We still have a long way to go....(the topic of Crohn's) Warning: I am venting

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Regular Member

Date Joined Jul 2007
Total Posts : 188
   Posted 3/20/2009 8:36 PM (GMT -7)   
I am so discouraged.  I am in the hospital here in Atlanta-  I was admitted yesterday through the ER -Diagnosis:  a blockage.  Well the first test was a ct-scan with dye  soon after, came the dreaded NG tube.  The very first time that I asked for pain meds-  I got this look from the nurse like "you must be kiddin".  Guys-  We need to stick together and get this so that this does not happen anymore-no matter where you live.  I don't even have the words in me to describe how "low" I have felt every since I have been in the hospital needing to ask for pain meds.  The first thing my first nurse told me while she was assessing me for admissions is:  Now you will have to ask for pain med b/c we don't just bring them in here.  First of all-  I wait until the pain is so unbearable before I even go to the ER.  Second-  The nurse knows that I am in pain ,so as long as the Dr. has ordered it then bring it to me at the appropriate time.  I know it  is not "all in my head"  but, I can promise you guys that I am treated differently b/c I ask for Pain meds.  Every nurse I have had so far, questions me with the same questions over and over again before they will bring it-  In my opinion ther is just no need to make a patient with proof feel less of a person b/c tI'm not sure what one little person like me could do to get rid of the way I am treated due to requiring pain meds.  I hate having the disease b/c not only is it humiliating to poop all the time; but now to ask for s/t to help this pain.  It is rediculous and something needs to be done about it; However;I do not know how to even begin.  I appreciate any advise and if any of you would like to go before legislation write letters, etc please post the contact info so we will all know who to contact.  This is really getting stressful for me and something needs to be done about it in support of us with Crohn's!  No one has the cure, nor do they have the cause...Just let me know if you are ready and persistant enough to help me with this-  We have gotten to make a difference!  What if my children grow up and get diagnosed with it?  Our little guys will get to feel what I call "Be-littled" for no other reason than  trying to get comfortable from a disease that you did not choose to have!!!  Please don't take this offensively-  I am trying to help matters for us and our loved ones. 
One more thing, I am on a Dialudid pain pump-the nurse that I have tonight is even going as far as counting aloud the # of times that I have pressed the button.  I feel that she is dong this to point it out  I don't think it really matters- b/c no matter how many times I push it-it will only inject a certian amount.

Post Edited (Bible) : 3/20/2009 9:44:59 PM (GMT-6)

Regular Member

Date Joined Feb 2009
Total Posts : 62
   Posted 3/20/2009 8:47 PM (GMT -7)   
That sucks! I hate pain and hate attitudes even more. Are you on any IVs? Can they put you on a PCA pump? That would give you the control of the meds. If it looks like you are going to be there for a while, I would definitely ask your doctor about it. Feel better soon...sending healing vibes your way.

I agree that we all need to get organized and get in the word to the government. One voice can be heard but 1,000 voices can not be ignored.
Crohn's Disease - 29 years
Diagnosed at age 10 in 1979
1st ileosecal resection 1989
2nd colon resection 1993
Chronic "D" and arthritis
Chronic rectal stricture with colonoscopy every 3 months to dialate
Insomnia since 1980 - I love my ambien!
SCUBA diver, Master's degree student, college graduate, Pet therapist

Veteran Member

Date Joined Mar 2005
Total Posts : 1289
   Posted 3/20/2009 8:59 PM (GMT -7)   
sorry you have to deal with that pervasive attitute!
Trust me- I know how much it can hurt...I went to the ER a couple of weeks ago becasue the pain was so bad I was throwing up!
they gave me bentyl- anti-spasm meds...the nurse actually asked me if i wanted pain meds- i turned them down just bc i wanted to go home asap and not be admitted after they told me they did not see a blockage...
but docs should be there to treat AND COMFORT. if someone is in that much pain- give them the darn meds and don't belittle them!
i hope the rest of your hospital stay is an easy one!!

Regular Member

Date Joined Jul 2007
Total Posts : 188
   Posted 3/20/2009 9:17 PM (GMT -7)   
Yes I have IV's Flagyl, Prednision, Levaquin and fluids- One more IV is for the PCA pump and I forgot to mention this to you guys- When she brought it in herelast night & hooked it up she had to say something " really can't believe your Dr. took this route." I wanted to say why? Because it's not you and you can't believe I could possibly be in this much pain- Well, I hope that you never have to find out. It's not fun being hurt like this

Veteran Member

Date Joined Jun 2006
Total Posts : 1156
   Posted 3/20/2009 11:08 PM (GMT -7)   
This issue is pain relief for people period.
The Western World suffers from a fear of narcotic pain relievers. The US Federal and state governments are disallowing primary care physicians from prescribing them and for a lot of people, pain specialists are worthless.

