Pain killers???

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ImAud
Regular Member


Date Joined Jul 2008
Total Posts : 113
   Posted 9/28/2008 3:54 PM (GMT -7)   
Just wondering if anyone has been or is on any pain killers for the pain you have with CD.  I just got back from the hosptial and was pumped with dilaudid when i needed it..omg was it good! but when they switched me to oral pain killers nothing helped..oxocodone, perciset (spelled wrong!), and all those others ones! so now im home and on the duragesic patch (fatanyl) which is a narcotic that releases a constant stream of meds for 3 days...its used for pple who have moderate to severe pain and can handle opiates..its usually used on cancer patients..and of course i know im going to have to wean off of it, im sure in a few weeks it wont even work for me anymore..i used to be afraid to take drugs like that, but now the stronger the better!!! im just hoping that when i go off of it, i dont have the pain anymore..thats all im worried about...
 
Audrey
 


MAG102886
Veteran Member


Date Joined Jul 2008
Total Posts : 674
   Posted 9/28/2008 4:15 PM (GMT -7)   
I was given Dilauid through IV in the hospital (amazing) haha I think it was more so the feeling of it then anything else, but once they switched me over to oral it all went down hill.  They dont seem to work for me hardly at all, and the only ones that do are the heavy duty kind that my GI refuses to prescribe...but he has given me Vicodine before but  stopped giving me pain meds because I "over use" them and end up using them all up before my prescription is up....duh because they dont work...Hopefully after I heal up from this surgery I wont have any need for them anymore and I wont have to worry about it.
Dianogsed with Crohns at 16, 21 yrs old now.
Surgeries:2 Bowel Resections, Gallbladder Removed.
Current Meds: Humira (bi-weekly), 50mg Pred, Levbid, Nexium, B12 injections.
 

ImAud
Regular Member


Date Joined Jul 2008
Total Posts : 113
   Posted 9/28/2008 4:37 PM (GMT -7)   
i totally know what you are talking about...and i was told about how pple with this disease often end up abusing pain killers...yeah i can see why...dilaudid was the best...it just made everything go away...but of course i know that i cant take that all the time (and thru IV, the best way to take it!!!!) and that it doesnt work after awhile, which is what happened to me while in the hospital..i made myself cut it cold turkery the last night i was there...i hate these pain killers...u just get so used to them they dont work and then u want a higher dose and then u want more and more..and then well ur addicted and a freeking druggie..i dont want to be like that...but its hard not to when its the only thing u think about..but i think im strong enough to find other things that will give me that high in life, things that i used to do and loved so much doing...i just dont want to be in pain anymore...ughhh
 


styxgurl
Regular Member


Date Joined Jan 2008
Total Posts : 67
   Posted 9/28/2008 4:52 PM (GMT -7)   

 I take them.....I see a pain management doctor, she gives me 180 percets to last me 2 months. Hey I take them when I need em. I know I will get hooked, but I refuse to be in pain if I don't have to be.

 Sherri


 


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 9/28/2008 5:54 PM (GMT -7)   
Ultracet helps me a lot. Percocet lost its effect until I went in to the hospital again last time and had a few things done. Then it made me feel pretty darn good.
20 years old, Diagnosed with severe Crohn's and colitis in May of 2008.
Currently taking:
Prednisone, pentasa, alinia, bentyl, prilosec, tandem plus, and the occasional ultracet
Surgery for ectopic pregnancy(very possibly due to Crohn's inflammation) in July of 2008.
Due to start Imuran September 17 depending on blood results.


Jessi21
Regular Member


Date Joined Sep 2008
Total Posts : 57
   Posted 10/3/2008 3:08 PM (GMT -7)   
My docs have been prescribing me Tylenol Coedine for a while now and that seems to do the trick most of the time, but lately shes been saying how she hates me taking too much of it and doesn't want to give me more if she doesn't absolutely have to. I keep trying to explain to her that some days there is just no way I can function without it - I've tried..many times. They tell me to try regular stuff like regular tylenol which I've explained over and over again is a waste of med in my body..over the counters do absoloutely NOTHING for me and I'm so glad to hear I'm not alone or being too addictive here, cause when your in pain (as I'm sure all of you understand) your just not the same person, and its not fair. I realize I sound like a druggie, but honestly, I really do hate the painkillers (its a love/hate relationship :) and try my best to not take them.
What I don't understand is why my docs never try to find me other painkillers instead of just the "known" strong stuff like the ones mentioned above that some of you take..?
Oh and I used to take 600-800mg Ibuprofin like it was candy. That stuff helped with my pain, but little did I know that it was the cause of my flares! Stay away from all types of advil/Ibuprofins (includes Alieve and motrin)!!
Dx w/ UC 2000;
J-pouch surgeries in 2002 - colon removed except for last tiny part connected to rectum which keeps inflaming;
Currently in remission from August hospitalization and tappering off Pred. (now 7.5mg);
Remicade, Cymbalta, Prevacid, Famotadine, QVAR,
Auto-immune disorder, anxiety disorder, mild asthma (chronic bronch), & Crohns related arthritis.

