Is there anyone here that's post op 7+ years having health struggles, what are they?

[Lookin4answerspostop11+years 2]

Hi yes in 2017 I had to have 8 Iron infusions in one year. I was at a seizure threshold level. My iron is low normal now again but ferritin is bottoming out even on supplements prescribed by online walk in dr. so is my Vitamin D. also prescribed by the walk in dr who has temporarily taken me on until I find someone. there is no one anywhere near my area accepting patients as a NP or primary care physician. Ive looked into that site. Also the GI's outside of the GTA where I am are at a loss and just cut me loose when I did see one a few years ago and when I asked for a second opinion from another GI he refused and said he doesn't give second opinions.

I finally found this ohip covered online walk in dr. who took me on. things are finally starting to move as far as seeing specialists and tests, but Im worried about the time its taken to find him and also get in to specialists who can and are willing to take on complex cases as Im finding a lot of drs just don't want to. One ER nurse just two years ago when I explained my diagnosis, said "Ya you are the type of patient every doctor hates to see walk in the door"....

Its been a brutal struggle.

[Lookin4answerspostop11+years 2]

to receive assessments and help I mean, up until just two months ago finding this online ohip walk in dr who has taken me on, at least for now.

[Lookin4answerspostop11+years 2]

Hi,

We have a severe shortage of primary care physicians, Ive checked and yes there are a lot in GTA but Im north. I also was sent and paid by ohip to get the surgery done down in Rochester NY because the wait here back then was way too long. So OHIP covered my medical cost for follow up but now travel expenses, hotel overnight etc. I did do the 5 year trek to Rochester but because by then there was a catch up with patients having WLS in the GTA, no one was willing to take me on because they were only seeing their clients that had surgery in Ontario. I did, through a contact get in for a consult with one WLS dr. but he said because my weight loss is maintained, and ohip doesn't cover follow up with him I needed to see a GI. finally convinced one walk in dr. to refer me to a GI because of my symptoms, colonscopy found a spot of undeferentiated colitis, mildly increased lymphocytes, and a precancerous polyp was removed with other polyps. He ended up closing practise or moving and a few years later again GI symptoms, another walk in dr referred me to another GI who assumed my total abdominal swelling was 'probably ibs' said everyone gets all uptight about precancerous polyps but they aren't a big deal, and he was willing to do an oral scope and did but not a colonoscopy. I said my issue isn't up top its in my abdomen. but he refused. my pouch is still its original size, staples look good and no esophagitis. I asked him to refer me to a dr I had a connection through another acquaintance but then he said oh sure Ill refer you I know him we went to medical school together, the second GI replied he doesn't give second opinions. The online dr is shocked at how I seem to have fallen through the cracks at best ... that's the reason he was willing to take me on... he said that the medical system is great when it works and when it doesn't its very difficult to get help. Im very very grateful I came across him in November. Maybe I will find answers in unlikely places as I did with him (a shot in the dark that worked great, finally), I was hoping this forum may be another unlikely place to find more answers or some possible directions to pursue. No I don't have any coverage through private insurance, nor through odsp as Im on cpp disability and they provide no medical coverage (odsp does but im ineligible because I qualified for cpp).

I appreciate those suggestions, they are great. Sadly It just doesn't work the same when living outside the GTA area.

[Changes4Life 8]

Hi, it sounds like you have been through so much! I'm nearing 10 years postop and I have had several health issues as well. I too have had an interesting journey. Although, I'm very grateful for my surgery there have definitely been surprises. I had no health issues other than obesity prior to the surgery and took no medication other than a Multivitamin once a day and Tylenol occasionally for fever or headache. I knew if I didn't make a change I would find myself with many issues so I decided on gastric bypass. My teeth and bones have taken a beating as my body continues to leach the Calcium from those locations although I do take my calcium supplements. I use enamel mouthwash twice a day recommended by my dentist to try to assist. I have to be very careful with brushing 3x's per day. I also have been on Iron infusions and B12 supplements for years trying to keep those levels adequate. I think the hardest part has been postprandial hypoglycemia which caused some weight regain, fainting spells, trips to the ER and ICU, and lots of tests to confirm that diagnosis. My endocrinologist and I are working on my second medication in order to balance my reactions. Dietary changes are not enough to stop it. I can no longer drive and work from home so that I have the ability to check my blood sugar and eat every 3 hours. It has been a journey and although I have faced many different challenges, setbacks, and testing I still am grateful for the tool I have been given. I found during this journey that you aren't alone. If you are experiencing something most likely there are others out there struggling to learn the same information. Being able to ask questions, investigate, and speak with others is a very powerful tool for knowledge.

