More of my incoherent ramblings about my SADI

[fallds]

I'm not sure if we are allowed to share links but I found this video about the SADI and thought some of you who are curious about the procedure may want to see it as well. I appreciate everyone who is spending their valuable time looking into and researching this to help me. I think I get lost and overwhelmed in all of the medical jargon. I understand what the loop is now and how it looks inside of me, I just still have no clue about what it all means. My biggest concern is that my malabsorption will not be enough since I have the longer common channel.

I would be lying if I told you all that wondering about the long term success of this variation of surgery is not making me somewhat crazy right now. I chose DS because I did not want to have more surgeries or to have to be revised. The only options I was given were lap band, roux n y, sleeve, or the DS. So it never occurred to me that there were any other options or variations to the DS. I didn't know I could be getting something besides what I found when I googled Duodenal Switch.

It took so much nerve to go under the knife to change my life and once I finally worked up that nerve... I wanted to go with the surgery with the highest success rate and the one where I would be least likely to fail. To me, the higher risk of complications and stricter vitamin and nutrition needs were worth it for the peace of mind that I would be able to put the nightmare that is morbid obesity behind me and maintain my losses. Now...I'm feeling like I went through all of this only to get a procedure that no one really has long-term info about. An experiment.

Bare with me guys...I'm not always this "blah"... but I am pretty bummed right now. Maybe its just the whacked out hormones...but I just feel lost.

Thanks for letting me vent and ramble on ( incoherently) and get all this frustration out of my system. This forum and you guys are the best.

[brooklyngirl]

Aw CiJi, I feel for you! I would feel the same way as you do right now, and I think it was very irresponsible of your surgeon to do the SADI and call it a DS without making the distinction. That being said, you shouldn't freak out. There is no way of knowing how well any of us will do. All you can do is work the program, maybe not go crazy with fat if you're worried about the longer common channel, and see what happens. I worry on a regular basis that I broke the DS and I'm gonna be stuck at a weight that many people start at, but then I have to kick my self in the ass and tell myself that there is nothing much I can do about it, as long as I keep track of my intakes and keep on top of my labs. Perhaps your next set of labs will give a clue as to how much malabsorption you have?

[Girlrocker]

It's hard to tell if your surgeon explained to you clearly that you weren't having a DS but an entirely different procedure. You can address that later on with him too. By sharing your story you'll never know how many people you've helped, a question to add to their checklist when talking to a surgeon. So you have every right to all you are feeling and have nothing to apologize for!

I agree, I think you proceed DS eating style, but maybe not so high in fat. The scale and your labs will be give you an indication of how things are going with your weight loss and malabsorption. It's true, none of us really know how exactly our surgeries will play out, whether a virgin surgery or a revision. Brooklyngirl had a great explanation on another thread of the PTSD we go through as obese people and you absolutely deserved to have the procedure you signed on for unless your surgeon gave you a medical explanation why you shouldn't have a 'regular' DS or informed you this is what he performs. No explanation necessary to us, him on the other hand...

So stay, post, vent, like I said, we're family, we're not going anywhere!

[fallds]

In his defense, he did explain what he was doing....he just didn't let on that it was a variation to a DS and not a regular DS procedure and in my blind state of ignorance I never even knew to question it pro op. I just assumed this was what everyone who had a DS surgery had. When I found this forum and started wondering about my common channel size and things, I asked him and he spent time explaining the details of my single anastomoses and the reasons he believes it is the best route for surgery. Some of it makes a lot of sense...quicker recovery time, lesser chance of complications, and fewer vitamin deficiencies. I just hate the unknown, the potential negatives that no one can tell me about because this variation is apparently very new. He is a very nice man, extremely caring and appears to be a very skilled surgeon so I hope everyone who is reading my vents in here don't just automatically discredit him. It just sucks. I wish I had known to ask more questions and ultimately what would alleviate this anxiety most would be finding a few people who have had this same procedure and are further out so I know more about what to expect down the road.

[fullhousemom]

I understand your frustration, and I would be pretty ticked off to. But....

