today's appointment

i asked him if he could give me anything to help me sleep or anything for pain (and that pain meds can help slow things down) and he said no

I'm so done with this...18 hours a day of IVs, constant pain, exhaustion, moodiness, i feel like i'm always on the edge of snapping at everything...i can't do this anymore

Pam, how about seeing your GP about trying an anti-depressant? I am on a low dose of Lexapro, which isn't quite cutting it for me, but I find that when my mood is better pain is more tolerable. I have also found that opiates (like vicodin) depress me, amplify my pain and in general become a bit of a vicious cycle. So, I am actually planning to switch from a SSRI to a SNRI like Effexor - some of these (Cymbalta comes to mind) have a pain relief aspect to them I wonder if something like that maybe even a low dose could help you with pain, mood, etc. Or, there's one anti-depressant that I stopped because I didn't like it with Lexapro but it might be another idea for you called Trazodone that people take a low dose of that at night to help with sleep. Maybe something like that would elevate your mood a little and help you sleep, lower your pain a little? And, lastly anti-depressants are constipating, so you might get that benefit w/o the opiate downer stuff. Anyhoo, I hope you feel better soon! :o(

Ugh Just Ugh said...
Pam, how about seeing your GP about trying an anti-depressant? I am on a low dose of Lexapro, which isn't quite cutting it for me, but I find that when my mood is better pain is more tolerable. I have also found that opiates (like vicodin) depress me, amplify my pain and in general become a bit of a vicious cycle. So, I am actually planning to switch from a SSRI to a SNRI like Effexor - some of these (Cymbalta comes to mind) have a pain relief aspect to them I wonder if something like that maybe even a low dose could help you with pain, mood, etc. Or, there's one anti-depressant that I stopped because I didn't like it with Lexapro but it might be another idea for you called Trazodone that people take a low dose of that at night to help with sleep. Maybe something like that would elevate your mood a little and help you sleep, lower your pain a little? And, lastly anti-depressants are constipating, so you might get that benefit w/o the opiate downer stuff. Anyhoo, I hope you feel better soon! :o(

Thanks. I made an appointment with my primary for June 15th.

I have used Trazodone successfully as a sleep aid for years It helps me stay asleep, no side effects, no addictive qualities.
My GI says it can cause a little constipation for some people, but for me that is great!

Okay, I sent word out. If I hear of a pouch savvy GI in your area I'll let you know. :)

Sue

I am so sorry you're still doing so terribly Pam. I wish I knew of some kind of secret cure for you.

I understand your insurance limitation, but I think Suebear is on the right track RE a consultation. Paul L in Toronto had the fluid-loss complication after his Stage 1 surgery so his surgeon kept him in hospital longer & managed his condition right there 'til it came under control. Then she discharged him-- with regular follow-up care. It's hard for me to "get" why your Buffalo doctors don't contact someone like HER about your situation. That is in English-speaking, neighboring Canada, for pete's sake-- between the Northeast U.S. or Ontario they should surely be able to consult a more knowledgeable IBD gastro and/or surgeon. They really bug me! They should get off their butts & find better info. to help you. Maybe they are embarrassed to attempt outside consultations asking for help with a private case, but IMHO-- that is unprofessional in a physician. / Old Hat (30 yrs with left-sided UC; presently in remission taking brandname Colazal)

Hugs to you, Pam. Wish I could offer more!

Sue, I searched j-pouch.org and people are put on Entocort and even Humira for persistent pouchitis--these people do not have Crohn's

Pam, I mentioned your case to my gastro-- who says your doctors would be welcome to inquire at the Roberts IBD Center, part of Weill Cornell Medical Center in NYC. My feeling is that gastroenterology there or at Mt. Sinai Hospital of the CUNY Medical School system in NYC is at least as good as the Cleveland Clinic, if not better. Just wanting the best available help for you ... / Old Hat (30 yrs with left-sided UC; presently in remission taking brandname Colazal)

Pam - Yes you definately need better help. At the very least someone who will precribe codeine or tincture of opium. I cannot beleive that they wont given all the evidence that it helps. When you look the drugs up they are used for this purpose! It makes no sense at all. My surgeon gives me codeine as I need it. If it didn't work - I know he would give me Tincture of Opium. I try to limit it as much as possible - in fact I am reducing all the time.

I would seriously, truly, try metamucil! I know you are on other stuff that is meant to help thicken - but clearly it does not work! And you can buy it yourself without needing to beg a doctor for a precription! It makes a massive difference for me - if I forget I notice very quickly and many, many JPouchers find it helps alot.

I hope that you can get another opinion soon, Pam. My thoughts and very best wishes are with you. Fingers crossed for you :) You have been through enough - but dont give up and stay strong!

Are you doing any better today? I hope that you heal and things start to improve soon.