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Crohn's Disease Forum » Treatment » Painkillers arn't working. - Any advice from people that have went down the painkiller dependency road.


 
08-03-2013, 12:44 PM   #1
Dereksmagic
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Painkillers arn't working. - Any advice from people that have went down the painkiller dependency road.

I dont know if I should up my dose, or stay where im at, or keep taking more, or try and detox. I need some advice.

Right now im seeing a pain specialist, and I am on Fentenyl 50mg/hr patch, and 10/325 Percocets on a limit of (6) per day.

When I was in the hospital back in Nov 2012, They had me 2cc or mg (dunno, but it was a double dose) of duilatid, every 4 hours, with (2) 7.5/325 percocets in between, for the entire month I was in there... Ever sinse then, I have been on percocets.

They arnt working for me anymore. To really get any relief, I have to take 3-4 at a time.

My pain specialist is telling me that it is unwise to up my dose or switch to something stronger because if I end up in the hospital and they need to knock me out or give me painkillers for surgery it wont work.

I went in for a colonoscopy, and they tried to knock me out, Not under anesthesia, but General Anesthetic? - They tried to knock me out by IV Fentenyl (750mg) and it didn't put me to sleep because I have such a high tolerance.

My question is, to the people that have been on painkillers, Isn't there other options? I know there are MANY MANY people around the world that are taking Oxycotten, or even morphine tabs, and obviously their doctors arnt worried about if they end up in the hospital and wont be able to get something stronger for surgery or anesthesia.

I dont know if my doctor is just being difficult, or what, but my scipt isnt working, I know I can get something stronger so I dont need to take 4 pills at a time to get relief. But I dont want to end up in the hospital and not be able to be worked on cus they cant give me something im not tolerant too.

I dont know what to do. I could just suck it up, go though withdrawal, deal with the pain, and try and lose some tolerance so they work better. I dunno.

Also I know that detox is going to suck, along with the withdrawl. I am definitely dependent on these painkillers.
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Colitis/Crohns
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Uceris (Replaced my Prednisone)
Chlordiazepoxide (Anti-cramping meds)
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Pain
Percocets 10/325 x6
Fentenyl Patch 50mg/hr
Methocarbamol (Muscle relaxers for my spasms)

Supps
Multi Vitamin Gummys
Iron Supplement
Hair, Skin and Nails (My hair is falling out!)
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08-03-2013, 01:06 PM   #2
afidz
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Hello
Why are you on such high doses of pain meds? Is it Crohn's related?
A lot of times with addiction, part of the pain is the addiction itself. Your brain is sending signals that your in pain to get its fix. Not to discredit any pain your in what so ever, I don't doubt that you are in pain, but just saying that that could be a possibilty.
I remember seeing a commercial, although now that I think about it I can't remember the name of the orginazation, but there is one soley for opiate addiction, and if I remember correctly you don't have to be checked in as an in-patient. If you are going to try to get off pain killers, don't do it by yourself, you are more likely to go back on them.
As for how to deal with Crohn's pain, that can be tricky. I saw that your on a muscle relaxer. Are the spasms like a crohn's cramp or is it for something else? I use to take Bentyl, which is anti-spasmodic, I don't think its a narcotic, haven't been able to find anything that says it is, but it might be a better option. If you can describe your pain, I might be able to give you advice on how to remedy it.
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08-03-2013, 06:07 PM   #3
Jennifer
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Hi Dereksmagic, I'm sorry to hear that you've been in so much pain. I'm also curious as to why you're in that much pain/what its from. I'm sure there has to be another way besides having to keep upping pain meds. I'm going to tag Jim (POPS) into this thread to see if he has any advice for you.

I see that you're in California. Have you considered medical marijuana for the pain? We have a subforum for that here: http://www.crohnsforum.com/forumdisplay.php?f=63
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Diagnosis: Crohn's in 1991 at age 9
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Meds for CD: 6MP 50mg
Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel, Tylenol 3, Omeprazole 20mg 2/day, Klonopin 1mg 2/day (anxiety), Restoril 15mg (insomnia), Claritin 20mg
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 17 years and counting.
08-03-2013, 06:24 PM   #4
nogutsnoglory
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I'm not responding to pain medication either and feel very frustrated like you. I spoke with a pain specialist and they have tried different things. I really don't understand why nothing seems to work. Have you looked into complimentary therapies like acupuncture or acupressure?