There are many people who have been successful at other surgeries. There are sleevers, RNYers, and even lapbanders who love their surgery! They have experienced success with a surgery that doesn't have the best success rate on the market. Do not assume that the SADI has a 100 percent failure rate. To the contrary, it may not have a success rate as high as the DS, but I have to believe that it is better than a sleeve, rny, or lapband.

You've had great success so far. Some of your long term experiences might be different than a "true" DSer. The fact that you MAY have to watch your fat content later, is nothing to worry about now. Quite honestly, I don't come anywhere near the amount of fat that I see a lot of people eating here! Maybe bacon won't be a good choice for you. Bummer, but not the end of the world.

You may find yourself in the unasked for, "leader" role of the SADI. We will all learn a lot from you, and I am glad you are here posting about it, and educating us about it. The DS surgery is always evolving, and this is an arm of its evolution. Unless your surgeon is a crook (I haven't seen any mudslinging about him), maybe he's on to something. So yes, be ticked that you got something other than what you thought, but don't treat it as a death sentence. The real success of any surgery comes from being educated about your sugery and being compliant.

[Girlrocker]

I applaud you sharing so openly about your experience, and the understanding we all must be our own advocates, research, ask questions. I still think it was your surgeon's job to educate you on the distinction of the procedure he performs and why, he knows it's a new technique and he should have made that very clear. But I'm relieved to hear more details of your interactions with him, so no, no mudslinging here, but he should be accountable. I agree about the progression of the DS and bariatric surgery in general, and know as fullhousemom points out, it will continue to evolve, technology and medical science will continue to improve and so will surgical options. That was my takeaway when I first read about SADI and you just may unwittingly be our poster child. Does your surgeon have a support group, would you be interested in one, would he be interested in getting one together? Who knows, you might just pioneer a trail for that too, meet fellow patients in his office. I hope you will feel comfortable enough to reach out, there's nothing like talking to other people who are going through the same thing you are, and I know we would welcome more information here and opportunity to provide support.

I understand the anxiety and grief about not having the exact procedure you thought you signed on for.. I think we approach bariatric surgery with the hope of creating a level playing field, no more
'what ifs' 'what to try next' and the belief that the DS is going to give us the clearest shot. There is a general list of what is performed and what we need to do to be compliant that's the same for everyone. And that's still true for you. I'm just over 2 years out from my RNY revision to the DS. My RNY process was agonizng because it failed me miserably, I was a metabolic flat line. I went into my revision having no idea how well it would work for me, I think I was literally holding my breath for months post-op. I've been very fortrunate to have the progression I hoped for, a goal weight range I didn't think I'd ever see and one I think is reasonable and realastic. Now is when I wonder how efficient my metabolic reset will continue to be and I'd be a liar if I didn't cop to my own obesity PTSD. I have regained easily in the past without any significant change in my eating. I'm nervous because I've been at the high end of my range since the end of 2013 and it won't budge, and it always did before, went right back to 155-157 eating exactly as I do now. I know that this truly could be related to perimenopause, the bloating, hot flashes and all the other things I'm going through, so I'm just watching it now that much closer, tightened up even my good complex carbs, because I don't want to gain beyond this. There are never any guarantees.

You've got a surgery tool and continue to work it; the significant difference from what we can all tell so far is likely not having the free reign with fat. For me also not an issue, I also do not consume the volume of fat I see others do. The biggest change for me is being able to eat more of it now, no more low fat, fat free. I think Atkins style is still going to work for you - ok to use real butter, have some bacon, cheese, red meats, cook your food in olive oil. You also might not need as much fat to keep from getting constipated, bonus! So keep doing what you're doing, stop beating yourself up, know you can talk about any and all here, and keep us posted, let us know when you get your first labs done too.

[fallds]

They do have a support group but it's for everyone (all types of surgeries) and in my experience the info they give to everyone is pretty generalized and best fit for those with roux en y. I was lost before I originally found this forum because all of the things they were telling me....all of the "rules" weren't working for me. They told me 3 four ounce meals per day of lean meats. No snacking and to supplement with protein shakes. I'm now nearly four months out and I still can't eat lean meats because they don't sit well and protein bars or shakes make me sick sick sick with horrible gas pain, along with not setting well. And there are days I can do four ounces in a Meal and other days where two ounces won't go down. So once I found this forum and started talking to all you vets I stopped listening to them and did what worked for me. And I started feeling much better. I was able to reach my protein goals. If I switch to lean meats right now, I won't get anywhere bear the protein I need because the lean stuff still makes me sick. I hate that too bc I love chicken and ham ....But right now it doesn't love me. Milk, eggs, and cheese also don't love me back yet. Steak and microwave bacon are the only things I am able to eat for my protein right now without being completely miserable. So, for now....so long as I'm still losing I am going to stick with those until I can handle the lean stuff again. Thanks everyone for everything. I will try to keep you all posted as I learn more.

