5 yrs post op pain and no where to turn

  Does any other long term post ops feel as if there are very little physicians that are skilled in handling us? I have been living off of zantac, zegerid, pepcid and maalox for 9 mths now. For the last 2 weeks nothing is relieving my pain to upper abdomen and back. I dont even complain anymore because I am a nurse and I dont want people to think i am a hypochondriac but it is becoming unbearable and I dont know where to turn. I gained 30# back in 2 yrs and I go from either being on liquids for days because I am afraid I will be sick if I eat solids to eating little protein and excess carbs because I dont feel pain  and it passes through so easily but that also causes me to be zapped of energy and bloated. I am now back to no solids for the last 5 days  because of this pain, tightness, bloating, excess gas, constipation etc. It has become chronic and I feel as if it is normal now.  My surgeon doesn't care to see pts after more than 2 yrs unless they are found to need surgery and I cannot find a GI doctor that knows much about long term post ops. I had a scope 18mths ago that didn't show anything and I decided it must be normal to feel awful 80% of the time. I have had numerous primary care doctors tell me they don't know much about long term effects and would not even be sure what to look for.  Unless I have fever, diarrhea, excess vomiting or trouble taking a deep breath I continue to treat myself. It is becoming quite depressing to feel poisoned all of the time. If anyone out there has some ideas on how to find a good GI specialist in Michigan I am all for the assistance. 

Pain and "feeling awful" is NOT normal. Pain is your body's way of telling you something is wrong. You know that. You're a nurse. But then again, the "cobbler has no shoes" theory is probably in play here. I've found that folks in the medical profession seem to be the ones who don't take care of medical situations in their own bodies. SO yeah... I'm here to tell you to not let the pain continue. It's serious business and you need to be super aggressive. OK?

Have you actually called Dr. Krause and told him about what's going on? Or are you just assuming he doesn't want to see patients after 2 years because that's what you've heard? Even if Dr. Krause won't see you, I'm sure his office can recommend a GI doc who knows a thing or two about bariatrics. Is your PCP not helping at all? 

Yes, this might be associated with your weight loss surgery -- but in general doctors can't just write you off because they don't know about bariatric medicine. They need to treat you as a patient with pain and do whatever it takes to find out what's happening. And you can't let them brush you off - this is definitely one of those instances where you have to be your own patient advocate and demand the care you deserve. 

If your surgeon really won't help you, then you'll need to start calling other surgeon offices to find someone who will. Or find a MD who is also a bariatrician who will see you. Dr. Manasian in Flint is the local expert in all things bariatrics here in the area and you might consider making an appointment with him --- he's a bulldog with stuff like this and will wor****il he figures out what's going on (see the post a few down from this one that talks about him). He's a doctor with his own practice and he also works with Hurley's bariatric clinic. 

Keep us posted.

Pam

I feel for ya, I was having some weird things with my bowls (seen on x-rays), and thought I had Peterson's Space. I took the films to Krause's office, told him he could also see numerous CT scans of my chest at Beaumont (which would show the top of my bowls) and I gave him a 'letter' describing all the problems/symptoms I was having. He never called me back! My hubby had an appt. the week after I dropped off my films and asked him about it at his appt., Krause just looked at him like oh yea that is your wife and said, 'yea I didn't see any problem'. That was it, end of story, he didn't even ask him how I was doing! Glad I never went back to him!

That said, I have a really nice GI, he's never had to look 'in' me since RNY, but I had to see him last summer about worsening reflux and he was pretty aggressive with new meds and told me if it didn't work in 4-6 weeks that he would be scoping me, luckily I didn't need it, but he was not poo poo'ing me, you may want to try to see him. He is out of Beaumont, his name is John Weber MD http://beaunet.beaumont.edu/portal/pls/portal/prs.web_pkg.bio?xdr=2649

Good luck,

Edie

 I am not familiar where you are from.  I am in the Kalamazoo area and Dr. Stuart Verseman and his PA are both excellent with bariatric patients.  They operated on me in Sept. and I am very pleased.  I am an RN, with a long history of surgical dept. management and I usually don't get too excited by many surgeons or doctors in general.  Dr. V and Karen Orr, PA are the best thing since sliced bread!

If you live closer to Grand Rapids, my daughter sees Dr. James Foote of Grand Health Partners.  She knows lots of people that have used him for various WLS over the years and all are extremely satisfied.

Since it's YOUR health, YOU must take the lead in finding someone to LISTEN to you.  There are plenty of doctors out there that are knowledgeable. Be assertive......it's for YOU!

Good luck!

 Thanks for the info everyone! I ate solid foods again yesterday and did pretty well but I was craving something salty and decided pickles might be a good thing and I suffered all night! I woke up today and had to take some maalox, omeprazole and zantac and go back to sleep for a few hours just to walk around and now I am feeling a bit better but I afraid to eat again. I know I need to follow up with this and I decided that I will make the drive to royal oak if it happens again this week. I have talked to dr.krause's office and they only want to see me if my pcp and GI feel there is a sugical concern. My PCP is family practice and she told me that she thought I needed to find someone who knows more about long term post op pt's because she didn't feel comfortable and I haven't found anyone yet know is real comfortable. I asked Dr.Krause's office to suggest someone and I am still waiting on a callback. I am really not trying to avoid help I just don't want to look bad by seeing someone who doesn't have the knowledge I need. Plus, I just started working at a very busy ER in september and I am pretty sure after all of this time that when I do find someone they are going to want to do surgery with all of the symptoms I have been having and I just don't have the time for that right now unless it is life threatening. I don't want to take off of work already. I will look into that GI doctor you recommended out of beaumont however. I will keep you posted! Thanks for the concern!

Well I did not have the RNY but is it a possibility of an ulcer in the blind stomach? Since you seem to go after antacids, makes me wonder.

That said, I would go to UofM. They have a good set of GI docs. I would just schedual an appointment with them and go from there. This is from experience with them with my father. If I couldn't see my Surgeon for a problem good chances I would be going there.