[Lookin4answerspostop11+years 2]

hi Changes4Life,

I really appreciate your candid and kind result. Its awesome to have you post.... Im feeling much less alone in all this, Im so sorry you as well have been through so much and grateful your still ontrack and thankful for the life its afforded you, even though its been a very tough go at times!

Im definitely happy I got my life back through the surgery, yet if the complications take my life that would be brutal now as a solo parent of two younger kids.

I just read a neurology article that states most patients do best with nutritional supports given by injections and not orally. That a large percentage - up to 20% develop neurological disorders even when taking appropriate oral supplementation. This I didn't know about except that it would be prevented by oral supplementation... this article states this isn't so for 2 out of 10 patients. I also learned the neurological disorders are related to how much you loose and how fast, meaning the majority of issues come from loosing the weight in less than 1year. I was 450 pounds and at my lowest was down 293. I lost the weight extremely fast. Ive kept all but 25 off in almost 12 years.

to add to my diagnosis list;

They just discovered my colon in entirely air filled distended and dilated without air/fluid levels, thickening and no obstruction, meaning now bowel disease but its of unknown origin and significance so its being investigated. it can be related to neurological disorders and vagus nerve issues that eventually cause a paralyzed intestinal system. Im praying and hoping for the best outcome possible.

Im just also putting all this out there in case any of the people on this site themselves with any similar struggles and if so may be able to help direct their drs to a 'possible' association with bariatric surgery post complications in order to receive help that's more targeted to correction in a more effective and efficient way than having years go by with a lot of I don't knows. I hope my post not only connects but also helps others in their after surgery care should odd seemingly unrelated symptoms arise and they don't know where to begin... I definitely had no idea any of this except depleted Vitamins and minerals could be a play.

im definitely not against surgery!!!!!!!!!!!

just in my case I hope what drs have missed and if all these accumulated health struggles - not present pre-surgery so these possible and (rare?) complications of post bariatric surgery, as im now reading in literature, that this surgery does not end up shortening my life...

if it does only because of a lack of awareness by patients/drs/and specialists, simply because it took to long to figure out the brain/body system complicated connections to the gut or in my case it wasn't fully disclosed or known at the time,

I pray this information will help someone in the future who is also seeking answers to complicated health struggles. I've been actively seeking help since 2017, the symptoms have now become physically undeniable;e and hopefully I can be helped in time to continue onward with my beautiful life being present to be involved with my incredible children as they grow up.

im thinking of you all and just pray that if someone finds themselves with mounting medical complexities this information will help you advocate for yourself and possible change in the medical systems to provide in my case, better post op care and immediate investigations with this many unexplainable medical complexities post surgery. im glad I had the surgery.... I just want much more time her to enjoy life. just aceesperate mom seeking help and community.

[MariaC6 45]

I had VSG on 8/27/20. My sister is a PACU nurse and warned me not to get the bypass or similar surgery because she has seen too many bariatric patients lose the weight but develop severe medical related to malabsorption that the bypass produces. She even told me that having the bypass shortens ones lifespan by 7-10 years! I have NO clue where she got this information but she scared me into having the sleeve rather than the bypass. So far I am doing great with the sleeve but again, I’m only 6 months out.

