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Crohns Patient given grief for pain meds

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Posted 12/1/2010 4:22 AM (GMT 0)
I have had Crohns disease since i was 17 (35 yrs old now) and I have used percocet as a pain reliever for the past 5 years.  Over the years my reliance on opiates to curb my pain has grown.  Instead of using 20mg a week my current use is about 10mg a day, approximately 60 5mg pills a month.  My need has grown because my Crohns has evolved and gotten worse over the past few years.  The main problem for me is that conventional tests: colonoscopy, MRIs, etc don't reveal anything astounding or show the disease in a 'severe' form.  The last 6 inches of my colon are badly ulcerated but the ileum where my disease originated doesn't show much of anything.  Even being on biological meds (Humira) it does not fulling control my symptoms and doesn't put me into remission.  My symptoms of sharp pain, intense blooting and diahhrea have persisted.  Percocets offer me relief (being a Crohns patient I can't take any ibuprofen). I have landed in the hospital 4 times this year and you would think that i would get more sympathy when asking for pain meds but it seems that he is getting uncomfortable issuing them.  Not only is it embarrasing but i get nervous asking him to refill my perscriptions.  He called me up a few weeks back and gave me a speech about addiction to opiates.  Really it just gets so frustrating. He insists he trusts me and he continues to fill my meds but I just don't want to deal with the grief anymore.  SHould i ask him to send me to a pain dr?  HOnestly he is a good GI and i have been with him for the full 17 yrs, i just don't feel like dealing with the embarrasment anymore.  What should i do if anything?

Thanks

Posted 12/1/2010 4:35 AM (GMT 0)
Sean,
First of all welcome to the forum! I am sorry that you are going through chronic pain to be here, but glad you found your way to us. You will find many of us have the same issues you are dealing with both with crohn's, bowel disease, chronic pain and doctor's.

I too have felt embarrassed and as though my pain was being neglected or belittled so a doctor didn't have to prescribe opiates. You have every right to request to see a pain management doctor and I strongly encourage you to do so! There are so many treatments and medications out there that every doctor can't possibly be up to date on them all. Have you also noticed a flare of your crohn's along with the constipation that opiates can cause?

Hopefully your GI doctor (who sounds like he has helped you greatly in the past) will understand the changes in your condition and see your need for pain management. Try not to be embarrassed that you need opiates or medications to manage pain. I know I felt that way for years and dealt with the same mentality from my doctors too. If you are uncomfortable asking your GI to refer you to pain management, speak to your primary care doctor and see if they can refer you instead, or call a few pain management specialists in your area and see if they allow self referrals. Also, check with your insurance on what you may need from them for your appointment. I too had a wonderful doc for many years that refused to see any change in my condition, diagnose me with the correct illness, or prescribe pain meds of any kind. I had to end that relationship to get the care that I needed. Hopefully that won't be the case with your GI doc!

I hope things get better for you soon and that you take care of you!

Mindy
Posted 12/1/2010 7:23 AM (GMT 0)
Hi Sean and welcome!

I'm sorry you're finding out another down side of taking pain medications. We get labeled and unfortunately doctors don't give us any benefit of the doubt when t comes to needing them.

Under the circumstanced I would ask for a referral to a pain specialist. But be careful about who you take on too. Some are compassionate and not afraid to prescribe pain medications while others will cut you off cold turkey. Please interview the doctors you are considering using for CP control Remember...You are hiring them, not the other way around. If your philosophy doesn't match theirs then interview another. Be straight forward with them. You are NOT a drug seeker but since you've been on the medication so long your system has built up resistance. It takes more and more over time to do the same job of controlling pain. That's very normal and just how our bodies work. Don't be pushy but be open and honest. And Yes, crohns causes pain!

People like you, me and the rest of the member with CP deserve the respect of honest and caring treatment. There are so many good types of pain control medication but many doctors are afraid of the stigma and legal hassles that they perceive may follow. In the mean time people suffer needlessly with intense pain for days, years or nearly a lifetime because ot this cruel treatment.

OK, stepping down from my soap-box wink Please keep in touch and let us know how things progress...OK?

