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Narcotics for Crohns pain

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Nanners
Elite Member
Joined : Apr 2005
Posts : 14999
Posted 11/6/2010 8:12 AM (GMT -7)
I respectfully disagree that using pain meds you are just going to become an addict. I have had this dd for over 35 years. I haven't used pain meds my whole time with Crohns, but I can tell you I have had to use them every single day for the past 7 years or so. I am prescribed Percoset to take 3 times a day as needed. I take 1/2 tab of Percoset 3 times a day. If I don't need it one of those three times, I don't take it and have no issues at all.

While my Crohns pain can be bad at times, I am now suffering with more issues than just Crohns. I need two knee replacements, have had 15 surgeries in my life, so now suffer adhesion pain, I have Fibromyalgia and suffer with Osteoarthritis. I coulnd'nt function without these pain meds. When my gut is in an uproar I find that Librax or Bentyl really help to quiet the spasms down. But the Percoset is reserved for my chronic pain syndromes.

I still am able to go to work everyday and still function and these pain meds enable me to do just that. Unless you have walked a day in my shoes, don't judge me for my meds that ARE needed. I have never abused the meds and truly dislike when people call us addicts when we are not, be have legitimate pain issues and need these meds. I get NO high from my meds, I get pain relief. JMHO
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Medicalkid2
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Joined : Oct 2010
Posts : 147
Posted 11/6/2010 8:28 AM (GMT -7)

Somebody said...
I get NO high from my meds, I get pain relief


Exactly. I'm not sure everyone gets this....
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Snivler
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Joined : Nov 2010
Posts : 81
Posted 11/6/2010 8:53 AM (GMT -7)
Hi everyone,
I am new to this group but just had to add that pain is so subjective that it is important to have a physician who "gets it". My Dr. trusts me not to be an idiot and I appreciate it. I am now dealing with UC rediagnosed to Crohn's with the added pain of fistulae. I would like to hear from people with similar problems. I will soon start Remicade and I need to decide how to deal with the chronic pain as well as the occasional flare pain.

Thanks everyone
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Medicalkid2
Regular Member
Joined : Oct 2010
Posts : 147
Posted 11/7/2010 9:05 AM (GMT -7)
Ugh once again I have pain...took some Tylenol and still nothing. I hate to ***** on here but I really can't vent anywhere else. I seriously can not find a position laying down, sitting, standing where I don't hurt now. I have a GI appointment in 2 weeks and I'm going to bring the pain up....I'm just hesitating because I remember missing SO much school from procedures and appointments last year (strangely had the best grades ever tho).
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MMMNAVY
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Joined : Jul 2006
Posts : 6927
Posted 11/7/2010 6:28 PM (GMT -7)
Steph,
I have to disagree as well I use narcotics when I need them. Now given that I have walk and run on broken bones, and having recieved other more severe injuries. I would say that a reasonable person would say that my pain tolerance is fairly high. But when it gets to the point that you are unable to walk or breathe without passing out from the pain. Then I think it is reasonable to use narcotics. I only use pain management about 10 days out of the month. I hate taking pills, shots, etc, but it is the only way that I can keep consiousness.
Navy
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MAG102886
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Posts : 674
Posted 11/7/2010 7:10 PM (GMT -7)
I think Stephs post was specifically directed towards people with only Crohn's pains.  Of course if there are other issues going on then pain meds may be needed.
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MMMNAVY
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Posts : 6927
Posted 11/7/2010 7:15 PM (GMT -7)
Mag,
I was refering to passing out from my crohns pain, not to my other injuries.  
Navy
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MAG102886
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Joined : Jul 2008
Posts : 674
Posted 11/7/2010 7:31 PM (GMT -7)
I totally agree that it's a very individual disease. I've already had 3 resections and have never been in remission in the 8 years that I've been diganosed, I'm in pain every day of my life.

 

I guess I'm just stuck on if someone is in so much pain (from their Crohn's alone) that they are passing out, or can't physically go on with their day because it's so bad then they should probably be in a hospital.  That's of course just my opinion.  If I was passing out from pain I'd be scared to death, and if I called my doctor and told him I was in that much pain he'd suggest I come to the ER as well.

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MMMNAVY
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Joined : Jul 2006
Posts : 6927
Posted 11/7/2010 7:45 PM (GMT -7)
Mag,
Please understand this has been going on for several years and I know how to manage it (and one of the tools that I use is pain management), if it gets out of control I do go into the hospital. I do not even have to call my doctor as I am a vet and he gets automatic updates.  But also realize there is a tendency to treat and street and if you have months to wait for the next doctors appointment one may not have to resources that one needs.  

