ValerieKGorman

Still beating "hunger" back with a stick and the medical staff doesn't believe it could be acid/inflammation....SO FRUSTRATED

14 posts in this topic

My bariatric provider is a center of excellence.  It is a part of a medical network called "Park Nicollet" that I've used for over 20 years and trust implicitly. But I am so frustrated by the bariatric department right now I'm beside myself!

 Almost immediately after surgery I felt incredibly hungry.  Now I've done my homework and I know that it's NOT actually hunger because sleeve gastrectomy removes fundus thereby having no ghrelin production.  No ghrelin=no hunger. What feels exactly like gnawing hunger is in fact NOT hunger.  What could it be then? Either acid or inflammation. Well, I must be the very first patient this practice has ever had that has experienced this unfortunate and apparently rare side effect of surgery.  So although they have prescribed me a PPI at the hospital (omeprazole 20mg then bumped to 40mg with RELUCTANCE) they don't believe that my continual struggle with hunger (even on omemprazole) has anything to do with acid or inflammation...nope.  You wanna know what they think?  I'm just plain hungry!  Yup!  The nurse keeps (nicely) insisting that once I go to more solid foods this problem will be resolved.  Can't they see that doesn't add up?  If filling my sleeve with solids was the answer then the problem would be ghrelin...which I don't have!  I've told her that I've read on various forums multiple times of sleeve patients having this issue and the solution to the problem is ALWAYS found in the use of PPIs and antacids.  She said, "forums are great but can't be considered above medical professional opinion." But these forums (you guys primarily but there are others) attest to other patients seeking medical professionals who are familiar with this issue and are recommending/prescribing ANTACIDS/PPIs which according to what I've read work 100% of the time. The fact of the matter is that they don't believe this could be the problem and solution.  If my only solution was stuffing my gullet with more food I'm in for a world of hurt.

So for now I'm taking omep 2x a day, 12 hours apart and if I am an hour late I'm STARVING...why would this not make it clear to the bariatric nurse that acid reduction is the ANSWER??? No clue.  And I'm also taking Gaviscon (over the counter) as needed when I'm drinking 0 cal liquids because that's when the hunger starts hounding me.  When I take one tablet, the hunger subsides almost immediately for a period of time...maybe an hour? She claims my hunger is subsiding at that time simply because I am putting something in my stomach (giving me temporary satiety).  What?! Um, that tablet chews down to next to nothing...maybe a quarter teaspoon at most.  It's not filling my sleeve whatsoever.  It's like they REFUSE to acknowledge my "claim"...like what I'm saying couldn't possibly be the problem. It's like they're in this closed system...no checking online for this problem, no looking beyond their own practice to see if what I'm saying has some validity. I could send links and even a video of a bariatric surgeon talking about this!! But I don't think they'd be willing to look at it.

I'm beyond frustrated.  I'm trying to push and advocate for myself which feels a little scary because what if they just "shut down" and push me off even more because they get mad at me for my dogged insistence that they consider my claim as valid?! I've never done this with medical professionals before so I have no idea what will happen to my care as a result.  Sorry to dump but I had to share this with people who "get it".  I think I need to maybe consider different options but what would they be? Do I go up the chain of my own network to the surgeon (so far I've only been able to speak to a bariatric nurse about this...) or would a bariatrician in their department be better. If I sidestep my nurse will I create problems for myself in the future??  I know there are stronger and alternative types of PPIs out there and if they're not willing to even work with me I need to know what to do next.

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I talk to several people in my program when trying to figure things out, as well as people here, and offline. They don't always  agree with each other, or agree with my own experience either. I always give more credence to people who've been through what I want to learn about.

ValerieKGorman likes this

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No the answer is not always acid -  it usually is though.

I mention in my last post about it and its my common retort -  when you are on the beginning stages and not eating solid foods it simply can be that fact.  If you are still on liquids or pureed and not getting solid protein in - then that is very likely the issue.  I assume you start soon being almost 4 weeks out.  It is not so much the fact they are telling you to eat more, they are saying you need more SOLID things.  It is very legit and likely.  You have to remember you are still very much in the healing stages.  Don't judge these first weeks as they rest of your life.  Progress to more solid food when allowed and just give it some more time.  I realize you are frustrated and at wits end right now but I just want to remind you this is very very very likely just a hurdle to get over in the healing/learning process.

Clickin, Raeme, tkk54915 and 1 other like this

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Have you had a post op check up with your surgeon?  Is there a way to talk to someone other than the nurse in your practice?

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2 hours ago, Jolls said:

Don't judge these first weeks as they rest of your life.  Progress to more solid food when allowed and just give it some more time.  I realize you are frustrated and at wits end right now but I just want to remind you this is very very very likely just a hurdle to get over in the healing/learning process.

I totally agree with Jolls (as usual).  Hang in there - it almost certainly will get better.

Raeme and ValerieKGorman like this

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6 hours ago, Jolls said:

No the answer is not always acid -  it usually is though.

I mention in my last post about it and its my common retort -  when you are on the beginning stages and not eating solid foods it simply can be that fact.  If you are still on liquids or pureed and not getting solid protein in - then that is very likely the issue.  I assume you start soon being almost 4 weeks out.  It is not so much the fact they are telling you to eat more, they are saying you need more SOLID things.  It is very legit and likely.  You have to remember you are still very much in the healing stages.  Don't judge these first weeks as they rest of your life.  Progress to more solid food when allowed and just give it some more time.  I realize you are frustrated and at wits end right now but I just want to remind you this is very very very likely just a hurdle to get over in the healing/learning process.