[catwoman7 11,212]

16 minutes ago, MariaC6 said:

I had VSG on 8/27/20. My sister is a PACU nurse and warned me not to get the bypass or similar surgery because she has seen too many bariatric patients lose the weight but develop severe medical related to malabsorption that the bypass produces. She even told me that having the bypass shortens ones lifespan by 7-10 years! I have NO clue where she got this information but she scared me into having the sleeve rather than the bypass. So far I am doing great with the sleeve but again, I’m only 6 months out.

that used to happen with the old intestinal bypass they did back in the 60s and 70s, but I've never heard that about gastric bypass. It's a very different surgery. Sounds like this info didn't come from a very reliable source, or it would be widely known. Since she works in a hospital, the issues she's actually seen in person are probably severe cases since they require hospitalization, but that doesn't mean they're widespread. They're likely very rare or we would have heard more about this. They could also be people who don't take their supplements or meet their Protein requirements, too. There are greater consequences of that for bypass patients than there are for sleeve patients (although it's important for both to follow the rules). (I should add that there are some people who can't absorb Iron from tablets and need to have occasional infusions to keep their iron levels up - so those people have had iron issues even if they were following the rules and taking their oral iron supplements as directed. They're a minority, but it does happen. Most other malabsorption issues are due to people slacking off on their supplements)

Edited March 7, 2021 by catwoman7

[Lookin4answerspostop11+years 2]

So glad you are doing so well! I know this post feels like a downer to most yet I think it’s a vital discussion so that all info is on the table to make a truly informed decision. I’m not saying all my conditions are caused by my bypass, but I’m saying all these seemingly unrelated type of complexities especially when following all regiment guidelines is a very vital discussion to have for those considering surgery and those who have had it. Information is power.

I hope this thread balances information to provide a very clear picture of all incredible benefits and very scary possible or likely consequences even while following guidelines. It’s vital for informed consent knowing ahead of time. I know it would not have changed my decision (like you) to have the hope of my life back, yet if I had this info I would have been pushing much harder for bariatric specialists to be involved. Our governance g need to provide this coverage for a specialist (as they would any specialists for complicated surgery patients in Ontario!). This surgery radically changes everything for good and sometimes has complex complications only a bariatric dr. Would be privy to connecting some of the possible and connected health effects that lead all the way back to surgery snd weeding out causes that have zero to do with the surgery.

I believe that access and info is vital for self empowerment and advocacy.

[Lookin4answerspostop11+years 2]

Just want to add, that I was told there are very very few people on here who are post surgery by a lot of years. If all these complications there are now 4-5 responses to confirm their significant struggles. I think it’s important to note that I was told on this thread that its very rare for old timers like me to be on this site, there are an extreme few if any.... so I’m wondering why then there now several responses 4-5 of confirmation of known (by personal experience or through knowledge of someone else), severe complications? This to me says it’s not be as rare as at a glance assumed? Maybe there are more benefits to people and to the medical system to disclose these fewer side effects than state them outright? Maybe by discussion these sites can provide information not through the medical system but through experiences that provide a balance accumulation of data both of great benefits and possibly very difficult complications? It’s only personal experience, I’m not, nor do I think the others are saying this surgery is wrong, we want to share information, information never presented with not enough follow up (in my case) by a bariatric specialist who would know. 5 years follow up is not ok (Ontario) for so many reasons!

it’s not meant to threaten or cause misinformation, as that would never be stated in the benefits discussion, it’s just experiences that people want to also share and connect through.

yes getting my life back has been extraordinary!

Yet maybe if more follow up, more discussion forums, more stat and data kept post 5 years here in Ontario, maybe just a lot more transparency would be not so threatening but empowering, no matter the choice or the outcomes any one personally makes.

?

I think everyone should feel safe to speak of what they know or have studied, experienced, questions, and what they’ve heard in clinics and through loved ones, ... it’s up to each of us to look at everything, take what information we need to be empowered.

[catwoman7 11,212]

15 minutes ago, Lookin4answerspostop11+years said:

Just want to add, that I was told there are very very few people on here who are post surgery by a lot of years. If all these complications there are now 4-5 responses to confirm their significant struggles. I think it’s important to note that I was told on this thread that its very rare for old timers like me to be on this site, there are an extreme few if any.... so I’m wondering why then there now several responses 4-5 of confirmation of known (by personal experience or through knowledge of someone else), severe complications? This to me says it’s not be as rare as at a glance assumed?

