Hi there. If you are new to my blog please visit the about page. This site was created by me (sasha) because I have RA and chronic pancreatitis (CP). Some blog posts are more about RA, others are more about CP. The ones in between are about living with a chronic disease and the journey it takes us on. A portion of this site is about the caretaker/caregivers journey.
PAINS MEDS – Chronic Pancreatitis – The Definitive Sasha Story.
Many readers write to me about their pain med routine and how to resolve this anguishing battle. I have luckily come out on the other side of pain meds so let me briefly explain my journey. When I was first in the mystery zone and then finally diagnosed with CP in 2002 I was on major amounts of demerol. It was absolutely like candy. I was given fentynl suckers (usually for cancer patients) and liquid morphine. I could not take Vicodin because a) it would do nothing b) i always vomit 30 minutes after taking it. I was on this hardcore pain killer regimen for a few years. I felt tired all the time and clearly drugged up. But I had no choice. I had severe constipation and wouldnt go for around 12 days in general. I tried everything. i remember once I even took that awful fizzy stuff you take before a colonoscopy TWICE in one evening and still ZERO bowel movements. The only things that helped (including miralax, enemas, exlax, suppositories, and may more) were massive quantities of prunes and colonics. Without those two friends I would’ve died from toxic poop.
My GI talked about a whipple for my CP, but explained it would do nothing for me. He felt I would still be in the same amount of pain after. We almost did a stomach tube until the psychologist stepped in. I would’ve had to have an IV tower 24/7 for a full year. What a major non-workable scenario. (More on this here). My GI whom I love told me there was nothing but pain control that would really work. He urged me to never do another ERCP.
Eventually the state board contacted my GI doctor and said I was taking to many pain meds!!! WTF! What could I do. I thought i was being accused of being a druggie. But luckily my GI referred me to a pain management clinic and it CHANGED MY LIFE. Not all pain clinics are good so please be very careful and do a lot of research on the doctor. Mine is always a top 20 doctor in the US for pain management so I felt like I was in good hands. He takes a 3 pronged approach – mental health care was critical, next was visualization classes, and finally my bi-weekly pain med clinic appts.
The first switch was medication. I got on percoset (oxycotin), fentynl pops, and slowly but surely he stabalized me. My anger started to disapate. They then tried a neuro-stimulator but no effect. (More on this here). We tired a nerve blocker also, which helped but only for a short time and tiny effect. After one year of the 3 pronged therapy I was ready for my pump. (Read all about it on these pages. Me and My Pump I and also Part II). I am now finally living under managed pain care. It has changed my life. I feel more normal now and I have hours without pain!! It is unbelieveable!! I can’t make any specific recommendations to you – but i would urge you to seriously get second or third opinions before doing a surgery that you don’t know much about – particularly if you are not living in Los Angeles, Houston, or NYC. These are the only 3 medical centers that are using absolute modern technology. Otherwise you are getting knowledge from 10 years ago. Perhaps the Mayo Clinic is progressive, but I could not go there financially.
Now i am still on Percoset (oxycotin), but only 1-2 a day. I also take a lesser known drug called levorphenol for pain. It is longer acting but takes ages to start to work. Between these and my pump remote I am living tolerably. I will lose the $4000 remote in December since it is only a loaner so i know I will have a rough time being without it… I’ll go back to being on a few more meds. But now I know I was not a druggie. I was a person in a hell of a lot of pain.
CONTINUING JOURNEY. RA & More
I’ll write more about the continuing journey later this week. I still have severe insomnia. Also, I just started on anti-depressants since I just couldn’t stop feeling fatalisitic after Jax left. I lost my support system. I lost my unconditional love. I’m reading a book right now called SICK GIRL about a woman living with a heart transplant. She’s truly awful and selfish. She’s a whiner and I can’t believe her man stayed with her. It pisses me off to no end. I am single now and on the “market”. I am nowhere near ready to meet anyone, but I’m starting to surf the internet dating sites…I’m depressed about that alone. No guy wants to be with a woman over 35. I’m forced to lie about it. Plus who wants a girl with insomnia, two chronic diseases, and so much more? No one. While Jax can hit the market with a zillion options i have none that even come up for me on e-harmony – NONE. “sorry there are no matches for you at this time.” Can you believe it?? More soon.
Love Sasha. xoxo