Pain doc taking meds away said no more for gi patients

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Barbz
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   Posted 9/8/2017 6:21 AM (GMT -6)   
So after taking these for 6 years at 4 a day the doc is taking them away. I'm anxious but kinda relieved at the same time. He is cutting 1 10 mg every 2 weeks does this seem like a good taper? Will I have withdrawal?

straydog
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   Posted 9/8/2017 7:42 AM (GMT -6)   
Barbz, not sure what you take, but you may possibly have a few icky feelings for a few days. Then again you may have no problem, everyone is different. At least he is doing this slowly. If you start having issues, be sure to stay hydrated & use Imodium if needed. The government is now telling drs how to prescribe & what pain meds, this has been going on for several years.

Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Barbz
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Date Joined Jun 2005
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   Posted 9/8/2017 2:13 PM (GMT -6)   
I take 4 10/325 norco a day.

straydog
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   Posted 9/8/2017 2:38 PM (GMT -6)   
Yep, I had a feeling that was what you were taking. People on short acting pain meds have been cut off. If they have scans to document & warrant pain meds they are put on extended release meds. It has become very restrictive. I am surprised that your gi rx'd them. Mine knew I was having bad pain issues & he referred me to a PM dr.. He said I know I have patients in pain, however, I never script pain meds, I refer patients to PM drs.

Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

scifigal2k
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   Posted 9/8/2017 5:12 PM (GMT -6)   
My GI said the same thing as @straydog's - the GI should never be the one to prescribe pain meds. It should be done with pain management specialists. I think that the taper is a good one, but you may want to cut your pill in half each week, so that instead of going down every two weeks, go down by 1/2 every week. It might help ease withdrawals a bit. But either way, you're in for a rough time. You've been on those for a LONG time. I'd ask for a referral to pain management if you find that you're really struggling.
"For this thing I besought the Lord thrice that it depart from me. He said, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities; I take pleasure in infirmities, reproaches, necessities, persecutions, distresses, for when I am weak, then am I strong" 2 Cor

NiceCupOfTea
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   Posted 9/8/2017 5:51 PM (GMT -6)   
Is the 10 oxycodone?

I somehow managed to end up on a really high dose of oxycodone for a couple of months after my first surgery. Not sure that anyone knew what they were doing tbh. Long story short, I did try to taper and still went through hell for a few weeks - the first week was the worst. My skin was constantly alternating between hot and cold, and it was mad sensitive/prickly all over. I had the worst sense of restlessness/agitation ever; I literally couldn't keep still and didn't get a wink of sleep at nights. After that first week, everything became more bearable, apart from my skin - the sensitivity lasted for months, unfortunately. Even now, 4 years on, I still have a very slight, residual sensitivity, which is occasionally annoying but still 99% better than what it was at its height.

I doubt you'll get the skin issue! I was about 4x the dose of oxy that you were and obviously it buggered up my skin - possibly surgery had something to do with that as well (damaging nerve endings perhaps). But yeah, I don't think it will be a fun few weeks for you in all honesty. Just remember, it will pass: it's not permanent.
Dx Crohn's in June 2000. (Yay skull)
Tried: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, diets.
1st surgery 20/2/13 - subtotal colectomy with end ileostomy.
2nd surgery 10/7/15 - ileorectal anastomosis. Stoma reversed and ileum connected to the rectum.
Current status: Chronic flare. Do I have any other kind?
Current meds: 50mg 6MP; Entyvio (started 3/11/16)

Barbz
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Date Joined Jun 2005
Total Posts : 885
   Posted 9/8/2017 8:28 PM (GMT -6)   
I am going to pm. It's not my gi that gave these. I'm gonna do .5 mg every 5 days

Barbz
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   Posted 9/8/2017 8:30 PM (GMT -6)   
Nice cup of tea how did you taper? How much was you taking? Mine is hydrocodone not oxy

NiceCupOfTea
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Date Joined Jan 2010
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   Posted 9/8/2017 8:40 PM (GMT -6)   
Oh sorry. I made a bit of an assumption there :/ I think hydrocodone is milder than oxy, but not 100% sure. I was taking 40mg oxy 4x a day. Can't remember exactly how I did it, but given how I suffered, I wouldn't recommend it anyway - I probably went too fast.

Edit: Way, way too fast apparently. is .5mg half of 1mg or 10mg?