Chutz
Posted 12/1/2010 12:59 PM (GMT 0)
Hi and welcome to HW! I don't know much about Chrons, thank goodness, but I do understand CP and will be there to help in any way I can. A good Pain Managagement (PM) doctor is so important and can help, but Chutz pretty much said it all. There are good and bad out there and we can all give stories of that.

Please search well and ask questions from others if you know anyone else going to that particular PM practice. It is so important because your records stay with you forever.

I hope you find relief soon!
Posted 12/1/2010 5:10 PM (GMT 0)
Hi Sean, I too would like to welcome you aboard to Healing Wells chronic pain forum. I am sorry to hear that crohns is giving you such grief but being a chronnie too, I totally understand where you are at. Its amazing all the other things this disease can cause and affect. I still have trouble wrapping my brain around it. Gee, I am impressed your dr has been giving you percocet, my dr would never rx that to a patient no matter what. At best, he had offered me some vicodin, which I cannot take. Because of so much joint pain he did refer me to a pain mgt dr. He told me up front that he just did not want to be involved in handing out scripts for pain meds because all too often that can lead to a dr spending more time trying to determine if Joe Blow needs a refill or not when he needs to be taking care of his patients that are in his office, the ones calling in sick as dogs & the ones that are in the hospital. I can appreciate what he said to me and since I do know first hand his patient load I can understand why he does not want to jump on that band wagon. I do have a question about your dr though, anytime they rx something say percocet they are suppose to give us a little speech about addiction issues. Is this what is happening or do you think your dr is doubting you as a patient. If you have been with the guy all those years you should be able to tell where he is coming from I would think.

If you are leaning towards consulting with a PM dr be sure its one that will rx meds to patients. There are two types of PM drs. One will do injections and procedures only and the other will do the same plus write scripts. Also, I do think you will need a PM dr that knows about crohns and what it can do to a person besides the intestinal issues. Otherwise, you may be seeing someone for nothing.

Again, welcome aboard and take care.
Posted 12/2/2010 8:14 PM (GMT 0)
I have a similar case as well! I have crohns, well some doctors think i do some dont...either way my colonoscopys, mris, ct scans come back fine... Though no ones ever been able to see my terminal illeum..anyways i have constant pain in my back,abdomin as well as my joints, ive been taking the maximum dose of tylenol with some small use of NSAIDs and still have pain. Im 17 and have had these symptoms since i was 14ish but its gotten bad recently. My doctors dont feel comfortable prescribing anything stronger than OTC stuff, i was going to ask to try darvon so it wouldnt look so bad but thats off the market and i cant take Tylenol 3 or Tramadol due to drug interactions :/. Im going to consider other options to though.
Posted 12/8/2010 4:02 PM (GMT 0)

Thank you everyone for your informative responses, they are very helpful and hopefully if I decide to go the route of a pain dr it will help me choose the right one to fit my needs.

In response to Straydog's questions, yes he gives me the speech about addiction everytime he prescribe's me percocet but I do get the impression he doesn't trust me from his remarks.  He typically says that I shouldn't be 'in that much pain' due to the current status of my crohns or he will say 'you don't look like a patient that needs to be on percocet.'  Of course i am thankful that he does prescribe pain meds and yes I do appreciate the addiction speeches because I know he cares about my well-being but sometimes he goes overboard with the comments.  It's confusing and embarrasing, I do understand that it's not common practice to give them out but I would rather have him cut me off and refer me to a pain mgmt clinic then to hassle me everytime i ask for them.

For now i will stay the current course unless the comments and doubting continues.

Posted 12/8/2010 4:58 PM (GMT 0)
Hi Sean, and welcome to our forum! I always hate to see another person in pain, but I am glad they find their way here! You will find many wonderful, caring friends here that really do understand!

Many have already given you some great advice, but I wonder.....because of your relationship with your GI....if you could just ask him if he would feel better about the situation if you were seeing a pain doc? My PCP prescribes my pain meds because it is a written script monthly and my pain doc is 50 miles away.....but she sent me there first and does what he recommends. When I first went to the pain doc, I was concerned about addiction. He explained to me there was a difference between addiction and dependence and tolerance. A good pain doc knows that your body is dependent on pain meds and that you will develop a tolerance and have to increase over time, but that does not mean you are an addict. My doc checks the level of meds in my blood pretty regularly. Anyway.....if you do end up going to a pain doc.....remember what Chutz said...you are hiring them! Make sure it is someone who is willing to work with you to get your pain under control! You have the right to NOT be in pain!

