Update for anyone *****members me....

First, I just wanted to apologize to everyone who I was so close to-I have been so depressed and miserable, I barely even looked at my computer over the last year and a half.

I had the Duodenal Switch done in October of 09 at Adirondack Medical Center. Unfortunately my body has been uncooperative ever since, and to make a very long and painful story short, I am having a partial reversal done at Ellis. I was there for about 2 weeks a couple of months ago for them to prepare me for the surgery. As soon as my weight goes up to a comfortable level, and the dr feels I am strong enough, I will be coming back to Ellis for him to perform the revision. At this time, I am taking feedings through a picc line in my neck for 12 hours every night. Basically my weight went from 395 6 months prior to surgery, to 325 after 6 months on weigh****chers preparing for the DS. Since the surgery, my weight plummeted to 119, due to the fact that I am maleabsorbing everything I ate. Even after they placed a regular feeding tube I couldn't absorb any of the nutrients. It got to the point where I put on 125 lbs of water weight over a 3 month period, and it took months for the doctors to figure out that it was due to a lack of protein, and basically I was starving. I couldn't move due to all the extra weight-I had to rely on my husband to practically carry me to the bathroom, and he and my kids had to lift my legs ofr me to get into and out of bed where I was basically living because I was too big and weak to move around at all.

Once they started feeding me through the picc line in my neck, my weight finally started working its way up, and the water weight finally started coming out. Basically I was peeing every 15 minutes for 3 days straight. I am now 135, and about 30 lbs of that is extra skin. So as soon as I am "healthy and strong enough", I will be going back into Ellis to have the revision. I thank g-d every day that they figured out the problem, and although the dr said the surgery is risky (he said I could even end up worse off then I am now), I have faith on the doctor-and I also feel very comfortable going back to Ellis-they took excellant care of me when I was there.

Anyway, I hope everyone is doing well, I just wanted to check in to let everyone know that I am still alive and kicking-although I almost wasn't-aside from all the problems I mentioned, I got hit with pneumonia, pleural effusion and both of my lungs collapsed about 6 months ago due to the weakened state of my body-and because of everything I was going through I basically had a meltdown, and was in the psych ward for 2 weeks. Now I see a psychiatrist and psychologist, and am on 2 anxiety meds. They are helping me cope with everything I have already been through-and will help me get through the next few months as well....

Would I do it again?? Hell no. I would not have the Duodenal Switch if I had it to do over again-I would have done the gastric bypass. The partial reversal I am having done is very iffy as far as hoping to have a fully normal life after-even if everything goes perfectly. In the meantime, I have a feeding tube in my stomach that is not being used at the moment because the food wasn't being absorbed through it anyway-but they want to leave it in because after the surgery they may have to use it if I cant eat by mouth. In addition I have a very obviousm 9 inch long picc line sticking out of my neck which briings alot of stares from anyone who happpens to see me when I venture out.

I am not trying to scare anyone-and please don't come down on me for speaking poorly about a surgery that has helped so many take their lives back-I just wanted to let everyone know what has been going on-and where I am at at this point. I have had numerous doctors working with me, and it absolutely does not appear as though the doctor that did the surgery did anything wrong. Since the surgery 2 other doctors did endoscopies trying to identify the problem, and basically they both told me that other than some scar tissue(I did have a few strictures at the surgical site and a hernia in the last 2 yearsthat had to be taken care of) everything else appeared normal. Basically the bypass may have caused the same problem, however it is a much easier surgery to reverse, and there are many more doctors who do the bypass and even those that don't actually perform the bypass, they pretty much know how its done and what it is supposed to look like. Unfortunately there are very few doctors that are aware of the DS, so my choices were very limited.

What makes things even worse is, we have 2 young special needs children, and due to all of the times I was hospitalized, and the care I needed at home, my husband has been unable to work-so we are also suffering financially. I don't know what we will do if this surgery doesn't allow me to at least be left alone at home-and I also need to be able to care for my kids while hubby gets back to work. So everyone please keep me in your prayers.

I'm so sorry you went through all of this, Dawn, but I'm glad you're getting your health back. Take care and keep us posted.

--gina

I really am so sorry to read about everything you've been through.

What are they going to do when they revise you - lenghten your common channel?

((Hugs)) and best wishes and I hope they can get you better soon. 

Yes, he is going to attempt to lengthen the common channel.  After doing an endoscopy, he basically said there were a few different ways he could do this, and he wont know exactly how it will be done until he actually ggoes in.  He also said he is hoping to be able to complete this laproscopically-but he wont know that until I am actaully on the table.  He said he may have to switch over to open once he starts-depending on how everything goes.

Thanks for the well wishes,  and stay well.
~Dawn

Well I'm swinging critters for you.  KUP.

