Weight Loss Surgery - Doing well with the surgery, BUT ...




jiffypop
02-15-2014, 03:17 PM
let's talk about some of the challenges we're facing. Those of us who've been living with the surgery for awhile know that it's not just about what goes into our mouths. There are a lot of other emotional, physical, health things that go on, and we have to not only deal with our loved ones, but we also have to navigate a healthcare system that's not always understanding.

Arctiveadventurer - this one's for you. Something you said in your last post really resonated with me, as i've been experiencing something similar. You and I CANNOT be the only two who've had issues like this.

PAY ATTENTION HERE: this is not a thread that's focused on doctor-bashing. There are good ones and bad ones everywhere, but we ALL struggle with communicating with our docs and getting them to pay attention to what we're saying, and most important, to actually BELIEVE what we're saying and to help us act on it.

Here's my deal: i lost a total of 285 pounds after surgery, then regained about 80 due to ridiculous life stress that no one should have to endure. And it's now gone, and I'm still losing.

The issue: I've lost the weight by being unable to keep food down. When i first told my doc, we agreed it was probably due to stress and to give it more time. The next time, his response was : but you're losing weight, right? I told the cardiologist. he congratulated me on the weight loss. This has been going on for more than a year. And i've posted about it on this forum.

FINALLY, now that i've lost 90 pounds this way, they've both looked at me and said 'something is wrong here.' DUH!!!!! I now have to get scoped but i don't have the money for the co-pay until my tax return comes in.

What's the deal here? I've CAREFULLY chosen these docs. The primary knows about the surgery, has even SEEN it done, has pretty much kept on top of the literature. The cardiology practice is at a great tertiary care hospital that is involved in weight loss surgery clinical trials. THEY KNOW THIS STUFF.

WHY is it OK for me to lose weight by not keeping food down? WHY is it OK for me to compromise my health by doing this?

Find a new doc? perhaps, but since these guys were actually screened and carefully chosen, they're the best of the bunch around here.


Valkyrie1
02-15-2014, 06:26 PM
I haven't had WLS, but I want to say I think you're an amazing woman, and I hope you find a solution to the issue you're facing. It sounds really tough.

I send you my kudos and support.

Tai
02-15-2014, 08:24 PM
I haven't had WLS either but wanted to send some supportive thoughts your way Jiffypop. I hope this gets resolved very soon.


mars735
02-16-2014, 10:41 PM
let's talk about some of the challenges we're facing. Those of us who've been living with the surgery for awhile know that it's not just about what goes into our mouths. There are a lot of other emotional, physical, health things that go on, and we have to not only deal with our loved ones, but we also have to navigate a healthcare system that's not always understanding.

Arctiveadventurer - this one's for you. Something you said in your last post really resonated with me, as i've been experiencing something similar. You and I CANNOT be the only two who've had issues like this.

PAY ATTENTION HERE: this is not a thread that's focused on doctor-bashing. There are good ones and bad ones everywhere, but we ALL struggle with communicating with our docs and getting them to pay attention to what we're saying, and most important, to actually BELIEVE what we're saying and to help us act on it.

Here's my deal: i lost a total of 285 pounds after surgery, then regained about 80 due to ridiculous life stress that no one should have to endure. And it's now gone, and I'm still losing.

The issue: I've lost the weight by being unable to keep food down. When i first told my doc, we agreed it was probably due to stress and to give it more time. The next time, his response was : but you're losing weight, right? I told the cardiologist. he congratulated me on the weight loss. This has been going on for more than a year. And i've posted about it on this forum.

FINALLY, now that i've lost 90 pounds this way, they've both looked at me and said 'something is wrong here.' DUH!!!!! I now have to get scoped but i don't have the money for the co-pay until my tax return comes in.

What's the deal here? I've CAREFULLY chosen these docs. The primary knows about the surgery, has even SEEN it done, has pretty much kept on top of the literature. The cardiology practice is at a great tertiary care hospital that is involved in weight loss surgery clinical trials. THEY KNOW THIS STUFF.

WHY is it OK for me to lose weight by not keeping food down? WHY is it OK for me to compromise my health by doing this?

Find a new doc? perhaps, but since these guys were actually screened and carefully chosen, they're the best of the bunch around here.

jiffypop, have you been in touch with your surgeon? It may not yield an answer, but then again it might. I admire your perseverance very much and wish you all the best in getting through this. You must be literally starving.

jiffypop
02-17-2014, 10:20 AM
mars - you've touched on an issue that refers back to our so-called healthcare system. Surgeons release us from their care after about a year. Therefore, our primary docs [and assorted referrals] take over our care. That's one of the reasons we need to be very very careful about our aftercare - especially if we go out of the country or to a different state for the surgery.

I'm viewing this issue as more global. First of all, overweight people are viewed differently than normal-weight people - automatically less 'compliant,' less motivated, less committed to their care, and more likely to be in denial about eating and exercise habits.

I'd like to think that, after having maintained an enormous weight loss for more than a decade, after demonstrating that i am a 'good, obedient' patient, doctors would listen and pay attention to me, and not permit such an enormous weight loss through such unhealthy means. If i were of normal weight, I can almost guarantee you i'd be evaluated for what's considered a 'true' eating disorder.

This is about communications between patient and doc, about having mutual trust and respect. And about recognizing when there's an issue that needs attention, rather than being pleased that the result is so-called healthy.

