Doc just denied darvoset refill...t-minus eight pills to pain

Take meds for pain?
1
Never - 3.0%
12
rarely - 36.4%
3
occasionally - 9.1%
10
frequently - 30.3%
7
habitually - 21.2%

 
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Mark Mac
Regular Member


Date Joined Mar 2008
Total Posts : 41
   Posted 3/15/2008 8:08 AM (GMT -7)   
Listen, I know that even being a mild narcotic, physicians have to be careful about prescribing and refilling without discretion, but I have seen such a difference in the way the way that different people are treated for their pain by their specialists. I have only been on darvoset for about a month, and it has really helped me cope during the day at work. When I would otherwise have to go home and get in bed to calm the pain in my gut, I could take a darvoset and at least finish out the day. I take an average of 3 a day, which in nowhere near to the extent as the rx allows (1-2 every 4-6 hrs as needed). It's the weekend thank goodness, and I am fine as long as I don't have any responsibilities, but the work week is rough on me and I have pain most days at work. Has anyone else dealt with this? I don't want to tell my GI how to do his job, but if he's not going to do it maybe I need to find someone that will. Is this his job? Does anyone see a GI and a pain mgmt specialist? Maybe I need to find someone that is more experienced in treating chronic pain with different qualities.

I am sensitive to the possibility of addiction. I have a family history of substance abuse, and do not want to go that direction. My ex-girlfriend, who has chronic pack pain and has been taking vicodin for the last couple years, was recently give a rx for oxyconton for her pain by her specialist. I begged her not to even fill the rx cause she just came off the vicodin and had a real hard time with it. I just think it's bizzare how some people are being given legal heroine for their pain, and some are being told to gut it out.
Diagnosed CD in 93'. Currently taking Humira, and darvoset for pain. Also getting acupuncture and chinese herbs as well as a massage when I can afford it. 107 lb

"I cannot promise that change will make things better, but change must occur if things are to become better"


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 3/15/2008 9:59 AM (GMT -7)   
GI's are notorious for not liking us to take pain meds. I have to get all my pain meds from my family doc. Some others on this board see pain mgmt specialists. You might try talking to your family doc and see if he/she can help or try getting a referral to a pain mgmt doc. Good luck!
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.


sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 3/15/2008 10:23 AM (GMT -7)   
I haven't even bothered to ask my GI for pain meds. He's made it very clear that he doesn't feel they are "good" for Crohn's patients. Evidently, he says they deter healing. However, as a patient, I cannot stand to feel the pain. It's more than a pain tolerance. It's a continuous reminder of being sick. It interferes with work and day to day life. When I take the pain meds (not at all in excess), I am more able to go about my life. As you put it -- it helps me cope. So, I have developed a relationship with a family doctor who prescribes Vicodin and Ativan as I need them. I know he is watching my usage, and that's ok. I also know that by taking 2, maybe 3, per day during these really bad times, I am not abusing them in any way. It's a fine line that I know they need to walk. But, I also get frustrated. Tylenol just doesn't work. If I take aspirin or Ibuprofen (which I occasionally do just because I don't want to take more Vicodin or tylenol), I bleed even more. It's not fair to ask us to deal with pain and discomfort. They can just moderate us and watch us. That's my thoughts, anyway.
--39 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
--stuck on methylprednisolone
--tried Prochymal in Phase III study (can't wait til it's approved!)
--waiting to start Tysabri
--single mom to 10-year-old girl


sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 3/15/2008 12:08 PM (GMT -7)   
I can't function on pain meds so don't take them even when prescribed. The two exceptions have been when I had my wisdom teeth removed. I took on Tylenol with codine and 14hours later was thinking "Wow, this hurts, I should care. I don't think I do. Wow, I can feel the blood moving through my teeeth. This is cool." and when I went to the ER with kidney stones. I remember a doctor saying 30mgs IV push. Then nothing until they came to take me to an ultra sound. I asked what ultra sound so they showed me pages of information I had filled out and consents I had signed. To this day I don't remember signing any of that paper work but it was clearly in my hand writing.
So, no pain meds for me.
Sj

Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 3/15/2008 3:41 PM (GMT -7)   
I take pain meds and my family doc RX them for me
Like Nanners my GI is very hesitant to rx the pain meds.......