Barbz
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Date Joined Jun 2005
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   Posted 9/8/2017 8:43 PM (GMT -6)   
10 mg

Myrne
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   Posted 9/10/2017 7:44 PM (GMT -6)   
Hi Barbz - you are on a fairly lie dose, so that's a plus. I have weaned off much larger doses of oxy, but only after a few months use. I think if you wean slow enough it should be fairly painless. 10mg every 2 weeks seems reasonable. The last 5-10 mg will be the worst I bet. It may be hard to sleep for a while, but maybe you can get a small script for a sleeping pill or xanax to use for a couple weeks when you're completely or almost weaned.

Did your doctor say why he was cutting you off? Are you worried about the pain? I am taking pain meds daily right now, but was only planning on taking them for one month. My biggest fear though is not having them available when I REALLY need them, especially with how strict things have become with the heroin epidemic. I personally haven't had trouble when in a bad flare, but hear more and more about others not being able to obtain legit pain meds. Having a chronic illness with significant pain associated at times, this scares me.

I hope this taper goes well for you and you feel even better in the end!!

Barbz
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Date Joined Jun 2005
Total Posts : 885
   Posted 9/10/2017 8:24 PM (GMT -6)   
Me to ty. I wish they would just do another surgery to get the rest of this disease out and I would feel good again

straydog
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Date Joined Feb 2003
Total Posts : 14976
   Posted 9/11/2017 7:34 AM (GMT -6)   
Barbz, with the war on prescription narcotics by the government millions of folks have been cut off. We can thank the CDC, DEA & NIH for this dilemma for chronic pain people. Believe me drs are listening because of the prescription monitoring program in place drs are under a microscope. They know what every dr rx's to a patient & they have it on record who the patient is & what they take & how much a month. There is a good chance your dr may have been flagged based on your dx. Believe me I am waiting on the other shoe to drop on me even though my pain meds are not because of crohns. I recently had to do scans to warrant the need for pain meds.

I do not for a moment believe this will get any better. It will eventually get to the point narcotics will only be rx's to end of life patients. People with various cancers have been reduced to less adequate pain relief. How sick is that.

The CDC has has the pharmaceutical companies by the throat. Some pain meds are no longer being made & they are producing fewer quantities.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Myrne
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Date Joined Jun 2009
Total Posts : 585
   Posted 9/11/2017 11:58 AM (GMT -6)   
It's a scary time to have a chronic illness with significant pain associated at times! I have found that they are very generous with the pain meds whenever I am admitted to the hospital for an exacerbation, but for some reason never willing to maintain that pain relief at home. At least there is always the option to go to the ER when the pain gets really bad. Every time I have done this they do a CT scan, see how horrible my insides are, and admit me for pain relief and IV nutrition. Sounds like this may not be an easy option as the pain med restrictions get stricter. I actually had a med student mention getting me some Tylenol when I was in the ER this last time. Luckily the actual doctor came in after and ordered more substantial pain relief, but it left me wondering what they are teaching current students about pain relief these days.
33 year old female with a husband and son.
Diagnosed with CD in January of 2005.
Resection 9/11/13
Started Stelara in June. Currently in a bad flare and off work and on TPN, Fentanyl Patch, and Oxycodone. Hoping to be off these and back to work by October.
Past Meds: 6MP, Humira, Remicade, & Cimzia.

straydog
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Date Joined Feb 2003
Total Posts : 14976
   Posted 9/11/2017 12:24 PM (GMT -6)   
Myrne, you must live in a state that is more liberal than most. Many states a couple of years ago refuse to give narcotics to a chronic pain patient. Patient try to going out of state for meds & they may or may not be able to get medication. The current prescribing guidelines are aimed at GP's rxing pain meds longer than 7 days for acute pain. They do not want GP's rxing meds to a chronic pain patient. These are gudelines, not rules, but the drs are so afraid of being flagged they are going by the CDC's recommended guidelines. Also, several states have made their own changes & guidelines & have implemented them.

PM dr are told to get their chronic pain patients on a long acting medication instead of short acting. They seem to think this will stop the abuse & diversion problems. But, they also have a cap of how many milligrams per day. Complete morons making these decisions. But, in all fairness this did not just happen, this has been going on for several years. Some drs attempted to ignore them & they ended up being flagged & either stopped rxing or changed their rxing practice to conform to keep from losing their license. That is the major fear, losing their license.

I would not want to be a young pain patient for sure. I am 64 yrs old & glad of it for this very reason.

