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Posted 3/31/2010 2:53 PM (GMT 0)
chatter you might want to think about your thyriod, if you have not already had it checked out.
Posted 3/31/2010 11:21 PM (GMT 0)
hi there,
I am a big fan of percocet .. LOL well that came out wrong but ykwim..
Basically, keep in mind:
1) pain levels and relief and pill preferences are different for everyone
2) its not a good idea to request something in particular
3) best to describe your pain and dr will try something

Now, if they try to give you something weak like tylenol 3 or straight codeine,you could say something like it doesn't even touch the pain. If the dr is anal or relatively new to you, you m,ight be better off pocketing the rx, then re-scheduling in a few days to get something stronger. (telling them you gave it a try) If you are going to do that, bring the scrip with you so he can see you haven't used most of it...

If something makes you sleepy chances are the dose is to high. eg when I have surgery they give me dilaudid and ikt helps with the pain. But if I take it for regular breakthru pain I fall asleep. LOL


Personally for me on "regular" days, tylenol 3 is a joke AND makes me constipated which makes the ostomoy bag fall off (always a bonus)
codeine same thing
around here no-one seems to ever give vicodin or hydrocodone, I don't know why but I've never had it nor heard of anyone who has.
Percocet is my favorite- I find 1 perfect, not sleepy and joint and fistula pain mostly gone.
I'm allergic to morphine.
Dilaudid is good after surgery like i say but I find it pretty strong.
They tend not to give oxy anymore due to the street value and addicts, and just up percocets if need be.

Be careful, but that said I believe we shouldn't be writhing in pain either...
I'm not shy to admit I take perc daily, but usually only 1 or 2.
Posted 4/2/2010 3:09 AM (GMT 0)
If the type of pain you're experiencing is abdominal cramping pain (very typical for a Crohnie), then there is a very useful non-narcotic non-addictive pain med, hyoscine-N-butylbromide. It's actually an anti-spasmotic drug.

Outside the USA, it's sold under the brand name Buscopan:

www.buscopan.com

For some reason, seems to be banned in the USA, but there are near equivalents though much more expensive. Look for Levsin:

http://www.rxlist.com/levsin-drug.htm

This drug can be taken orally, as a sub-lingual (dissolve pill under the tongue), or an injection. The injected form is most effective, and the only realistic way to take it if you're under a painful obstruction attack (ileus). Where I live, Taiwan, injectable Buscopan is sold across the counter for about US$1/ampule. In the USA, I asked and was told that injectable Levsin is sold in vials at US$150 - outrageous! - and does require a prescription. The pill form was much cheaper.

This is not a drug for daily use, as it can lead to side-effects, most worrisome is glaucoma. Buscopan is suitable for occasional use for when you're in severe pain. It was a life saver for me before I had my last bowel resection.

cheers,
Robert
Posted 4/2/2010 3:21 AM (GMT 0)
Well I had my dr appt today. He prescribed me levsin (which isnt helping ) and scheduled me for a colonoscopy on the 21st. Sometimes I feel like nothing is going to help.
Posted 4/2/2010 3:34 AM (GMT 0)
^^ Sissy I really feel for you..I was having this same problem (pain) and im only 20 years old but finally found a liberal doc that understands everyone has diff types of crohns pain...first appt was 90 percoset 10's for the month..second is coming soon and im going to ask for roxicodone since this has the same main ingrediant but without the tyleonol..

Dont take these BS meds for pain if it is servere and chronic..ask about narcotics..they help.."oooo they are addcting" people ruin it for us and they arent going to ruin it for me...I dont care about the future I care about now soo Ill take my oxy and capitalize on not having crohns pain..

Sorry sounded like a rant...but I really feel for you..let me know if you have any questions or anything

Posted 4/2/2010 4:16 AM (GMT 0)
a question.... i take pain killers only wen i really need to but i was wondering do these paIN meds cause us to flare even more. just something my GI said that it does. have u heard it before????
Posted 4/2/2010 5:25 AM (GMT 0)
That's new to me and I doubt it. Perhaps one of our medically trained people could answere that? Pmedic?
Posted 4/2/2010 10:35 AM (GMT 0)

sissy22 said...
Well I had my dr appt today. He prescribed me levsin (which isnt helping ) and scheduled me for a colonoscopy on the 21st. Sometimes I feel like nothing is going to help.

