Pain management options post DS

Hello to all, great to still see so many old faces!  

I am 5 years post DS surgery.  Ive maintained my 140lb weight loss without issue, and survived major plastics work (with much issue, but thats neither here nor there).  Now that my Drs can no longer blame my weight for anything- I have finally gotten some long standing issues diagnosed and am in the process of going through treatment to try to finally get my life back.  Some history- I am 36 years old.  I have Spina Bifida, degenerative disc and joint disease, Rheumatoid Arthritis, Osteopenia, Scoliosis, Reversed Lordosis, Lupus and Hashimotos Disease.  Im also in the process of finding out whether or not I have Thyroid Cancer and testing for a new neuro/muscular something issue that has cropped up in the last year.  Possibly MS, but all the testing isn't back yet...  I also have some sort of genetic metabolic processing disorder that they are trying to tract down.  This causes a host of issues, one of which is processing medications, which of course has become even MORE difficult post DS surgery.  ANYWAY- to say I deal with chronic debilitating pain is an understatement.  I get spinal blocks and ablations to deal with the spinal issues, and those work really well, with some breakthrough pain here and there.  The biggest issue is finding something to treat the RA and joint and nerve pain I have.  Ive been on countless different meds- both narcotic and non.  MOST of them don't work.  Even local anesthetic given topically or IM doesn't work. Fentanyl patches don't work...  Oral medications- some work, a bit, for a short period of time, in high doses- but this brings with it the fear (and frank reality) of potential dependance.  SO- Im coming to the group to see what, if anything anyone has found to work for them.  

Heres a list of whats been tried- without success- or with unsafe levels required-

The new formulation of Oxycontin- its an extended release, which begins to work 1-2 hours after taking.  I don't absorb a bit of that...
Percoset and others like it (Lortab, Vicodin, etc) work, but only for about an hour and I have to take a higher dose than safe
Most muscle relaxers- (the only one that helps a bit is Flexeril, but it interacts with another med Im on)
Cymbalta
Lyrica
Savella
Fentanyl patches

I can't take the following due to them causing issues with my Sphincter of Oddi Dysfunction-
Coedine
Morphine
Roxicet

So- Im kind of at a loss.  My pain management Dr doesn't really understand the DS- no matter how much Ive explained, how many diagrams and articles Ive provided and how much Ive requested he read into it.  He still calls it a gastric bypass and refuses to give me NSAIDS...  I would prefer to limit my use of narcotics.  Anyone have anything they have found that works?  That we actually absorb?  Something outside of the box that may help?  

Would it be possible for you to get a different pain management doc, one who will actually listen to you, learn about the DS, and work WITH you to get your pain under control??

The only other practical suggestion I have is that you can get some NSAIDs over the counter. You would need to take more pills at a time because the dose in each pill is lower, but I'm sure that's something you can manage. Also, the "unsafe" dose of some drugs might actually be safe for you because of your lower rate of absorption. Were your levels actually checked, or was it just assumed that a higher dose would be unsafe for you because it's unsafe for most people (people who have normal absorption, unlike you).

All medical care should be individualized. Sounds like some efforts have been made for you, but not enough, and that the nature of your malabsorption and what drugs and doses might be safe for YOU has not been taken into consideration.

Larra

NSAIDs do absolutely nothing for my pain, I was just using it as an example of how the Dr just doesn't quite "get" the DS.  I have only been at this Dr for one visit so far, as Ive just moved.  Ive had some extensive conversations with him via phone though, and have provided him with some vetted DS info to read up on and plan to further educate him at my next visit.  This is a top rated practice with several Drs in house, and unfortunately, the only one in a 100 mile radius that both offers the procedures I need and takes my insurance, so no real other options besides trying a different Dr in the practice (which I will absolutely do if he refuses to get on board).  Im certain that MOST of the issue with this Dr is that I am a new patient and being the nature of the pain management beast- Im sure he's heard EVERY excuse in the book from drug seekers and it may just take some time and talking with him and possibly some referrals to have him speak with other Drs on my team that have known me for years and years (including my DS surgeon) to get to the point he trusts Im not just another drug seeker and really DO have a valid reason for thinking outside the box and using things off label or above typical dosing.

My concern really is for some suggestions on medications that other DSers have used- possibly in other formulations or administration routes that have worked for them around our malabsorption.  I don't want to keep wasting money on meds that I try for a week or two (or more for some of them) and just keep having the Dr increase the dose for something that just won't work for my altered anatomy (like the Savella, Cymbalta, Lyrica, etc).  My goal is to find something that works, at as low a dose as possible, for use as a rescue med primarily.  Im relatively young, with a child and a job that require me to be "on point", and I spend over 20 hours a week commuting between work and my daughters private school- so nothing that will incapacitate me to the point I am unsafe.  I also don't want to get into the risks of addiction or the need for ever increasing doses due to drug acclimation.  I plan (well, hope is I guess a better term these days) to have many many many years in front of me- so practicality and limited use of effective meds are of utmost importance to me.  :)

Hello new to the forum. I too have a lot of issues fibromyalgia, RA, to name a few. I had lap band about 5-6 yrs ago. No problems, 60lb weight loss which I was ok with leaving me at 170lb. Last yr I was having so much reflux only able to oatmeal cereals and yogurt ice cream. Turns out the band slipped & my only option is remove go home and gain more weight, I've gained back 30lbs already 😢. Or have gastric bypass. Finally here's my question. You've been mentioning meds u can't take any longer. I've never heard this? If I have gastric, will I be able to continue w dilaudid & ativan?   Thank you

With a gastric bypass tou aren't supposed to take NSAIDS because of the increased risk of ulcers since yyou will have a pouch instead of a full stomach like the VSG and DS, You should check with the RnY forum to see if that is their actual experience.