I don't think people 5+ years out are likely to come back unless they're having issues, so it may look like problems are more widespread than they actually are. Most people seem to leave these types of sites after the first couple of years post-op. I'm not saying these complications don't happen - we all know they do - but I just question how widespread they are. You can't really base it on how many people post on sites like this, since they may not be a representative population.

the other thing I want to say is that techniques have improved over the years. For example, "candy cane syndrome" happened to some people who had bypass surgery 10+ years ago. They changed the way they do the surgery so that that doesn't happen anymore. They also used to do a lot more bypasses as open surgeries, and those are more risky than laproscopically done surgeries.

[ms.sss 15,581]

2 hours ago, catwoman7 said:

I don't think people 5+ years out are likely to come back unless they're having issues, so it may look like problems are more widespread than they actually are.

...further to this: in my case (i'm 2+ years out), I have this nagging feeling that I spend way too much time on here (that, and Mr. often remarks that I spend way too much time on here 🙄) that the idea of just "moving on" may be in part behind the lack of longer-term vets. The majority of the discussions on here are more catered to newbies or those just entering maintenance (and, as you said those vets that are looking to address issues), and there is only so many number of times one can say "it's normal" before it just loses its lustre.

Though I did thoroughly appreciate the thoughts and comments of the few longer-timers when I was first coming up, so I use that as a reason to stick around (that, and I'm totally addicted, lol).

[Lookin4answerspostop11+years 2]

I totally agree, i think what you’re saying goes both ways... no one can say how prevalent it is or it isn’t... all we can do is state our experience like everyone else. I was just merely addressing the comment that if it’s common they’d here about it, not necessarily. I’m finding evidence all over the internet in scrientific studies in medical journals like JAMA that correspond to a more broader issue with these surgeries (including less than 10 years post op) and there is a lot of complications still present even with ‘modern’ advancements.

im not saying it equates common, but it’s equating enough stir in medical communities like neurological journals that warrant studies that have been done. If it’s very uncommon and rare... these journals would not have enough data to publish in the medical journals I’m reading.

I think it’s fair to say that if there’s enough complications to warrant different medical specialities (for ex. The neurology paper) to see enough repeated visits by post bariatric surgery patients to warrant investigations and studies than maybe it’s ok to breach the scary topic and ask more questions, seek more clarity and transparency for everyone’s sake. Medicine is a business. Even in a free healthcare state like Canada. And business is business. Like cobalt in hips and then that poisoning those eith these hip replacements, so the companies then coat the cobalt, yet it hasn’t solved all the issues even knowing there’s still issues.

im not ok with not knowing everything I can previous to any surgery and because I fall within whatever numbers are declared as a minority percentage, not getting full disclosures, just because my life doesn’t matter as long as the majority is somewhat ok....

still not saying bariatric surgery is bad at all... I’m saying full disclosure is paramount, and it should not have to be sought after by the patient post surgery, it should be a streamlined process of knowledge snd medical care continuity.

I find it interesting how people are really riled up at just the questions I put out there. Why does it cause so much intense feelings. Why are quite a few respondents so quickly defending a surgery when I’m not attacking individual choice but just stating my experience and seeking my own health solutions.

are people scared? I’m not judging at all... I’m being curious yet people seem very defensive and fearful of my struggles.... instead of being curious, most people who have responded are defending something I’m not accusing but I am definately curious as I said about a possible relationship between my complex medical issues that did not exist prior to bariatric surgery and are now mounting.

just a mom, a post bariatric surgery patient, seeking with curiosity any possible connections here, as I’ve sought in other areas, reasons that could explain this... it’s interesting that this forum seems to be the only one very upset with my curiosity about others who possibly might have had or are having similar complex medical issues.

im just a mom seeking solutions to a complex medical mess to I can live my life well and live a long healthy life with my kids. I am not attacking bariatric surgery as it seems others having feelings that I am... I’m simply seeking others who may be able to shed some light on my own individual personal experience with complex health issues post surgery, that’s all....

just seeking answers so I can get better in every place I can think of, there’s no one else to help me do it... so here I am... but seems as though everyone doesn’t even want me to ask such questions... it creates too much fear... I get that... I’m afraid too... I’m in the middle of this.... alone and trying to put a complex puzzle together. I’m not attacking or saying it’s wrong yet people are responding as if that’s what I’m saying or insinuating. I’m here because all of my issues are post bariatric surgery snd I’m just asking a simple question;

are there others on this forum experiencing complications like me, do they think or have they found out that it’s from their surgery or it’s complications or that is caused by something else, and how was it resolved, how did they become healthy again...

maybe no one knows, maybe the question then becomes to others; why is my curiosity so threatening to even ask these questions here? Why is my curiosity not met with curiosity but with obvious fear in the act of defending a medical practice that I haven’t accused as the cause... just being curious if it might be.