I probably should have added that I didn't find oral Levsin to be very effective. It helped a little, I think the sublingual was better than the swallowed pills because it gets absorbed faster without going through the stomach. But injectable Buscopan was VERY effective. Unfortunately, it was short-lived relief (maybe two hours).

If it's not working, you could call the doctor and get a prescription over the phone for something stronger. I did that once in the States. It's certainly cheaper and less troublesome that making another appointment.

best regards,
Robert
Posted 4/2/2010 11:12 AM (GMT 0)
I doubt pain meds could make you flare more, I think most doctors concern would be that the meds might mask symptoms or worsening symptoms.
Posted 4/2/2010 3:39 PM (GMT 0)
Most GI's are adverse to giving out pain meds. I get all my pain meds from my family doc, never from my GI. GI only gives out Bentyl, and Levsin type drugs. But my family doc understands my chronic pain, and prescribes my pain meds. I too take Percoset daily, but I only take 1/2 tab at a time as that works well for me.
Posted 4/2/2010 4:54 PM (GMT 0)
My doctors have always told me that narcotics slow down your intestines and that I shouldn't take them. Even when I was in the hospital they wouldn't even give me pain meds to sleep. My pediatric doc understood my high tolerance for meds and would let me get pain meds. But now that im an "adult" ( I still refuse to believe that lol ) I get nothing. I don't know if my doctors think I'm going to get addicted or what. I am just really tired of having to fight for help. My doctor scheduled me for a colonoscopy to see if I have swelling in my trouble spots, right after he explained to me that my trouble spots were swollen? So I guess maybe he is just confirming what he already knows? It would be very nice to have a GI that had crohns. I think thats the only way a doctor could really understand the pain.

Sorry about the ranting, just really frustrated.

Posted 4/2/2010 5:53 PM (GMT 0)
You know, it's really funny, when they first thought I had a diverticulitis attack, they sent me home with pain meds. I think if I asked for them now, they wouldn't give them to me. I couldn't believe how much the loritab helped the pain (which turned out to be colitis, not diverticulitis). I guess they worry because crohn's is chronic and they don't want people to get dependent, but heck, living in pain is horrible!! I guess you need to get a doc that you have a good relationship with and understands. Of course, if they could cure or even fix most of these problems, people wouldn't need the pain meds. It really sucks. But again, it is funny that with one thing, they send you out of the hospital with pain meds, even if you don't ask for them and then when you ask for them, they hesitate to give them to you.
Posted 4/3/2010 7:03 AM (GMT 0)
Can you contact your pediatric Dr and ask him to recommend a Dr. who would be more reasonable with you?
Posted 4/5/2010 6:09 AM (GMT 0)
tsitodawg I completely agree with your post.
Posted 4/5/2010 2:14 PM (GMT 0)
Sissy-

I just want to point out that my GI has Crohns and he still will NOT give pain meds.  Dr. David Binion, he's an amazing man.  Pain meds slow down your GI tract and could cause even more issues then before.  As for not giving you pain meds in the hospital, I'm really not sure why they didn't, seems odd to me.

The way I see it, I will always have weird, unusual, and sometimes horrible pains my entire life...I personally would rather deal with that then possibly having a drug addiction from all the pain meds.  I've cried to my GI before that I needed pain meds so badly.  His response...if the pain is that bad, then we need to get you into the hospital and see what needs fixed.  After he said that I started to  really think about my pain, it was the same pain I had been having for years...I wasn't crying then, so why now?  I think it's the frustration that eventually gets to you.  Don't get me wrong I have had days where I just wish I would die because my pain has been so bad.  In the long run though, I don't think doctors aren't giving out pain meds to be monsters, but rather to help us even if we don't understand.  However, if you disagree maybe you should seek out another GI, or go to a Pain Clinic where they can monitor you better.

