Pain Management - Question & Vent

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Kaycie
Regular Member


Date Joined Jan 2006
Total Posts : 449
   Posted 11/19/2008 4:49 PM (GMT -7)   
I know this has been discussed before, but I'm just curious about a few things...

My GI won't give me pain pills stating he really thinks they are addicting, well his NP says so, but I respect both of them greatly and their opinions. My surgeon has been issuing my pain medicines and he knows I'm in a clinical trial, so he actually gave me a refill this last time. I'm just on Norco which is 7.5 hydrocodone to 325 acetametaphine. I can take 2 every 4 hours, but I typically take 1 Norco and then 1 500mg of tylenol (doc knows this) as needed, usually no more then 4 times total in a day (and, I'm careful not to exceed 4000mg of acetametaphine in the same day).

But, I'm really not doing well. Either I am not receiving the drug (ABT-874) or it hasn't kicked in yet. I have good days and bad, but must I'm just exhausted and aching in my gut and still going to the bathroom 6-8 times a day. I'm just frustrated, needless to say.

My question is this...

If you take pain meds, how much do you take and what? I have a high pain threshold, but I'm working 40+ hours per week (really no other choice - long story, but I work for my parents and times are extremely tough right now in the business), and 1-3 pain pills gets me through the day.. I do rest on Saturdays and Sundays and have cut back on some other things I do and have let a lot of things go to take care of myself, but I feel so horrible when I have to call the surgeon and ask for a refill. I know I should NOT feel bad about asking for pain meds as I truly don't abuse them, but I know people who HAVE abused them and I'm terrified that they'll eventually say "Sorry, no more." I just feel like a drug addict everytime I phone in and say.. "I need to know if the doc will approve more meds?" If I were getting some drug and some relief, obviously, I wouldn't need the pain meds.. so I'm hopeful once I hit 12 weeks (in another 8 weeks) I'll start to get the drug and maybe get some relief, but in the same token... I have a good 8-12 weeks of trying to get through and manage my pain and my disease..... it's a risk I chose to take, but I really did not have too many other options... I welcome any advice or support on how to deal with this....

Sorry to ramble!
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


cinpro
Regular Member


Date Joined Sep 2008
Total Posts : 36
   Posted 11/19/2008 5:35 PM (GMT -7)   
I would talk to your surgeon and tell him exactly what you said here. let him know you need it to get through your day but are afaird someone will think your abusing them.

I feel for you, they gave me pain meds when I got out of the hosp. I'm not taking them not because of fear of addiction, but that I haven't really felt I needed them. hope everything works out well for you.
I shed tears when I found this place...I have felt so alone for so long...Its good to know there are caring ppl out there who can understand where I'm coming from.


Kaycie
Regular Member


Date Joined Jan 2006
Total Posts : 449
   Posted 11/19/2008 5:54 PM (GMT -7)   
Thanks cinpro.

I have expressed (and slightly melted down about it) this same concern to the surgeon's nurse who kindly got me a refill this last time. I've been off and on pain meds since July, but I'm nowhere near remission and I got off of them for 2 weeks and then crashed hard with a huge re-flare... well, maybe a flare within a flare (thought I was better, but obviously wasn't).

I have a 16 month old little girl and work and everything to deal with, and the little bit of pain meds help me through the day. I'm not addicted, I know I'm not and since I work for my parents, my mom is very good about keeping an eye on me... I don't drive with the pain meds, I'm careful about WHEN I take them, but it just takes the edge off.

I hate taking them, but I'm also realistic that I might need them for a bit... I just hate asking for them.. I hate having to take them..
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


Texan with Crohn's
Regular Member


Date Joined Dec 2007
Total Posts : 362
   Posted 11/19/2008 6:01 PM (GMT -7)   
Hi, Kaycie.

This seems to be a hot topic.

First, do a search using the search box at the top and read through the many posts on this subject. The most recent... well, perhaps you should skip due to length and stress avoidance. (no offense to all who posted on that topic).

Second, when there's a need for pain relief and not a need to abuse, then seeking a pain management doctor or visiting with your primary care physician is your best option. GI doctors (a majority) will not prescribe medication that can cause addition.

Many of us folks with CD require medication to treat symptoms of pain, nausea, arthritis, and all other CD-related symptoms. We understand... I know I do. I also understand how frustrating it can be to be denied what I consider necessary medications of any kind to offer relief when trying to get through working a full-time job and keeping up with all the other daily requirements of life. I do not consider medication for one symptom more significant than the other
truly wish that doctors would see this in the same light that I do; however, they do not. We pay the price for those who abuse specific medications.


