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this stuff was amazing in the er through the iv... couldnt feel any pain at all.yea its stronger than percoset and probably habit forming so my uro wont prescribe it but i will certainly ask him tuesday. has this pain med worked for any of you icers?does it continue to work for years or do you continue having to upgrade to a stronger pain med cuz it stops working?i know every body is different.
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Newly IC diagnosed as of February 2011.
Medications I'm on that seem to work:
Zoloft- one once a day
Butrans pain patch 5 mcg (THANK GOD FOR WHOEVER INVENTED THIS!SO MUCH PAIN RELIEF ITS UNREAL,I AM IN NO PAIN AT ALL UNLESS I STRESS OR SCREW UP ON THE DIET)
Failed Meds:
Elmiron-after 4 months,digestive side effects got to be too much
tramadol-allergic
DMSO treatments(5-6)
probiotics
THERAPIES:gardening,cooking,IC Diet,Counseling,Lots of warm baths,stress reduction,heating pad or ice packs,meditation/deep breathing,listening to relaxing music,having fun on pain free days,drinking chamomile or peppermint tea,pelvic floor physical therapy
AROMATHERAPY-candles,incense
Village Naturals Aches and Pains Peppermint Bath Salts
Johnson and Johnsons Lavender Melt Away Stress Body Wash/Lotion
ACUPUNCTURE/HERBS
Significant pain relief so far.
MAY TRY:yoga,swimming/hydrotherapy and anti-candida diet if i can kick my sugar addiction
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***TO MY IC SISTERS AND BROTHERS:WE ARE OUR OWN ADVOCATES!,PLEASE DO AS MUCH RESEARCH ON YOUR OWN AS POSSIBLE AND TRY DIFFERENT TREATMENTS TO GET WELL.NOT ONE TREATMENT WORKS FOR EVERYONE.MOST IMPORTANTLY,TRY TO KEEP A POSITIVE ATTITUDE,DISTANCE YOURSELF FROM NEGATIVITY/NEGATIVE PEOPLE AND NEVER,EVER GIVE UP!***
Add me on facebook Angela Hasic
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Lord, make me an instrument of your peace;
where there is hatred, let me sow love;
when there is injury, pardon;
where there is doubt, faith;
where there is despair, hope;
where there is darkness, light;
and where there is sadness, joy.
Grant that I may not so much seek
to be consoled as to console;
to be understood, as to understand,
to be loved as to love;
for it is in giving that we receive,
it is in pardoning that we are pardoned,
and it is in dying [to ourselves] that we are born to eternal life.
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I highly doubt a URO is going to rx dilaudid. Finding a URO to rx pain meds regularly is almost unheard of, however most, if they feel its warranted will refer patients to a pain management specialist. My suggestion would be to express your concerns regarding your current pain management regimen (if any) and see what your URO's pain control protocol entails. If s/he doesnt suggest a pain management specialist this would be your time to inquire.
Wishing you well.(\__/)
(o.O )
(> < ) This is Bunny. He's on his way to world domination. -
Dilaudid
Anytime I have been in the hospital I have been given IV Diladid for pain. And yes, it does work really well. But for me, the pills just don't help as much. They actually made me feel bad. I don't want to go back into the hospital but if I do I know the IV Dilaudid works.