Crohns is a highly individualized disease and judging others does not help anyone, especially if that person does not have the energy or wherewithal to advocate for themselves.  Comparing one patient to another with this disease is dangerous, because it manifests in such different ways.

I know my own body, but I also do not want to ever be accused of wimping out, so I did use to push it alot more.  But then after what I went thru it was just expected.

What I do know that being judged as someone who lacks fortitude because I take pain medication is laughable.

Grit is not something I lack. 
Navy

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MAG102886
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Joined : Jul 2008
Posts : 674
Posted 11/7/2010 8:03 PM (GMT -7)
I never judged anyone in any of my posts on this thread.  There's a difference between judging and stating an opinion.   I try to make that as clear as possible in every post I make.

 

Post Edited (MAG102886) : 11/7/2010 8:06:29 PM (GMT-7)

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MMMNAVY
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Joined : Jul 2006
Posts : 6927
Posted 11/7/2010 8:13 PM (GMT -7)
I disagree with the theory that one can render an opinion without judgment. As the definition of opinion is: "the view somebody takes about an issue, especially when it is based solely on personal judgment" or "judgment or belief not founded on certainty or proof."
Unless you are using another definition of opinion, in that case I will allow for the remote possiblity.  How about the Webster definition: "a view, judgment, or appraisal formed in the mind about a particular matter."

 

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MAG102886
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Joined : Jul 2008
Posts : 674
Posted 11/7/2010 8:24 PM (GMT -7)
My opinion is me stating how I feel about something, usually what I would do if it were me....What's best for me is not what's best for everyone. Hence, why I almost always state that my posts are my opinions.

A judgement would be thinking differently or badly or talking down to you, trying to belittle you because of what you choose to do.

That's MY definition of it.  Not Webster's.

Regardless this is getting pointless and petty now.  Sorry if I offended you, it of course was never my intention.

This gave me a chuckle when I read it too.

http://www.jonbishop.com/2009/09/wheres-the-line-between-opinion-and-judgement/

Post Edited (MAG102886) : 11/7/2010 8:35:35 PM (GMT-7)

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Aimee =)
Veteran Member
Joined : Jun 2004
Posts : 1020
Posted 11/8/2010 10:02 AM (GMT -7)
My opinion is that my body cannot work well in fighting the infection, disease, and other issues it has if it is so strained from the constant pain. I cannot handle focusing on healing myself if I am in so much pain that I am passing out, throwing up, and confined to my home. Constant severe pain is bad for the physical body and bad for your mental health. It can quickly consume you. I don't think we are meant to deal with such high levels of pain without an end in sight. Perhaps I'm just weak but day after day of that kind of pain would have me contemplating some serious rash decisions.

I use Vicodin as needed. I've often wondered what it is that people get addicted to because I feel nothing but relief - no side effects, no "good" feeling, etc. Just relief so that I can stand up right and function in my life. Maybe it's different if you have no pain? I have a full bottle at home but haven't used it since about 3 weeks post-op back in February.

 

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CrohnsSince'95
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Joined : May 2011
Posts : 2
Posted 5/21/2011 1:54 AM (GMT -7)
Sorry to bump such an old thread, but trying to get some help and thinking this might be where I can get it......

First off, new member here and thanks for having this community :-)

O.k., I have had crohns since 1995..... The medications I am on right now are Cimzia, Prednisone 20mg day, Nexium, Potassium supplement, Roxicodone 30mg 5 x day, Fentanyl patch 75 mcg one every 3 days.......

I have been going to my pain clinic which gives me my roxicodone and fentanyl patches for almost 2 years. This past Thursday i had my normal appt. and made me take a drug screen. I usually have to take one every 4-5 months, but just did one last month. The doctor came in and talked to me and said that last months urine screen came back negative for the roxicodone. They do a 10 panel test and it tests for opiates as well as oxycodone. I told him that the past two months I have been having night and day sweats as bad as I ever have. I have also been told by other doctors that some medications I have taken in the past have not metabolized in my body like they should.....

Is there anywhere i can get reference materials as to why the tests might come back negative? I have been taking the 150 mgs. every day as I have had 3 rectal fistulas/abscesses for 3-4 months and they are very painful.

He has known me for a long time and he knows that I do take my meds and that i am not selling them or anything, but he said the law requires documentation (I live in GA and they are cracking down because of drug abusers).

He held my scripts until the lab gave him confirmation of the drug test that day, but I am afraid that if it happens again then I will be kicked out and from what people have said, if you get thrown out of a pain clinic then it is nearly impossible to get into another one. And my gastro and colo rectal surgeon aren't comfortable prescribing anything over like percocet 10mg x 30 pills except for a cpl. of weeks after surgery.

