theantichick

@@Scorpion11

I got the best results once I got referred out to a rheumatologist. Not all of them are as good as mine, but that's the specialty that usually has the most experience with autoimmune especially when it starts affecting the joints. Prepare for huge amounts of blood to be drawn, and lots of xrays! And sometimes it takes a while to get a diagnosis. I didn't show any specific factors in my bloodwork, just generalized inflammation. I had to go off the steroids (the only thing that ever gave me relief) and deal with the pain for a few months (without even Advil) before the swelling in my hands could be seen. Then my doctor gave me a diagnosis of non-serologic (no bloodwork that specifically indicates) rheumatoid arthritis last year. I'd been seeking a diagnosis for the pain and fatigue for about a year - I understand the average time from symptoms to diagnosis is around 5 years, so I count myself lucky. Then a few weeks ago a new symptom (plus an old symptom my doc had ignored) pointed to a new diagnosis of psoriatic arthritis. Not much of a change in the treatment, but it did move us along to a biologic medicine faster than we would have gotten there with the RA.

Good luck, I hope they're able to find out what's wrong with you!!

Edit to add: BTW, the WLS won't be the ONLY cause if you do have auto-immune. It can't cause it on its own. But if you had an underlying auto-immune problem, and just hadn't seen symptoms yet, then the trauma and stress of surgery and recovery could have activated it. It's a fine distinction, but one I think is important. Stress and trauma are known to trigger or flare auto-immune.

I've gotten a lot of advice to go gluten free, omit nightshades, go paleo, or any number of dietary changes to "fix" my auto-immune. Have any of you had this advice, and if you followed it, did it actually change anything with your condition?

I have generally thought there would likely be some improvement, but that it's not likely that diet alone could fix an auto-immune condition. But we're struggling to get to where we're actually cooking most of our meals instead of fast food or eating out, so I think we have to be realistic on the changes we can make until we get back to "real" food.< /p>

New spot on BP for the Spoonies to gather!

Mingle, exchange information, vent...

The only rule I employ is Wheaton's Law... http://knowyourmeme.com/memes/wheatons-law.

If anyone wants to co-moderate, let me know and I'll add you.

http://www.bariatricpal.com/forum/1258-sleeved-spoonies/

It's down in the support groups under social groups. I made it open, so pass it along.

We will probably need a better logo and banner, I just threw up what I found easily on Google Images.

Spoonies Unite!!

I was diagnosed with both PsA and RA. While the RA is considered mild, the PsA is severe. My sister has Lupus, so they're monitoring me closely to see if Lupus comes up in bloodwork.

My joint pain is horrible. I had my biologic on 4/11/16 and it's starting to wear off already. Having osteoarthritis on my left knee doesn't help either. My insurance won't approve a new injectable for my knee so I have to try my last med that failed and hope it works now that I'm down 27lbs.

Next week I call the rheumatologist to let him know that the biologic wore off too soon. He said if that happened he was going to readjust all of my meds. I'm on methotrexate, folic acid, dyclofenac twice a day, and 10mg of prednisone twice a day.

My rheumatologist was behind this surgery 100% as well. He said less weight on my joints will definitely help with the meds working better.

- Anne

Auto immune runs in my family too. I have an aunt with MS, a grandfather with psoriasis, a cousin with internal scleroderma, a grandmother with rheumatoid arthritis, a sister worth lupus, and a daughter with both alopecia and non- radiologic SPA.

I just shut my computer down for the night due to a storm coming in, but tomorrow I'll set up a spoonies group.

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Thanks for the support everyone

Just to clarify

Hubby said that he thinks that I think that a VSG is an easy way out. And that I'm wrong in thinking that.. And that's not true because I know that now I'm using my last and hardest option.

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Grrrr. I hate it when someone tells you what you're thinking, that is so rude. I'm so glad my current hubby doesn't do that.

Hang in there, it sounds like he's getting more worried now that it's becoming real to him.

I don't like sleeping with my CPAP, but my goodness it makes such a difference in how I feel. I am hoping the weight loss after surgery will eliminate my need.

