pain med suggestions

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dragonfly137927
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Date Joined Sep 2006
Total Posts : 2527
   Posted 10/12/2007 3:22 PM (GMT -7)   
I was wondering what to ask my doc for for this fistula pain.  The 4mg of Dilaudid is not helping neither is the 20mg of oxycontin.  I am immune to vicodin, percoset etc from being on them so much when I was younger.  I dont want to have to start back up on fentanyl patches again since getting off of them really is awful.  What meds do you use/suggest?
 
Stef
Dx with Crohn's 1987, symptoms as early as 1984.
Temp iliostomy February 2007, reversed June 2007, Ovarian cysts, migraines, allergies (incl food allergies) , oral allergy syndrome (diff than true food allergies), Asthma, Gall Bladder removed 1999, Inguenal hernia 1987
 
 
 


JaSanne
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Date Joined Oct 2006
Total Posts : 2044
   Posted 10/12/2007 5:28 PM (GMT -7)   
I've been taking Neurontin for nerve pain, but it doesn't take care of arthritis pain and it interferes with hydrocodone. My GP started me on Talwin and I only take 1/2 tablet at a time. It's been doing better for me than hydrocodone. It's available in generic.
48 yr. old. Ileocolitis.  CD since early teens, misdx'd until age 36.  Hemicolectomy-left side in 2001.  Disease returned in 2003. Arthritis, episcleritis, chronic pain due to surgeries (nerve damage, adhesions) and disease.  Recently dx'd scoliosis.  History of endometriosis.


dragonfly137927
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Date Joined Sep 2006
Total Posts : 2527
   Posted 10/12/2007 5:48 PM (GMT -7)   
I am on Neurontin too for pain post op I take 3 a day ...I really am at a loss on what to take anymore, I will ask about the Talwin tho thanks
Dx with Crohn's 1987, symptoms as early as 1984.
Temp iliostomy February 2007, reversed June 2007, Ovarian cysts, migraines, allergies (incl food allergies) , oral allergy syndrome (diff than true food allergies), Asthma, Gall Bladder removed 1999, Inguenal hernia 1987
 
 
 


curley
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Date Joined Mar 2005
Total Posts : 4305
   Posted 10/12/2007 7:34 PM (GMT -7)   
it is so different for all of us and I wished I knew what to tell you about pain meds but you need to talk to your doctor and see if he/she can changed your meds up since you are not getting the relief.I am on the pain patches 50's and oxtcodone 30mg I'm allowed four aday and I as well am on neurontin as well.I wish you well and hope you are able to get on some meds that will help you with your pain.
Curley
.........
 


teddybearweiser
Veteran Member


Date Joined Oct 2004
Total Posts : 3042
   Posted 10/13/2007 2:17 AM (GMT -7)   
I take Vicodine for pain and some times Tramadol. They both help.
Hi, I am teddybearweiser, I am a male.
I was diagnosed with crohns disease when i was admitted to the hospital
in 1992, in Jan of 1993 I was back in the hospital for surgery for my crohns. I had part of my right colon resectioned with ilecolonstomy.
 My GI doctor has me on Asacol, Dicyclomine,Imuran,Celebrex and Remicade. B-12 injection once a month.
My Internest doctor has me on Lisnopril-HTCZ and Folic Acid. Diagnosed
with Osteoarthritis July 2007
 


caras
Regular Member


Date Joined Apr 2006
Total Posts : 59
   Posted 10/13/2007 2:44 AM (GMT -7)   
im having a difficult time with pain management as well.
and everytime im in the hospital i tell them that standard doses will not be effective on me, but they cant ever seem to understand that.
i was released yesterday with a perscription of only 5mg of oxycodon every 4 hours.
even the nurse thought this was ridiculous since i have been taking 20mg of oxy as well as a sub Q shot of dilaudid every 3 hours.
when the nurse and myself told the doctor that the percription would only last a couple of days because of how much i need to take, they wouldnt give me any more and told me i had to go see my family doctor to get anything.
lucky i had made an appointment for this monday for a different perscription refill so i'll be able to get something more realistic for my pain.
i find it very frustrating every time i'm in the hospital to get the staff to understand that i have been having surgeries since i was 16 and have been on many pain killers for long periods of time.
sometimes i get the impression that they think i want the drugs for fun, and not for pain relief.
its very insulting.
anyways. im hoping to also try something new that will work better for my pain management, because this new fistuala and recent abcsess drainage is killing me!
good luck!!

