Pain Management

Hi, My question is for the doctor.  I had Gastric Bypass Surgery in June/2006.  I In Dec/2007, I had an abdominoplasty.  After that..within weeks, I was hospitalized for severe pain and vomiting.  They thought I had diverticulitis and treated me in hospital and then sent me home.  A few months later...it happened again.  And again and again, etc.  The windows between episodes are closing and when I have an attack, the pain can get up to a Level 10 which causes me to think irrationally (do whatever I need to get the pain to stop).  I have never been in rehab or have never "asked" for pain meds. Well now, I really need them.  I have gone down to Boston (I'm in NH) and am now seeing a doc at Mass General but she wants me to wait till my pain is a 7-10 then go to Mass General ER to be admitted and evaluated.  Because I'm a single mom living an hour and a half from the hospital, this is an impossible hurdle with horrid pain.  Between my PCP, my previous gastric bypass surgeon who threw up his hands as he cannot figure out what is wrong with me and the new surgeon, I am being tossed around and not treated for the pain while I wait for someone to diagnose me.
When I discuss it with my PCP, she refuses to treat the pain "long term" meaning she gave me a script for vicodin with 30 pills and one refill months ago (long gone).  
I was also told by my PCP to stop going to the ER when my pain is high because "it's like the boy who cried wolf."  The Mass General Doc thinks I may have a bacterial overgrowth in my gastric remnant, can't get meds in so no resolution in sight as of yet.  Do you have any advice on how to get treated for the pain while we work out the logistics of the treatment/resolution to this problem, without everyone looking at me like I'm a drug addict (there is absolutely no reason, on my medical charts or otherwise, for anyone to think that).
Please help.
Desperately seeking relief,
Karen

[J T Junig, MD PhD]

What a horrible situation.  It sounds like nobody will own up to the problems created by the surgery-- when there are complications after surgeries, everyone scatters!  I just had a discussion with another doctor about these docs out there who act as if they are doing the 'right thing' when they say 'I am just not treating pain with narcotics anymore'-- what a dereliction of duty!  Yes, pain treatment is trying from many perspectives, but I do not understand how a doctor can simply say that he/she  will not treat it!  

I am assuming, maybe incorrectly, that the surgery was to lose weight?  Around my area, people first must go through a psych eval-- is that person still around? no, I do NOT think the pain is in your head;  I am just wondering if that person would be an advocate for you at all.  Otherwise, I have to think that the surgeon is the one who should be running the show.  You are at Mass General-- the Mecca, for Pete's sake-- they should be imaging you, doing ultrasounds, maybe going in with a laparascope, doing a barium swallow-- they should first make sure that everything is OK anatomically-- that the stomach isn't banded too tightly, that nothing is leaking, that there are no obstructions from adhesions..

Yes, ibuprofen has to be a 'no no'-- it will give you an ulcer if you keep using it, and you have less stomach left to spare so an ulcer would not be good.

If the anatomy is OK, look for patterns to the pain.  Can you eliminate it by eating very small meals-- or by constantly 'grazing' on tiny morsels?  Are there certain foods that bring on the pain?

I don't know about the opiate pain meds-- they affect motility of the GI system, and could aggravate the pain when they are wearing off, for example-- but if you need them, what can you do?  At least take notes, and try to see if there is any pattern to the pain pills and the pain-- do they eliminate the pain, but then does the pain come back at a certain time AFTER you take them?

I am at a loss-- be sure to search for the GI people at MedHelp as well.

Good luck,

Jeff J

[april2002]

An update to the situation.  My Mass General doc told me to stop taking advil as it's a "no no" after gastric bypass as I told her I was taking four at a time.  She said to stop taking it and take Tylenol.  I explained that the pain was too great to stop. She told me she couldn't force me to stop taking it but just wanted me to know the risks.  That was it.