Last, good luck with the trial. Hopefully you will get relief. :)

cinpro
Regular Member


Date Joined Sep 2008
Total Posts : 36
   Posted 11/19/2008 6:52 PM (GMT -7)   
i just thought of something else, you might ask about something to help with the stress, you may not need the pain meds as much, just a thought.
I shed tears when I found this place...I have felt so alone for so long...Its good to know there are caring ppl out there who can understand where I'm coming from.


Kaycie
Regular Member


Date Joined Jan 2006
Total Posts : 449
   Posted 11/19/2008 8:31 PM (GMT -7)   
Thanks for the replies... I'm already on Celexa for the anxiety. Steroids are what do me in the most and they seemed to have caused a lot of anxiety with me this go around then last. They are a necessary evil, as I like to refer to them as....

The stress is more the daily habits of life and the stress of the economy and all that good stuff... Plus, holidays are extremely difficult on me as I lost my daughter last year. This would be her 2nd Christmas... her twin sister is 16 months old, but Christmas can just be hard... hence more stress on top of a not so good situation...
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


Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 11/20/2008 6:03 AM (GMT -7)   
Kaycie
I am so sorry for what you are facing
Celexa has been tooted as having a pain med in it as well as an AD.......

I think something fast acting and for a short time may help you
Just my own opionion and not professionial advice

My GI will not give pain meds but my family doc will not let me be in pain so I am very fortunate
I am on MS Contin..Oxycocet for B/T pain which I barely touch and I am also on Diazepam and Ativan for breakouts of Pyoderma Gangrenosum
I DO NOT abuse the meds at all and I wouldnt as I respect my doctor and myself too much for that
But it prolly is due to so many that will abuse the system that chronically ill and chronic Pain PPL have such a rough go of getting meds to help them

I wish you all the best and please do keep us posted on clinical trial...........LYN

** I also know the pain of losing a child my son was 6 yrs old when he passed away

You have my thoughts and prayers.........LYN


 DX: Crohns,Pyoderma Gangrenosum,Anxiety/Panic,
Fibro & Other DD

Donate at  www.healingwell.com
 
                               Moderator@Alzheimer's..
    CO Moderator @ Anxiety and Panic........Co Moderator   @ Crohns                    
                            ~ FIGHT the FIGHT with all YOU HAVE ~
               Look For The GOOD, Even At Your Lowest
  We Have Anxiety and Panic...................Anxiety and Panic DO NOT Have us         
   
..........LYN

Post Edited (Howlyncat) : 11/20/2008 6:07:36 AM (GMT-7)


Roni
Veteran Member


Date Joined May 2003
Total Posts : 2480
   Posted 11/20/2008 6:24 AM (GMT -7)   
I usually take tylenol xtra strength 1-2 caps. I've never been on anything heavier than that cause my GI said I should try not to. I hate having pain all the time, but I can tolerate it okay still.

Sometimes I wonder how it will be when I get older, you know? Am I going to be able to handle this the same as while I'm young?

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 11/20/2008 7:41 AM (GMT -7)   
I get all my pain medications from my family doctor. I have never in all my years with this disease gotten them from my GI. Most just think they slow the bowels down or are just covering pain that they think they should know about. Or they think, if you are in pain, you need some other treatment.

But we all know that with this DD it can take time to find the right medication to get your Crohns under control, so that means we would be suffering until the right med was found.

Luckily, my family doc understands my pain, and also understands that I don't abuse them, so he readily refills them when needed.

I take 1/2 Percoset 2-3 times a day as needed. I use to use Vicodin, but for some reason that started upsetting my stomach, so we switched to the Percoset.
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.  Resections in 2002 and 2005.  Also diagnosed with Fibromyalgia and Osteoarthritis. Currently my Crohns is in remission.


