Looking for any wisdom/insights. The past year or so I have had recurring cuffitis and I also have a stricture at the anastamosis that has been resistant to dialation. For that past several months I have had chronic pain and pressure in the rectal area and lower back. It is totally zapping my energy and I feel wiped out. A few months ago I was hospitalized and CT scan showed "a Stable horseshoe shaped fluid collection around the amount J pouch anastomosis with residual ring enhancement." The doctor said it was not enough "to stick a needle in" and sent me home. Could this be the source of the pain. If so, what should I do? I am going to see a different GI doc, (sent to by the surgeon) Pouch function is "normal" for me. Just can't deal with this pain and no energy.

FYI also had a scope which showed no evidence of Chrohn's as well as a pouchogram with showed no structural problems with the pouch.

Chronic Pain is a real problem for many Pouchers. My first priority has always been to try to solve the underlying problems...... But what happens when months turn into years and the same issues persist, and the resulting pain never goes away?

I've told my story several times on this Forum, in a nutshell: Chronic Pouchitis for over a decade punctuated by short periods of relatively decent functioning. I've developed all sorts of physical and mental 'work-arounds' that I cling to just so that I can manage day to day and not go completely nuts. But still, I'm pretty much a wreck.

The potions that have most helped:

Opana ER - Yes. A long acting Narcotic Pain Medication that I recently started taking. Easily the most helpful and most cherished of my potions. One word; Amazing!

Prednisone - Yes. The Good Guy, the Bad Guy. The stuff works!

Lomotil - Yes

Hyoscyamine - Yes

Calmoseptine - Yes

Xifaxin - Somewhat

EntoCort - Somewhat

Cipro - Not a fan

Alka Seltzer - Yes

Pepto - Somewhat

Klonopin - When sleep is a must

SSRI's - Not so much

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quote:

Opana ER

Hi there!!!
I take Norco every 4 hours and dilaudid 4 mg PRN. I'd never heard of Opana so i just tried to find out some differences in that drug versus all of the drugs that i'm taking. And then... i got soooo confused!!!

Sorry to bother everyone on this particular thread, BUTT does anyone have any info as to why one would take Opana vs. Norco vs. Dilaudid?

thanks!!!
jilly

Jilly, if your current regimen is working for you, there would be no benefit to switching to Opana. Opana ER is for those needing around the clock opiate coverage, not for PRN (as needed) use. Regular Opana can be used PRN, but is still long acting, sort of like methadone or extended release morphine. So, if you think you might benefit from a longer acting opiate, it might be worth the switch. But, since it is a brand name drug, it would be more costly, and it would make more sense to me to try methadone before switching to Opana. Contrary to what the drug maufacturers would like you to believe, new is not necessarily better. But, for those who have not been able to manage their pain with the older opiates, having a new option is great.

Long story short, if it ain't broke, don't fix it!

Jan

The bottom line with pain management is that everyone responds differently to these medications. You need to make sure you have a pain management doctor who is willing to work with you to find what does work.

There are many approaches and new drugs to try. No one seems to have mentioned Tapentadol (Nucynta) which is actually the first central-acting analgesic to be approved by the FDA in over 25 years. What makes Tapentadol so interesting is that it is the only analgesic with evidence from clinical trials that suggests it does not adversely affect the GI tract with things like constipation.

I am unable to take extended-release or sustained-release (ER & SR) medications because my GI transit time is so quick, the benefit is lost. That leaves me with immediate-release (IR) morphine, 200mg 3x daily.

Listen to what a lot of people here are saying... a lot of these analgesics are very risky. If you or your family have any history of drug/alcohol dependence, let your pain management doctor know. Don't increase doses by yourself, don't deviate from the prescription. And if you're on them for an extended period of time, the chances are that you'll absolutely develop a tolerance. Make sure that you titrate down from analgesics that you stop, also.

Be safe.

I just started taking Oxycontin 10 mg every 12 hours. It is definitely giving me constipation which in turn is painful itself. Any suggestions, or advice? A little fearful that I will become extremely dependent. Hoping to knock the pain down while we search for the cause of the pain...

I was simply identifying an option that had not been mentioned here. Like I said, *everyone responds differently to these medications!* Just because oral Hydromorphone doesn't work well for one person, doesn't mean that it won't work well for another. Same goes for Tapentadol. And "serious pain" is completely subjective. If someone can take Tapentadol and have it relieve their pain, great.

I'm not sure about you, but a big reason I've been on these forums is to find answers to questions I have that others have unfortunately experienced. Let people know their options so that they can decide!

I can agree with the majority of opiate side effects being beneficial. My insides seem to be far less "volatile". Ha. I would also more or less agree with your depepdence/addiction definitions, though I'm not sure who that was in response to...?

You hit the nail on the head with your previous post about how you and your pain management doctor need to "try to solve the underlying problems" that are causing your pain. Unfortunately as many of us have learned, those underlying problems can be very difficult to identify, let alone solve.

Alright - enough of going in circles!

'Solving the underlying problems'...... That has been the problem for 25 years. And many Pouchers are still stuck in the same loop, "What the hell is my body doing!".