Grrrrrr

[april2002]

Hi, thank you for your response.  Yes, the surgery was to lose weight.  I started out at 294 and am now 161.  I only got down to about the 170's but have since started dropping weight again due to not being able to eat.  I've lost about 15 lbs since the end of November.  No, it's not certain foods...it may be a bacterial overgrowth in my gastric remnant.  The windows between "bouts" are closing and I'm currently only on advil because no one will give me anything else.  I took classes, had a psych eval and had lots of other tests before being allowed to have surgery.  I just started going to Mass General as I am in NH and the surgeon that did my surgery kind of threw his hands up in the air after and exploratory surgery and yes, all the tests, CT Scans, GI, etc.  The Mass General doc thinks she may know what is wrong...we are getting all the CD's of previous scans done and she wants to do one test (colonoscopy) before going in again laporoscopically to look at my gastric remnant, scar tissue, etc.

I actually have been at the point during Level 10 Pain where I honestly wanted to die.  When this first started happening in January of 2008, I was given Demerol and that helped immensely.  I also had percocet at one point and that was a saving grace.  But now I'm just with this one doc and I asked her about pain management and she said Tylenol for level 10 pain.  My PCP won't treat pain on an on-going basis.  When the pain gets to a level 10, I usually vomit if I put anything in my mouth...even a pill...so taking something at that level wouldn't help anyways.  But if they would help me manage the pain, maybe it wouldn't ever get to that point.

I have never in my life felt so alone.  The surgeon just says that solving the problem is better than taking pain meds but that is obviously going to take time.  I have thought about finding another PCP because I don't understand why someone wouldn't give a patient in this much pain on a regular basis something to help get through while she is seeking a resolution.  Why are the pills out there if no one can have them?

I know you can't solve this but it's nice to see that not all members of the medical community consider everyone out there a possible drug addict.  Oh and history shows that whenever I was offered pain meds in the past I asked for Motrin or anything non-narcotic even after my wisdom teeth were pulled...I took Motrin.  So there is no basis for anyone to believe anything else...it's been just since my Gastric Bypass and the past year that I have needed something.
Thanks again.

[Jaybay]

OMG!  I can't imagine what your life must be like.  Well, I take that back - I can.  I've been there but for somewhat different reasons.  I have abdominal adhesions and live with partial bowel obstruction 24/7.  Since the scar tissue doesn't show up on tests, it took years of documenting one adhesion surgery after another before I was referred to pain management.  

You are so right in your description of feeling alone and abandonded.  As Dr. Junig pointed out, when things go wrong (particularly with a surgery) everyone scatters.  "Not my problem!  Not my job!"  Unexplained, non-malignant severe pain is the worst possible situation in which a patient can find herself.  Until a cause can be found on some test or another, you aren't going to be believed by most people in the medical community.

I got lucky eventually.  My GI doc and surgeon had worked with me for several years.  When it became obvious that the adhesions came back within a week of my umpteenth surgery, my surgeon referred me to the right pain doctor.  She also does the anesthesia for the surgeon and the GI doc, so everyone knows everybody, and best of all - they all know me.  Try to have faith.  There IS a doc out there who will listen to you.  It would be a whole lot easier if you had the cooperation of your other doctors, but it's not impossible.  Can you self-refer or does your insurance require a formal referral?  Take a look at the doctors on your network list and start making some calls.  If you can afford to pay out of pocket, it will be worth it even if you have to sell off assets to pay the bills.

Dr. J also makes a very good point in trying to enlist the help of the therapist you spoke with before surgery.  My pain shrink has been nothing short of fabulous in helping to keep the lines of communication wide open between herself, me, my pain doctor, surgeon, and gastro doc.  She has helped with statements needed for disability and made calls to various doctors on my behalf when I was lost in the woods.  There is no doubt in my mind that if I were in your situation, she would be on the phone with my doctors, and if she got nowhere with them she'd find someone else.  Actually, she HAS done that for me.