People in pain are left to suffer. I have fibromyalgia and most of the people who have it are miserable most of the times, without pain meds prescribed.

Addiction rates are 1.5% for people in pain. When we do not need them, we stop taking them.

I do not think nurses have the license to do what your nurse did. She or he cannot make pain med decisions.

I hope you get relief. You are suffering enough.

This war on drugs is horrible. It hurts people.

Veteran Member

Date Joined Dec 2008
Total Posts : 947
   Posted 3/21/2009 3:46 AM (GMT -7)   
I have been admitted 3 times for blockages and I never had a problem with them giving me pain meds. I didn't even have to ask for them.
I understand that there is a huge drug problem in the USA. My niece was an addict and her choice of drug was Oxy. That seems to be be the drug of choice here in Wisconsin,and if you can't get that the next best thing is Heroin. It's not like my high school days when you heard about drugs it was marijuana only. Anyhow I understand them not wanting to give the pain meds but I don't think they really understand the pain that we have. I'm sure if they endured the pain, they would be begging for the meds.
We should not suffer in pain!!!
Diagnosed with Crohns in 2001
First and hopefully last Ileocecectomy 2/18/2009

Medications: Asacol, Folic Acid, Multivitamin, Dbl. Calcium, Probiotics, Protonix, Monthly B-12 injections.

Living a Great life with my Wife and my two Chocolate Labs
Hunter & Hailey.
I love them dearly.

Veteran Member

Date Joined May 2007
Total Posts : 1220
   Posted 3/21/2009 6:38 AM (GMT -7)   
I am sorry you are experiencing this!! Try to talk to the nurse supervisor and ask her/him to let the staff know that you really do need the meds. They shouldn't be harrassing you like this. Isaiah 41:10.
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.

Elite Member

Date Joined Apr 2005
Total Posts : 14995
   Posted 3/21/2009 7:31 AM (GMT -7)   
I agree with Fallcolors, I think you should ask for the nursing supervisor and complain about the treatment you are getting. No one should have to go thru guilt trips to get their pain eased up, that is just ridiculous.
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"*

Veteran Member

Date Joined Aug 2007
Total Posts : 1202
   Posted 3/21/2009 8:53 AM (GMT -7)   
I completely agree about the stigma attached to pain pills. I take them and I consider them a part of my Crohn's meds to help me feel well. When I don't need them, it's nice - it's great to celebrate feeling well.

I have a friend who just seriously injured himself. This is a guy who listens with complete compassion to my stories... BUT when it came time for him to get a pain RX he posted a comment saying, "porter last night. port tonight. no perscriptions. no addictions. natures own muscle relaxation." I was SO shocked and saddened to read that! Besides the obvious that porter and port are equally addictive, habit forming and tolerance building. I started to say something and just bit my tongue. Obviously my friend is scared of pain meds.

On the flip side, when I was admitted to ER for my hemmorhage it was the opposite! So strange, but after I bled so very much my pain subsided to almost none. They asked my pain level (1-10) and I replied "Oddly, it's only about a '1'." They gave me morphine. They wanted to control everyone's pain and make sure people were uncomfortable.

When I couldn't sleep that night I requested a Benadryl. I was told that Benadryl was *not* on my "approved" list of RX but they *could* give me more morphine. LOL. I didn't want it, but I did want to sleep. I'd prefer that over the judgemental look/feel any day.

I am SO sorry you were treated that way. It is *wrong* and I agree that a talk with the supervising nurse might help.
--40 year old female, dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05, 1 fistula, crohn's colitis, limited to large intestine  --rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone
--Prochymal in Phase III study (can't wait til it's approved!)
--started Tysabri 3/21/08 => STOPPED 10/3/08 - now 2 months into it & it was the right decision
--currently taking budesonide suppositories, 3mg at night.  SLIPPING big time.  Started Cimzia first dose 2/10/09.  Dx Osteoporosis 10/08 started Forteo 1/27/09
--single mom to 11-yr-old girl

Veteran Member

Date Joined Jul 2008
Total Posts : 674
   Posted 3/21/2009 8:54 AM (GMT -7)   
I completely agree with you.  I hate the looks I get when I ask for pain meds when Im in the hospital.  Then they ask you on a scale of 1-10 how bad it hurts...if you answer with anything less then a 5 they are like "oh so its not that bad?" but if you answer with a 6 or higher they expect you to be falling on the ground crying. The last time I was in the hospital they were giving me I believe .2 mg of dilaudid, which did absolutely nothing for my pain, so the next time she came in she gave me 1mg, and followed up by "hope that is enough to make you happy."  Oh...ok, because theres no amount of pain meds in the world that can make me happy, what would make me happy is if I didnt have this disease, in which case I would have to be here in the hospital having you judge me because of my pain.  I really dont think nurses and even some doctors completely understand the amount of pain we have.  So bad that for most people who dont have this disease would have been in the ER crying and thinking they are going to die, when we are probably in the exact same amount of pain or more, pushing through our daily lives going to work, and everything else.