And good luck getting a uro to prescribe it. It's pretty strong stuff. And like I said, the pills just don't work the same way.Katie-46 yr old female dx'd with IC after 15 years of symptoms off and on long term antibiotic use, GERD,IBS and now IC diet, gallbladder removed, endometrial ablation w/tubes tied
Lexapro-20 mg
Aciphex
Ambien-as needed
Percocet-7.5 up to 3 per day as needed
Valium-10 mg x2 per day
Phenergan-1 at night
Prelief w/everything
Now recovering from acute pancreatitis
Currents treatments that help somewhat:
Heating pad
Hot baths
Ice
Being VERY still while lying down with legs elevatedComment
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I agree that you should discuss your current treatment plan with your uro and discuss any concerns you have. If he/she is unwilling to switch you to something different, stronger (or even add a different med to the mix), then it might be time to ask for a referral to a pain management Dr. But, even then, i wouldnt ask specifically for Diladud (or any pain med by name), since that often sends up red flags to them for drug seekers, (something you sure dont want them thinking, especially when they dont know you yet.)Originally posted by dg2901 View Post
But, even pain mgmt Drs dont always switch to something stronger when our old meds quit being as effective. I know mine doesnt. Instead, one month he switched me over to something else....a lateral move, saying it might work better since my body might have just gotten used to the other one. When I went back the next month and they asked how it worked, I told them that I still felt the same. So this time, the NP increased my Lyrica. That didnt help either. So, she increased the Lyrica some more. The next month they r/xed a TENS unit. That didnt help enough either, so she increased my muscle relaxor. The next month, they increased the Cymbalta. They next month they switched the Cymbalta to a different med. They next month, they put me back on the Cymbalta and made another lateral move on one of the meds. See how this works and why it takes forever to get them to up the dosage of the pain med? (Mine never makes more than one change per visit. They say that way they will know which drug is working and which isnt and also in case there are any side effects. So, it takes FOREVER to see big changes!)
I am always very careful to tell them that they are doing a great job, but i just need a bit more help, and that THIS med you gave me really seems to help, but I cant really tell that THIS one is doing anything or that it is helping enough. You have to really be careful with how you word things and that you dont complain too much to pain Drs about things not working or else they feel like if the meds arent helping there is no point in continuing to prescribe them. So, make sure that while you tell them what isnt working, that you also mention what IS working and how they are helping you.
One last thing, you probobly noticed in what I wrote above, that I hardly ever see my actual pain Dr. At almost every visit, I am treated by the NP. In fact, I have been going there for 4-5 years and have only seen the actual DR maybe once a year, and sometimes, not even that often. The good thing about going to a pain dr is you dont have that constant worry of being cut off at the next visit. Lastly, you dont have to endure ever being called a drug addict or being made to feel like one or have to hear one of those "you better make 'em last" speeches. You are reasonably sure you will get your meds every 28-30 days with no hassles, and there is definately something to be said for that!
I wish you good luck, whatever you decide to do. If you opt to ask for a referral to a PM Dr, I hope you find one nearby and that you are able to get in quickly.
Sending hugs,
Amaranthe
P.S. My OB r/xed Meperghan Fortis for me when I was pregnant. It is Demoral mixed with Phenegrin. I have also had Demoral shots when i was hospitalized. I got alot more relief from the shots than the pills, however the pills were still great and worked alot better than other things I have taken since then (like morphine, Lorecet, Lortab, oxycontin, oxycodone, percecet, etc.) B/c I get sick alot of times when i take pain meds, my pain Dr also used to give me phenegrin suppositiories, but now i take zofran. Anyway, I have used the suppositories when I took all those meds, and they still werent as good as the meperghan fortis i took while pregnant. i wish i could find a dr to r/x it now, but that is very hard to find. but, just wanted to let you know that even though the pills are still great, they arent nearly the same as the shots we get when we are in the hospital.I am not a medical professional. I do not give medical advice. In all cases, I urge you to talk to your Dr. about your treatment options.
D/Xed 2003 with IC. Also have the co-existing condtions of VV, Vulvadynia, Lupus, Fibro, GERD, CPP, Endo, & Adhesions, and Depression
Meds: Estrogel (due to total Hyster)
The meds r/xed by my Pain Dr. from the Pain Clinic are as follows: Morphine ER and IR, Baclofen, and Lyrica and Seroquel (used off-label as a sleeping pill, but it also helps with depression)
(I listed my meds in case someone reading this has been told like so many ICers that Drs dont r/x pain meds for IC.) I want you to know that there ARE tons of us who are also dealing w/this disease and the pain and many of us ARE on pain meds.)