My insurance paid for it, with a co-pay. I had an FSA for all of my out of pocket needs, so I honestly don't remember how much I had to pay, I'm wanting to say it was $100 - $200. My insurance pays for my supplies with I think a $45 copay for 3 month's of supplies (which last me almost a year).

There are places you can get CPAPs for little or no money, the National sleep Foundation has a program. As a nurse, I will tell you it's best to get it treated, even if it is short term. It has so many health implications, from high blood pressure to stroke to weight gain... it's nothing to be messed with. And in the hospital, they'll have you on a pulse ox during your recovery, and if your oxygen keeps dropping, they'll keep waking you up. And it's hard enough to sleep in a hospital without that!!!

We need a spoonies group. I found out a couple of weeks ago that what we thought was rheumatoid arthritis is psoriatic arthritis. I asked my rheumy what she thought about bariatric surgery and the timing, since the change in diagnosis means moving to biologics (methotrexate failed, and sulfasalazine is helping some but not a lot). She was very enthusiastic about it. She says that leptin affects PsA inflammation factors directly, so losing all that stomach tissue that secretes it is a help all on its own. Fat cells also secrete factors that contribute to inflammation. So I'm going to have the surgery before we start Stelara. That way I can keep taking the sulfasalazine until 3 weeks before surgery, and then start the Stelara as soon as I'm healed enough from the surgery (she said about 3 months, maybe as long as 6).

While I don't expect the surgery to cure my PsA, I know that losing 100 lbs or so will be very helpful to my joints, and with the hormone changes, it might help the biologic work better. I am looking forward to being able to be active again. My PsA caused me to have to abandon bedside nursing and my plans to become a nurse practitioner. While I am glad I had the option to go back into healthcare IT (I was an IT analyst for years, nursing was a mid-life career change), and at this point won't try to go back to direct patient care (biologics will make it too easy for me to pick up infections), I still want to get active again. I've been a couch potato for the last couple of years with the fatigue and pain, and it's not as fun as it sounds.

I've ordered variety samplers from several places to try and find Protein shakes I like. I've got a very finicky palate when it comes to the Meal Replacement shakes. I like that BariatricPal and Unjury have sample packs so you can try stuff.

I will have my 5 year anniversary in November this year. The quick answer is sadly another question... Are you committed to a life time of yo yo dieting and health problems? It's a hard choice to have a life altering surgery but take it from me it is worth it. After almost 5 years I have lost myself literally. I went from 540 to 265. And 90 percent of my health issues have vanished( unfortunately Wieght loss does not cure MS) .my life has been on the upswing, new jobs and will be engaged soon. I traded my love for food in for a new found love for life and when I look back I have zero regrets. My aunt had the surgery 2 years after I had my surgery and she hasn't looked back either. You can message me If you have any questions .hopefully this helps.

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Congrats!!

To be clear, it's not the permanence I was having an issue with. It was the thought that it would be a permanent change requiring a very unnatural eating plan forever. I had the thought that the eating 3 months or 6 months out was what you stuck with forever. If that were the case, it would be like exchanging one eating disorder for another. Everyone here has helped me get a better picture of what the eating looks like 2 or 3 or 5 years out, and it looks very different from what I'd envisioned. It's super helpful to get input from people who have been living with it long term. I really appreciate everyone sharing their experiences.

Fight it, fight it, fight it.

I had a horrible experience trying to get a knee surgery approved that the insurance company said was investigational and experimental. If I could figure out a way to make money at it, I'd start a business helping people fight insurance companies.

Step 1 - find out if your insurance is a "regular" insurance that your employer buys, or if your employer has "self insured" and pays the insurance company to manage it. The reason this is important is because if you have "regular" insurance, then you have a much better chance of fighting it with your state insurance board. If your company has "self insured" then the state board has no jurisdiction, and you have to look at the federal ERISA laws to govern your policy.

I agree with the other posters who say get the recording pulled. You need to know exactly what they told you and what they didn't.

Pull every EOB from your insurance (they should be accessible through the website) and get a detailed billing from every doctor, lab, hospital, anesthesiologist, etc. that you used. You will need to reconcile these against each other. Also ask your doctor's office for copies of any documentation they have about their conversations with insurance.