ImAud
Regular Member


Date Joined Jul 2008
Total Posts : 113
   Posted 11/20/2008 10:00 AM (GMT -7)   
Kaycie, i totally know how u feel...when i got diagnosed i was in so much pain in the beginning and tylenol didnt work..when i got hospitalized a couple weeks following my diagnosis, i learned about pain killers lol...it never dawned on me that the pain i was feeling could be stopped with these types of drugs. i always saw them as something for someone who broke an arm or had a back injury...it really opened my eyes that some people (even the doctors treating us) dont understand that there is alot of pain involved with crohn's, and just because u cant see our intestines doesnt mean they dont hurt! i totally now believe that no one should ever suffer in pain and we as patients have a right to decrease that pain as much as possible..i myslef too have been terrified that my doctor won't give me pain killers once i run out...(here's a horror story, my general practioner doctor told me in the hospital that the pain was all in my head and that i had anxiety disorder and should take xanax xr and i told him i wouldnt take it cuz it knocks me out all day and makes me cry and act weird, but he still told me to take it, which i never did but i agrreed with him. he then went on to tell me that there is no cure for my disease and that no one is ever at a pain level of zero. of course i started to cry cuz he was being a jerk and i said i know there is no cure and i understand that no one is ever at a pain level of 0. this is also the man who the moment i asked for a higher dose of my pain killer in the hospital he got mad and not only didn't up it, but he changed it from every 4 hours i could take it to every 6! thank god the nurses made him change it back but only after i extreme pain for those 2 hours. i hate that man but i'm only sticking with him cuz his NPs are so nice. if i ever end up in the hospital again i'm giving him a piece of my mind for sure!!!)..anyways i dont get pain killers from my GI (i never even talked to him about that kind of stuff, i'm afraid he wont understand or just breeze by the whole topic)...my nurse practioner has given me a refill on my vicodin once so far (i'm not in much pain anymore thank god and have only used 1 or 2 a week!)..and my mom has vowed to me that she will get me refills no matter what and has told me not to worry, so i'm glad i have her doing my dirty work lol...have u ever thought about getting a pain management doctor?
21 year old female
Diagnosed with Crohn's August 2008 (hospitalized for over a month right after)
Taking...canasa, rowasa, 6mp, and Remicade every 6 weeks
As needed...zofran, lortab, tylenol 3, bentyl
Off of Prednisone!!!


Becoming undone
Veteran Member


Date Joined Jul 2007
Total Posts : 927
   Posted 11/20/2008 12:01 PM (GMT -7)   
I ended up having to see a Pain Management Doctor (PM), they have a whole arsenal of treatments, not just opiates. If you are interested, this site has a good forum for chronic pain. There are a few chronies there too.

Controlling the pain in my joints and stomach have given me some life back. It changes my behaviour MUCH less than the higher doses of prednisone...I too am afraid of addiction, but I want my life...and when my DD is under control, I do take less (It's just right now I'm in a super flare). I hope one day to be off all meds...that is my goal...one day

Joie1
Regular Member


Date Joined Oct 2008
Total Posts : 376
   Posted 11/22/2008 10:45 AM (GMT -7)   
Well, here's what I can say about it. I'm a D girl, not a C one. I know for a FACT that I go less when I am on Vicodin. When I got a script for it, I could DO things. I was able to control my BMs. I was able to feel when certain foods caused more or less of a problem. Sounds absolutely nuts but the constant pain can make my brain cloudy. For instance, I wake up and before I move, I try to determine what's hurting. Not IF its going to hurt, but what the level of pain is. I wake with this, then I go through the day, visit my personal porcelain throne anywhere up to 20 or 30x a day. No, I'm not kidding about the amounts. So, I think pain meds for a FACT can aid certain people. All I've ever noticed when I am or am not on pain meds is how often I have to limp, how much motion is left in my arm, and whether I'm going to cry or not. Sounds awful but it seems to be the level of care and talking I've experienced through my GI. Then again, I have bills for the guy from the hospital and I KNOW I never met the guy when I wasn't doped out of my gills.
27/f/CD. 4 CD related surgeries: 2 resections, 2 JP drains, 3 NG tubes, many absesses (including the one my most recent surgery scraped off my ovary) and fistulas.
Currently trying to figure out hip and knee joint pain.
Have lost in these surgeries: appendix, 8 in. intestine, R fallopian tube, gallbladder, 10 in. intestine
Dx'd: February 2007.
Pentasa (and much mental screaming)


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 11/22/2008 11:53 AM (GMT -7)   
I never take more than the bottle directs. In this case for a while it's been one ultracet every six hours. It's pretty strong so it usually knocks me out for half that time and then I wake up feeling pretty wonderful. It also reduces the number of BM's drastically. The only thing I've been told to watch out for is not to take them for prolonged periods of time because they can either shut down your stomach or put holes in it.
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone(down to 10 mg), pentasa, bentyl as needed, prilosec, tandem plus, humira, and good probiotics
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
http://weblog.xanga.com/harlequin_garret

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