Jessi


John510
Regular Member


Date Joined Jun 2004
Total Posts : 226
   Posted 10/3/2008 8:49 PM (GMT -7)   
Not prescribed right now since I go to a kid GI still, BUT I do take percs and OC occanisly and I love the pain free state it gives me for the 4 hours. When I get a new adult doc im going to milk them for percs and xanax

CrazyHarry
Veteran Member


Date Joined Mar 2006
Total Posts : 1034
   Posted 10/5/2008 10:12 PM (GMT -7)   
my fav for outside of the hospital is vicodin and jaegermiester. hmmm.....jaegermiester.... *drool* turn
Crazy Harry

---------------------------------------------
Crohn's since 1993 (17 yrs old then)
surgery in July '05 - removal of 2 inches at ileum and 8 inches of sigmoid colon (had fistula into bladder)
Nov '05 developed colonic inertia; July '06 told i needed ostomy surgery
began maker's diet in August '06 - now feeling the best ever with no symptoms of colonic inertia and i kept my colon
med free as of 10/31/07


joshxlong
New Member


Date Joined Oct 2008
Total Posts : 7
   Posted 10/11/2008 7:46 PM (GMT -7)   
i was diagnosed last week with crohns. i've been having stomach pains and problems for years, and was hospitalized 2x (ER 3 total, once sent home) this year for it. In the hospital i was on IV dilaudid, and they wanted to switch me to vicodin. My crohns is different than the typical patient as acetomenophen hurts my stomach as opposed to nsaids, so i wanted a painkiller without acetomenophen. I've been put on ultram and oxyIR (oxycontin, 5mg, but instant release in capsule form) until i get to the specialist and i'll know by then what i'm going to need to take beside pentasa and the steroids. I'm in a lot of pain, and i always have been, i just hope i can stay on one of the pain meds cuz i'm young and my teeth arent so good so people always assume i'm an addict of some type. Ive felt for years life wasnt fair to me because of my mysterious gut ailments but if i can get on top of it and be prescribed painkillers for the pain, ill be much happier and not because i enjoy the side effects of PKs. OxyIR really helps me feel no pain, and the ultram gives it a boost.

Texan with Crohn's
Regular Member


Date Joined Dec 2007
Total Posts : 362
   Posted 10/13/2008 4:03 AM (GMT -7)   
What's Percocet? The two GI doctors I saw refused to prescribe anything for pain... I have no idea why either. My primary car physician handles all my meds now. He's wonderful. He will prrescibe 7.5 hydrocodine, which does nothing for the patin... but it beat OTC tylenol.

Just wondering What Percocet is and if it gives more pain relief than what I get.

Celey
Veteran Member


Date Joined May 2007
Total Posts : 1284
   Posted 10/13/2008 6:11 AM (GMT -7)   
//@.@\\'... Well, I can see how abusing pain-killers could happen... if you start taking pain medicine when you're not in pain (It always feels good not to be in pain, but I think I must be a weakling because I get side-effects from the stuff that works, usually nausea... So, I don't understand how someone could take them when they don't need them)...

I understand about not wanting to be in pain, anymore... The pain does go away but sometimes it comes back (maybe after a week, a month, a year, or years).... Or sometimes, you'll have intermittent pain while trying to get into remission.... "Good days" and "bad days"...

Anyway, you should be glad you're getting pain medicine... My doctor was afraid of even giving me Darvocet when I was first diagnosed because he was afraid I'd get hooked (but I could get diuladad when I was in the hospital) (and I don't have an addictive personality, no smoking, no alcohol, no other drugs)... Seems a lot of doctors are like that from what I can tell on this forum... *It sucks that pain medicine is addictive... I wish it wasn't so doctors would prescribe it to you when you need it*

Anyway... Have you tried checking your diet? Perhaps you're eating things that are excaberating your symptoms and inhibiting your pain medicine from working...