If I need to take them I do plain and somple as I will not live in pain and not function
IMHO no one desreves to live in pain but it is up to that person ........Take care....Lyn

I would ask your doc or see a pain mgmt spec

BTW..I was on Oxycontin I am taking MS Contin now but I take the dosage RX and I am able to cope ....I wish you all the best.......
  DX With Crohns,Pyoderma Gangrenosum, Anxiety/ Panic and Other Disorders
 
Moderator @ Anxiety Panic..Alzheimer's..Co mod @ Crohns
 
   
 
                   
 


Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 3/15/2008 4:18 PM (GMT -7)   
Ask for a referal to a pain management clinic. I has made a world of difference for me and others on this site. They know how to deal with pain, what pain meds work for what type of pain and they only care about taking care of your pain. The GI's want to make the pain go away. As we all know it takes time for our meds to work, and sometimes, they don't take the pain away even when they do work. So we are left to live in pain. But the pain docs, just want to make our life tolerable. There is also a difference between a tolerance for pain meds and an addiction. My body has developed a tolerance. It takes more pain med to get my pain under control than it used to. But I have NEVER taken a pain medication when I have not been in pain. That is addiction. We should not have to live in pain just because we have a chronic illness. Obviously, this is one of my hot button issues. Please make the call Monday morning. You should be able to get in to see someone pretty quickly, at least that is the way they work near me.
Suzanne

CD 19 years offically, 29 unofficially. 3 resections '93, '95 '97
Symptoms constantly but all tests show only minor ulcerations. Currently having multiple episodes of gastritis with no known cause.


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


Keah
Veteran Member


Date Joined Nov 2003
Total Posts : 7314
   Posted 3/15/2008 5:24 PM (GMT -7)   
Mark, before you address the issue of how to get pain meds, I think you need to come to terms with the use of them. Once we have used narcotics for a long time, our bodies become DEPENDENT on them and stopping treatment will result in physical withdrawl.

DEPENDANCE is not the same as ADDITION.

Your girlfriend built up a TOLERANCE to the Vicodin she had been taking for several years. This meant that she needed to be prescribed a stronger narcotic in order for her to obtain the same level of relief.

TOLERANCE is not the same as ADDICTION.

After several years, she NEEDED that increase. In fact, most people with Chronic Pain are better off with an extended release medicatoin like Oxy which allows us a minimum of 12 hours relief without having to pop pills and wait for them to kick in. Often, these meds cut out the constant ups and downs we get from the shorter acting meds and this alone can help reduce overall pain by keeping the pain level from shooting up as it does when the 4 hour med wears off.

By the time I got Dx, my Primary was already giving my scripts of Vicodin to help with the pain, so I never really asked my GI for pain meds. As you can see from other replies here, GIs don't like the use of narcotics and many use the excuse of their constipating effects as the reason. Although there are some Crohnies who suffer primarily with constipation, most of us do actually benefit from these constipating effects. I certainly do!

When my joints got bad, I discussed the issue of pain relief with the Rheumy who had just Dx me with Spondylitis. He gave me some samples of Ultracet and said he wouldn't give me anything stronger. I already knew I couldn't tolerate Ultram because I had a paradoxical effect from it. Where most people would become sleepy, I got the inability to sleep.

I got to the point where I was tired of the Vicodin wearing off and suddenly finding myself in excrutiating pain so I called the Pain Mgmt Center at my local hospital. They have been wonderful and I honestly believe that anyone who suffers from chronic pain be treated by a paim Mgmt Doc. You wouldn't have your Primary treating your Crohn's would you? No, so why have GI treat pain?

The issue of Pain Mgmt is vry important for several reasons. First, these Docs are specially trained to know which meds will help the most with different types of problems. Second, they understand the differences in the words I used above: DEPENDANCE, TOLERANCE and ADDICTION. They know how to appropriately treat the first two and avoid the last. Thirdly, once you become accustomed to some level of pain relief from narcotics, you need to carefully address any new pain issue which might arise.

For example, I have been taking 40 mgs of Oxycontin twice a day for about 3 years. I also have a script for Noroc to use when I have breakthrough pain. In several weeks, I am going to have some extensive dental work done. I wouldn't even consider asking the Dentist how to treat that pain because I am already taking more narcotics than he would ever prescribe for a patient. So what am I going to do about my post-op pain? I discusses it with my Pain Doc and was told to take an additional Norco and was prescribed Dilaudid in case I need it. Now I know that I have a way to treat the pain when the time comes.

I hope that you can work something out with your Primary Doc so that either he will prescribe for you or will refer you to a good Pain Doc. Everyone DESERVES treamtent for pain. Don't give up until you get it!
Keah a.k.a. Wormy
 God helps those who help themselves.
Please help us support this invaluable forum.
Crohn's Forum Moderator


Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 3/16/2008 5:43 AM (GMT -7)   
Thanks KEAH
Well said and very aptly explained.........
and Zanne this is a hot button issue for me too especially within family ...........