I take each and every one of my meds. exactly as prescribed and I do not abuse any of my narcotic meds even a little bit. I don't want to be penalized for something that my crohns may be causing or for some other reason....... Any help/input would be very helpful.

Thanks so much for reading and i look forward to asking more questions and possibly being to help others if possible.
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CrohnsSince'95
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Joined : May 2011
Posts : 2
Posted 5/21/2011 2:04 AM (GMT -7)

MMMNAVY said...
Mag,
Please understand this has been going on for several years and I know how to manage it (and one of the tools that I use is pain management), if it gets out of control I do go into the hospital. I do not even have to call my doctor as I am a vet and he gets automatic updates. But also realize there is a tendency to treat and street and if you have months to wait for the next doctors appointment one may not have to resources that one needs.
Crohns is a highly individualized disease and judging others does not help anyone, especially if that person does not have the energy or wherewithal to advocate for themselves. Comparing one patient to another with this disease is dangerous, because it manifests in such different ways.

I know my own body, but I also do not want to ever be accused of wimping out, so I did use to push it alot more. But then after what I went thru it was just expected.

What I do know that being judged as someone who lacks fortitude because I take pain medication is laughable.

Grit is not something I lack.
Navy

I totally agree with you 100%... I can't tell you the times I went to my doctor or the ER and they couldn't believe that I had been suffering with that particular problem for weeks or even months. In the 16 years I have had this disease, I have spent many many many hours in doctors offices and hospitals, if I had gone to them for every single thing that happened then I would have almost just as well had moved into a care facility.

I think when you have something as horrible as this disease (which does affect each person differently) then over time you build up tolerances and you learn to cope with certain things that other people might otherwise go in shock over...

One quick example was a couple of months I had went to take a bowel movement in my toilet and couldn't go. I did feel something leaking and it was blood pouring out of one of the open fistulas I had. I asked my wife to help me stop the bleeding and she about passed out and was insisting to call 911 and get me to the hospital. I told her that even though this was a little more than normal, I deal with it 2-3 times a week. I have active crohns and until I get into remission then the fistulas wont close and I just have to deal with it.
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CrohnsPatient
Regular Member
Joined : Feb 2008
Posts : 314
Posted 5/21/2011 5:48 AM (GMT -7)
I take currently 90mg of oxycontin three times a day, and i have 30mg oxycodone up to eight a day for breakthrough. I've also tried fentynal in the past, morphine, dalaudid, demerol, opana and others, and I've had all the ones available through IV through IV and by mouth or patch or which ever routes they happen to come in.

I dont think anyone should be vilified for needed to take a narcotic. Just because someone knows someone else who has become addicted to pain medicine doesnt mean anything, its not like that addictio is all of a sudden going to jump from this 'addicted' person to you.

Not to mention I tend to see people calling OTHERS addicted, when first of all they don't know the pain their in, and just because you may feel pain doesnt mean you or anyone has the right to tell someone else that 'suck it up' or 'if i can do it you can do it' or whatever your saying happens to be.

Alot of times people call dependence...addiction. Or they think because someone has a tolerance that they MUST be seaking more medicine for the high, for the euphoria, for the buzz....for their 'addiction' when thats not the case at all. The same dosage obviously doesnt work after taking something for years. Its just not fair to the person in the pain the person that needs this to function and for them to feel horrible everyday of their entire lives and constantly think about it dont need others feeling bad about them also, its just not the suppport that these people tend to need on a constant and daily basis.

I think the lesson should be, don't be scared. Stop believing what you hear in the media. Not to mention its been proven that people that use narcotics who are truely in pain or chronic pain tend to not be the people who are abusing narcotics, it tends to be the people that actually are not in pain and are still using the narcotics. Something to think about....
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jeanneac
Veteran Member
Joined : Feb 2009
Posts : 1930
Posted 5/21/2011 6:26 AM (GMT -7)
When my colitis was active, I was lucky to still have some left over pain reliever (loritab) from a cracked tooth. Otherwise, I guess I would have begged my PCP for them otherwise. Now, I have joint pain that isn't well controlled. Sometimes at night I have to take 1/2 a loritab b/c I can't take NSAIDS b/c what they do to your stomach.
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lady1012
Regular Member
Joined : Nov 2006
Posts : 304
Posted 5/21/2011 3:51 PM (GMT -7)
I am on Toradol as needed for pain to a max of three a day...it seems to help make me comfy..if im flaring then it only makes me comfy with a bit of discomfort..if flaring real bad then it only helps a small bit