As a general rule, avoid spicy foods and seeds and nuts...
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.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 10/13/2008 6:48 AM (GMT -7)   
With all due respect John510 & CrazyHarry I am a little upset by your comments. There are folks that are in really bad pain and have a hard time getting medications because of other people "milking" their docs for pain meds. If you don't need them, don't use them. When people abuse them, they make it harder for those who truly need them. JMHO
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.


joshxlong
New Member


Date Joined Oct 2008
Total Posts : 7
   Posted 10/13/2008 7:04 AM (GMT -7)   
percocet is oxycodone 5mg/acetomenaphen 350mg. most crohns patients have trouble with NSAIDS from what i read, but i have trouble with acetomenaphen so they prescribed me percocet minus the cet (acetomanaphen), and in instant release form which is commonly known as oxyIR (actual prescription from doc said oxycontin IR). BE WARNED. i've not even been on oxycodone a week and i'm starting to see how the pull of it could potentially make addiction easy if you haven't got the self discipline. it makes almost all my stomach pains subside within 20 minutes of ingesting, and the reason i'm weary of addiction is that i'm watching the clock toward the last hour or so waiting for that 6th hour to roll up so that i can allow the pain to subside again. its not recreational effects i seek that have me afraid of addiction, its the percentage of relief achieved through my oxyIR that i can see being hard to break. I'm going to my GI doctor and family doctor today because i had to call off work for the 8th day out of the past 11 work days and i'm going to try to be taken off my instant feel better pill just because i do expect to have to deal with some degree of pain daily with my crohns and i don't want to spoil myself into addiction because i was informed on a post i had made that not only do GI docs tend to keep pain meds out of the equation but also people with crohns are easily caught up in the addictive mix of pain medications. whether its because they have addictive personalities or whether its because they just want to feel normal i cannot tell you as i've known since thursday i have crohns. i've been told i can probably expect to not be on medications once the healing process has taken effect between flare ups and i await those days with high hopes and a heavy heart. i feel badly for you all who share my disease and i pray you all the best. and thank you especially to those of you who take the time to post in these forums, the internet is a great resource and i've learned more here than i have through the doctors to date. thank you all for your time, and continue to educate the poor uninformed individuals like me who are fresh to the crohns scene.

dustspeck
Veteran Member


Date Joined Sep 2007
Total Posts : 565
   Posted 10/13/2008 10:04 AM (GMT -7)   
after reading all these comments (and actually it's a subject i have thought about) i question so much regarding pain meds. let's face it, pain SUCKS. and you figure, why be in pain if i have pills that take it away? i am not nearly in much pain as i have been in the past. i am steadily working my way to remission. i think! but i still almost take pain meds on a daily basis. i seem to go through consecutive days of pain, then i am good for a few days. i can start with just taking 1/2 a percocet, then wait and see if i need another 1/2. i do this at work. at home i will easily pop a whole one because i don't have to worry about driving or working and the like. i can take 2 - 2 1/2 in a day. so, am i addicted? someone said it could be my body addicted to the pain meds, it tricks my body into telling me i need percocet? i don't feel i am ready to be off of them completely yet. i see my gi on wednesday (after my pill cam patency test GRRRR FASTING), i might talk to hm about my concerns. but i also fear if i bring it up he will think i am crying out that I AM addicted and he won't give me pain meds. UGH!
.: stephanie :.
33 y/o female diagnosed 8/8/7 with crohn's of the terminal ileum w/ stricture/scarring
meddies: 6mp, percocet, trazodone, ativan, iron, calcium, folic acid & some other vits


Ladybugs
Regular Member


Date Joined Jan 2006
Total Posts : 158
   Posted 10/13/2008 11:16 AM (GMT -7)   
I never take pain killers. They may be a good choice for some people, but I don't like them. I don't like they way they make me feel. I have a very low tolerance to them and they make me feel foggy, groggy and slow. I have fistulizing Crohn's and am in pain every day, but I prefer the pain to being zonked by meds. I don't have a tolerance for alcohol, either. Haven't had any in over ten years. When I'm in a lot of pain I just try to go home and rest and sleep. Usually a day or two of liquid diet will help too.

Not saying that pain meds aren't for everyone. I know lots of people can handle and they are lifesavers, that's just not the case for me.

Best of luck to you

conorconan1
Regular Member


Date Joined Oct 2008
Total Posts : 245
   Posted 10/13/2008 12:04 PM (GMT -7)   
My GP has given me Tramadol 50mg for the pain. They work for a while and then bang, back to square one.

jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10392
   Posted 10/13/2008 12:23 PM (GMT -7)   
The real problem with any kind of opiate for relief of chronic pain is that after you take it for a while, the effectiveness diminishes and the dose has to be increased. Then you habituate to the new dose and it has to be raised again. Eventually you can get to the point where the medication can't be increased without killing you, and then you are pretty much out of luck for any really severe pain episodes - like after surgery, etc.