Hoping all have a good day .
Lyn
  DX With Crohns,Pyoderma Gangrenosum, Anxiety/ Panic and Other Disorders
 
Moderator @ Anxiety Panic..Alzheimer's..Co mod @ Crohns
 
   
 
                   
 


CrohnsDaddy
Regular Member


Date Joined Oct 2007
Total Posts : 235
   Posted 3/16/2008 11:59 AM (GMT -7)   

I've been lucky so far. Prednisone has cleared up 90% of my pain. My CD symptoms also include very harsh lower back pain, and mild/moderate pain in most of the joints in my body. Unfortunately, I have a job where the strongest pain meds I can take are ibuprofen and acetaminophen. I feel like I have a mild case of the flu non-stop. Just last week, my GI prescribed Ultram ER to help me deal with the remaining lower back pain i have at night. OMG, it has just been unreal the difference. I have zero pain at night now, and can sleep 8 hours straight, waking up in the same position I went to sleep in. Haven't done that in years.

So why the long diatribe? It's all about quality of life. Please excuse the language, but screw dependency. If a person's quality of life is being degraded because of pain, then whatever they need to take to deal with it is fine, IMHO. Even if it means addiction. Going through life in pain with low quality of life is far worse than an addiction to prescription pain killers. My mother has severe RA. She suffers every day. Needlessly, IMO. She's so afraid of "getting hooked" that she doesn't take any pain meds at all. Honestly, is that any way to spend the sunset years??? I would just love to throw her a bottle of Oxycontin, and tell her to get busy. Life is hard enough, why do we insist on putting this huge stigma on things that can make it tolerable for those in pain? I'm not saying that everyone in the world should have free access to morphine, but those that are in pain should get the relief they need, even if it means an addiction. I dunno, maybe I've seen one too many episodes of House, but anyway... it often seems like too much emphasis is placed on "addiction", and not enough on Quality of Life.


Just trying to be a "Regular Member".
 
Entocort 9 mg/day, Pentasa 4 gm/day, started Humira 1/22/08, started 100 mg of Azasan (Imuran) 2/20/08. I'm convinced that Prednisone is the root of all evil, and primarily responsible for global warming.


RA+CDhouse
Regular Member


Date Joined Nov 2007
Total Posts : 99
   Posted 3/16/2008 2:51 PM (GMT -7)   
What exactly do you tell a pain management place when you call for an appointment?  We tried one time to get DH into one (primary suggested it) and they said "what is your diagnosis"; at that time we didn't have one...they would not even talk to DH.
 
Is Crohn's enough of a diagnosis to be seen?  Will they help him switch off of percocet on to something else?  I also often wonder why the percocet is the strongest thing his primary is willing to prescribe.  He has tried Cymbalta, Ultram, and Dilauded but has advserse symptoms with each one (urinary problems).
 
Anyway, what do you all tell the pain people when you call for an apointment?
Learning can only happen when a child is interested.  If he's not interested, it's like throwing marshmallows at his head and calling it eating.  Make him interested!


Keah
Veteran Member


Date Joined Nov 2003
Total Posts : 7314
   Posted 3/16/2008 4:45 PM (GMT -7)   
Crohn's Daddy - YOU TELL'EM! Way to go! I hope that somewhere along the line, either you or your mom's docs can convince her to try some sort of pain relief. Perhaps the new Ultram ER would be something to start with since it's not technically classified as a narcotic??????
 
The problem really is in the stigma that had previously been attached to narcotics. Your Mom grew up in an era where people just didn't use pain meds. Doctors were Gods and the Gods were afraid of having addicted patients. Younger Docs are more likely to prescribe narcotics for the treatment of chronic pain and older Doctors are more likely to tell a patient that they just have to learn to live with their condition. Isn't that a shame?
 
In any case, I'm glad that you've finally found some relief. I would suggest tho that you consider a complete evaluation froma Rheumy since you have a family history of RA and also have Crohn's. It's possible that your back and joint back is from Spondyloarthropathy (SpA), which is an inflammatory arthritis closely related to IBD.
 

Aimee =)
Veteran Member


Date Joined Jun 2004
Total Posts : 1020
   Posted 3/16/2008 4:47 PM (GMT -7)   
i only take them when flaring and in pain. When I'm on medication that works (right now, Humira) I do not have pain and don't need them.

That said - my GI prescribed me Vicodin and told me he doesn't want me to EVER deal with severe pain as that hinders my ability to handle the disease. Not to mention it hinders my ability to function! After seeing 3 prior GIs, I know mine is a minority in his caretaking.