"Acupuncture has long been used in Traditional Chinese Medicine to treat inflammatory bowel disease. One study in Germany found that acupuncture and moxibustion were effective specifically for treating Crohn's disease. Acupuncturists treat people with inflammatory bowel disease based on an individualized assessment of the excesses and deficiencies of qi located in various meridians. Moxibustion (a technique in which the herb mugwort is burned over specific acupuncture points) is sometimes used because it is thought by some to reach deeper into the body than using needles alone."

Source: Crohn's disease | University of Maryland Medical Center http://umm.edu/health/medical/altmed...#ixzz2ax3L1QGy
08-03-2013, 08:06 PM   #5
Dereksmagic
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My pain specialist said I had to stop smoking pot. I was smoking and have my license. And even found a place that has a high cbd strain of 15%. Had to stop.

The pain comes from cramping and crazy upper, mid, and lower stomach pains. Along with back and shoulder spasms. Also I have neck pain from something unrelated.
08-03-2013, 08:57 PM   #6
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What's causing the stomach pains? It's be best to treat the cause rather than just the symptoms. What's being done to treat the cause of your pain?

I'm not aware of marijuana interacting with pain meds (opiates) negatively. A 2011 study showed that they decrease pain better when used together. http://www.ucsf.edu/news/2011/12/110...e-pain-opiates
08-03-2013, 09:33 PM   #7
Dereksmagic
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Anytime I eat, its fallowed by pain. Anytime I poop. Its painful. And then ill randomly get cramps and wondering pain in my guy. My gi says. "you have crohns, which causes inflammation, which causes pain.once we get you into remission the pain should subside."

So not really sure what else I can do to treat the "cause".
08-03-2013, 09:56 PM   #8
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How long have you been on your current medications? The Balasalazide, Uceris, and Humira? What I'm wondering is if your GI is treating your IBD properly. Yes inflammation can cause pain but each individual needs the right combination of medications to get it under control. It may also be possible that there could be scar tissue which will also cause pain but medication wont help that at all, only surgery can (whether by removing or a strictureplasty).

Since you're currently in a flare what sort of diet are you following to help reduce your symptoms (like the pain)? Eating softer and smaller meals often help along with foods that don't irritate the gut further (nothing fatty, salty or spicy etc, basically low residue).
08-04-2013, 02:28 PM   #9
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Anytime I eat, its fallowed by pain. Anytime I poop. Its painful. And then ill randomly get cramps and wondering pain in my guy. My gi says. "you have crohns, which causes inflammation, which causes pain.once we get you into remission the pain should subside."

So not really sure what else I can do to treat the "cause".
It is true that sometimes the cause of pain just can't be addressed, or that finding the cause of the pain and figuring out how to treat it takes so long that you really need pain relief in the mean time. I often hear a lot about just treating the symptoms being like putting a "band aid" on a problem, with the implication that treating symptoms is a bad thing, but in reality treating symptoms can be the best or only option; if it's proving difficult to find the cause, there is nothing wrong with treating the symptoms.

That said, the only way to reduce tolerance is to take breaks from medications. I'm not sure quite how strong the medications you are on are, but I've been taking codeine for a long time, and I know I have to take a much larger dose now to get the same effects that I used to be able to get from a much smaller amount, although I can still definitely feel a benefit when I take it. What I tend to do is give myself periodic breaks where I stop the medication in order to lower my tolerance. I don't think the tolerance ever goes completely, but after a couple of weeks off codeine, its effects when I go back on it are greater. Having breaks also allows me to prove to myself, and to my doctors (who prescribe it) that I'm not psychologically addicted. I do get withdrawals if I stop suddenly, but they're not so bad that I give in, and if I reduce gradually I get no negative effects - only the absence of the benefits the codeine gives me.

Obviously this would not be an ideal option for you as I'm not sure of alternatives you could use in the mean time if you took a break to get your tolerance down, but it may be worth asking your doctors if there is any alternative pain medication that you could use short term for this purpose, that perhaps they haven't suggested to you because it's not suitable as a long term solution. I try to plan my breaks from codeine to suit me - if I have an event I want to be well for, I make sure I'm taking it for that. If I'm going to have surgery soon, I take a break before it so that pain relief will be as effective as possible following the surgery.