I am in Tx & they will not give narcotics to anyone that shows up in ER complaining of pain. If the patient is rx'd anything it is low dose Tramadol, lol. I am serious when I say this. Several years ago I fell & broke my arm, I was offered zero.

I can tell you what students are being taught, no narcotics for patients. Unless a person is admitted for in-patient care with severe pain they will not be given narcotics. Go to the CDC's website & enlighten yourself.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Myrne
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Date Joined Jun 2009
Total Posts : 585
   Posted 9/11/2017 12:46 PM (GMT -6)   
I am in NY, not sure if it is more liberal here or not. To be honest, the last time I needed narcotic pain meds was 4 years ago for about 2 months before surgery and then one month after, I never had trouble getting these meds from my surgeon, she seemed more than willing to keep me on longer than I wanted. I weaned myself about 2 weeks after the surgery. I did notice that the pharmacy was very strict - there were times my surgeon would verbally tell me to take a higher dose and I would then run into trouble with the pharmacy when it looked like I was asking for a refill too soon - this was remedied by a phone call to the surgeon though.

More recently, I was hospitalized for a Crohn's flare and doctors recommended a pain specialist. When I mentioned this to my general practitioner for a referral she said she could just provide them to me. I have severe refractory Crohn's Disease, so I don't know if this diagnosis carries any weight, but I am guessing not if cancer patients are even being denied.

Seems so inhumane to deny pain relief to people with legit observable pain, especially since these restrictions will have no actual impact on illegal drug use. My hope, besides a cure for Crohn's, is more effective and safe pain relief in the near future. As of right not, opiates are what I find to offer the most relief, but I am willing to try almost anything.
33 year old female with a husband and son.
Diagnosed with CD in January of 2005.
Resection 9/11/13
Started Stelara in June. Currently in a bad flare and off work and on TPN, Fentanyl Patch, and Oxycodone. Hoping to be off these and back to work by October.
Past Meds: 6MP, Humira, Remicade, & Cimzia.

NiceCupOfTea
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Date Joined Jan 2010
Total Posts : 9921
   Posted 9/11/2017 12:55 PM (GMT -6)   
It doesn't help anyone here, I know, but the situation isn't much better in the UK. When my epidural came out the 2nd night after I'd had my first surgery (open colectomy with ileostomy), all they would offer me for pain relief at first was paracetamol. It took several hours before I could get anyone to give me morphine and, needless to say, I was in agony the entire time.

Doctors are incredibly reluctant to prescribe painkillers stronger than paracetamol (literally useless), sleeping pills or tranquilisers. I'm lucky that a) my pain isn't too severe at the moment and b) my dad gives me codeine that he doesn't use. But eventually that source will stop and god knows what will happen after that.

The drugs "war" is absolute insanity. It's insane on every level you can think of.
Dx Crohn's in June 2000. (Yay skull)
Tried: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, diets.
1st surgery 20/2/13 - subtotal colectomy with end ileostomy.
2nd surgery 10/7/15 - ileorectal anastomosis. Stoma reversed and ileum connected to the rectum.
Current status: Chronic flare. Do I have any other kind?
Current meds: 50mg 6MP; Entyvio (started 3/11/16)

Myrne
Veteran Member


Date Joined Jun 2009
Total Posts : 585
   Posted 9/11/2017 1:09 PM (GMT -6)   
Oh my gosh, NCOT. I was on a PCA pump with morphine every 4 minutes for a week following my open resection and stricturplasty and was STILL in pain (no epidural though). That is terrifying. I am no wimp, I swear, but continuous pain that has no foreseeable end (unlike acute pain from a cut or break, etc.) will wear you down until you are no longer functioning. It is so barbaric to be expected to just lie in bed day in and out and deal with it when there are effective medications available. And you're right, the war on drugs is feckless. I think it's now obvious that dramatic and punitive reactions are not effective. But don't get me started on that . . .
33 year old female with a husband and son.
Diagnosed with CD in January of 2005.
Resection 9/11/13
Started Stelara in June. Currently in a bad flare and off work and on TPN, Fentanyl Patch, and Oxycodone. Hoping to be off these and back to work by October.
Past Meds: 6MP, Humira, Remicade, & Cimzia.

NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 9921
   Posted 9/11/2017 1:32 PM (GMT -6)   
Myrne - After my second surgery (which was also open abdominal surgery), I elected for a morphine pump instead of an epidural - the epidural had worked like a charm last time, but there was no way I was willing to risk the needle coming out again. Anyway I was taken off the morphine pump by the 2nd or 3rd day (I forget which, but it wasn't very long) and moved onto Tramadol. That really wasn't quite strong enough to control the pain, especially overnight, when the last dose of the day was at 10pm and the next dose wasn't until 7-8am. Sometimes the pain nurses were late however, and I was in freaking agony by the time by the time they got to me.

That whole hospital stay was a nightmare in fact (I developed an ileus, which I wouldn't wish upon my worst enemy).

Don't get me started on that either. I might get modded.... =/
Dx Crohn's in June 2000. (Yay skull)
Tried: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, diets.
1st surgery 20/2/13 - subtotal colectomy with end ileostomy.
2nd surgery 10/7/15 - ileorectal anastomosis. Stoma reversed and ileum connected to the rectum.
Current status: Chronic flare. Do I have any other kind?
Current meds: 50mg 6MP; Entyvio (started 3/11/16)

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 14976
   Posted 9/11/2017 1:49 PM (GMT -6)   
Myrne, the comment by the drs at the hospital to see a PM dr was a warning of how the current environment is with narcotics. Your GP knew your medical history & was confident in providing for you. This is rare so count yourself very lucky in that regard. Over a year the CDC notified surgeons that IF they intended to rx narcotics for post-op pain to use the minimal amount no longer than 10 days.

Look at the media hype when a celebrity OD's, they will have a plethora of drugs in their system. If one is a narcotic they are over that particular drug, & never mind the drugs were obtained illegally. Just another nail in the coffin for legitimate people. Our government people all know someone or a relative that OD on drugs so they have an agenda to push things through too.

Once again, I am glad that I am older because young people are not going to get much help in the pain relief area.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Barbz
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Date Joined Jun 2005
Total Posts : 885
   Posted 9/12/2017 6:42 AM (GMT -6)   
It just bothers me because I have severe aggressive crohns and without even talking to me about this he just starts cutting me from 4 to 3 and that was fine and my next month he cut to 2 and I just asked him why and he said gi patients are not aloud no more opioid pain meds. I said well what the hell are gi patients supposed to do? But this pain doc also has started treating hormones and weight loss. He got me the mmj card and no longer doing that for patients. But this is what get me I have done everything he has told me to do with therapy for arthritis and all and he is cutting me off but my sister sees him and says her hip hurts and she gets meds but she is also letting them give her hormone shots. I don't let them give me testosterone shots. I'm gonna be 50 years old and female

Myrne
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Date Joined Jun 2009
Total Posts : 585
   Posted 9/12/2017 7:22 AM (GMT -6)   
I would look for a different doctor. What would hormone shots do for Crohn's Disease?? Sounds like what straydog said, maybe he is being pressured by outside sources. I also think it is unprofessional to start weaning you off with no real explanation. As far as I can see, there is no professional mandate or law stating GI patients shouldn't receive pain medication. There are very painful GI conditions (not Crohn's) where the main line of treatment is pain management. I suggest you ask you GP for a referral to another pain management doctor. You have a documented disease with pain and a history of taking pain medication responsibly, so I think you should be able to find a pain doctor willing to take you on.
33 year old female with a husband and son.
Diagnosed with CD in January of 2005.
Resection 9/11/13
Started Stelara in June. Currently in a bad flare and off work and on TPN, Fentanyl Patch, and Oxycodone. Hoping to be off these and back to work by October.
Past Meds: 6MP, Humira, Remicade, & Cimzia.

Barbz
Veteran Member


Date Joined Jun 2005
Total Posts : 885
   Posted 9/12/2017 9:43 AM (GMT -6)   
How do you like stelara? It worked at first for me then Linda stopped. I also noticed I get tremors from it along with bad fatigue

Barbz
Veteran Member


Date Joined Jun 2005
Total Posts : 885
   Posted 9/18/2017 3:06 PM (GMT -6)   
Update I'm on my 2nd drop down and doing ok. My legs hurt and restless but ok. The one thing getting me is the diahrea and down 7 pounds. It's getting to my crohns but hopefully that will stop.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 14976
   Posted 9/19/2017 12:47 PM (GMT -6)   
Barbz, take Imodium for the diarrhea but keep drinking plenty of fluids to stay hydrated. This will help slow it down.

Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums
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