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.

Veteran Member

Date Joined May 2007
Total Posts : 589
   Posted 3/21/2009 2:49 PM (GMT -7)   
I've been fortunate in this regard. First, I haven't had to take pain meds (aside from the occasional tylenol)- for whatever reason my pain threshold is apparently very high. Second, on the few occasions I've had to have any sort of procedure (read: scope), the doctors involved have all been very familiar with my case and administered the appropriate sedatives without any questions.

Normally, I find it very difficult to get angry at strangers face-to-face, but faced with the situations told here.... I'm not sure how I'd react, especially if I were in a considerable amount of pain.

Also, I find the 1-10 scale to be hilarious. Such an inaccurate method of gauging pain. But, I suppose there isn't anything better at this point.
21, Male, diagnosed over Christmas Break of my Junior year in High School. BEST CHRISTMAS EVAR LOL

(not really)

Becoming undone
Veteran Member

Date Joined Jul 2007
Total Posts : 927
   Posted 3/21/2009 4:58 PM (GMT -7)   
The honest ones, those that actually need the meds...man, what a pain, in and of itself. I don't tell anyone (besides ALL my medical practitioners, cuz I ain't, nor want to be accused of hiding ANYTHING!)...my husband, my sister, my dad and that's it.

Yet when teaching, I had many, many students (and parents) who could get hundreds of what ever they wanted. It just seemed so unfair...I seriously questioned myself and watch myself when I take them...However, I want to have a life and not be a knotted ball on the bed.

Lately, I got bad treatment from a new pharmacist (wrote to corporate and they assured me it won't happen again). But the ER's it depends on who you get and if and when they find out you're "not faking it". (Pooping blood one sure way to have them asking YOU what you need.)

All I know is that pain medication has given me some small part of my life back (heck not only does it releive pain, but slows the intestines, BONUS.) Until I can get the inflammation under control (joints and GI), it is a godsend to me.

Bible, are you still in the hospital?
"The earth laughs in flowers"

Regular Member

Date Joined Jul 2007
Total Posts : 188
   Posted 3/21/2009 5:07 PM (GMT -7)   
Just got home- Thank, you all for your thoughts, prayers and advice!!!!

Veteran Member

Date Joined Jan 2005
Total Posts : 8616
   Posted 3/21/2009 8:33 PM (GMT -7)   
Bible . . .

There is a person in each hospital called an Ombudsman. Contact the Ombudsman from that hospital and TELL them what happened. They are a patient advocate and are responsible to follow up on problems with patient care, doctors, nurses and housekeeping, etc. The reports they prepare can cause a hospital to keep or lose certain funding and the hospital staff will stand at attention when they are involved in this process. It really does help to cause some long term change in hospitals.

I was in the hospital recently and had a number of issues with my care. One of my sons urged me to contact the Ombudsman. Unfortunately, it was on the last day of my care. HA!. . . the idiot doctor called me at home that evening trying to make up for his lack of competence . . . "Oh, please, Mrs. Blank, come back . . . I will make you happy" . . . What? How weird was that? Anyway . . . the Ombudsman requested a review of every detail of my care and specifically, why a GI wasn't consulted during my stay. It won't help me with the lack of care from that stay, and I'll never go to that hospital again . . . but I'm hoping it will help the other patients who may receive better care because I took a stand.

I'm glad you are home.


In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator

Regular Member

Date Joined Apr 2008
Total Posts : 289
   Posted 3/21/2009 10:26 PM (GMT -7)   
Bible said...
Just got home- Thank, you all for your thoughts, prayers and advice!!!!
I'm glad you are home.  I have an appointment at Emory on Monday and I was going to offer to come visit you if you were hospitalized there. 
I fully sympathize with you.  We feel bad enough about our limitations, there is NO NEED for professionals, whose job it is to care and comfort us while we feel our worst, to be judgemental.  I'm afraid I'd have gotten extremely snarky with anyone giving ME the hairy eyeball over anything I request.  I don't ask for it 'just because I want it' it is because I *need* it.
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.