Posted 4/5/2010 2:33 PM (GMT 0)
The only pain medication I take is ibuprofen. Yeah I know. Ibuprofen is bad for you, etc. etc. but it's also the only thing which works - paracetamol is useless. However I set limits. I refuse to take it for Crohn's pain or low-grade fevers, but will take it for headaches or period pains. That means I can go for weeks, occasionally months, at a time without taking anything but then have a week where I'm taking it almost every day. The headaches are ultra-annoying - they're not really headaches, but an ache behind the eye(s) which ranges from being mild but extremely irritating to something which is excruciating.

Any Crohn's pain I can currently stand. God only knows what I'd do if there came a time I couldn't, because the doctors here won't prescribe sleeping pills, let alone pain killers.
Posted 4/5/2010 4:02 PM (GMT 0)
I would like to stipulate that I do not take my pain meds for Crohns pains. I suffer with chronic pain all the time from my osteoarthritis and fibromyalgia. Without these meds I would not be as functional as I am. I am currently on the schedule for a total knee replacement soon, and I am looking forward to it to get some relief from some of my pain. JMHO
Posted 4/6/2010 12:59 AM (GMT 0)
tsito I assume your response was to me?

I'm not judgemental, I said its how I look at it.  I've been through many many surgeries in the short time I've been diagnosed, I know about pain just as much as the next person.  You stated that the majority of your pain is from arthritis, this is what I'm trying to point out.  The majority (not all) of the people on pain meds have other conditions other then Crohns. Me? I'm in my 20's and so far I don't have any other issuses that my Crohns is causing, yet. I say yet because I know eventually this disease will eat away at my body, and when that happens I'm sure I'll have a different opinion about the whole thing.  I never said there is no need for long term use either.  I said that me personally...I'd rather be in pain then possibly develop an addiction, I'm far too young to go through that..and addiction can happen to ANYONE. I had one shot of dilaudid in the hospital and I wanted more, not for the pain but because I loved the feeling of it.  Actually the majority of people who end up addicted to pain meds are ones who had legit pain and were prescribed it.  I'm not saying if you take pain meds you're an addict, or that you will become one if you take them, I just don't want to take the chance.  All I'm stating is my opinion, I'm not judging anyone.

Posted 4/6/2010 2:48 AM (GMT 0)
Don't take my words personally, sorry it has been a long and bad day. Taking pain medication is a very personal decision that should never be taken lightly and should be tailored to one's personal situation and family history. Please don't make me feel old for just turning 30.lol I know that there is not much difference in our age but the arthritis will come to most of us and it is not another condition because it is part of the disease. The arthritis started hitting me around 27 years old and it is part of the inflammatory process in the joints. There are many of us that have external manifestations along with the typical bowel damage that Crohn's is so famous for. The sad thing is that when your are in true pain the medication stops have a euphoric feeling and now is similar to that of tylenol. It just takes away enough of the pain to make you be able to function.
When you start taking pain medication for the feeling and now the feeling that it takes away, you should talk to your doctor immediately. You are right that many of those addicted did start with legitimate pain or conditions, but addiction is a choice to begin with and when abused it is not being used as prescribed. That is why you must have a docotr that closely monitors you and at the first signs of addiction, they should be able to help recognize it and stop it. A doctor should be able to recognize whether or not addictive behaviors are part of your personality and what type of medicine or dosage would be best for you.
Posted 4/6/2010 3:14 AM (GMT 0)
Personally, I don't take any pain meds - there's nothing wrong with me. But I am grateful for them for my husband. I know he's at least not suffering as much, when he has those pain meds, when he's flaring. He does not abuse them, he's very conscious that he is taking them, and consistently reduces the dosages as his pain gets more manageable. My husband has been on dilaudid for 45 days in the hospital, on vicodin, percocet and loratab for pain management. Right now, he isn't on any pain meds either, because he isn't having a lot of pain. I can truthfully say I don't think my husband will ever abuse those drugs. He is very very aware that he's on these drugs, and he is the first one to try to get off them, as his condition improves.

