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Re: Butt, I'm Really Freakin' Out! :( » corafree

Posted by Jost on July 28, 2006, at 23:14:25

In reply to Re: Butt, I'm Really Freakin' Out! :( » Kath, posted by corafree on July 28, 2006, at 11:04:11

Hi, Cf.

Your experience sounds awful--totally unacceptable. There should be sanctions for people like that doctor. Seriously.

I was wondering if you'd tried something called Miralax? It's a prescription drug, but is, according to my Signif. O., is one of the most effective treatments so far.

I assume you drink enough water, and do all the other things--

My SigO's brother had the same problem that you've got, at least with the opioids, leading to loss of muscle tone in his digestive tract-- He had chronic pain also, and took very high doses of various drugs at various times, including fentanyl, oxycontin, dilaudid, and many other things.

There are doctors who specialize in treating Opioid Bowel Syndrome, since it's a pretty widespread although under-diagnosed and very undertreated problem. But they do exist. I know you have the complication of Irritable Bowel, so it might be more difficult to find the right approach. Even more reason to try to find someone who knows this area particularly, not just a general gastroenterologist.

My brother-in-law (I consider him that) consulted an MD at Columbia Presbyterian Hospital in NY, who specialized in this problem. She was very helpful, although ultimately, he needed to reduce the painkillers-- not stop them, but be careful to hold them below a certain amount.

I hope you can find ways of monitoring how much you use(totally as a practical thing-- because it does have these effects). I particularly hope you've got help with the emotional aspect, because that's where he got overwhelmed, and I think let the drug use spiral more than it needed to, and just couldn't taper, even though he needed to do that too, for medical reasons.

If there;s a good medical center near where you live, I would really check into that. It could make so much difference. Esp. because the person would understand that you need much greater doses of anesthetics, if you have procedures where you need pain control. Also, people who work with the problem understand the necessity of opioid use-- and can be so much more helpful, and non-judgmental.

There have been drug companies who've worked on more targeted treatments, not yet successfully, but maybe they'll find something.

Just know that you aren't alone with this-- even if people don't talk about it, and your doctor was uneducated, and had all the prejudices.

If I find anything on other treatments, I'll definitely let you know.

Meanwhile, I hope you're feeling a little better, physically and psychically.

Jost


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