So, my GI docs have had years and years to uncover and cure my underlying cause (Whatever that is...), and it's been nothing but failure. At this point I just need options for basic functioning. Many of the tips and suggestions that we all make here on this site are really just coping ideas, ways to keep going.

I really don't intend to sound like a Pharma rep when I go on and on about Narcotics. It just happens to be something that is keeping me afloat these days.

Xifaxan and Entocort used to be worthless to me when my Pouchitis was raging, but now that I am in a post-prednisone remission they seem to work much better.

Cipro, I've concluded just makes me sick after a few days.

Topical Mesalamine and the suppositories are upsetting but Topical Hydrocortisone is working.

Alka Seltzer is my number go-to for gas and bloat, it works.

Lomotil, Hyoscyamine, and Narcotics slow it all down to a crawl which helps prevent all that over-use-of-the-rear inflammation from getting out of control.

Cymbalta has replaced Prozac, and so far I feel more coherent and less nuts!

Opana, yes, my new best friend, that chills everything out, kills pain, and keeps the glimmer of hope that I can keep functioning alive!

~Be well all

Mental Kase,

I appreciate the information you give on pain meds. Codeine is the one thing that really helps me out for slowdown. I'm only on a low dose right now(codeine phosphate), and really hope it doesn't lose it's effectiveness as it's been the sanity amongst the insanity of my jpouch. I'm going back to an ileostomy as soon as I possibly can, unless a miracle happens and my jpouch actually works for me as it does for others lol, but until then I'm relying on codeine to keep things at a tolerable level.
So yeah, cheers for the info, and personal opinions on the different opiates, as I might need to use one of these in the future. I'm sure i'm not the only one that will benefit from your posts.

Ad

Mental Kase,

Just reviewing my old post, I am still on 10 mg of Oxycontin every 12 hrs. I realize that I can't take it after 4 or 5 pm or I can't sleep at night, also, I think it makes me a little irritable. You mentioned Opana ER, do you have any advice, info for me in this regard?

Hello Pouchers-

It's been a while, almost a year now since I was giving those pain med tutorials, lol! I'm still free from any full blown bouts of pouchitis... Currently I chew the occasional Pepto Tab, sometimes Alka Seltzer, and when I remember to take it, Cipro. Most of it is just habit and fear of backsliding, generally I feel fine.

My longstanding pain med now has been 30mg/day of Oxymorphone. Oxymorphone is the opiate that is in Opana. I switched to the generic immediate release Oxymorphone for several reasons. 1) The cost of the generic is dirt cheap compared to Opana. 2) Oxymorphone is already a fairly long acting compound, so the Opana release mechanism only added a couple of hours to each dose. 3) The immediate release generic can be broken in half which means I can have 6 doses of 5mg to disperse throughout the day. Lots of coverage. So much coverage that I often forget to take dose 5 or 6 and I feel fine.

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jman79-

I've found that Oxycodone revs me up, gives me energy, and makes me nervous. Morphine is more sedating and calming. Oxymorphone is somewhere in between. Hope that helps.

MK

THanks for the input. For me the oxycontin only seems to last 6-7 hours. I take it when I get up and then again about 5 in the afternoon (so i can sleep). However, that means in the morning I feel horrible until I get up and take more... I worry about taking something that will "mellow or slow me down" as I am struggling with energy and motivation these days. Don't know if that would change anything. My doctor unfortunately isn't much help on these issues...

I hear you. One of the problems with the long acting pain medications like Oxy-Contin, MS-Contin, and Opana is that they DON'T last 12 hours, not even close. Opana seemed to last the longest for me at about 7 hours. However, the immediate release generic Oxymorphone lasts about 5 hours for me and the onset of action is much quicker (20 minutes compared to an hour for Opana).

When I got my first Oxy-Contin script a couple of years ago the first thing I did was complain to my Doctor that It wasn't lasting 12 hours and he told me that most patients actually needed 3 doses a day to feel they were adequately covered. Generally speaking, there are many complaints about the 'Contin' drugs, that they feel weak, they can't be broken into smaller doses, and IBD patients wonder if their GI tract is allowing enough time for their release etc.... If you don't mind fussing with pills just get generic Oxycodone in 5mg doses and meter it out in a way that works for you.

As for the 'energy' issues. Usually pain is the real energy sapper. Once I figured out my optimum dose and when to take it, all of my low energy issues went away.

The other big change for me was to finally ditch the SSRI's. Years and years of trying each new SSRI as they came out.... They are junk. I finally realized that SSRI's haven't really been working for me since the mid 1990's! I was always afraid to stop them for fear I would go crazy.... I finally fessed up to my Doctor that I really didn't think they had been working for years. He was not surprised and hears about SSRI failure all of the time from patients. He proposed a new track, given my history of chronic pain and anxiety, he said many patients were reverting to some of the older tricyclic that were tossed aside when SSRI's came out. So, I'm trying something called Nortriptyline. All good so far, and much less anxiety and panic.

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So what do you do before bed, and how do you feel in the morning?