it took forever to get the doc to give me that as tylenol or motrin did not even touch the pain..it will take a while before people realize that when we are in pain its like our insides being ripped out and we need relief...
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CD-89
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Joined : Dec 2010
Posts : 67
Posted 5/22/2011 4:51 PM (GMT -7)
I take Tylenol 3's, and only when absolutely necessary; mostly if I think I will be able to avoid a trip to the ER. I also have Ativan (Lorazepam) which I was prescribed when I started to have anxiety and increased heart rate (130-150) from the Prednisone. I find if I am having a lot of pain, a T3 and an Ativan can help to at least relax me a bit. My doctor has offered pain meds such as Dilaudid, but I am hoping the Remicade will kick in soon, and that I will be free of pain meds smilewinkgrin

p.s. The good thing about T3's is that they are constipating, which is nice when you are having a bad diarrhea day. The unfortunate thing though, is if you are having constipation pain, T3's are going to make the problem worse in the long run.
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Medicalkid2
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Posts : 147
Posted 5/23/2011 3:43 AM (GMT -7)

Somebody said...
I take Tylenol 3's, and only when absolutely necessary; mostly if I think I will be able to avoid a trip to the ER. I also have Ativan (Lorazepam) which I was prescribed when I started to have anxiety and increased heart rate (130-150) from the Prednisone. I find if I am having a lot of pain, a T3 and an Ativan can help to at least relax me a bit. My doctor has offered pain meds such as Dilaudid, but I am hoping the Remicade will kick in soon, and that I will be free of pain meds smilewinkgrin

p.s. The good thing about T3's is that they are constipating, which is nice when you are having a bad diarrhea day. The unfortunate thing though, is if you are having constipation pain, T3's are going to make the problem worse in the long run.


Wow I was just thinking about this the other day and wanted to get some advise...I recently started running pretty far (I usually run 45-90 minutes/day in the summer) however my Crohns/IBS/Unknown GI problem (ugh I really hate this :( ) acts up. At first I thought it was just dehydration and that could likely be the case but I get horrible cramping with diarrhea even when hydrating pretty aggressively (I run earlier in the day but before so I usually drink AT LEAST 24FL oz of water but usually gatorade with a banana and of course other food) The other day I ran 17 miles because I was having a relatively pain free day but when I got home I showered but after I just felt like a train wreck! I took a T3 and that helped but that was my last one from months ago. Since I have some inflammatory connective tissue disorder I take naproxen 550 q8h twice a day and that does wonders but lately it has not been enough (well its never been enough but its better than nothing!). My GI relunctantly wrote me Tylenol #3 1-2 tablets every 8 hours prn (which is weak but I usually don't need around the clock pain relief) so I want to bring this up with my internist this week...however she is really opio-phobe in general at least with me and last time I brought up Tylenol #3 she flat out refused as if I had just asked her to make me a sandwich and write me 40mg of OxyContin!! I'm not sure what to "say" to "convince" her I know that sounds dirty but its just frustrating. I just want Tylenol #3 or Lortab 2.5mg as needed for pain, I don't even need to take it more than twice a day and only on days I really need it at this point. In the past I had physicians offering me narcotics so I'm not sure what the issue is (well I do know what it is but still). Suggestions?
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Nanners
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Posted 5/23/2011 6:28 AM (GMT -7)
Well you should NOT be taking Naproxen. That can cause bleeding and the Crohns to flare back up. So thats a point to make to your docs. I always get my pain meds from my family doc. GI's are notorious for not prescribing pain meds. If the family doc won't prescribe then demand a referral to a pain mgmt clinic. Hugs!
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CrohnsPatient
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Posted 5/23/2011 6:52 AM (GMT -7)
CrohnsSince 95..... I just wanted to add to this thread that I know that when it comes to urine screens they can be thrown off by a multitude of things. I have had one urine screen come back saying I had methadone in my system, which was the drug I had been being prescribed for about 4 months to see how well it worked for me, but I hadn't had any of that in about a month, but my urine screen came back as if I was still taking the methadone and on top of that, the new medication prescribed to me, which I knew wasn't true. And the awful way I had found out about this is I had started flaring and went to the ER and it wasn't an ER I normally went to but I had went to my regular ER and there were 26 people ahead of me, so I went online to a hospital that posts their current ER wait times and there was another really local ER I went to I had only been to 2 or 3 times, and the doctor gave his orders which included dalaudid which is what usualy helps my flares through IV...then he decided to give me a second bigger dose and then about an hour later came back and said he had talked to my pain dr, who I had only been seeing for about 6 months, and actually only SAW him twice in that 6 months the other times I would just call and they tell me to come pick up a script which I didnt personally like, but the ER doctor had told me that the pain doctor said my urine screen came back positive for a drug methadone that he had stopped the month earlier. Well I was seeing a psychiatrist at the time, and that pain doctor saying that actually made me so mad that i never called nor went back I just stopped going and went to another pain doctor, which also shows that if you 'fail' a urine screen that you can still find a pain management doctor that WILL treat you, but my psychiatrist I got telling him about what had happened because it bothered me still, even though I wasn't seeing this doctor anymore it bothered me enough to want to talk about it, so I told him and he pulled out a medication booklet of some sort for doctors, and looked up each of my medications I was on, and it showed that actually 2 of my medications specifically listed that they would cause other medications to stay in the body for longer durations including anti-anxiety medications and also narcotic pain medications, which explained everything, thats why the drug was still in my system, where as to begin with methadone has a much longer half life and duration in the body as most have something like a 3 days span, which made the pain doctor think that I had taken the drug methadoe within the past 3 days not weeks prior like the reality of it was.