John 3:16 For God so loved the world that he gave his only begotten son, that whoever believes in him shall not perish but have everlasting life.Comment
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yea ...the percoset seems to be working now that the er gave me a higher dosage on the refill than he did.i was talking to a friend about it the other day,the ivs or shots always feel better because they get into your bloodstream quicker. i always walk out of there feelin like a new person if ive had something via iv. pills by mouth just dont seem to work for me,upset my stomach,etc. i did ask for suppositories but someone in the office said he usually wont prescribe those. i dont think he prescribes any of the psych meds you all mention either valium,etc but i know he does prescribe me pain meds.. i dont know for how long so i will be searching for a PM clinic just in case.thanx
ps i know how it feels to be ''profiled'' as a drug seeker,the way the er dr was askin me questions before he decided to refill the pain meds...since so many people do come in there looking for that. i will be careful in how i phrase things also when it comes to requesting meds/what works and doesnt work for me.Newly IC diagnosed as of February 2011.
Medications I'm on that seem to work:
Zoloft- one once a day
Butrans pain patch 5 mcg (THANK GOD FOR WHOEVER INVENTED THIS!SO MUCH PAIN RELIEF ITS UNREAL,I AM IN NO PAIN AT ALL UNLESS I STRESS OR SCREW UP ON THE DIET)
Failed Meds:
Elmiron-after 4 months,digestive side effects got to be too much
tramadol-allergic
DMSO treatments(5-6)
probiotics
THERAPIES:gardening,cooking,IC Diet,Counseling,Lots of warm baths,stress reduction,heating pad or ice packs,meditation/deep breathing,listening to relaxing music,having fun on pain free days,drinking chamomile or peppermint tea,pelvic floor physical therapy
AROMATHERAPY-candles,incense
Village Naturals Aches and Pains Peppermint Bath Salts
Johnson and Johnsons Lavender Melt Away Stress Body Wash/Lotion
ACUPUNCTURE/HERBS
Significant pain relief so far.
MAY TRY:yoga,swimming/hydrotherapy and anti-candida diet if i can kick my sugar addiction
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
***TO MY IC SISTERS AND BROTHERS:WE ARE OUR OWN ADVOCATES!,PLEASE DO AS MUCH RESEARCH ON YOUR OWN AS POSSIBLE AND TRY DIFFERENT TREATMENTS TO GET WELL.NOT ONE TREATMENT WORKS FOR EVERYONE.MOST IMPORTANTLY,TRY TO KEEP A POSITIVE ATTITUDE,DISTANCE YOURSELF FROM NEGATIVITY/NEGATIVE PEOPLE AND NEVER,EVER GIVE UP!***
Add me on facebook Angela Hasic
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Lord, make me an instrument of your peace;
where there is hatred, let me sow love;
when there is injury, pardon;
where there is doubt, faith;
where there is despair, hope;
where there is darkness, light;
and where there is sadness, joy.
Grant that I may not so much seek
to be consoled as to console;
to be understood, as to understand,
to be loved as to love;
for it is in giving that we receive,
it is in pardoning that we are pardoned,
and it is in dying [to ourselves] that we are born to eternal life.
Comment
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The reason why IV meds work better than oral is because when you take oral meds they have to be processed through your liver and with an IV they are not. So you actually absorb more through the IV.
Just something I learned in nursing school.
I have had chronic pelvic pain for 7 years now and it is like pulling teeth to get anything for pain. The most I would get was naproxen for pain, which never helped. If i would go to the ER because I was in a horrible flare and couldnt do anything because I was in sooo much pain I might get a script for vicoden (maybe 10 of them) which I used sparingly. My new uro, Dr. Oldendorf, has given me tramadol for pain, and percocet for after my surgery because it causes flares.Diagnosis: IC '09, vulvodynia '10, fructose intolerance '06, GERD '06, fibromyalgia '09, IBS '10 and TMJ '09, PCOS '11, genital herpes '12
Current Meds: Butrans patch, welbutrin, lamictol, geodon, xanax, aldactone, linzess, topimax, trazadone and diflucan as needed.