[fullhousemom]

Feb 19, 2014 20:40:13 GMT -5 fallds said:

They do have a support group but it's for everyone (all types of surgeries) and in my experience the info they give to everyone is pretty generalized and best fit for those with roux en y. I was lost before I originally found this forum because all of the things they were telling me....all of the "rules" weren't working for me. They told me 3 four ounce meals per day of lean meats. No snacking and to supplement with protein shakes. I'm now nearly four months out and I still can't eat lean meats because they don't sit well and protein bars or shakes make me sick sick sick with horrible gas pain, along with not setting well. And there are days I can do four ounces in a Meal and other days where two ounces won't go down. So once I found this forum and started talking to all you vets I stopped listening to them and did what worked for me. And I started feeling much better. I was able to reach my protein goals. If I switch to lean meats right now, I won't get anywhere bear the protein I need because the lean stuff still makes me sick. I hate that too bc I love chicken and ham ....But right now it doesn't love me. Milk, eggs, and cheese also don't love me back yet. Steak and microwave bacon are the only things I am able to eat for my protein right now without being completely miserable. So, for now....so long as I'm still losing I am going to stick with those until I can handle the lean stuff again. Thanks everyone for everything. I will try to keep you all posted as I learn more.

Throw away the thought of eating only lean meats.  At two years out, chicken breasts still get "stuck" unless they are in a soup or sauce.  I started eating the skin of broasted chicken with a chicken breast at about nine months out.  It took me that long to actually take the plunge, after avoiding the skin all my life.  I now enjoy chicken thighs.  And a fatty steak is easier to eat than a lean one.  I lived on beef tenderloin which, though not fatty, is very tender.  For me, I attribute my success to all the steak I ate!  

Its too bad that cheese doesn't agree with you.  Have you tried babybel or mozerella sticks?  Perhaps you are lactose intolerant.  I had that issue for a while, but then it took care of itself.  I know some people take lactaid for a while.

[Girlrocker]

Yes, that generalized post-op 'diet' 'nutrition' info is infinitely annoying and frustrating. And Joanne, who posted here is a surgery veteran and super knowledgeable (among many fine contributions she helped organize the keynote on here with Dr. Roslin, about if the patient fails the procedure or does the procedure fail the patient) I believe she mentioned on another thread she knows someone IRL (in real life) who has a SADI too, but I'll let her weigh in on that. If you have a good rapport with your surgeon, perhaps you can ask him if he is willing to let you do some patient networking, to connect with fellow SADI patients only so you can have more information, sharing accessible, and how it might be best to approach. I plan on keeping eyes/ears open for new sources and info.

As for proteins, that's me too, always have done better with red meats, even with my RNY. Chicken no matter how moist it was got stuck, it took me a long time to be able to eat it. Now, similar. It has to be very fresh, very moist and if I reheat it, well reconstituted, usually with butter. I'm personally not a dark meat fan, but have come around to drumsticks, and I'll cook with thigh meat though I won't eat a thigh piece off the bbq/out of the oven kind of thing. I also did well with ground turkey and not the lean/breast option, just for a change of pace. Chili was one of my go tos for a long time and also making deconstructed taco salads, heavy on the meat/cheese, light on vegetables/lettuce, and for you, maybe lighter on the sour cream and guac. Salsa, all good! Steaks, burgers, meatloaf, meatballs, all good for me.

*edited for typos that I didn't catch before coffee*

[sheanie]

If I were you, I'd be talking to my lawyer. The SADI is experimental, not covered by insurance. You did not give informed consent. That's what lawyers are for, that's what malpractice insurance is for. You may end up in arbitration. You could get your revision to a real DS paid for by the original surgeon as settlement. You were sold the DS. You ended up with nothing even close. That's malpractice. Call a really good lawyer.