My experience involved 4 sets of appeals, where I sent over 300 pages of documentation and exhibits about peer reviewed studies and protocols. After I found out that they had sent me down the wrong levels of appeals, I started quoting chapter and verse of the federal regulations and laws they had violated, and then all of a sudden my surgery got approved. Then a glitch in their system caused a $10,000 payment to just disappear... took me 2 weeks post-op while I'm doped to the gills to reconcile everything and get a 3rd level supervisor on the phone to review my reconciliation with her system up to find the computer glitch that caused the problem, and get it fixed.

It's not easy to win with the insurance companies, but it is possible.

Best of luck to you!!!

I'm only a third of the way through the comments on this one, so I apologize if this has already been said.

Some people have commented that if overeating wasn't the problem, the sleeve may not be the answer. I just read a new study that indicates ghrelin isn't as much of an appetite hormone as previously thought, but likely has a lot to do with regulating fat storage. So removing the part of the stomach that does most of the ghrelin production may by itself alter enough of the fat storing process to make a difference, even if overeating wasn't the issue.

From my own research, I don't think we know all there is to know about how all the hormones that are altered by the surgery work. And likely won't for another 50-60 years. In the meantime, we are getting more and more long-term data that shows that the surgeries are good options for a wide range of people, and we're learning a little bit as to why.

So I don't think the OP made a bad choice with the surgery. And everyone's experience is different, we should all keep that in mind.

I was also diagnosed with psoriatic arthritis prior to GB surgery and I am almost 3 weeks post-op and the pain has decreased immensely for me. My back pain has almost completely stopped. I am now able to walk two miles a day with no back pain. Prior to surgery I could not walk more than a 100 yrds before it was intense pain. I was not able to load or unload the dishwasher or cook dinner for my family without the intense pain.

I hope this helps you. I had no other health problems just the arthritis. It helps me to be able to relate to others in a similar situation.

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Thanks! Good to hear from other PsA patients who saw improvement. Apparently there's a number of reasons for the improvement beyond the weight loss alone. Which has figured greatly into my decision to have the surgery. My mom thinks it's a bad choice, but she'll support me in my decision. My husband and daughter are 100% behind me, as are my group of chosen family. Now it's just all the insurance hoops for 3 months.

The sleeve is as much of a lifetime commitment as a modern marriage. You can stick with it, get through some rough Patches, and often find yourself better off in the long run, or you can get a divorce after a year or two and go back to the single way of life. You aren't signing a "til death do us part" deal when you get a sleeve because you will be able to eat around it and do whatever you want with your diet eventually. It's more of a "if you love and cherish me, I will love and cherish you" kind of deal.

I get what you're saying. I guess extending the analogy, I'm trying to find out if I'm marrying a decent guy, or a psycho.

@@theantichick So, long story short, the most experienced surgeon is not necessarily the best choice in every circumstance

This is absolutely true. I have worked around enough doctors to get a feel for their competence from talking to them. My surgeon was teaching at a university medical center until she was hired away by the physician group my rheumatologist is in. I found a paper she co-authored that reinforced my opinion after speaking with her. And from what I've been able to find, the "rock stars" don't do most of the surgeries at their centers, they oversee young docs starting out. So even going to one of those clinics doesn't guarantee you anything. Not to slam the other guys, I'm sure they are also great. But this one is in the group with my rheumatologist, and is across the street from my office, so it's super convenient as well for appointments and support groups.

I ended up having to use the Vitamin Patches that are sold on this site. I use the mulitvitamin and the B12. Anything chewable made me projectile vomit.

I saw the Patches and thought that was cool, but wasn't sure how well they'd work.

This is good information. I have irritable bowel, so I have issues with this without adding even more causes. I'll be visiting a BB&B this weekend.

So I met with the surgeon today. She's not listed here, but she's newly in private practice and was with a university group before. I'll probably tell her office person to get her added here ASAP.

I like her a lot. She hasn't been doing this as many years as some of the rock stars in the area, but she answered all of my questions without hesitation or ego, talked about the things that contribute to complications, and what she does to avoid them. I like her approach, and her experience is good, just not as long as some. She has a personable manner, something I'm not accustomed to in surgeons. She says I'm a good candidate, agreed with me that a sleeve was the best surgery to choose, and we discussed the expected impact (good) on my other health conditions.

