Need surgeon/GI care in Seattle area (J pouch since 1983)

Char, a few things come to my mind.  

First Liver enzymes.  Have that looked into seriously.  My son was just diagnosed with a rare liver disease called Primary Schroling Colongitis (PSC). This is not spelled correctly, but Google PSC liver disease.

second.  yes, the laws for narcotics have changed, but as long as it's well documented as to. Where, when, why, and how, etc. you can stay n them.  Have you tried Tramadol? Also as long as you are not "doctor hopping" I don't think it is an issue.  But I could be wrong, and it could be just NJ.  

Third, you could have a few other things going on.  I would switch GI doctors.  I'm sure in Seattle, there must be some excellent facilities.  Feel better.

dianne

Even though the opiate Rx laws changed last year (no refills, no mail order, no electronic prescriptions-paper only), I have been able to stay on my Norco and only see my rheumy once a year, unless there is an acute issue. I also have spinal stenosis, along with enteropathic arthritis. I do keep my doses low, so that probably helps.

Yes, do switch doctors if you can. Even if your specialists are ineffective, sometimes just having a really great primary doctor is what you really need. Do stay on top of your liver enzymes. Having some elevation does not mean no Tylenol, but you need to be careful of your doses. using low dose Norco can help reduce how much Tylenol you use.

Seattle should give you better options.

Jan

Thank you Jan and Diane- Jeffs Mom,

Regarding  pain meds:  I have had 2 -  2nd opinions at  clinic  an hour and hour 1/2 away from me. Both stated I  should deb back on meds, sent letter to my primary stating she should take over and she has refused.   AM trying to find a new PCP  however, no one including other Dr.s  has anyone they can recommend so it is like  throwing a dart at names in a phone book , waiting a month to get an appt  and then  not knowing if that is even a good fit.   I have no addiction issues, don't drink smoke etc so there has never been an issues with  being on duragesic patch.  Now I walk with a  cane, hunched over , can't get basic ADL's done etc.  In addition, it several affected my bowel function . Constant spasm( even with bentyl), water diarrhea, cramping  and now 7 months of skin breakdown etc.

Back to pain meds issue: I had also  given my PCP the laws stating as  long as  Dr's follow guidelines its  ok to  RX.   She ignored that as well.

HAd a scoping done 2 weeks ago- I said the GI does not know my anatomy and the welling  /fistulas skin breakdown  will  make passing a scope through difficult.

Indeed it did  -she could see where to go and could not  pass the scope. her summary was I 'll just send you  to Cleveland Clinic.

Last week saw surgeon here who has some experience with the J - she recommended, doing dilation then scope then barium all  in the OR at the same time. Ugh- but it may shed some light ---- does not help with pain and functioning at t the moment, but it  is a step.

I did make a connection  int Seattle are at Uof Washington.  A Great Nurse  asweredteh phone and is checking into who I  may be able to see if I  can get there.

They are doing small bowel transplants there! WHO knew??!!

Yes, I will check further on the liver issue 

Thank you-- I wish I  would have known about this site years ago....

Charlene

It boggles my mind when doctors flat out refuse to cooperate with a coordinated effort for a medical care plan.

I have Kaiser, and have been with them for 50 years. I am not saying it is perfect or anything, but there is something to be said for ALL your providers (primary care, specialists, lab, radiology, hospital, etc.) to all be in the same facility with everyone having access to all your records. My rheumy writes my Rx recommendations, but my primary doc handles the refills. All my doctors know what the others recommend or order. 

So, if you can, try getting into a coordinated clinic type setting, like Cleveland Clinic or Mayo. I don't think there is a Kaiser in Seattle, but they probably have a coordinated clinic that is similar, probably university affiliated. I think that is your best bet.

Jan

My surgeon in Seattle was Steven Medwell at the Polyclinic. He is affiliated with the Swedish hospitals and I believe all the Swedish docs share info. I do not have a gastro. And that doc would not be in Seattle probably as I live an hour or more south of the city. Dr. Medwell deals with all issues with my pouch, but I think he does that because he was my surgeon. Google "Seattle Best Docs" and see who comes up. With most of my experience, the list from Seattle magazine is pretty good.

I  also see Dr. Steven Medwell at Swedish in Seattle. He created my pouch in 2011, and is absolutely the best when it comes to Jpouch issues. 

Lindsey