[SleevedK 25]

I think we definitely need to be honest that these surgeries can cause problems and I encourage long time surgery vets to be open about what they have dealt with.
I started out getting the lap-band in 2003. I read a ton of patient experiences on email lists, ObesityHelp, and online forums. I read medical journal articles about it. I read about how it had been used in Australia with good results for some time before that. I thought I knew what I was getting into. Most people at the time really thought that the band was a low-risk, easily reversed surgery.

By the time I had my band removed over 10 years later, it was clear that it is NOT a good surgery for most people and that the majority of people end up having problems from it. What seemed like the safest option at the time ended up being probably the worst option for most of us. Now most surgeons no longer put bands in at all.

When I had the band removed, I switched over to the gastric sleeve, because again it seemed like the lowest risk option. Now I am dealing with a hiatal hernia and learning that it is pretty common to tell sleevers who have GERD or hiatal hernias after surgery that they should just get an RNY. I never wanted an RNY because I was scared of the potential complications. I am still hoping and praying there will be another option, but it is scary to think that I might be forced into yet another surgery with yet more possible complications. While I know many people do great with the RNY for many years, I also know people who ended up with awful complications and have suffered. I am tired of taking these risks.

Having 5 year data on patient outcomes is great for a research study, but for the patient that is not necessarily enough. When it is a permanent surgery that you have to live with for the rest of your life, it is not much consolation to know most people do great at 5 years if you are one of the unlucky ones who has problems 10 or 15 years later.

[catwoman7 11,212]

3 hours ago, SleevedK said:

I started out getting the lap-band in 2003. I read a ton of patient experiences on email lists, ObesityHelp, and online forums. I read medical journal articles about it. I read about how it had been used in Australia with good results for some time before that. I thought I knew what I was getting into. Most people at the time really thought that the band was a low-risk, easily reversed surgery.

By the time I had my band removed over 10 years later, it was clear that it is NOT a good surgery for most people and that the majority of people end up having problems from it. What seemed like the safest option at the time ended up being probably the worst option for most of us. Now most surgeons no longer put bands in at all.

When I had the band removed, I switched over to the gastric sleeve, because again it seemed like the lowest risk option. Now I am dealing with a hiatal hernia and learning that it is pretty common to tell sleevers who have GERD or hiatal hernias after surgery that they should just get an RNY

I didn't go for the sleeve because of some of the reasons you stated for the band. At the time I had surgery, the sleeve was still fairly new, and I had this fear of it turning into "Lapband 2", so I wanted to go with the older, more researched and understood surgery. I think at this point the sleeve has been around long enough and been done enough that I'm not sure I'd have the same concerns (although I probably would have gone with RNY even now because I had terrible GERD before surgery), but at the time, I didn't want to go with the latest trend.

[catwoman7 11,212]

4 hours ago, Lookin4answerspostop11+years said:

I find it interesting how people are really riled up at just the questions I put out there. Why does it cause so much intense feelings. Why are quite a few respondents so quickly defending a surgery when I’m not attacking individual choice but just stating my experience and seeking my own health solutions.

are people scared? I’m not judging at all... I’m being curious yet people seem very defensive and fearful of my struggles.... instead of being curious, most people who have responded are defending something I’m not accusing but I am definately curious as I said about a possible relationship between my complex medical issues that did not exist prior to bariatric surgery and are now mounting.

not fear. i just remember reading posts like this a week or two before I had surgery, and they frightened me so much I almost canceled it. So I'm just trying to provide a somewhat more balanced perspective. Yes - I know these issues exist for some. But they don't for everyone. I just don't know how prevalent they are. We've been told they're not common - but I honestly have no idea. There are very few long-time vets on internet forums, and I suspect most come back because they're having complications and are looking for advice or support. Most people who don't have issues seem to drop off after a year or two, and we never hear from them again.