That's another reason (in addition to the danger of dependency/addiction) that docs really don't like to prescribe opiates (Percodan, Percocet, Oxys, Lortab, Tylenol with codeine, etc.) for chronic pain.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


Texan with Crohn's
Regular Member


Date Joined Dec 2007
Total Posts : 362
   Posted 10/13/2008 12:37 PM (GMT -7)   
I am just tired of taking pills - period.

I take pain pills and nausea pills the most. Then when those don't handle it, I call my PCP and get a prescription for Prednisone. That usually does it. If it does not, then off to the ER I go. I realize that eventually I will have to do what the GI docs are telling me - surgery. Just trying to hold on to my small intestine as long as possible.

I too wish people wouldn't abuse any medications. This makes getting necessary medications harder. Plus it makes doctors look down their noses at you -- me, like I'm a drug seeker if I so much as ask for phenegren or any pain medication.

Enough ranting for now. Have a good day, all. Not feeling so well. Some ding dong came into work with the stomach/intestinal bug and guess what? Yep, I got it, of course.

Going back to bed to lay down and rest.

soccergirl
Veteran Member


Date Joined Mar 2003
Total Posts : 607
   Posted 10/13/2008 3:29 PM (GMT -7)   
I have a love/hate relationship with pain meds. I am going thru withdrawals right now from Fentanyl Patches and Oxycodone. It's the hardest thing I have ever done! And that's saying allot since I've had Crohn's for 24 years now. I needed the pain meds. I was justified in taking them, but my body became dependant on them. For months now, I have been weaning down slowly at first from 100mcg to 75mcg then to 50mcg then to 25mcg and now I'm only taking oxy if I need it. I'm not doing this alone...my doctor is in control of all of it. I have to admit though that I always have pain pills available if case I need them. I never run out. I don't take them for pleasure. I don't share with anyone. I keep them for that day in the future when I will need them. Because I know with this disease, I will need relief at some point.
I feel for all of you that do not get relief from your doctors. I understand why they want to treat the cause of the pain, but until they find the true cause we need help dealing with how bad it hurts. I wish more doctors would understand that.
Good luck to all who are hurting.
Hugs,
Clara
 
Dx in 1984 with Crohn's Disease.  In 1988 my terminal Ileum was removed due to inflamation that caused it to rupture.  I had surgery in February 2007 to remove more of my intestines due to scar tissue.  I then developed a very bad abdominal infection and was on IV antibiotics until June 2007.  I am left with chronic pain in my URQ which the doctors can't Dx or fix.  I'm on a Fentanyl patch 24/7.  UPDATE***I have slowly been tappering off of the Fentanyl patch.  I am going thru my last withdrawal as I type this.  It's the most difficult withdrawal of them all!!!


joshxlong
New Member


Date Joined Oct 2008
Total Posts : 7
   Posted 10/13/2008 8:32 PM (GMT -7)   
fentanyl patches are nothing to joke with. my girlfriend's mother is on them and she can't go 2 days without her 100mcgs or she goes into intense withdraw. i'm under the understanding fentanyl is about the strongest opiate available by prescription, only thing it might be less potent than (and i wouldn't know) is heroin. i do know people were dying of heroin overdoses nationwide not so long ago because heroin was coming up from mexico cut with fentanyl. so be careful soccergirl, i've seen what fentanyl withdraw does to a person, and i pray you luck and success with your breaking of fentanyl's hold over your body and the unfortunate pain we've been seemingly unfairly chosen to suffer. hang in there, but if you withdraw too hard make sure you either have someone to care for you on hand or don't hesitate from seeking professional help if you need it. you don't sound like an addict, you sound like someone who has had a lot of pain and needed to take what the doctors ordered. its just a pity its so hard to get away from. my girlfriend's mother still hasn't gotten off the 100mcg doses that were supposed to be short term. she lies and says nothing else works or she's allergic to all the usual routes of pain relief.