So lots of things can scue the results of a urine screen. Also you mentioned the drug test tested for 'opiaites and also oxycodone' what do you mean by this? because oxycodone is an opiate, it would be in that opiote class or section of the drug test so why would they test for it again seperatly especially when thats not one of the medications your presribed correct?

The pain doctor I left I am actually glad that this all happened because like i said I had seen him twice in 6 or 7 month period and would just drive to pick up prescription from the secretary, not even a nurse, and she would always talk to me and I had seen her talk to other patients as if she were a doctor and knew what was going on and she would actually talk down to us to the point I hated going Id just get the scripts and leave.

Also the only reason I had seen this doctor is because there isn't many of them in my area to begin which which is really ridiculous since its the most populated area of the state of virginia with almost 8 million of the 13 or so million in the entire state. but I only went to him because my previous doctor left the area because he got offered a teaching job at yale medical school in pain management and anestesiology. Well the doctor that had left had me taking 30mg oxycontin twice a day, and then 10mg norco's and I think it was either 8 or 10 a day was the max I could take. But when I went to this doctor he immediatly cut it down, and not even in half he took a hack saw to it...starting writing for ONLY 3-10mg percocet per day, and so that was about 1/3 of the normal instant release I was taking and had been taking for a year, and then turned around and wrote for NOTHING for extended release, he would not give me a reasoning, other then hinting at my age...which was around 23 or 24 at the time, which the age of a patient has absolutely nothing to do with how your going to treat a patient medication wise, so I never understood this and he knew I wasnt abusing medication so I didnt understand it from that point of view either. then months later after saying this isn't working you know this is not working...he still continued 3-10mg percocet per day, and he wrote for 50mcg fentynal patches, so this was the first time I had tried them, so i tried them and they worked, so I called the office and told them hey this work so I'm better off then I was just not to the point of relief like when I came in, thats ideal point of relief for me, liveable levels of pain. So really if they would have kept it at 50mcg of the patches and upped my percocet just a little bit to like even 5-10mg percocet a day that would have been better i suppose, so anyway I go the next month to pick up my scripts for that months....and he had written 3-10mg percocet a day still and when i lookeed at th eother script....it had been cut in half...to 25mcg patches, I was like this isn't what I take, he wrote for 50mcg patches last month and i told ya'll that it was getting better but i still wasnt recieving relief like when i got here to this practice, she goes well this is wht he says he wants you to have...that made me really made...like why did he change it after i told him we were finaly getting SOME relief but it still wasnt enough for me to go out of the house even, and then he cuts it in half...i mean he should have been going up not down. so in all it was a hidden treasure i guess you could call it in me geting mad at leaving the practice.
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Medicalkid2
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Joined : Oct 2010
Posts : 147
Posted 5/23/2011 11:26 AM (GMT -7)

Somebody said...
Well you should NOT be taking Naproxen. That can cause bleeding and the Crohns to flare back up. So thats a point to make to your docs. I always get my pain meds from my family doc. GI's are notorious for not prescribing pain meds. If the family doc won't prescribe then demand a referral to a pain mgmt clinic. Hugs!



I'm not sure why my family doctor (Internist, she's really qualified) would prescribe me naproxen then...she doesn't think their is any harm even though I asked about NSAIDs and she didn't seam to worried but I do get concerned. Its just Naproxen works so well for the inflammation. I mean I hate to demand for narcotics but I honestly do not see the harm of such a small dose and small quantity of narcotics...my doctor's will not refer me to a pain management clinic they don't think its that bad I guess, My GI's PA ranted about how none of his "patients" were on narcotics. I don't need hardcore pain management I just need a small supply of it to take prn which shouldn't raise any red flags at all....
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