I think unfortunately, for disease like crohn's and arthritis, where there isn't a cure, and therapy doesn't always lead to remission, pain management is a must. And therefore, the possibility of addiction is just one of the side effects that a person with Crohn's has to face. If you have a decent support structure, and make a conscious effort to not abuse the pain meds, it is likely that you will not become addicted to the pain meds. But yes, it is a possibility.

The goal is to live a productive life, and sometimes for people with Crohn's, that means using opiates for pain management. It's just a reality I think that we must all accept, and do our best to only take pain meds when needed, and in doses that work to just relieve the pain without the euphoria.
Posted 4/6/2010 11:24 PM (GMT 0)
Well, I have had days in the past when my pain got so bad I actually prayed that I would die.
Personally, if you think you are going to need pain meds, I'd go find a reputable Pain Clinic. If they are genuine, they will request your records, & run some of their own tests.
They will help you find a treatment regime that suits you.

Sincerely,
Matthew
Posted 4/7/2010 12:02 AM (GMT 0)
I only take pain meds when needed, as I think most of us do. I will start out with tylenol and if that doesn't help I wait till they have worn off and then move to lortab. When I get my horrible stomach pain nothing helps that and I know it will wear off before I could even think about getting to the hospital. So I just deal with it, it isn't fun and I hate it, but nothing will work that quickly. My stomach hurts pretty much 24/7, to touch it or anything as well as cramps. I do take tylenol almost every day but that's about it. Lortab makes me loopy and knocks me out so i only take it in the evenings if I can help it.

I also have pain in my joints, some days I can't even walk well. But I deal with it because I don't know what else to do. As a result i'm miserable and very low in spirits. I buckled the other day and took some ibprofen, I was lucky and didn't have a problem with it and it was a blessing and helped with my joints enough for me to move.

Pain is different for everyone, just the same with managing it. Only you can really decide. but be open to your dr about your pain. good luck!
Posted 4/7/2010 3:07 AM (GMT 0)
I can not fathom a doctor not giving pain meds when you're actually in the hospital. My surgeon who is the one to admit me usually even prescribes ambien so I can sleep...and if that doesn't work, I've asked if I can "save up" pain meds to take closer to bedtime and he said I can use them however I want, as long as I don't get more than prescribed.

My GI hesitates to prescribe pain meds, though she will prescribe anti-spasmodics and anti-nausea meds. Her theory is that if I'm in pain, something is wrong and needs to be addressed.

That being said, I save pain meds just in case I need them. I had percocet, lortab and darvocet all prescribed when I had blood clots, and don't take them now because that pain is gone, but I have them on hand for when I need them. My PCP also will prescribe meds if I need them for other things besides crohn's...for instance, when my back acts up, I have muscle relaxers and meds to take.

I agree with those who have said that no one should have to endure pain. I was in pain for an entire year...horrible pain that I could not stand up straight...and I don't think having a diagnosis anybody should have to deal with pain like that. I have a friend who doesn't even take something for a headache...and that's not like me at all. If I have a headache, I take something, if I have a sinus infection, I take meds to help, if my back hurts from overdoing it, I take something, etc... The way I see it, if there's something you can take to make you feel better and function better, I'm all for it. (don't get me wrong, I don't take meds if I don't need them!)
Posted 4/8/2010 7:04 AM (GMT 0)
well stated Becky
Posted 4/10/2010 8:03 PM (GMT 0)
First and foremost, anyone with pain from a particular disease should and can get their pain under control. My advice to anyone in chronic pain, is to go see a pain managment doctor/anesthesiologist that is affilliated with reputable hospitals. Iv'e dealt with chronic back pain for 6 years now resulting from a ruptured disk at the L5 that is constantly pressed on the S1 nerve root. Since October of 2009 I've had three peri-anal abscesses, with the last one running about 5 inches deep. See a pain doctor! It's the best thing I ever did.
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