If at all possible, start seeing a pain psychologist.  There is a big difference between a pain shrink and one who doesn't specialize in pain.  Your PCP or surgeon should have no issue if you ask for a referral.  There really are things you can do to help get you through a pain crisis, and a pain psychologist is just the person to teach you.  No, these techniques won't take away your pain, rather, they help you endure it without making it worse by tensing up and focusing on it.  As you build a relationship with your therapist, you are adding a big advocate to your case as well as putting a big hammer into your pain toolbox.  Treating the mind as well as the body has brought me back into having some kind of a life again.  You can't neglect either angle.

Dr. J. is right in asking you to keep a pain journal.  I'm of mixed minds on that for my own case because my therapy involves NOT focusing on my pain, but I also have a diagnosis.  Since you don't have a firm diagnosis yet, a pain journal can be invaluable to a doctor looking at your case.  Arrange it however you like, whether free-form notes jotted down during the day or a more formal spreadsheet.  You'll want to track things like what times of day are better or worse; any foods that change your pain levels; activities; how much your sleep is interrupted due to pain - everything and anything you can think to chart.  Don't forget to include nausea and exactly what medications you take including vitamins and over the counter meds.  Chart your menstrual cycle at the same time.  Hormones can jack around with any number of digestive issues, so that's an important one.

Pain journals can also be helpful if you do get into opiate therapy.  Sometimes patients think the meds aren't helping, but if you look back at a daily journal you may find you've become more active, sleep better, or are more active.  Improvement can be gradual and  hard to notice.

Sorry I wrote a book.  LOL!   Your story cried out for some support, so write any time.  I hope you get the help you need very soon.  :-)

[april2002]

Thank you so much.  i actually appreciate your book...it's nice to be heard even if it's not by someone who can write a script.  i have been tracking my pain and have kept different forms of journals.  i also documented my entire history and all my symptoms with questions and have given this to the Mass General Doctor.  It seems the NH docs are a bit offended that i've gone down to Boston...my PCP isn't being supportive.  i think going to another state further complicates things up here...but i'm from Boston and know they are the best.  i just need a doctor to help me manage till i get a diagnosis.  i didn't realize there were pain therapists...i had been referred to pain management but thought i would seek a diagnosis first as i didn't know if they would actually treat me without one.  And the pain clinic i trying to set up an appt with gave me the absolute runaround.

i am a single mom and it's very difficult to manage life and the pain and working full time.  When the pain level gets to be a ten, i sometimes feel like there's no point in going on anymore...when it's not a 10, i am not suicidal and continue to carry on the journey of coming to a diagnosis.  i am just tired and frustrated and being made to feel like i'm nuts.  i have actually been asked if the pain started with any significant life changing events...meaning..i'm nuts.  That's about the time i stopped going to Portsmouth as that is just ridiculous.  So thanks again for your support...it's nice to know there's someone out there that did get help...and that maybe one day someone will help me.

[nanal800]

Certainly.....the day is coming when you'll get help ! I just wanted to share my story.......cause it's similar in that I was treated like a " drug seeker " at various times in the 26 years since I had my accident.......which left me with an incomplete spinal injury.....at level L 3-4 ...........mobility was and is an issue......but pain.....has been the factor most interfereing with a moderately " normal " life ! The worst time I had was when I moved from N.C.......to Texas.......once Dr's saw what I was being prescribed.......they wouldn't touch me........and I have to say.....I was mostly treated.......like a leper ! Finally.......a Dr. took me on.......but insisted that I go to a pain clinic........which was fine........no.....it was better than fine because they found anticonvulsant drugs that addressed my nerve pain better than any narcotic had up to that point. My whole windy story is just to give you hope.......that there are Dr's out there who will look at you......your pain issues.........and want to do something about them.........just don't give up ! A pain clinic is going to be your best bet......in my opinion........and......if opiates are the only thing that will relieve your pain.......they'll have the courage to use them.........if there is something better,,........they'll probably know about it.........in any case.......you SHOULD eventually.......get some help.! You have my very best wishes to get help soon.....I mean fast !!!!.........peace and love.......Norma