Author:
Chuck Rovetti (Pain pal)
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Date Posted: 21:59:10 06/18/07 Mon
>My husband has suffered with severe pain for over 12
>years now for Crohn's disease. He currently takes
>morphine and percocet daily for pain but still isn't
>able to get proper relief. He isn't able to tolerate
>Fentynol (which he used to get by patch) and has
>problems absorbing traditional pill formula
>medications. Fortunately his doctor is really good
>about medication. Is there anything else people might
>be able to suggest?
Pls. ignore my first response, my spelling snd grammar where terrible !! Hopefully, this is a little easier to read and makes a little more sense !
Hi, my name is Chuck Rovetti, I was diagnosed with Crohn's around 32, I'm now 48 going on 96 ! First of all, your husband is very fortunate to have found a Dr. who will treat him for the pain, I have tried many differant options trying to deal with my pain (I've been officially diagnosed with a "Painful Neuropathy"). I have a GREAT pain specialist, we've tried spinal blocks, accupressure, accupuncture, then medications including: oxycontin, fentynal patches 25 -> 100 mcg's every 48 hrs. instead of every 72 hrs., it helped initially, especially when paired with oral fentynal (Actiq's, sort of a lollipop for breakthrough pain, currently up to 2X's daily @800 mcg). The problems with the fentynal patches included; they fall off easily, especially if sweating, yes I used tape but I still had trouble. The other issue I had with the patches is that the drug release system is dependant on the patients body temp., like a lot of Crohn's patients I have very frequent fevers, this causes more than necessary drug to be dispensed and therefore the patch works for even less time. I am currently using methadone (40 mgs / day) in conjunction with the Actiq's when I need a little extra help. I have come to accept a few things: 1) I have yet to find anything that will do more than take the edge off 85% of the time, I haven't had a pain free day in over 4 years. I have also had Dome success with meditation, both Zazen (seated) and Lamaze breathing 2) If you ever are admiited to an E.R. and your Dr. isn't there, be careful about asking for any particular medication or they will assume you're a drug seeker and will not treat you as quickly or as agressively as you may need until they speak to your prescribing Dr. 3) Oral meds. may or may not be effective depending on your particular pain level and where in your G.I. tract the disease is most active, you may not be able to absorb the med. initially but it may work great at someother time. 4) DO NOT GIVE UP and let the pain ruin your life, I know how difficult this can be but patience and persistance will payoff. Besides the Crohn's disease and painful neuropathy, I also get to share my life with osteo and rheumatoid arthritis, osteopenia, neuropathies (involuntary muscle movements), burned out adrenal glands (long prednisone use), sleep disorder (no REM) and now I am evidently an epileptic. I'm not mentioning these issues to brag but to make the point that any Challenge can be dealt with if you 1) don't allow yourself to wallow in selfpity but learn to appreciate all the good things in your life, I am glad I have these challenges in my life, they have made me a much stronger person, helped me realize the true priorities that are importsant to me, I spend much more time and appreciate every moment I have that I have with my wife, daughter and my seizure alert German Shepard. I need to apologize for rambling on, I haven't thought about all this stuff for a while. I only want to share a couple of other thoughts; I have learned that you MUST be your own medical advocate, question everything your DR. tells you, always question and look up any new meds. for possible side effects and interactions with other drugs or supplements you are already taking, I know it's actually harder on my wife and daughter than it is on me, it's more difficult to watch someone you love suffer than it is to suffer. If you have trouble dealing with your husband or his situation there are a number of support organizations (a lot online). I'm not big on support groups for myself, however, pls. feel free to contact me if you have any questions (I'm hot a Dr. and definately don't know everything but I am willing to share what I do know) you can also email me if you are frustrated and just need to bitch someone out. Take care, and remember you're not alone and you also have many blessings. Chuck R.
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