Julie1014
Veteran Member


Date Joined Oct 2005
Total Posts : 1245
   Posted 10/14/2008 2:40 AM (GMT -7)   
I can't tolerate pain medicines. They make me too "loopy," and give me anxiety. I just take Tylenol. I wish there was something that helped a little better than Tylenol, without side effects......
Diagnosed with Crohn's March 2006
Asacol 3 times a day, Remicade 8mg/kg every 6 weeks, Prednisone 10mg/day, (tapering Pred 1mg/month,) Miralax daily, Prevacid 30mg, Vit B12, Hydrocortisone enemas as needed
Imuran stopped 9/8/08 (possible Pancreatitis)
Paxil 40mg daily (for Panic disorder)
Xanax .5mg as needed (for anxiety attacks)
 
 
 
 
 


joshxlong
New Member


Date Joined Oct 2008
Total Posts : 7
   Posted 10/14/2008 7:10 AM (GMT -7)   
have you tried ultram? i believe the doc said its non-narcotic and synthetic. doesn't tire me or make me itch or make me moody. its more commonly known as tramadol, also can be found as ultracet or ultram XR (or tramadol XR). if you are able to tolerate your pain i'm guessing you shouldn't push for medications you don't need but if you need more than tylenol that may be worth a shot. i believe its even less potent than codeine from what i read (i'm allergic to codeine) but i did notice when i'm in minor pain it kicks it without the oxyIRs they put me on. took me a while to figure out but i finally did. if the ultram really is non-narcotic i might see about keeping some on hand to deal with my pain.

Joie1
Regular Member


Date Joined Oct 2008
Total Posts : 376
   Posted 10/16/2008 11:12 PM (GMT -7)   
I got fentanyl by IV patient prescribed pain button. One dose every six minutes. I was on it for 9 weeks straight. It was addicting. I went through a bit of withdrawal but I got better. I wish you could just look the doc in the eye, say, "I am actually hurting. Don't punish me because there people who abuse pain medications." Compared to withdrawal, being in constant pain isn't worth it. I've figured out most of my triggers (not excusing the ones that flare up because I eat it two days in a row). But, I've come to the conclusion that there's no way to win against pain if all the normal options don't work or irritate the situation. I will not allow myself to ever become addicted to pain meds. My aunt died of an accident overdose...she was a drug addict and it was working. I spent too much time disgusted by her to ever become like her. But doctors don't take the time to realize that.
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)


sweettea
Regular Member


Date Joined Sep 2007
Total Posts : 32
   Posted 10/16/2008 11:32 PM (GMT -7)   
A couple of weeks ago when I had my bad flare, I took ultram, then two ultrams, and had no relief. Then I took some Lortab, then two Lortab, and barely got enough pain relief to sleep at all. My GI gave me 20 demerol. Yes, they put me to sleep, yes, I feel loopy afterward, but I was nonfunctional with the pain I was in anyway. The sleep and relaxation did more to help me heal than anything. And I have only taken 6 of the pills, three of them the first day. I know that if I let my pain continue to build up, it's just that much harder to get any relief from it. So I like having pain meds around. I don't abuse them, but it gives me peace of mind that I don't have to suffer past a certain point.
_____
IBD- Pentasa, Canasa, Entocort EC, Librax
Migraine- Fioricet, Topamax
Fibromyalgia- Zoloft,  Tramadol (prn)
Immune Disfunction Disorder? - Antibiotics out the wazoo, steriod shots
 


Jessi21
Regular Member


Date Joined Sep 2008
Total Posts : 57
   Posted 10/17/2008 10:00 PM (GMT -7)   
For me its all one big cycle anyway. Stress causes pain and discomfort which in turn are the causes of my flares and the medication for that as you all know is way worse than any painkiller. True, they trigger the source of the problem instead of temp relief, but just maybe sometimes I believe that giving your body what you feel it needs at the time..wether that be any type of painkiller which lowers your stress levels, or anything else might actually prevent things from getting worse! It all depends though..you really got to try to be balanced I guess.

I just had a talk w/ my doc letting her know that OTC Tylenol was having absolutely no effect on my body aches and lower back pain, and since of course i can't take nsaid's I go through the entire day in pain sometimes without taking anything, or until the pain gets so bad I have to take my Tylenol w/ coedine. Either way I can only go through so many hours with pain before not caring about anything but some sort of relief. I'm running out of the coedine though, and she had mentioned something starting with an N I believe thats typically known for arthritis pain...? I forgot and I don't even know why she would give me that. Anybody have any idea what it might be??
Dx w/ UC 2000;
J-pouch surgeries in 2002 - colon removed except for last tiny part connected to rectum which keeps inflaming;
Currently in remission from August hospitalization and tappering off Pred. (now 7.5mg);
Remicade, Cymbalta, Prevacid, Famotadine, QVAR,
Auto-immune disorder, anxiety disorder, mild asthma (chronic bronch), & Crohns related arthritis.

Jessi

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