15 years out and can't find decent follow up care!

First post as a new member.  I had BPD/DS 15 years ago and have kept off 180 pounds except for two episodes when I let carbs back into my life.  I live in a rural area with limited access to specialist physicians, and as my original surgeon is located too far for me to drive due to disability, I have had follow-up blood work through the years by my GP.  My iron, calcium and Vit D levels have been problematic since the start.  I have received conflicting advice from several doctors on dealing with these deficiencies.  Now, as I approach my senior years, I want more expert follow-up and cannot seem to find a practice that understands the unique needs of a DS patient.  When I tell them that I need specific blood work, I am told it's beyond the scope of what they check for their patients.  When I explain that I eat a lot of protein, as much fat as I like, and only need to watch carbs, they shake their heads in disdain and instruct me in their standard low-fat, tiny portion, artificial-sweetener laden diet program.  Last year, on my first visit to a local weight loss surgeon, I was actually scolded for having had such a drastic procedure.  More recently, another surgeon seemed promising because he understood the procedure and it's possible long-term effects, but his staff didn't seem to have a clue how to deal with my issues. I am frustrated and tired of being made to feel like an oddity among WLS patients.  Has anyone else encountered a similar situation and, if so, any suggestions?

I recently moved so I have to start over again, but I did better with a younger doctor.  She didn't know a lick about DS, but she was curious to learn all she could about it, and we consulted together on my vitamins to determine what works.  Without seeing another specialist, start with some general recommendations that they may have never specified to you:

Vitamin D (and A, E, K) needs to be DRY, meaning water soluble, not dispensed in an oil filled gel cap.  Many of us take 50,000-150,000 iu per day.  This will make any doc or nutritionist flip out, for people can get toxic with D....regular people, not us.  

Calcium  needs to be Calcium Citrate to start - 1500 mg minimum.  Many take much more than that.  You should take it away from iron, zinc, or copper, for they compete for bonding, thus rendering them all useless if taken at the same time.

Many require annual (or more) iron infusions.

Thanks for your reply, Valerie.  I'm glad you have found a doctor to work with you.  The good advice that you have provided is what I have done all these years, and what I have tried to explain to the specialists I have seen.  Unfortunately, I live in a small, rural area with a limited pool of specialists, and I have not found one quite so willing to learn and adapt his/her standard practices to suit my specific needs; rather they seem to expect me to fit into their practices whatever way I can.  I have had to advise them what blood work to do, which vitamins work best, even how to interpret iron-related results as regards DS patients.  I would love to find a doctor able and willing to give me the follow-up I need, but as the DS is no longer a procedure of choice in this area, I'm finding that the bariatric surgeons, especially the younger ones, just don't want to know.  Maybe it's a futile quest.

Can your surgeon call in your labs and then you could consult with him by phone?

Hello Laura.  Thank you for replying.  Consulting with my original surgeon is not an option for me, as I have not seen him for 15 years.  Since surgery, my blood work has monitored by my local GP,  with guidance from me as to what tests I need and what supplements I need to fix the deficiencies.  It's just that now, as I am aging, I'd like to be in more expert hands.

I wondered about this myself before having the surgery.  Who will stay on top of my diet and vits as I age? 

I've been frustrated myself as I shopped for GPs and none of them know anything, and none of them want to learn about it either.  They drop it all back into my lap to handle!  So I've realized that I am on my own on this issue.  And so are you.  If you can't find a doctor that is willing to learn - than at least find one that does what you tell them to do.  You will probably have to be the captain of this ship for many years to come.  

You are the one with the knowledge on this.  I suggest you make a book about yourself.  List your vitamin needs, your lab list, and collect information about your surgery that include drawings of the changes that were made in your intestines.  Put this stuff together on a computer, then print it out for your doctor so they can put it in your file (or scan it into your records).  Do it now, while you remember it all and how it works and what is supposed to happen.  Then you will have it all collected and written down so later you can just hand them the book instead of trying to answer questions or fight for the care you need.