Aimee =)
Veteran Member


Date Joined Jun 2004
Total Posts : 1020
   Posted 3/16/2008 4:50 PM (GMT -7)   
Oh - and I'm all for the quality of life argument, too. I know some are scared of things like Remicade and Humira (and pain meds) because of the (small) risks and what ifs. To me, it doesn't matter much. If my life consists of being in the hospital on a clear liquid diet, then it's not a life I want. I'll gladly trade the small risk for the possibility at a fulfilled normal life. It's never been a hard decision for me to make, honestly.

Keah
Veteran Member


Date Joined Nov 2003
Total Posts : 7314
   Posted 3/16/2008 4:51 PM (GMT -7)   
NewCrohnsWife - I've never been asked over the phone for a Dx, but if that's how they do it, Crohn's certainly qualifies you. When I went to my first appt, I brought copies of all of the tests that had been done, so there was no question that I had the problems I said I did.
 
Technically, something as indescriptive as low back pain can be a Dx, so don't get too hung up on the particulars. Use Crohn's to get you in and then just explain everything that you go through to the Doc. If you have copies of any CT scan reports or any other tests that you've had done, bring those with you. You might even want to just bring you box of pills. I know mine take up a decent sized makeup case.
 
I hope you find relief soon. Keep trying until you do.

CrohnsDaddy
Regular Member


Date Joined Oct 2007
Total Posts : 235
   Posted 3/17/2008 9:30 AM (GMT -7)   
Keah said...
Crohn's Daddy - YOU TELL'EM! Way to go! I hope that somewhere along the line, either you or your mom's docs can convince her to try some sort of pain relief. Perhaps the new Ultram ER would be something to start with since it's not technically classified as a narcotic??????
 
The problem really is in the stigma that had previously been attached to narcotics. Your Mom grew up in an era where people just didn't use pain meds. Doctors were Gods and the Gods were afraid of having addicted patients. Younger Docs are more likely to prescribe narcotics for the treatment of chronic pain and older Doctors are more likely to tell a patient that they just have to learn to live with their condition. Isn't that a shame?
 
In any case, I'm glad that you've finally found some relief. I would suggest tho that you consider a complete evaluation froma Rheumy since you have a family history of RA and also have Crohn's. It's possible that your back and joint back is from Spondyloarthropathy (SpA), which is an inflammatory arthritis closely related to IBD.
 
::Blush:: I do tend to get passionate about this subject. I've seen Mom (and others close to me) suffer from severe pain needlessly. Mom is currently taking Ultram ER. I told her all about the stuff after I had tried it and researched it on the web. It is giving her at least some relief.
 
Yes, I really do need to do a full workup at a Rheumy, but if I did, it would mean a bunch more time off of work. Time that I just can't afford to miss right now. It's lookiing like I'll be able to return to work next month after being out since October 1. Anxious to start supporting my family again, so the Rheumy visit is going to have to wait.
Just trying to be a "Regular Member".
 
Entocort 9 mg/day, Pentasa 4 gm/day, started Humira 1/22/08, started 100 mg of Azasan (Imuran) 2/20/08. I'm convinced that Prednisone is the root of all evil, and primarily responsible for global warming.


Lauren21
Regular Member


Date Joined Jan 2007
Total Posts : 200
   Posted 3/17/2008 11:38 AM (GMT -7)   
try going to a pain specialist in your area ... also you should try using a pain patch instead of a pill. pills are too hard on crohns. fentanyl is good but strong, so beware
22 yrs old, female
Crohn's Disease (diagnosed 2006)
Humira- stopped due to allergic reaction on Dec 1, 2007
Not currently on any medication
 
 
 
 
 
 
 


Matthew
Veteran Member


Date Joined Oct 2004
Total Posts : 3932
   Posted 3/17/2008 12:33 PM (GMT -7)   
CD *WILL* certainly qualify you to see a pain specialist. I only got a suggestion to try that route last summer. Fortunately, my pain doc has 2 days a week allowed for walk-ins. Well, they did the workup & my joint & back pain is now (mostly) controlled.
Do try this if needed, it can make a world of difference!

Sincerely,
Matthew

broomhilda
Veteran Member


Date Joined May 2007
Total Posts : 1488
   Posted 3/17/2008 6:13 PM (GMT -7)   
I will not exist in pain! My days are numbered I'm sure. The GP gives me percocet 120 tabs per every 4 months. Since the benzene issue in Tylenol, that rules out the norm. Some days I don't need anything. Most days I need at least 1 dose about mid afternoon and another in the evening. No addiction here. Dependency, possible. Dilaudid is my preference rather than morphine for post-op. I'm like CrohnsDaddy, can't imagine getting through my job without it. I guess if I get cut off...I'll call the pain mgmt clinic here too.
Dx'd Jan'06, 1st Resection 7/06, Predinsone, Humira, Imuran, B12 injections, Nexium. Secondary conditions: Psorasis, Acne, Fatigue, Joint Pain, Lactose Intolerant, gallstones, fibroid cysts, peri-menopausal.