[Joanne]

I think most of us find that our surgeon's real life support groups are of limited value. I also dont think with the SADI that you need to be as concerned about fat content as you may think. You still have fat malabsorption, just not as much as those of us with a traditional DS - but you also shouldn't be absorbing fat like you did pre-op. I would find the protein sources that sit well with you, that you like, and not worry about fat or calories. You're still pretty early out - if something doesn't work now, try to re-introduce it in a month or so.

I tried to explain the SADI here before. I'm pretty friendly with my surgeon and he spent a lot of time talking to me about it, drawing pictures, etc. (I already had my DS - this was mostly just talk among two geeks, if you will).

I know you're concerned because you have a long common channel - and you do - but the difference is that you don't have a separate alimentary limb like the rest of us. Your common channel and alimentary limb are the same thing. Ours are different - Y shaped vs yours which is "I" shaped. Think of it like this - I'll use myself as an example. I have a 125cm common channel and a 150cm alimentary limb. My digested food travels both - it goes down the alimentary limb and into the common channel - traveling and being digested over a total space of 275cm (alimentary limb + common channel). Yours travels the distance of your common channel (is it 250, I dont remember). The difference is that the common channel for the DS is the only place fats are absorbed - meaning my fats only have 125cm to be absorbed, and yours have 250cm to be absorbed. However, my carbs and protein have 275cm to be absorbed, which is similar to what you have. For reference, as pre-ops we have about 500-700 cm of small intestines to absorb everything. RNY'ers have only 150CM bypassed - meaning they have an average of 400-600CM to absorb everything.

I hope I'm explaining it in a way that makes sense. You have what you have, and you can still be very successful. The SADI is mostly done outside the US and the reports on it look promising. The issues I would have with it are that it doesn't have the track record of the DS. Think of its track record like a credit report of a kid out of college - it's not negative, it's just mostly blank. The issue I would have in your case is informed consent - WHY didn't your doctor fully explain to you what you were getting? But that aside, there isn't any going back now, and you can just focus on making it work for you. There's no reason to think it wont work.

You still have malabsorption, and you still have fat malabsorption, just to a lesser extent. To what lesser extent is anyone's guess. If I were you I wouldn't go out of my way to eat a ton of fat - I wouldn't drink cream in my shakes, for example - but heck, I dont do that anyway. I by no means think you need to eat low fat or lean, though. I think you're going to have to be your own test case. I think you will have to do some detective work over time to monitor how much fat you are malabsorbing. Good signs of fat malabsorption would be seeing oil slicks in the toilet, seeing your cholesterol numbers drop, and of course seeing how your weight loss and maintenance correlate to the amount of fat you're eating.

I hope this info helps, and helps alleviate your concerns. Like I said, my concern would be more of a trust issue with the surgeon, than worrying that you'll fail. The early reports of the SADI look promising. I do know someone in real life with it, and she is doing very well. You can do well, too.

Also, for what it's worth, many of us feel early out that our surgery wont work. I felt that way with mine. We're conditioned by years of failed dieting to think we'll be the one who will fail. So part of what you're feeling, IMHO is some of that. The other part, of course I get, you went in expecting one surgery and got something you didn't expect - and something that doesn't come with a tried and true instruction manual, so to speak. I think you'll need to stay on top of your labs and results and find what works for you - but also realize to some extent, we all do that.

-Joanne

[Taterweight]

Joanne what a gift of words! I was hoping to convey the same thing - we all have different surgeons and different methods. Some people will have issues with one food or another, there's just so many variables that we are each on our own individual journey regardless of DS vs. SADI vs. RNY. Ciji you may be the most successful of us all without all the deficiencies in iron, who knows! Don't despair and follow what your body is tolerating, try new things as you can, and let's all rock this dang surgery and live life to the fullest, coz being fat and miserable sucks!

[teachermomolp]

Thank you too, Taterweight! What an uplifting post. I'm so afraid I'm going to get something other than a DS so I'm researching this carefully... I want to be ready for my pre-op in about 10 days with the exact right questions!