About starving - i'm actually not THAT hungry, but I have to admit that I've been turning to higher fat choices simply to get some calories in and have some energy. shoot. If i'm only eating a few mouthfuls before 'failing,' what's the difference?

mars735
02-17-2014, 10:34 AM
I agree with your observations about the ways in which doctors view & therefore can misdiagnose overweight people. I was thinking that maybe your surgeon would have an "aha I know just how to fix that" solution, or has seen it before. Something to guide your current providers what to consider....longshot.

Jane
02-17-2014, 05:12 PM
I'm sorry you're going through this, Jiffy. ((Hug))

Zeitgeist
02-17-2014, 08:28 PM
Jiffy,

I've been thinking about your post since I read it a few days ago.

For a variety of reasons, I've distanced myself from this site and another site that I frequently posted to. One of the main reasons was my own frustration with preops and newbies thinking they had all the answers and/or not planning for the future.

It took me over a year to meet the requirements of RNY surgery. My PCP was completely on board and supported me. I went through a Center of Excellence program that boasted high success rates. I followed every rule and requirement given, but still had complications. For example, I had a stricture, that for those that do not know, is a common complication as a result of scar tissue. I ended up having to go to an ER twice for dehydration, because the stricture closed up to the point that I couldn't keep any fluids down. Both my surgeon's office and my PCP kept telling me to wait and see, thinking I had just irritated my pouch. I went from not being able to eat any foods, to not keeping down any liquids, including water. At one point, I was so nauseous and ill, I went to my local ER (not the one associated with my surgery), where I was treated horribly. They pretty much told me they could do nothing for me, because they didn't know anything about RNY patients, and they sent me to the other ER an hour a way.

My point is that we have to be our own advocates for healthcare. A stricture is not uncommon; I believe the last statistic I read was that roughly 30% of patients develop one. Yet, my symptoms were ignored until my scar tissue almost completely closed my stoma. And how, can a large hospital/ER center in New England be completely ignorant on basic hydration needs for patients, regardless if they had WLS? They just heard I had surgery and didn't want anything to do with me.

Now, I am struggling with my Ferritin/Iron levels. Ferritin should be around 100; mine is at 10, a level most patients need iron transfusions to correct. Both my PCP and surgeon's office told me to wait and see if it gets lower. Wait and see?? It can't get much lower! So, I am on a self-researched program to try and bring up my iron/ferritin levels.

Not to mention that many WLS programs give erroneous information, such as Flintstones or Tums are appropriate supplementation or that drinking from straws will cause the pouch to stretch. Why do they do this? Probably because they want to frighten patients into compliance or they feel most patients are ignorant and won't take real vitamins, but will comply with Flintstones. It truly is remarkable how many people do not do their own research and just assume practitioners know everything. They don't track their own labs or read up on the literature as to what supplementation is needed after WLS.

Everyone, but particularly people who choose a surgical route, need to take responsibility for their own health. Unfortunately, medical practitioners are not infallible; they make mistakes and are influenced by their own biases. The fact that you were losing weight, and by golly, weight loss is good, probably colored their viewpoint on the fact that you had lost weight in an unhealthy manner. Even competent, supportive PCPs and Center of Excellence centers make errors.

Jiffy, I am so sorry this is happening to you. I am sure you are frightened, as I would be. I hope that they can determine what the issue is. Have you been scoped before? If not, it is not something to worry about...a pretty painless/easy procedure.

I'm thinking of you...

activeadventurer
02-19-2014, 11:25 PM
Hi jiffypop,

I really hear you. I have tried to write about it a couple of times, but just can not say what I want. I think right now I am avoiding thinking about it. It will come around eventually.

Saved by the snow tomorrow Canceled several appointments tomorrow with my WLS program. I was not up to driving hundreds of miles in a blizzard, especially for questionable if not upsetting reactions from some practitioners.

My heart is with you. Hang in there!!!

I just noticed we had similar starting weights and the same goal weight. Nice to know someone else has been there.

Judy Lynn
02-20-2014, 04:33 PM
Jiffy, I hope your doctor gets this sorted out, and you get feeling better soon.

jiffypop
02-20-2014, 09:04 PM
active - it's REALLY HARD to describe. and REALLY SAD on many levels. People say that I've changed, but frankly, I've become more myself than before. For better or worse, I am MORE me than when i was 500+ pounds. and that's changed A LOT of relationships.

everyone says that WLS is a JOURNEY [well, ALL weight loss is a journey], but I don't think anyone ever really understands what that means. Doing it the old fashioned way lets people take changes slowly and one at a time. but that's not what happens with the surgery. it's IMMEDIATE

Olivia7906
02-21-2014, 01:27 PM
Zeitgeist - excellent, excellent post! By the way, I love your screen name ;)

Zeitgeist
02-27-2014, 05:09 PM
Thanks, Olivia. I thought I had come across a little too preachy/rude upon reflection. This really is a hot-button issue for me. It seems even when you do try to become educated on your health needs, finding a physician that takes you seriously or values your input, can be a challenge.

activeadventurer
03-01-2014, 04:28 PM
Jiffypop I was inspired by your last post. Yes, not everyone likes who I am now but I DO!! I am so much better at taking care of myself (being in law school might also help). It is truly phenomenal! The ability to love and take care of myself has skyrocketed. It really has a lot to do with all the work I did for years that allowed my surgery to be successful. Head and heart. A mind body experience!!!