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gracekalli
New Member


Date Joined Nov 2007
Total Posts : 5
   Posted 11/14/2007 7:57 PM (GMT -7)   
Ok, here's the thing...my gastro dr says my pain is all in my head and not to take pain meds EVER...he thinks that soon I will not be treated for my pain because they'll start to think all I want is pills...which isn't true...I'm sick of pills...I want to get better so I don't have to take pills...But that's not the whole of my situation...I have been diagnosed with Crohn's for about 3 years now.  I've had everything from Uveitis to the Iron injections.  I have to start the injections again soon.  But here's the thing...I'm losing weight...I can't hardly get up and do anything...the more pills they give me, the more I throw up...there is blood when I go to the bathroom, which btw is very frequently...my stomach and abdomen hurt so bad that I have a hard time even moving or it gets worse...eating makes the pain worse...and my doctor says it's all in my head, that I'm not coping well...what do I do?  My primary care physician has given me vicodin but I think it's making my pain worse and I do not want to rely on pain meds to function...I requested another colonoscopy or any other test to find out why it's so bad and was told no...neither my primary care physician nor my gastroenterologist will help me...they do blood tests and give me more pills which don't work even after I've taken the entire amount prescribed...obviously, something is not right...unfortunately I live in a town where the majority of people ARE looking for drugs...and I am getting NO help...I am expected to just deal with this...I have a 3 yr old and I can't even get up long enough to make her dinner...what do I do???

dustspeck
Veteran Member


Date Joined Sep 2007
Total Posts : 565
   Posted 11/14/2007 8:09 PM (GMT -7)   
my god. that is just terrible. you need a new gi immediately! i have been in pain (and the stupid d is coming back from my pred taper UGH) for so long and i have been working my way up the drug tiers to find something that works. for someone to look me in the eye and tell me my pain is not real ...it would take all my effort not to pop em one square in the nose! i am beyond shocked. vicodin helps with my pain to an extent. it tends to numb my belly up but if i am having a bad day i will still get the occasional stabbing pains in my upper abdomen out of nowhere. but seriously, you need a better, caring & understanding gastro immediately! those symptoms are nothing to mess around with!

good luck & do take care.
.: stephanie :.
32 y/o female diagnosed 8/8/7 with crohn's of the terminal ileum w/ stricture/scarring
currently taking 15mg prednisone (getting there!), 25mgs 6mp, 4000mg pentasa, vicodin for pain & boat load of drugs for sleep and anxiety!


yogaprof
Veteran Member


Date Joined Apr 2006
Total Posts : 1665
   Posted 11/14/2007 9:39 PM (GMT -7)   
welcome Grace and I am so sorry you are having such a rough time. many of us here are on pain meds. often we get them from a PCP rather than a GI.
what is your GI doing for you? take care, yp
48 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. In December had adhesions cut through a laparoscopy. Now just taking Glycolax, metamucil, and began Humira 9/07.


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 11/14/2007 9:45 PM (GMT -7)   
As much as I agree that you should get pain meds when you need them your pain sounds severe. I really think you need a new GI who will get to the bottom of what is causing your pain. Obviously it is crohns but they need to find out why and get your crohns under control. Until then, you should be given something to get you through.
26 Year old married female.  Diagnosed w/ CD 3 years ago, IBS for over 10 years before that, which was probably the CD.  Currently on Pentasa 4 pills/4x day, hysociamine prn, nexium, and ortho evra.  Good times!!!
 
 


gracekalli
New Member


Date Joined Nov 2007
Total Posts : 5
   Posted 11/14/2007 10:08 PM (GMT -7)   
well I HAD vicodin...now they've canceled it...I was getting it via my pcp whom I can rarely get in to see...my GI dr thinks it's in my head and suggested I go see a psychologist...so as of now, I have only Asacol, Lonox, Hyoscyamine, Imipramine, Cipro, Flagyl, and a number of other medications that aren't doing anything.  But my pcp isn't that bright either...he upped my pred and left me on a high dosage which caused toxicity and that's not the first thing he's done that's caused problems...All that is happening now is blood tests...lots and lots of blood tests...to which my GI dr responds "the results are probably the cause of the medication you're on"...but doesn't tell me what they are or what they mean...I've been told I have diabetes...but I don't...unfortunately it seems as if I have doctors who never should have gotten a degree...

gracekalli
New Member


Date Joined Nov 2007
Total Posts : 5
   Posted 11/14/2007 10:11 PM (GMT -7)   
Oh, and my pcp and my GI dr very rarely agree on my diagnosis...they are often on opposite sides on how to run my medications...yet they do not talk to eachother...

jodyisme
Regular Member


Date Joined Dec 2006
Total Posts : 70
   Posted 11/14/2007 10:25 PM (GMT -7)   
i really send you good thoughts and prayers on this.
 
i would run so fast to a new dr the old one would taste my dust. who does he think he is? you are entitled to a copy of all your tests, and if you cant read them, come online and look up the words you dont know. i did this when my dad had cancer, and man, i learned a lot real quick. it just isnt as hard as they want you to believe. it doesnt take any magic to understand lab values or definitions. just a common sense brain. (i only have a high school diploma).
 
i hope you find a good dr real soon.  jody
 
 

gracekalli
New Member


Date Joined Nov 2007
Total Posts : 5
   Posted 11/14/2007 10:27 PM (GMT -7)   
really? I didn't know you could do that...where would I go online to look that type of thing up?

curley
Veteran Member


Date Joined Mar 2005
Total Posts : 4305
   Posted 11/15/2007 3:48 AM (GMT -7)   
Welcome,I am so sorry that you are having to go through all of this and I know how hard it is to have to go through all of this.I know where you are coming from I seen a GIone time and before my ex-husband and I could set down the first words out of his mouth was I do not script pain meds because people with Crohns do not hurt yea right.Well I told my other GI this and this was what he had to say how in the h***does he no because he want me and that was a bunch of b*******because people with Crohns did have pain.So my GI scripted my pain meds untill I got divorced and moved back to my home town in another state.If I was you there is two things that I would do and one of them is to is to get another GI and to get your PCP to referr you to a Pain Clinc.I for one don't like having to take all of these meds either and I don't like having to take pain meds either but with out them I wouldhave no life because I would stay in bed curled up in a ball all of the time other wise.Good luck and please let us know how you are doing you are welcome any time.
Curley
.........
 


