Hello,
My name is Michael and I've had my J-pouch for over 15 yrs. Unfortunately over 10 yrs ago, I started to develop Chronic debitating back, neck and hip pain. Docs THOUGHT initially that I had FIBROMYALGIA but it turned out that diagnosis was INCORRECT and changed to Spondylitis and/or Psoriatic/ Colitic Arthritis RELATED to U.Colitis. My rheumatologist has had me on a VERY HIGH dose of the pain medicine (OXYCONTIN) for over 7 years now! I take (160mg 3x/day)and I am NOW DEPENDENT and/or ADDICTED to it and am facing no CHOICE but to go into a REHAB/ DETOXIFICATION program. I am so TERRIBLY FRIGHTENED about being in a Drug/ Chemical Dependency Inpatient hospital progam and have NO IDEA what to expect or WHERE TO GO! If You or ANYONE YOU KNOW, HAS HAD A BAD EXPERIENCE OR DEALT WITH AN OXYCONTIN ADDICTION, I'd appreciate it if you could contact me IMMEDIATELY! Peace and thanks SO MUCH!
Michael - NJ
My direct e-mail address is: Michael's Direct E-mail

The person who springs to mind is Copperhead (Emilio). He would really be able to relate as he struggled with dependency after surgeries that put him through the wringer. But I'm not sure how to contact him as he left the site. Anyone know Copperhead's email address?
I'm sure he could really give you some insight into this, though I don't remember whether he had rehab or treatment of any kind for his addiction. If no-one on the boards can help with contact info, the moderators might be able to help. I'm sorry you're having to deal with addiction along with the rest of the package - but good for you for getting help. The stigma around addiction is so destructive; a lot of good people have problems like this. I hope you're well on the way to ditching feelings of shame. Get well soon!

Don't be scared... going into a rehab facility might be the best thing for you. It is a very structured environment where you are medically detoxed and go to a lot of lectures and classes on addiction.
I started abusing pain meds around the age of 18. I had my first surgery in 1989 - and my reversal in 1990.
Its been a long road for me - but, if you really want to be clean you have to fight for it. I look at it as a life or death thing for me. I attend a 12 step program and surround myself with people who understand what I'm going thru.
At my worst - I was taking approx 20 vicodin per day just to function. I started buying them off of the street from a dealer.
My addiction took me to places I never thought I'd go - but you can recover if you have the willingness to do so.
I wish you luck my friend.

I sent an e- mail to Copperhead
LoriP

Hi Micheal,
Sorry to hear about your dilema. you are doing the right thing. You have taken the most important step, admitting you are powerless. I have been sober for over six years.
Unfortunately you are dealing with one of the toughest pills/drugs to kick. I never took opiates but witness withdrawl in rehab. And the only way to overcome is cold turkey,which is very very rough for three days. But it won't kill you. Its just rough with nausea, fever, chills the whole works. Don't want to scare you.
Hopefully the rehab you go to, supports the 12 step programs. It's the only way to stay sober.
and the recovery program is so much more than stopping addictions, its about spiritual practices. If you have any q's feel free to contact me.
E

Good advice above. I support your decision to be proactive about this addiction. However, do not assume that you have to forgo treatment for your spondylitis. I take a little bit of Vicodin for mine (probably 3-4 doses a week), but my main treatment is Humira and Mobic (meloxicam). I am not pain free, but I am quite functional.

I just wanted you to know that there are disease specific treatments for the spondylitis, not just treatment of the pain.

To my knowledge, I don't believe that Emilio has ever stopped taking his narcotics, but does maintain a constant level.

Jan

Dear Soph, Jan, Eric, Lori & Kim!

Thank you so much for answering and for the advice. I'm HOPEFULLY getting closer to a 'solution'. Jan, in regards to treatment for the 'arthritis'/ Spondylitis, I have been on every drug available (all in the same class)... ie: HUMIRA, REMICADE & ENBREL. All 3 of them put me in the hospital with pnemonia. So badly, from the HUMIRA, last August that I almost died.

Eric, as you pointed out the DETOX or withdrawal can be very tough. There are many meds to 'counter-act' the bad effects. The other extremely difficult issue is that I need to be placed on a 'substitute' medication. (Of course I don't want it to be an Opiate and I need a 'team' of docs - Rheumatologist/ Pain Mgmt/ GI/ Psych to determine (while in the hospital, what THAT drug will be). I can't get any doctors to continue writing the Rx for the OXYCONTIN, NOT EVEN MY NEW RHEUMATOLOGIST. NOBODY WANTS TO TOUCH MY 'CASE' WITH A TEN FOOT POLE OUT OF FEAR THAT I WILL SUE THEM FOR MALPRACTICE... So, I'm looking at N.Y. Presbyterian/ Cornell Weill in NYC. I'm also considering going to the CLEVELAND CLINIC and just being EVALUATED. I've read that many J-pouchers 'RAVE' about 'CLEVELAND CLINIC' and I'm praying they will be knowledgeable to deal with my COMPLEX case... THANKS AGAIN FOR ALL OF YOUR SUPPORT. WORDS CAN'T EXPRESS HOW MUCH IT MEANS TO ME!

Regards,
Michael James

Well, obviously, you can't take the TNF blockers...too bad, because they are supposed to be the new hope. Do you tolerate NSAIDs? Something to consider. I've been on Mobic for about a year now and tolerate it fine. You might also want to consider Ultram as a subsitute. If your spondylitis pain is concentrated in one area of the spine you may be a candidate for an intrathecal pain pump, where tiny doses of narcotic are delivered directly to the spine. http://www.medictronic.com/neuro/ttp/treatment_pump.html
If your arthritis is more peripheral, you may respond to Azulfidine. Another option is methotrexate, but if you have gone with anti TNF meds, you probably have tried it.

A second opinion at Cleveland Clinic is sounding pretty good right now.

Jan

Have you heard of subutex?
I know of a a couple people who got off opiates using this.
http://www.fda.gov/cder/drug/infopage/subutex_suboxone/default.htm
You need to find a doctor who is approved to use this but there is a list on the web.
Best of luck,
Bill