So now comes the insurance hoops. 3 month supervised diet program, cardiologist for stress test (I have a past heart issue that's resolved, but we'll make sure of course), get my psych to write a clearance, visit a nutritionist, etc. Cigna also requires another doctor to say I need it, but since my rheumatologist referred me and was very positive about it, I don't think that will be a problem. My blood pressure has been trending higher over the last 4-5 months, and it was high enough today that I'll need to visit my primary doc and probably get put on something so I don't get refused for anesthesia. As a past ER nurse, it wasn't a number high enough to worry me especially with weight loss coming this summer, but high enough to cause a problem with anesthesia clearance. My surgery will likely be late July or early August. Which works out well because it will be after my summer vacation trip (when I would NOT want to be on liquid or puree) and if it's timed right will fall between my grad school semesters as well.

She also confirmed what everyone here has said in response to my concerns about life-long eating problems... she said after the first year or two, the eating patterns of her patients look like normal people who don't have eating or weight issues. She expects me to land somewhere in the 1,500 cal a day diet range, and not have to obsess about food more than anyone else who's working to be healthy.

So I guess it's onward and upward. Or downward (weight-wise) if you want to look at it that way.

@@theantichick - I watched every video I could find, especially from those who were not successful, and those who had problems. I faced the worst outcomes, and when I realized I could handle them, that's when I sent in my deposit.

This book was really helpful to me in prepping: http://www.amazon.com/The-Emotional-First-Aid-Kit/dp/0976852659

I am evangelist for this surgery, but I'm not a fanatic. It is a great tool, but for some, so is weight watchers. I just wish you great success and if you want to go down this path, we are here for you.

Thanks for the book recommendation. I'll definitely check it out.

My PCP won't be for it, luckily she isn't part of the decision. My rheumatologist perked up when I asked her if it would be a good idea, and she started telling me benefits to the surgery that I hadn't even heard of. She referred me to a surgeon who I meet with tomorrow. My PCP probably won't know until it's over, if I decide to go through with it. Funnily, my PCP is the one who's been on me about my weight forever, but she thinks Atkins or gluten free is the way to go. Not for me.

ER nurse here. No judgment, but I will advise that you tell your surgeon about your use. The cocaine in particular can create some serious complications with surgery, and it will make it all the more important that a cardiologist do a full screening on you pre-op. And the cardiologist needs to know about your use as well. There will be medical people who will judge, I wish I could say that doesn't happen. But you VERY MUCH need to be with a medical team that you trust, and who have all the facts. You also need their input about how soon is safe for some of these things. The alcohol, especially since it has to be processed by the stomach. You wouldn't want to put something that stressful in your stomach too soon or you'd risk a lot of complications.

As for the effects post-sleeve, I'm still in the decision stage, so I can't help with that info. The people I know with either sleeve or bypass report that alcohol affects them much more and faster than before surgery, but they haven't shared about other substances.

FYI, I'm 20 months post-op, have lost 100 pounds, am maintaining at 135 pounds and currently averaging 1,800 calories/day and around 90-100 grams of Protein. I try to eat at least 5 healthy veggies / fruits a day. I prefer whole grains to processed ones. I drink a glass of wine OR scotch most days. In other words, if someone else were watching my daily menus I bet they would think I "eat normally" and probably "eat healthy."

Thank you, thank you, thank you. Too much excellence in your response to quote it all, but this is exactly the kind of thing I was hoping for. I have read so much about the post-op diet, and it feels like everyone is living post-op on some 600-800 calories and never eating carbs. That didn't seem realistic long-long-term, so I was hoping I was perceiving things a bit off.

I also love what you said about attentive vs. obsessive.

If it weren't for the hormone changes with the surgery, and what that means not only for cravings and overeating, but also the direct impact on my auto-immune condition, I don't think I'd want to do the surgery. I want to get to a place exactly like you describe... a normal healthy diet where I don't have to obsess about food and exercise, but eat mostly right and go and do the things I want to do.