Sway_79
Regular Member


Date Joined Nov 2007
Total Posts : 47
   Posted 11/15/2007 4:44 AM (GMT -7)   
Grace,

It's easy for people and doctors to "know" that we don't have pain based solely on studies. Ask him this... Does he live inside your body? Does he have Crohn's? Then he can't possibly know how you feel. :-)

I've had the pain med battle myself. It seems most of us have been on antidepressants at one time or another (there seems to be a link to serotonin reuptake inhibitors assisting in Crohn's). We *do* have pain. It's literal. It's there. Ask to see this so called proof that he has that we *don't* have pain.

You very well can ask for copies of your tests, his notes from your appointment, whatever you want. The internet is a great tool for research. Plenty of reliable medical sites out there for people to research their test on their own! They are your records about your body....you are most definitely entitled to them!

But please try to find another GI....you don't need this stress in your life. We aren't drug addicts, we're just trying to make it through each day without being in pain. Is that so much to ask?

Best of luck,
~Sway

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 11/15/2007 5:46 AM (GMT -7)   
Hi Grace Would think about a change in DR's at least have someone go with you if you can till you are feeling better. You mentioned that you are vomitting up your meds. There are meds that can be given by infusion like Remicade, and given by needle like Humira. Has your Dr. suggested these drugs? What are the results of your scopes are they showing inflamation or narrowing and have you had a CT to rule out abcess and fistula's ?How long have you been loosing weight and how much? Can you take ensure or boost to help you with that ,it helped me alot. Are your BM's all water just wondering if stool is getting threw sometimes I get C and have to get things working again. What is he saying about the bleeding? What is causing this? You need to take someone with you to your app. and get some answers .Best Wishes and let us know how things are going .lol gail

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 11/15/2007 8:06 AM (GMT -7)   
You definetly need to find TWO NEW doctors. No one should have to suffer like that. Curly's suggestion about a pain management doctor is a good one. You really need to have more tests other than just bloods done. Find yourself a new GI soon. By the way if you get copies of your lab tests you can go to labtestsonline.com to help you read them.

Good luck and God Bless,
Gail *Nanners*
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.


rootsmith
Veteran Member


Date Joined Jan 2004
Total Posts : 598
   Posted 11/15/2007 9:41 AM (GMT -7)   
The federal legislation referred to as HIPAA allows you to have copies of your medical records. I think you were always allowed to have them but it may have been state legislated and also, sometimes even when something is legal,people can still give you a really hard time. Not so anymore.  The law also allows them to charge a reasonable amount of money for these copies.   The problem with this is in a hospital record, for example, there are pages and pages of nothing more than maybe a few words and a signature. The hospital where I work charges $10.00 for the first page and I think either 25 or 50 cents a page for the rest. This can really mount up so if cost is important to you be selective in what you request i.e. operative reports, discharge summary, whatever.    I have never had the experience of a doctor's office charging me for copies of any of my test results. I just tell them I like to keep copies of any significant test and procedure, what do I need to sign for that?  They have never challenged, or charged, me.  
10 years, many tests, 3 gi doctors, Pentasa 1000mg 3x day
diovan, simvastatin and now trying good ol' zoloft


there's Hope
Regular Member


Date Joined Nov 2006
Total Posts : 145
   Posted 11/15/2007 3:05 PM (GMT -7)   
You have the right to have your pain assessed and to be given adequate relief! I get my pain killer from my PCP as my GI didn't feel he needed to prescribe it since my Crohn's is in "remission" I have learned remission doesn't mean the symptoms go away and I still need pain relief if I want to try and live a normal life. Don't let them tell you it is in your head, Crohn's is painful! If its not your belly its your joints, just no fun. F what they think- go get a different doctor and get the treatment you deserve
26 year old female. Dx with UC in June 2003. Flare up in June 2006 led to CD dx.
Current Meds: Remicade, Asacol, Bentyl, Phenergan, Reglan, Ultram, Celexa and Seaonale, Fish Oil, Lacto and a Multi Vitamin

"There's Hope. It doesn't cost a thing to smile; You don't have to pay to laugh; You better thank God for that!"


gumby44
Veteran Member


Date Joined Nov 2007
Total Posts : 4097
   Posted 11/15/2007 3:27 PM (GMT -7)   
I believe that you absolutely need another GI. It's bad enough to be sick and in pain...your doctor should be working WITH you to help you get better, not work against you and make you feel bad about yourself. I like my GI but my internist was a real jerk, and I believe I would have been diagnosed sooner if I had an internist who listened to me instead of telling me everthing was "Stress related." It is worth going to another town for a consultation if there is no one in your town who will help you properly! Go to the Crohn's foundation website www.ccfa.org and get a physician referral. Good luck!
48 yr. old female, diagnosed with Crohn's Sept-Oct. 2007

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