Regular Member

Date Joined Jul 2007
Total Posts : 188
   Posted 3/22/2009 7:03 AM (GMT -7)   
You guys are the best!!! I am soooooooo happy to have each one of you!!! I have gone from having mild crohns in October to oderate to severe. What the heck? Guys you are right- When we take a stand, we are helping the rest of each other. It will get us somewhere!!! Let's not back down!!
It's good to be3back home- although-It's 40 mg. of Prednisone, 150 mg Imuran, Flagyl, Diflucan, Levequin, Lortab, and go Tuesday to see if the Crohns has gotten in my Gallbladder- It shows on the CT that it is dialated due to crohns as well as the hepatic duct. Whatever this means.
I'm just going to enjoy every minuite I have that I feel alright!! Love you guys!!!!

Regular Member

Date Joined Mar 2009
Total Posts : 318
   Posted 3/22/2009 11:18 AM (GMT -7)   
i understand what your going through getting your pain meds i have been there but i had it and reported the nurse who was sent home and she was writing in my chart that i didnt need it and never asked no i never asked i begged for it tell someone not another nurse there all in on it your a cronhes patient you no the good nurses from the bad ones if you gained trust in one see if will get you the ward clerk if you have them out there thats what i did it helped i have signed myself out of the hospital many times cause i was refused pain meds i thought at first it was my age now i know they just dont care cause they cant see our suffering like other diseases you know i hope that helps and speech to your doctor you can also get your pain meds through a butterfly on intervals such as your regular dose of every 3 hours and you also get a break through in between which is half your dose or ask about a PPP a personal pain pump i think there okay after surgery until they take them away then you see what they were really doing for ya. still suffering in nova scotia

Veteran Member

Date Joined Dec 2005
Total Posts : 637
   Posted 3/22/2009 12:48 PM (GMT -7)   
Someone with medical evidence and proof they are in pain, should not have such troubles getting help.

AlwaysRosie mentioned the Ombudsman, I hope you do call them, they are there for the patients.

In the end, I would bet the nurse had or still has a problem with addiction herself, and now carries a chip on her shoulder.

Take Care
CD dx @ 13 (1987)
Prednisone 8mg every other day
Imuran 100mg day -- Stoppped March 09
Celexa 20mg day
Pain Meds -- Morphine Sulfate
Vitamins + B12 Injections Once Per Week
Gallbladder Resection -- 3/19/09 -- Fingers crossed

Regular Member

Date Joined Jan 2009
Total Posts : 209
   Posted 3/22/2009 6:04 PM (GMT -7)   
My G.I. calls my hospital,when I'm heading to emergency.
The hospital alerts my surgeon and controls my pain...
My hospital also administers my Remicade,and always is
asking about pain..I love my hospital...( Wow thats scary)
diagnosed 1981
remission until 2006
Entocort, 6mp,Hydrochlorothiazide
Remission since surgery
and 8-week Remacade.
d since 1981(enjoy the look
on Dr's faces)

Veteran Member

Date Joined Feb 2009
Total Posts : 1880
   Posted 3/22/2009 7:36 PM (GMT -7)   
People with the diagnosis of crohn's should not have to beg for or feel guilty to ask for pain meds. You had a bad nurse. You should write a letter to the hospital and complain!!!!!!! Sorry that happened to you.

diagnosed 1/09 with colitis,54 yo, colazal, fish oil, synthroid, cymbalta

Regular Member

Date Joined Mar 2009
Total Posts : 21
   Posted 3/26/2009 5:33 PM (GMT -7)   
I really feel for "Bible," because I saw my daughter go through so much pain when she was in the hospital for Crohn's flare-ups. She told me that the nurses asked her how she would rate the pain from 1 to 10...10 being the worst. She said that she would tell the nurses a 9 but that most people who are not used to feeling a lot of pain would think that the pain she experienced with Crohn's was unbearable. Luckily, the nurses and my daughter's doctors were very empathetic regarding the pain she felt and they gave her Percoset when her pain was really bad. There are other medications too but you need to get your doctor to speak to those nurses and tell them that they do not know how you feel...

I feel for you so much. Keep strong and you will be out of that hospital and back to your regular life. God bless, Bible...

Veteran Member

Date Joined Nov 2005
Total Posts : 1340
   Posted 3/26/2009 6:12 PM (GMT -7)   
Yeah, I hate the 1-10 scale. I refuse to ever say 10 b/c I don't want to think that I am feeling the absolute worst pain. When I've been sick with CD for a while I seem to rate things lower b/c it starts seeming normal (anything other than a blockage has to be good right?). Now that I am in remission I seem to rate minor things higher. It all depends on what I am used to at the time. It's so silly.
Hoping to stay in remission after the birth of a healthy baby girl. On Pentasa during my pregnancy, went med-free 2 months to nurse (stupid), but back on Pentasa and still nursing.

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