Dawn, I can't imagine what the past two years have been like for you and your family.  Big hugs to you and best wishes for recovery after your revision. 

It is SO important to post your story and for others to see that the DS, especially revisions, do not come without risks. Last week, we had two women post their stories about their revisions that had many complications. Please don't be offended if I call these stories "horror" stories, because that is the first word that comes to my mind when I think about what you have went through.

Please consider having your next surgery open as opposed to lap. There was a thread earlier this month about open vs lap. Most have had their surgeries open, because of the complexity of the surgery. One of the complications posted last week may have been avoided if open surgery would have been performed. The surgeon could not "see" the other side of her stomach. Her stomach, after surgery, died.

You have had so many complications! My surgeon told me he only did open "so he could see everything.". I am sorry for what you have gone through and thank you so much for posting your story. Keep us updated on how you are doing. Prayers, Merry Christmas, and hoping for a much better Happy New Year!

 One more comment,

Why did it take them so long to diagnose malnutrition?  Didn't they realize that your protein, vitamin levels were out of whack?

Also, you never mention your surgeons name. Has he done these type of revisions before?  Make sure you are in the best hands possible. My manner of speaking Is "nicely" but I think this is a matter that would really rile the vets.  Get the best surgeon please!  You also might want to post this on the new site as well and get their opinions.  You may not like what is said, but I think you really need to hear it. I SO SO MUCH want to hear that this is your last surgery and that you are better!

Hi there, and thanks so much for your advice.  This surgeon that I am using for the revision does not do the DS-however he specializes in correcting them.  He is supposedly the go to guy-and he specializes in laproscopic-however he may have to switch to open once he starts.

It took so long to diagnose malnutrition because my veins are useless at this point and they were unable to get a blood sample until they placed the picc line.  Finally, my family dr put me in the hospital and had it done because my previous barritric surgeon basically washed his hands of me after spending 2 years of trying to figure out why I was dealing with the constant pain-and basically I was getting worse and worse as time went on.  After my family dr figured out it was malnutrition she put me into the hospital for a week while they worked on getting the water weight off, and she started making phone calls to other barriatric surgeons until she found Dr. Clarke.  I consider myself very fortunate that my family dr took it upon herself to help me...

Dawn, thanks for trying to clarify things, but I am now more concerned than before about your surgeon and your upcomming surgery.
     First, he is totally misinformed about who the DS is good for and reversal rates. In reality, every organization in the bariatric surgery community recognizes the DS as a valid choice for anyone who meets the standard criteria for wls. And if it were limited to people over 700 lbs, there would be like 2 DS's in the USA every year, total. I mean, we're in the midst of an obesity epidemic, but even so, there aren't many people out there over 700 lbs.
     And 30% reversal rate - not hardly. If you want, I will provide you (and maybe you should provide your surgeon) with the Hess study, which followed almost 1,000 DS patients for 10 years. And guess what - the rate of nutritional complications was a whooping 2%, and in almost all cases the patients with problems were noncompliant. And not all of them needed further surgery - only a very, very few. Before resorting to surgery, there are other things that can be tried, like taking digestive enzymes, IV feeds as you are now doing to tide people over, etc. And for what it's worth, no wonder the feeding tube didn't help you if it was in your jejunum (which is not part of your stomach, it's part of your small intestine - but read further). The jejunum is the part of the small intestine that is bypassed with the DS. So whatever you got through the feeding tube went the same path as whatever you swallowed yourself. So if you were malabsorbing because the food you swallowed didn't mix with the digestive enzymes from the biliopancreatic limb enough, doing tube feedings through the same channel was doomed to failure.
     And while we're discussing reversals, you do know that a complete reversal isn't always needed even when someone does need surgery, right? It is also possible to just lengthen the common channel so there is more mixing of food with digestive enzymes. I hope this is what your surgeon is planning, but even more I hope you will get yourself a second opinion with a real DS surgeon. 
    And I realize that this is water under the bridge, but frankly I'm appalled that no one got blood and they sent you to a lymphedema clinic without a diagnosis just because you are a tough IV stick. I do appreciate that some people are very tough sticks, but they could, just for one example, have had a doctor do a femoral stick and obtained blood from the femoral vein in your leg - a nice big vein that doctors know how to locate. There are lots of people out there who are tough sticks, either because of disease, or because they have destroyed either veins with IV drug use, or because they were just born that way. Hospitals see these people and need to get blood from them every day. I think your care team really let you down. Your recovery would have been much quicker with a prompt diagnosis and maybe we wouldn't be discussing surgery at all.
     The more I think about you, the more strongly I feel that at a minimum you need and deserve a second opinion from an experienced DS surgeon.

Larra