Sorry I don't have any better ideas, and I'm not sure whether taking breaks would be effective against tolerance with the meds you're taking, but it's the best solution I've found. I don't think I'd want to be on anything stronger than codeine long term. I get morphine after surgeries but I hate how uninhibited it makes me because I talk nonsense and embarrass myself whenever I've had some, so I've never really looked into stronger forms of pain relief.
08-04-2013, 02:47 PM   #10
Dereksmagic
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Taking a break is exactly what I'm thinking. However the withdrawal symptoms are horrible for me. Within hours of not taking anything my legs start to cramp and I feel like all my never endings start to fire off. I get headaches and back pain. i think its def psychological. I just need to stay busy. I had gotten down to 2 a day at one point from being so busy. But now for example today I got up at 9 and its only 12 and iv already taken 4, ill be at 8 by the end of the day easy. On the same token, my inflammation markers are higer and I am getting worse. So I don't think the pain is totally imaginary. In also trying to quit the use of nicotine at the same time so its literally hell lately.

Ill figure something out. I always do.
08-04-2013, 02:51 PM   #11
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On a good note I should be starting remicade and 6mp starting next week. Hopefully it helps quickly. I'd love to finally see what remission is like.
08-04-2013, 03:21 PM   #12
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That's good that your GI is realizing that your current treatment plan isn't working and that they're willing to try something else.

Another thing to keep in mind is that pain killers can cause constipation and that in itself can be really painful. So while it is important for you to find relief while you're waiting for a change in your medications to try and get you into remission that relief can cause more harm than good (as you've noticed unfortunately which is fairly common on the forum actually). I can't think of any options besides cutting the dose down to lower your tolerance as mentioned except for maybe medications they use in cases of pain medication addiction like Suboxone. http://www.drugs.com/suboxone.html My brother in law took that to help him with his pain medication addiction.
08-17-2013, 04:50 AM   #13
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I do the Percocet 5's and use a heating pad. I take warm baths and just soak. I'm afraid of getting a high tolerance to the pain meds. Loratabs started making me sick, so that's why I switched to Percocet. I hate the pain too. I wish medical marijuana was legal where I am. I've heard great things about it.
08-17-2013, 05:30 AM   #14
nogutsnoglory
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No pain killer I have tried does anything for me. I have been on and am on some strong stuff. Honestly sometimes I think hmm did I take my pill today? I can't differentiate between taking or not taking it pain wise. I don't understand why nothing works for me. I have tried so many versions.
08-17-2013, 01:38 PM   #15
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No pain killer I have tried does anything for me. I have been on and am on some strong stuff. Honestly sometimes I think hmm did I take my pill today? I can't differentiate between taking or not taking it pain wise. I don't understand why nothing works for me. I have tried so many versions.
I'm having the opposite experience, the difference when I take some is massive. I was trying to limit my pain killer use today, then got fed up of feeling ill and miserable, took some and now I feel so much better - which is basically what happens on many days. I have this feeling that taking so many and being so reliant on them to be functional is not good, but when it's the only way I can be functional and I feel so much better taking them, why do I feel like it's a bad thing to just keep taking more? I get no side effects. My doctors keep prescribing them even though I order them frequently and they're well aware I go over the recommended limits.
08-19-2013, 01:43 AM   #16
Dereksmagic
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I'm having the opposite experience, the difference when I take some is massive. I was trying to limit my pain killer use today, then got fed up of feeling ill and miserable, took some and now I feel so much better - which is basically what happens on many days. I have this feeling that taking so many and being so reliant on them to be functional is not good, but when it's the only way I can be functional and I feel so much better taking them, why do I feel like it's a bad thing to just keep taking more? I get no side effects. My doctors keep prescribing them even though I order them frequently and they're well aware I go over the recommended limits.
Thats called being addicted bud.. and that feeling ill all day, and then it goes away once you take more pain killers.. well, that "ill" feeling is the onset of withdrawal symptoms.

I deal with it every day. I feel your "pain" in both sense's of the word. Literally.
08-19-2013, 06:36 AM   #17
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Yeah I know. I can at least reassure myself that I'm not keeping it secret - my doctors and family know exactly what I take - and that psychologically I'm not addicted, as I can resist taking them when I have to (before tests and things). I'm not sure how much is withdrawal symptoms and how much is just feeling ill because the painkillers aren't there to stop my various aches and pains.
08-19-2013, 07:09 AM   #18
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I'm not sure if this is helpful.
My brother takes buprenorphine to manage the pain he has from a terrible motorcycle accident.
The drug is generally used to manage heroin dependence, but can also be used for pain management.
It works very well for him and enables him to walk a little rather than being wheelchair bound all the time.
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08-19-2013, 02:16 PM   #19
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[QUOTE=Dereksmagic;686579]My pain specialist said I had to stop smoking pot. I was smoking and have my license. And even found a place that has a high cbd strain of 15%. Had to stop.[QUOTE] Why? I would suggest MM, at least to help withdrawals.

