Malabsorption and side effects of meds

Hi, I'm 13 years post op. I haven't had an issue with keeping off weight but I have had some pretty bad health battles since then. I don't know if my surgeon passed away or just retired but I know I was supposed to follow up for life. Kind of hard when I was 22 when he did the surgery in his late 60s. He was in practice for himself and when I moved I no longer had access to another surgeon. I cannot get in touch with anyone from that office to save my life. I have had such a hard time getting my doctors to understand the malabsorption of it. I have explained that I had open rny/ rygb with extra sm bowel removed due to trauma from surgical sponges left in during a c section 3 yrs earlier that traveled up and caused lots of damage. They don't quite grasp how much surface area was removed. Thats where most meds are absorbed and distributed. I have provided literature, my lab work showing that I'm a malabsorber, have a cyp2d6 defect, contacts for informed pharmacists, etc. My med history is on file and they can even see where my surgery was done on GI scans in my file. I'm at my witts end in so much pain. I haven't been able to work in over 2 yrs. I have had so many seizures over the past few years. I'm ashamed to say that when they started medicating me for these, I didn't even think to research my bypass' effect on the meds. I just wanted relief of the seizures, I was willing to try what ever med they tried but they reay just made me toxic....having over 20 to 30 seizures some weeks. They were literaly killing me. I couldn't even think to communicate what I was going through. I am desperate to find out how to get my doctors to research and understand. I don't even think they read my files. I have emailed their offices so much info to help them and have them contact info for pharmacist who specialize in this and for the drug manufacturers themselves. I have asked to be treated hollistically or help guide me. They are all associated with Wake Forest University. Youd think with all the research at their fingertips, they would be more educated. I'm just getting told, "we have other GB patients that do fine with meds." If someone can offer me some advice or their personal experience with similar situations, please please share. I feel so alone and I hate trying to find new Drs that will accept my insurance and that are knowledgeable. I have done so much to provide them with all youd think they need but no one will even budge. I'm ready to start making complaints with the medical board of malpractice. If you are in the piedmont triad of North Carolina and can recommend good doctors, I beg you for their info. Thank you so much for any help. I hope and pray youre doing well and are getting the care and understanding you deserve and that you have a strong support team!

Reading this brought tears to my eyes. I'm so sorry about your seizures. I am young and Canadian, so I am not very knowledgeable with US insurance....but I 100% agree on reporting this to the medical board. You should not have to suffer! Sending hugs your way! I'm sorry I'm not much help.

Thank you. Continuing to run into this with that Neuro/ pain mgmt office. Once I heard that she commented to the staff through the patient portal, that she would not contact any pharmacist, they are not my doctor, she is, I changed my provider immediately. This was after sending her info on my malabsorption syndrome and calling to give her the number of a local pharmacist who is knowledgeable in treating post op patients. So, I switched back to an old provider I had who had left the practice for a few years. I guess I forgot what a whirlwind I went through with him. Tons of seizure meds and pain meds that he kept writing in ER formulations. I had hoped that bc he would at least run tests on me, that once I reestablished care, he would be open to review my 2 page med list and make adjustments and work as a team with other providers and a pharmacist to ensure that I was on the best meds for my body. Nope! I emailed him several pages of research and info on the malabsorption and showed formulations to help with the process bc he once again put me on ER pill formulations. Of course I'm going to advocate for myself. His nurse called and threatened to kick me out of the practice for sending too much info! I'm sooooooo done with them.

To those of you who have had or are looking to have this done.....always keep up with your records, explain the importance from the get go to all of your doctors that this surgery is MALABSORPTIVE/ RESTRICTIVE. This does not change. Make sure they are willing to take a team approach. Try your best to always be in touch with bariatrics and let them advocate for you. Please remember that some drugs can be toxic to you, some ineffective, some just won't work with your new design. Don't deal with the same BS I'm going through.....EVER! Always try to stay on top of research surrounding your surgery. Knowledge is POWER!

I can hear your frustration and exhaustion, I am so sorry.

I can relate. I am taking a medication for a chronic condition and it is not compatible with rny, and it also wreaks havoc on the stomach. It's a new medication manufactured by only one company.

I brought all of the literature to my surgeon and internist. I contacted the drug company to see if they had any studies with rny patients. I consulted with the pharmacist at the bariatric centre. I was approved for a VSG, which is good, but the surgeon fought me right up to anesthesia. No one would answer my questions about whether I should continue the meds through surgery, when to titrate back, how to manage its effect on my stomach, etc. No one knew the answer so I was dismissed, over and over. I had to come up with a plan myself. I'm an editor, not a medical professional!

I hope that you are able to find somone who will listen to you and partner with you as an advocate. I don?t know much about private health care but I hear the Cleveland Clinic is really good for 'alternative' cases, is that an option?

With all the research I've done, I might as well be a patient advocate for those going through this. I'm truly considering doing exactly that. May I ask what med it is? Perhaps you could private message me? I can try to see if I can find any particulars on it or have used it myself. Heaven knows I've been a walking pharmacy....ugh! Hope and pray you get the help you need. I'm trying to look up pharmacists who are well trained in these surgeries. Would love any input of any of you have any sources. I will absolutely share as I come across names. Wishing you well. Thank you for your reply. Although I hate that you're battling similar issues....I guess I'm grateful to not feel alone.

I can hear your frustration, I would be frustrated too. It's always hard to explain, our - What I call special snowflake status, to professionals.

Even though they may have some knowledge they don't get the ins and outs. And sometimes the matter how good they are, it is a little bit of trial and error to figure out what works.

Recently when my ferritin was dropping, it was great that the doctor noticed, but she immediately wanted to send me for an endoscopy and a colonoscopy. I had to explain to her that this is not an uncommon side effect of RNY and that was a little bit of overkill.

I realize you moved, but you're not exactly in the middle of nowhere, I would think there would be a bariatric office you could connect to. They at least might have specialists that they use, who also understand WLS. I know doctors don't like taking on somebody else's patients, but in the situation where you've moved I think they're a little more willing. As opposed to I'm just switching doctors in my own community.

Good luck

You better believe I've been on the phone ALL DAY calling pharmacists and bariatric and GI doctors all over. You would think the research hospitals would have pharmacists on staff that are trained to deal with the malabsorption but nope...I mean really? I'm not in nowhereville. We have the best med schools in the COUNTRY here in NC. Hope to hear back tomorrow to either get reestablished with a surgeon who's familiar with the differences in Roux en Y from 2005 vs now or to get some kind of guide faxed from a my doctors explaining the necessity of coordination with pharma and why meds should be adjusted. If any of you have some kind of guide that you were provided, I would love to see it. Thank you for your response. Wishing you a wonderful evening!

-Your Fellow Snowflake?

Good Luck... no small endeavor.