Keah
Veteran Member


Date Joined Nov 2003
Total Posts : 7314
   Posted 3/18/2008 10:20 PM (GMT -7)   
Crohn's Daddy, could you get in to see a Rheumy before your expected return to work? There's still 2 weeks left of this month. Just asking because I really do understand about putting off MD appts and tests that NEED to be done due to my own responsibilities at work. By the time I finally had to stop working, I was so sick. In hindsight, I am amezed that I lasted as long as I did. Besides the Crohn's and Spondylitis, I was also in thyroid failure thanks to Hashimoto's Thyroiditis, yet another auto0immune disease. Sigh.

FYI Ultram ER is often initially prescrobed at 100mgs per day, but it can be taken at 200mgs or even 300mgs. I'm glad your Mom is finally getting some relief, but if she's on a lower dose, there may be room for improvement. (I just got my Mom up to 200mgs & working towards 300 soon, I hope)

CrohnsDaddy
Regular Member


Date Joined Oct 2007
Total Posts : 235
   Posted 3/19/2008 8:53 AM (GMT -7)   
Yeah, unfortunately there's no way I can do a Rheumy workup this time around. I'm an airline pilot, and the FAA determines whether or not we can fly based on what's wrong with us. A new diagnosis of anything autoimmune would set me back at least another couple months. So the Rheumy visit will have to wait. It does seem that most of the treatments I'm on for Crohn's is what would also help for alot of the other autoimmune diseases that fit my symptoms. So hopefully treating the Crohn's is going to give me more relief. There's such a potpourri of autoimmune diseases in my family that I really do need to do a full workup... Mom has Ankolosying Spondolitis, RA, Spodololathysis (not sure of the spelling on that one), and several others.

Thanks for the additional info on the Ultram.... Found out that the doc is hesitant to put her on much more, because she has Primary Pulmonary Hypertension (due to the Phen-Fen fiasco, but they disqualified her from the lawsuit because PPH can also be caused by RA), and her lung function is down to 40%.
Just trying to be a "Regular Member".
 
Entocort 9 mg/day, Pentasa 4 gm/day, started Humira 1/22/08, started 100 mg of Azasan (Imuran) 2/20/08. I'm convinced that Prednisone is the root of all evil, and primarily responsible for global warming.


Tom1
Regular Member


Date Joined Mar 2007
Total Posts : 228
   Posted 3/19/2008 10:15 AM (GMT -7)   
I think that each of us should have the lattitude to decide on the risks of pain medication.  I've had crohns for years.  At 68 years old, I'd rather be addicted than live with the chronic pain.

Melissa H
Regular Member


Date Joined Mar 2008
Total Posts : 85
   Posted 3/27/2008 11:34 AM (GMT -7)   
Thanks for these posts. Sometimes it's good to know you are not alone! My GI has diagnosed me with a "mild" CD case, and therefore (I feel) believes I must be having mild symptoms. Well, okay - I'm not in the ER room, but this has significantly hindered my life and my outlook on life. I am scared to drive anywhere because I always need a bathroom, and then I get anxious when I do have to leave the house, and I am in constant pain. When I mention this pain to my doc, he just takes notes and doesn't address it. Well, that's not true - the last time I was there, he said that it was IBS causing the pain and gave me a prescription for Bentyl. Which I'm taking at night because it conks me out, and I've also noticed I'm super bloated since starting it, which is very uncomfortable too.

I would prefer to stay away from pain meds, as I struggled with an addiction to morphine and oxycodone a couple of years ago (due to a perforated duodenym, ouch). It really scared me when I wanted to quit and had drug withdrawls...but on the other hand, I don't know how much longer I can function with all this pain.

Anyway, thanks for listening and I'll see about finding a pain management specialist (I didn't even know there was such a thing).

Mel
30 year old wifey and mom to 3 little girls, 2 dogs, and 2 ratties and working full-time outside of the home...nap anyone?
 
Suffered with symptoms for 12 years, dx Colitis-Crohn's 11/2007.  Taking Asacol, Omeprazol, Rowasa, Bentyl. Flaring non-stop, but trying to avoid steriods, argh. 
 
 
 
 
 
 
 

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