And if you don't have a spouse, I would educate a good friend also.  Someone who can speak up for you in a medical crisis. 

Thank you for your reply, jashley.  You are absolutely correct in pointing out that we are the ones with the knowledge about the DS.  The GP who has been following me for the past 15 years is someone who will do what I ask, as he recognizes that I am knowledgable about the procedure, supplementation, and necessary testing.  In fact, he has on occasion consulted with me regarding some of his other gastric bypass patients (without revealing their protected privacy, of course).  I am grateful to him for his willingness to work with me, but even he admits that he is sometimes "over his head" in dealing with my persistent deficiencies.  That is why I thought it was time to find a bariatric surgeon to take over my care.  

Your idea of preparing a "book" is a good one.  Indeed, I have for years provided such materials, including a description and diagram of the surgery, list of supplements, required testing, and medical history to every doctor I see, regardless of specialty.  I carry a copy in my purse.  I will take your advice and see that my family members get a copy and understand what it all means.  My daughter has had the same surgery, so she is the most likely candidate to be consulted should the need arise.

Great advice, jashley!  Exactly what I've done, I also have an "ICE" (in case of emergency) tube in my freezer at home.  It's a free program offered by our agency on aging, in cooperation with police and fire in my area.  The first responders are trained to look in the freezer for this tube of information if they are transporting someone from their home.  YOu can put whatever you need to in there, including phone numbers of people to call.  Another answer is a flash drive with the information stored on there, and carried on your keyring.

Or...you can wear the information around your neck on a chanin, and then, there's always Medic-Alert.

I'm 5.5 years out, and I was fortunate enough to have a PCP that alllowed me to teach her about the surgery.  In the beginning, I was settling for a RNY, but during the pre-op classes, I inquired about the DS.  The surgeon whose seminar I attended said he didn't do them, but his colleague did.

I went to her seminar, was evaluated, and went through the six months of pre-op classes, and got my DS February 25, 2010.

My PCP allowed me to educate her about my surgery, and has even brought in medical students during a few of my appointments (with my permission, of course), for me to talk to them about my surgery, with anatomical sketches and everything! 

There is a lot of self-advocacy needed with this surgery.  In the United States, DSers are oddities, because the RNY has been and is more widely performed.  The VSG (vertical sleeve gastrectomy), which is the top half of the DS, is gaining ground as a stand-alone bariatric surgery, but the DS (bottom half)  is generally reserved in my surgeon's practice for patients with 40 BMI and no obesity related co-morbidities, or 35 BMI with at least one obesity-related co-morbidity.  That being the case, many of us will remain exceptions to the rule. 

I am considering relocating, and I select the cities I like with consideration of whether or not they are in or near a city where a DS surgeon practices within a hospital's bariatric program.  As it stands right now, my program is a four hour round trip drive from where I live, and I was blessed to have a PCP who is a rarity when it comes to listening to her patients.  I have good communications with the bariatric center staff, and I have been able to manage my DS by being proactive and keeping everybody on the same page, at times, re-explaining my procedure and nutritional needs on an as-needed basis. 

In summary, introverts who will not step up to a doctor when needed, will not do well with this surgery.  Besides the dietary/supplement commitments, you have to also make the commitment to learn about the DS, even searching and reading medical journal articles when you find them, and passing that information on when you can.  You can place information about the DS into your own medical file at your PCP's office.  Make sure you obtain the surgical report from your DS surgeon, and place that into you file as well.   It is your legal right to do so.  That way, if needed in an emergency when you cannot speak, your medical chart has the information and the specifics of how you are connected.  It is the PCP's responsibility to educate his or her staff regarding the special needs of his or her patients.  I have also made up emergency folders for my car and home, with anatomical sketches and a copy of my surgical report, along with surgeon's and PCP's phone numbers.   Perhaps suggest to a new PCP that you conduct your own educational seminar with the staff regarding the DS, so they will know what to do should an adverse event related to your DS occur.