I don't understand why they would tell you you had to stop MM.
08-19-2013, 02:18 PM   #20
Dereksmagic
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To cover his own license. If your a MM user and getting class 2 drugs your considered an addict. Google it.
08-19-2013, 02:18 PM   #21
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and that psychologically I'm not addicted, as I can resist taking them when I have to (before tests and things).
That's not quite true. .. your brain / addiction is giving you a small repreive because your brain knows it is only a small amount of time until you will get the meds in your body again.

Its always harder to quit if you know you can't have anymore.
08-19-2013, 02:19 PM   #22
Dereksmagic
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I plan on smoking again when I stop the treatment.
08-19-2013, 02:48 PM   #23
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To cover his own license. If your a MM user and getting class 2 drugs your considered an addict. Google it.
Oooohhhhh, makes sense in an idiotic-gov't way.
08-20-2013, 06:34 AM   #24
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That's not quite true. .. your brain / addiction is giving you a small repreive because your brain knows it is only a small amount of time until you will get the meds in your body again.

Its always harder to quit if you know you can't have anymore.
I think you might be right here - I'm planning to come off the painkillers soon because I have major surgery coming up and want them to be as effective as possible after the surgery. If I was just coming off them for the sake of it, without this specific purpose in mind, it's possible that then I might just think, what's the point? and start taking them again.

What surprises me is that my doctor keeps handing over the prescriptions. I have one GP who I see regularly and knows me very well, but I order the repeat prescriptions online and when they're delivered to me it's always the name of a different GP from the practice who's signed the prescription slip, and this GP does not know me well at all and there's no interaction between us when allowing each repeat prescription. Do any of you think there's a chance he isn't realising how often I order them? Do you always see your doctor face-to-face when you get a painkiller prescription?
08-20-2013, 07:21 AM   #25
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That's a good question. I've never been on pain meds for my crohns. . . luckily.
08-20-2013, 02:46 PM   #26
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UnXmas some areas require you to see your doctor face to face if you want your prescription for narcotics or Benzodiazepines refilled to help stop the abuse of these medications (my county being one of them). Even some pharmacies have stopped refilling these prescriptions to help stop abuse as well (that's not just my county either, a friend of mine in another state said its happening there too). Also if the pain etc is not caused by a chronic health problem with no cure then most general practitioners in my area are not allowed to prescribe them and you'll be referred to pain management where many insurances don't cover. That's on top of having the only pharmacy that accepts your insurance not be allowed to fill these prescriptions making you have to pay for everything out of pocket (happened to my husband after an injury).

My health problem is chronic with no cure and the treatment has not stopped the pain so my GP still fills my prescription for Tylenol 3 (which is pretty mild) yet they are not allowed to fill prescriptions when the pharmacy asks for a refill. I still have to come and see him face to face to get pain meds or benzos filled because its now required by law.
08-20-2013, 02:49 PM   #27
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Like Jennifer I need to see my doctor face to face for each refill. They also can't call in my prescription. I need to hand them a special state prescription for the medication. Doctors have no problem handing out pain killers to me like candy though. It's possible your practice knows you need the meds and so the other doctor signs off even though they don't know you.
08-21-2013, 05:28 AM   #28
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I understand. I've taken some strong stuff and had no relief. I shock the drs because I'm so small and the pain med have no effect on me I don't get loopy or anything maybe at times I get more energy. I have noticed tramadol really helps me I think way more than any other pain med I have tried..
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08-21-2013, 09:42 AM   #29
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Thanks Maria I will ask for Tramadol. I think they are reluctant to give too much that might damage the liver.
08-21-2013, 10:52 AM   #30
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I understand. I've taken some strong stuff and had no relief. I shock the drs because I'm so small and the pain med have no effect on me I don't get loopy or anything maybe at times I get more energy. I have noticed tramadol really helps me I think way more than any other pain med I have tried..
This is me too. I'm 5'2" and 130lbs. When I get a filling i need double novacaine. when i got a root canal they had to shoot me with novacaine 3 times and then when that didnt work they put some kind of nerve killing gel in the whole and covered it with a temporary filling and had me come back the next day to do the procedure.

After my c-section and during my big HS flares Percocet did absolutely nothing. I needed dilaudid and tylenol and even that barely touched the HS pain.

I hate going to new doctors, even though i rarely take pain meds, i feel like they think I'm a junky.

I'm just sooooo grateful that the epidural worked perfectly. LOL

I'm going to research tramadol, thanks.
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