Posted 2/10/2009 11:26 AM (GMT -7)   

I think it is so sad the "bad rap" that goes along with being on pain meds.  It is sad that some pharmacists would actually give people the stare down. 

This is a painful disease....at times, very, very painful.  I have had horrible stomach pain, arthritis, and I cannot begin to tell you how bad Scleritis hurts when my eye flares up!  How anyone could think this disease DOESN'T have pain is beyond me. 

I am so sorry your doctor said that.  I hope you start to feel better soon!

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