First, thank you all so much for the support and feedback! When I stopped to re-read it before I hit post, I was concerned that it was going to be perceived as surgery bashing and I'd get a ton of negative feedback. But this is really my main concern, the ongoing changes to my life, and what my life will look like 10 years from now.

I'm a nurse, and underwent a massive knee reconstruction in 2008 which involved 4 months direct physical therapy and another 14 months rehab on my own at the gym. So I know the things to check on a physician, how to choose a physician, what kinds of complications are possible and what can be done to prevent some of them (not all, unfortunately, but life is a risk). The surgery itself and the post-op recovery don't scare me at all. The pre-op diet scares me more, because I know myself and that I'll really struggle through that part.

I also know that losing the weight is not optional for me at this point. I have 155 lbs of "excess body weight" by the official surgeon's calculation. The weight I ideally want to lose is actually about 125 lbs. I have sleep apnea and an auto-immune arthritis (psoriatic), as well as high cholesterol and borderline high blood pressure. My rheumatologist says the surgery would immediately change some of the hormone production that directly drives the inflammation with the psoriatic arthritis. Not that it will cure it, but it can definitely help the meds work better. I am so out of shape that only a few minutes of walking tops out my training heart rate. My therapist is trying to get me to embrace the "health at every size" concept, but I am not healthy. Nowhere close. While I'd love to be able to shop in "normal" clothes stores, the aesthetics are really not that concerning for me. I want to be healthy again, period. I want to go dancing and get back in a belly dance troupe and be able to do anything I want to (within the limits of the auto immune condition).

I also know that losing weight, whether with or without surgery, demands permanent lifestyle changes. Hence the work with the therapist.

I've been on diets off and on for over 30 years. Obviously that hasn't worked. The best I've ever been able to maintain was a 35 lb loss for about 2 years. (I only had about 45 to lose at that point). Which was great, I don't want to belittle it. But bottom line, it wasn't long term. I gained it back, plus another 100. I just want to make the best decision, and timing matters now because of the treatment plan for the auto-immune. If I were looking at this clinically on behalf of a patient, I'd recommend the surgery. My head's there. I just know how important of a decision it is, and need to know it in my gut as well.

I'm looking for some input about the lifetime commitment aspect of this.

I'm seeing a therapist about food issues that I need to resolve whether or not I have the sleeve. She is not trying to talk me out of it, she will support me with whatever decision I make. But she said something tonight that I have been thinking in my own head, and I'd love to get some thoughts about it from people who've been sleeved for a while.

First, of course, this is permanent. No going back, the majority of the stomach is gone-gone. That doesn't scare me so much as makes me realize that I need to know in my gut this is the right choice.

Second, it seems like this imposes an unnatural relationship with food, forever. I mean, forever having to think about every bite, x many bites of Protein, x many bites of veggies, x many bites of carbs (if there's room)... in people who haven't had gastric surgery, this would be symptomatic of an eating disorder.

I mean, my current relationship with food isn't healthy (hence the therapist). But in trying to reach a balance and healthy place relating to food, do I want to permanently change my body in a way that requires unnatural eating to the other extreme?

I've read the studies about how losing a lot of weight through diet and exercise doesn't last long-term in the vast majority of cases. My reading of these studies indicates that it's because in order to maintain that weight loss, people have to spend large amounts of time and energy planning and preparing their food and exercise plans, and it's just too much to maintain long-term. It has to become the number 1 priority in their lives, and that's hard to maintain. It seems that the surgery imposes that same thing, the primary benefit seems to be that the cravings are substantially lowered for most.

Everything in life is a trade-off. I get that. I have chronic health conditions that my doctors believe will be greatly benefitted by significant weight loss. On paper, medically speaking, the surgery makes complete sense. My gut isn't there yet. And I know that I have to be mentally prepared for this as much, if not more, than physically.

I know this post comes across as critical of the surgery. I believe the surgery is a great option for a lot of people, and I am not trying to slam the surgery or anyone who's chosen. What I need to figure out is if I'm one of those people, and I'd really appreciate your insight.

I'm on my 2nd Mirena. LOVELOVELOVE not having periods. It also reduced my Migraines. I gained weight during the time I've had it, but I don't think it contributed. That said, everyone has a different experience.