Thanks for your feedback.  I am only 2 weeks out.  One more week of full liquids then on to puree. Interestingly, I spoke to the nurse today and she told me they have NEVER had a patient experience hunger like I am.  Not once.  And one of the bariatric surgeons was asked by her if he had ever known of a patient in his previous practice that he came from (which is larger than this one) and he said, no, never.  So I am the very first patient they've ever had with this problem...which sounds crazy to me but maybe this physical reaction to surgery is truly rare.  Just because I read about it a lot online doesn't mean it's common.    

She passed my concerns on to my bariatric surgeon so I should hear back from him tomorrow I'm guessing.  Even if they don't believe me (that it could be acid or inflammation of the sleeve) that's okay, if they're just willing to work with me and maybe play with the Antacid/PPI Rx a little to see if I can find some relief, that's all I want.  

It's no fun being the one where things go wrong....and stump an entire medical staff with my problem. 

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5 hours ago, Cheesehead said:

Have you had a post op check up with your surgeon?  Is there a way to talk to someone other than the nurse in your practice?

I have not...that's not even part of the follow up protocol.  The highest I'll get is a bariatrician visit at 6 months.  But because I asked, they passed my concerns on to my surgeon and I should get a call from him tomorrow between surgeries....I feel guilty bothering him honestly...

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For future sufferers:

I'm going to put in a video link here if I can.  I figure in the future, some poor soul like me will be madly searching the internet for answers as to why he/she is STARVING after sleeve surgery. They may come across this conversation as I've found conversations from years ago, and they can watch this video.  It is very encouraging to me because it is a bariatric doctor addressing the issue (giving validity to it) and suggesting the solution (antacids). 

  https://m.youtube.com/watch?v=ndkZudte6J0

I will also add that he recommends as a PPI Nexium 20mg capsules taken twice a day on a different video and he has also recommended Gaviscon (otc antacids) to other suffereres via email when they have written him with this problem.

Lastly, a woman several years ago took Vitamin E (400iu) daily (vitamin e acts as an anti-inflammatory) and all "false hunger" disappeared almost immediately and the effects lasted.  I'm not going to try that yet because I don't know how that would impact my new sleeve.  Maybe down the road when it would be safe.

CoTN likes this

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I sure hope you get relief soon, Valerie..  don't feel guilty; get answers!!!

ValerieKGorman likes this

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My surgeon has heard my concerns via the nurse and had asked me to see a bariatrician tomorrow morning at 7 am. Hopefully it will be a productive meeting. In the meantime, if I take 1 gaviscon every hour the "hunger" stays mostly away although I still feel a bit of an ache...like a physical awareness that my sleeve is there but it's very tolerable. 

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Good luck!  Hope they can find a solution!

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How are you doing now?  Hopefully better. 

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On 1/11/2017 at 8:32 PM, ValerieKGorman said:

My surgeon has heard my concerns via the nurse and had asked me to see a bariatrician tomorrow morning at 7 am. Hopefully it will be a productive meeting. In the meantime, if I take 1 gaviscon every hour the "hunger" stays mostly away although I still feel a bit of an ache...like a physical awareness that my sleeve is there but it's very tolerable. 

I don't recall ever seeing the term "bariatrician" before, so I googled it. According to one article at http://www.obesityaction.org/educational-resources/resource-articles-2/medically-managed-weight-loss/what-is-a-bariatrician

What is a Bariatrician?
by Nicola Grun

To view a PDF version of this article, please click here.

Bariatric physicians are doctors who specialize in helping patients lose weight without surgical intervention. Bariatricians treat obesity and related disorders.

Many people who hear the term bariatrics automatically think of “stomach stapling.” Googling the word produces “barometer,” or an atmospheric pressure gauge. Bariatric medicine is the art and science of medical weight management. The word “bariatric” is derived from the ancient Greek root “baro,” meaning heavy or large.

Bariatric physicians, also known as bariatricians, specialize in the medical treatment of obesity and related disorders. Bariatricians are often confused with bariatric surgeons who perform weight-loss surgeries. Most bariatricians incorporate weight management services into an existing family, internal medicine or OB-GYN practice.

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On 1/15/2017 at 10:31 AM, Res Ipsa said:

How are you doing now?  Hopefully better. 

Hi Res Ipsa,

Thanks for checking in on me! Soooo...I met with the bariatrician.  Such a nice gal.  She was totally willing to work with me and run with my belief that this was acid/inflammation related.  She agreed that if taking Gaviscon took the "hunger" away then it wasn't hunger and that the solution is probably found in playing around with different antacids. So, she changed my PPI Rx from Omeprazole to Nexium. For now she has me on 40mg once a day, in the morning.  It has greatly decreased my "hunger" where I only feel it 5-6 times a day instead of basically allllll day long. Today has been rougher...been "hungry" more and not sure why.

She asked me to email her feedback so I just did. She told me in the office that they could bump up the dosage even more so I'm hoping we can bump it even higher to get rid of the "breakthough hunger" once and for all. It felt so good to be listened to and begin to experience some RELIEF. 

Res Ipsa and Cheesehead like this

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