ValerieKGorman

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

23 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.

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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.

tkk54915, Raeme, tmcgee 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.

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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.

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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. 

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Update. My Nexium dosage has been bumped up to 40mg 2x a day. I'm to do this regemin for 10 days then back it down. My "hunger" is now only a slightly annoying gnat that flits by from time to time. As I get close to time for my next dose it definitely ramps up. I still keep gaviscon on hand for occasional breakthrough hunger. It was definitely worth the fight to find an answer. I would be in misery if I was still intensely hungry all day. Im excited to help others in the same situation because I know how horrible it is. 

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I am 6 days post op and have hunger pains.  Now taking 20mg prilosec twice a day and it helps but towards the end I'm dying wanting to chow down on food.

How are you doing now that you are "healed" and eating regular foods?

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I am so glad I found this! Sleeve was performed 3/6/17. Ever since, I feel hungry all the time. I didn't think I should be feeling this way. I go for 1 week postop on Thursday, so I definitely will be talking to them about this problem. Thanks for sharing your experience!

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On 1/10/2017 at 10:54 AM, ValerieKGorman said:

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.

I had the EXACT same response from my team..... They tried same acid meds you named and it did nothing so they said it wasn't acid..... My husband has struggled with acid reflex for years and he made me try his prescription, Lansoprazole generic name not the 15 milligrams you get over-the-counter but the 30 milligram strength twice a day.... Stopped it within 24hrs....

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On 3/14/2017 at 11:53 AM, Jodi1977 said:

I am so glad I found this! Sleeve was performed 3/6/17. Ever since, I feel hungry all the time. I didn't think I should be feeling this way. I go for 1 week postop on Thursday, so I definitely will be talking to them about this problem. Thanks for sharing your experience!

Jodi, have you found some relief??

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I'm curious too since my folks aren't very concerned about my "hunger" either.  It's an otherwise great center but they just seem to discount these types of symptoms.

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On January 10, 2017 at 10:34 PM, ValerieKGorman said:

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...

That's insane that they don't have any post op schedule! My surgeon does post op visits at 3 weeks, 3 months, 6 months, 9 months and 1 year. Then once a year after that.  You shouldn't feel guilty for questioning them...you're not doing anything wrong! You need answers and they are supposed to provide them. I pray that things get easier for you once you start solids.

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Sorry, I just read the date on this post. How are you doing now?

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Thanks for sharing your struggle.  The Youtube link was very interesting, and in a way, validating.  The surgeon reduced post-op hunger to swelling and acid production.  I think you're doing the right thing by pushing for answers (which may never be satisfactorily done).  Priority #1 is to rule out the potential for physical problems.  I applaud you for being your own advocate, especially if it is new for you.  I'm a medical professional.  If you stay polite, the medical staff will respect you for pushing for answers. 

I'm having a similar perception of hunger since VSG (10 days ago).  Even during my 1st post-op evening, my stomach hurt like hell, but my brain was signaling ravenous hunger alerts!   I was surprised, confused and distressed by it.  My hunger was commensurate with 3 weeks of Ensure-torture but I started wondering about the adequacy of my VSG.  I spoke with the bariatric program nurse who dropped by the next day (who also had VSG a few years ago).  I couldn't articulate it very well and dropped the subject.  But, the hunger has persisted since surgery.  It's hunger: distinct from surgical pain and gastric reflux.  

Often, explanations fall short of the reality of a medical problem.  Since we are body/mind/spirit beings, reducing a problem (or solution) to a single variable inadequately encompasses the complexity of being human.  Hunger is so complex, it can be argued from the vantage of body, mind, or spirit.  I think ghrelin is only one hormonal aspect of hunger.  No one has figured out the physical complexity of hunger or obesity.  The more we learn, the less we know.  

I have a history of regularly eating until I was uncomfortably full.  I disobeyed my gut instinct so often that I had to have stretching-fullness in my stomach for my brain to recognize that I was no longer hungry.  So maybe my post-op hunger pain is like an amputee's phantom pain: my amputated stomach is still seeking stretching-fullness (even with less ghrelin production).  That's my brain-explanation of my perception of hunger.  My hunger is miserable and I hope it resolves sooner, rather than later.  I'm gonna add regular PPI to see if that gives me some relief.  

Razum

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