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 10/13/2007 9:29 AM (GMT -7)   
Stef do you have a pain mgmt doctor? I really think you need to see one. If your pain threshold is that high, I think you need to get a pain doc involved. They have so many more options available than most of the GI or PCP docs do. I can't believe you are able to function on that strong of pain meds. I know you said they make you hyper vs drugged. And I have a high tolerance to meds myself. But I think you have most of us beat. Just curious how do you get back and forth from work?
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.


Keah
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Date Joined Nov 2003
Total Posts : 7314
   Posted 10/13/2007 11:21 AM (GMT -7)   
Stef, I have to agree with Nanners. When you get to the point of tolerance that you are at with narcotics, you need someone who specializes in Pain Mgmt. The PCPs, GIs and Surgeons just can't handled our needs because they are not trained to deal with our tolerance.

I take anywhere from 40 to 100 mgs of Oxycontin each day and I often worry about what would happen if I ended up in a hospital where my Pain Doc doesn't practice. My inpatient experiences with Pain Mgmt have been miserable in the past and now that I'm so opioid tolerant I really worry.

I've learned that the key to Pain Mgmt is a knowledgable pratitioner who can ensure that the underlying disease process is being treated, but also appropriately address the associated pain. I wouldn't let my GI operate on me, I'd want a surgeon, so why should I allow him to control my pain. I want a specialist for that too.

I hope you find relief soon.
Keah a.k.a. Wormy
 God helps those who help themselves.
Please help us support this invaluable forum.
Crohn's Forum Moderator


KaNDiCe21
Regular Member


Date Joined Oct 2007
Total Posts : 106
   Posted 10/13/2007 6:35 PM (GMT -7)   
Hi everyone...I just want to know how you guys go about getting pain management? My GI will only give me 30 Lortab 7.5 a month and most of the time I have to take two. My pain is so intense most days I cry a lot, because I get so mad too. I've asked for more meds and they act like I'm not allowed to get any more. So do I need a referral to a pain clinic to able to get some relief, or would a new GI help me more??

Matthew
Veteran Member


Date Joined Oct 2004
Total Posts : 3932
   Posted 10/13/2007 8:19 PM (GMT -7)   
Keah,

I finally took my own advice in that department & started seeing a Pain mgt. Practioner myself. 2nd nicest doc I ever met ( my 2nd GI was the BEST). Fortunately, I don't have the tolerance issues that the two above have ( I find it hard to imagine, but with our DD ANYTHING is possible). Heck the need for that kind of pain relief might even hit a brickwall at the Pharmacy. In fact, I've heard accounts of other people who ran into THAT problem.
Well anyway, now that I've added Osteoarthritis to my Crohn's arthritis & kidneystones, proffessional pain relief was obviously called for.
Maybe an some kind of Opiate pump would be needed for Dragonfly??

Matthew

Keah
Veteran Member


Date Joined Nov 2003
Total Posts : 7314
   Posted 10/13/2007 10:19 PM (GMT -7)   
Kandice, GIs are notorious for undertreating pain. I really can't stretch my mind enough to find a reason why that would be so, but it is. In fact, I'd say that you're pretty lucky that you even get the 30 tabs that he prescribes. Many GIs outright refuse to script narcotics.

I never asked my GI for pain meds because I never had to. By the time I was Dx, my Primary was giving me pain meds. Then my joints all fell apart and my Rheumy would only agree that I shoudl take Ultracet, which kept me from sleeping. I knew that a Pain mgmt Doc could possibly give me a nerve block of some type to try and relieve some of my pain so I stopped into the Pain Center after another appt to find about about whether or not they accepted my insurance. As it turned out, I had coverage for out of network and so I didn't even need a referral to be covered.

So, how you get to Pain Mgmt depends on what your insurance is like. If you need referrals, then your Primary will have to give you one. If you don't need a referral, a search at your insurance co website should be able to give you a list of Pain Docs that accept your insurance. Hopefully you'll be able to get in to see a great Pain Doc soon.

Matthew, I'm so glad that you've got a great Pain Doc too and that the tolerance is not yet an issue for you. I've also heard horror stories about people running into problems at the pharmacy. It never ceases to amaze me how a pharmacy can turn into the narcotic police and second guess an MDs prescription. UUUGGHHH!!!
Keah a.k.a. Wormy
 God helps those who help themselves.
Please help us support this invaluable forum.
Crohn's Forum Moderator


dragonfly137927
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Date Joined Sep 2006
Total Posts : 2527
   Posted 10/14/2007 9:41 AM (GMT -7)   
I drive back and forth to work. Some days I only need 1 pain pill or none but there are the bad days where I need more up to 3 dilaudid and 2 of the CR oxycontin 20mg. Some days the pain is so intense that those meds dont help. The fistula pain is so bad some days it hurts when I sneeze or when I walk up or down stairs even drive overe a bump hurts my belly. I have asthma too and allergies so coughing hurts badly as well some days.
Dx with Crohn's 1987, symptoms as early as 1984.
Temp iliostomy February 2007, reversed June 2007, Ovarian cysts, migraines, allergies (incl food allergies) , oral allergy syndrome (diff than true food allergies), Asthma, Gall Bladder removed 1999, Inguenal hernia 1987
 