Keep us updated and take care of you!

Beckey
Posted 12/8/2010 7:48 PM (GMT 0)
Sean, why not be upfront and ask your dr what his problem is when he gets in this mood with you. I would be very upfront and let him know you have always been very truthful and honest with him, but when he uses that tone it makes you feel as if he is doubting you and honesty has always been your policy. As your dr you trust him and you have never in all of your years as his patient ever given him a reason to distrust you. It may be a thing where he has something else on his mind when he comes in the room and he may not even be aware of how biting his attitude. I very much think its worth investigating on your part. If he says he is uncomfortable continuing to rx the medication then ask him to refer you to a PM dr. That is giving him an out with out any hassle.

Hope you get this worked out.
Posted 12/8/2010 9:06 PM (GMT 0)
In response to Straydog and antbuggey too, everytime he does make these offhand and snide comments i fire right back at him with the 'if you don't trust me' spiel. He always interrupts me and tells me that he trusts me completely and 'i'm one of the few patients that he actually trusts.' That's the reason for my confusion. Last time he started with the comments I was ready to ask for a referral but he was quick to respond with his typical 'i trust you' speech. Granted this just started with my last 2-3 visits but it has been the reoccuring theme lately.
Posted 12/9/2010 2:45 AM (GMT 0)
Wow, Sean, I truly do not know what to think of this dr, very baffling to say the least. I do understand you in not wanting to hear the snide remarks. I guess all you can do until you decide differently is just what you have been doing, it's a shame he has to be this way.

Take care.
Posted 12/9/2010 5:06 AM (GMT 0)
Sean,
I guess I feel like he must trust you if he continues to write you for more meds every month. I agree with (Susie?) that you maybe could ask him why he brought up the addiction the next time he brings it up.

I know my PM gets like that from time to time -- lectures about tolerance followed by the "you're one of my most trustworthy patients" speeches. After a very long guessing game, I finally figured out that all it really means is that he's frustrated that I'm not getting better. Man oh man, I don't know why he couldn't have said THAT instead. But other than the annual drug holidays, he kept writing me for meds. I did find that it helped to do two things: (1) put data in front of him and (2) tell him how much I appreciated him & how his treatment positively impacted my ability to function. The data I included was: chart of how much pain meds I took each month with spikes and lows of my pain levels, list of times when I took less medicine than prescribed and/or when on a drug holiday, list of alt therapies and non-narc meds I tried to manage pain.

I really think your GI means well and is probably just frustrated about you not getting better. Really truly, especially in the current environment where docs are under the gun from just about everyone, no doctor is going to write monthly scripts for a patient he thinks is an addict. You'd be sent to drug counseling, called in for mid-month UA's, changed to mainly non-narcs, and placed on a weekly or semi-weekly schedule for picking up short-term scripts.

If it were me, I'd let the doc know that he already talked to you about addictive potential of the meds the last visit & the one before that & every visit before that going back several months, and that you respect the seriousness of the medication but are just very grateful that he has been willing to prescribe it to you because it allows you to do _____, _______, ______ and improves your _______, ________, _________. Remind him that you are willing to try ANYthing else that works for your condition -- and come prepared with a list of meds & other treatments you've tried in the past and what their outcomes were. Then, tell him again how grateful you are for having a doctor who has provided you with good treatment for your condition & your pain [which he has, even if it's been in a less than graceful manner].

I think it's really tough on doctors sometimes. They get into the medical profession because they want to heal people, but then there are these awful conditions that can't be cured but instead are "managed". Managed sucks. It sucks for the patient and sucks for the doctor. The doctor, especially PM's, has to see people come in all day long who never get better. In fact, we usually get worse over time, even with the best treatments available. So they feel like they have to do something & unfortunately, sometimes that means pointless lectures. And that makes me feel like my doctor isn't on my side anymore -- like he's taken up with my family & some friends & those stupid people on the street always ready with their trite little comments. But the reality is that most of the time my PM is on my side; he just gets frustrated sometimes & he forgets that he's given me the exact same lecture for 8 months in a row. oops. well, I guess we're all humans, right?

here's hoping things are better at your next visit,
frances
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