Meds tried before: Elmiron, elavil, antibiotics, welbutrin, cymbalta, prozac, nerve blocks, instills, nyastatin, flexerol, percocet, naproxen (which was what I was given for pain for years).Comment
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I went to several pain management doctors. Some treated me very badly. I have a new one now and I love him. I see his nurse and him every single time. I am allergic to percoset, darvocet and fentynal (not sure if I spelled any of these correctly). Anyway, I was given Vicodin, but started getting upper GI issues. Also, after a couple of weeks I needed to up my dose. I am now on Diluadid - it is still not controlling all of my pain. It does help. But, now I cannot take any anti-depressants because I start getting dizzy, vomit and feel awful (plus I get a terrible rash). My pain doctor has sent me to a doctor who puts in pain pumps. I have been researching and talking to people with them. It is a significantly lower dose so I may be able to take an anti-depressant. There is are risks associated with this surgery. I have two choice now. I just saw another doctor today. Actually I have 3 choices. I can do another laporoscopy to check for adhesions ect., I can have a hydro to look for Hunner's ulcers (the NP said to laser them off) I had been told by an IC Specialist that I didn't have Hunner's ulcers when he did a cystoscope. The NP today said you can't see them without a hydro (so why did he tell me that EVERYONE's bladder will look like IC if you stretch it and that he COULD tell if I had Hunner's ulcers by doing an in office cystoscope. Option 3 try the pain pump trial. I absolutely don't know what to do. I KNOW I have IC because of all the food issues and frequency, urgency and horrible pain. But, don't know if there could be more going on in there. I can have surgery with the pain pump in too - I have already ask about that. Does anyone have any advice here? Oh, I don't have family or anyone except my husband to help me and he is limited on time because he at a military school that is very challenging and he cannot miss many more classes because of my issues.Teresa
We are not HUMAN BEINGS going through a temporary SPIRITUAL EXPERIENCE. We are SPIRITUAL BEINGS going through a temporary HUMAN EXPERIENCE....so that we may become more SPIRITUAL.
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Dialaudid is a great drug but is really meant for use in a hospital setting in an IV. Doctors do give it orally, but not often, due to the low bioavailability and half-life of the drug. I would reccomend that anyone with chronic pain that is looking into starting pain management look up the terms "bioavailability" and "half-life." Knowing what these mean in reference to the drugs you are offered will help you immensely in figuring out what may work best for you and how long it will work for. Also, look up "drug seeking behavior" and avoid the key words doctors look for in a drug seeker. Above all be HONEST about your pain level and what works and doesn't work for you.
Dilaudid (also known as hydromorphone) in an IV has a much higher bioavailability then it does orally.
IV= 52-58%
Oral= 30-35%
This means that orally you will not get the same effect as you will when its given in an IV. In essence, you will lose about 20% of the drugs effectiveness when taken orally.
According to my PMD, most of his IC patients take Oxymorphone/Opana, Oxycontin/Oxycodone, or Methadone.
Best of luck!-Jennifer
jenjen05
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25 years young. Diagnosed with IBS-C May 16, 2007. Diagnosed with moderate IC February 26, 2009. Severe anxiety and moderate depression since middle school.
Current Meds: 60mg Oxycontin 3x daily (every 8 hours), 30mg Oxycodone 4x daily as needed, 350mg Soma as needed (twice a day), 10mg Valium Vaginal Suppositories as needed (after sex usually, what I call "the nuke" is two of these, and two oxycodone by mouth and one soma by mouth and I can usually prevent a flare if this is done RIGHT AFTER sex along with a cold pack right over my bladder), and Prelief as needed. Heparin 10,000 units installs as needed for rescue needs, usually makes it worse after about 8 hours for the next day or so but then the pain goes away for a few days at least. By following the IC diet I have lost 35lbs and I love the IC diet because it has made me a much healthier person!
Past meds: 60mg Opana ER 9am and 80mg Opana ER at 9pm, 15mg Oxycodone as needed for breakthrough pain or flares, 350mg Soma as needed (twice a day usually). Hydrocodone 5/500 (two at night with 350mg Soma would get me 6 hours of sleep). Tramadol 50 mg (didn't touch my pain). Elavil 25mg (did nothing). Various installations made me worse every time. Cytotec (don't remember dosage, didn't work).
Photo below is of myself and my Golden Retriever/German Shepherd/Chow, Daisy May.
Message me if you'd like to be added to my Facebook!
Skype- jennifer.jericho
PLEASE read about antibiotic resistance. It is a growing problem, especially in the United States. We are running out of antibiotics that work effectively before scientists can develop new ones! http://www.fda.gov/oc/opacom/hottopics/anti_resist.html
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