 
 


Matthew
Veteran Member


Date Joined Oct 2004
Total Posts : 3932
   Posted 10/14/2007 8:15 PM (GMT -7)   
Keah,

Me too! Though I'm going to have to bring up the fact that Celebrex isn't quite doing it for my CD arthritis ( its doing ok by my back though..).
I've only had tolerance issues with Coedeine, as you know. I'm practically immune to the stuff. Fortunately, either hydrocodone or Tramadol usually helps me. Not always, but enough..

Matthew

RxCrohnie
Regular Member


Date Joined Sep 2006
Total Posts : 146
   Posted 10/14/2007 8:28 PM (GMT -7)   
Dragonfly,
Where is your fistulae located? I am on hydrocodone7.5/500 but for the fistula pain it doesn't work but for regular crohns pain it helps. In fact, since I have had the fistula it now makes me nauseated half the time. Oxycontin extended release twice daily goes up to 80 mg, I believe, you can check on rxlist.com then you can take the oxyir in between every 4 hours or percocet (oxycodone). There is a good chronic pain article in medscape.com,you can register for free, lots of great advice on both crohns and pain control.
35 yo--Crohns since 2000, Granuloma cysts in mouth-oral surgery X2 in 2000, Fistula colon 2006, Rectovaginal Fistula 2007, Joint pain. Kidney Stones. Dx with Migraines in 2002 and Ovarian Cysts with Endometrosis 2001.  Dx with Fibromyalgia in 2007.  Now receiving Humira, Topamax 300mg daily, Cymbalta 120mg daily, Prevacid 30mg, Maxalt, Vicodin and Ultram as needed, Fish Oil, and Multivits   
 
RxCrohnie 


equinelvr
Regular Member


Date Joined Oct 2007
Total Posts : 31
   Posted 10/14/2007 11:59 PM (GMT -7)   
Wow, you guys are great. My GI doc always gives me "the look" when I ask for pain medication. He only gives me Vicodon 5/50. Lately it doesn't work. I have pain when walking and driving over bumps too. I'm starting to think I may have an abcess or fistula. I'm going to get into a pain mgmt doc right away.

Dragonfly- Sorry to hear you are in so much pain. Hope you can get some releif soon.
37 year old female diagnosed with CD 1 1/2 years ago. On Pentasa, Entocort EC, Prilosec, Promethazine, Vicodin, Ativan and Zoloft.


songstress
Regular Member


Date Joined Jul 2005
Total Posts : 393
   Posted 10/15/2007 7:33 AM (GMT -7)   
god can I relate to almost every story here....Ive had 4 GI's since getting this disease and it was only when I saw a pain mgmt specialist in the hospital 2 yrs ago that they gave me 300 oxycontin which lasted over 8-9mths..by then I was in remission and I found it easy to get off of them cuz they were extended/slow release

but yes...docs dont understand and in the hospital..I always sit in pain because they wont up my pain meds not realizing I am immune or I guess become tolerent of demerol at .25. And then they give it IM which means in muscle so it will last longer but after so long the nurses (who dont know what they are doing) keep giving it in the same muscle making it sore and then it wont absorb out to the body to help the pain...gotta love it

Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength

Diagnosed with severe Crohn's colitis in May 2005. I deal with daily arthritis ALL over my body, cystic acne, & fibromyaglia. Have taken Imuran, Remicade, TPN, Colozal, Entocort, Flagyl, PamineForte, Cipro, Dicyclomine, Prednisone, Asacol, Prevacid, and the list goes on. Currently on Remicade every 4wks, 20mg Pred, Asacol, 75mg Imuran, etc.


rootsmith
Veteran Member


Date Joined Jan 2004
Total Posts : 598
   Posted 10/15/2007 3:58 PM (GMT -7)   
My gi office told me they don't treat pain, only the gut. They expect pain to be treated by primary care.

You are not going to believe this but I have been to a pain clinic (before I knew I had CD) and THEY did not treat me for pain. This particular pain clinic (associated with a major hospital) only *recommended* a treatment plan. It was up to the referring doctor to actually carry it out.

One of the pharmacies in our local supermarket chain actually has a sign on the counter "we do not fill prescriptions for oxycontin"
10 years, many tests, 3 gi doctors, Pentasa 1000mg 3x day
diovan, simvastatin and now lexapro

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