BPD with no Stomach

I had the BPD in 2000 and had successful weightloss until 2005 when catastophe hit; suddenly I couldn't hold anything down. I was down to 115lbs and malnourished, bone thin and losing my hair and teeth. Exploratory surgery revealed my stomach and intestines were wrapped around my kidneys, livers and twisted up all through my body while months old food was distributed all through my cavity. I was septic and infectious. Needless to say I was dieing.
After 18 hrs of surgery, dieing twice on the table, they managed to salvage some of my intestines and I lost all of my stomach. Now, I weigh in at 150lbs and take prenatals, calcium, vit D, folic acid, potasium, iron and B12 injections every month. I am no longer anemic and am quite healthy. My hair is down to my waist. I don't know the status of the rest of my intestines. I have solid bowel movements with an occasional attack of diahrea. I do have flatulance when it is close to the time for a bowel movement but I keep it under control with frequent use of the toilet. I know I am on a second lease from God. But my point is nothing is painted in blood. or permanent. We all think our plan is the best. I thought mine was perfect... What a surprise I was in for. The recovery process took years. I can honestly say I am JUST NOW healthy. But I couldn't say that last year or the year before.

We think we have to be bone thin, I would like to suggest is what we have to be is: stable and cushioned. One thing I didn't have when I was extremely ill was a weight cushion. I don't want to be caught without one again. So I carry an extra 10 lbs for my age. I am 52 so I way 150lbs. My ideal weight for my height is 142lbs. So I carry the extra in case I get sick, I will never get caught half dead again. I was in the hospital for two months and in recovery for years. I will be prepared for the future. My body is happy here. It always rebounds at this weight. So I make a point of stabalizing around this weight. Staying stable is critical to my health. Major fluctuations are so unhealthy. Your body needs to know it can rely on you for calories and energy or it will lock on to every calorie you put in to your mouth and lock it away on your hips forever. Don't get caught in that yo yo trap. I don't diet but I watch every calorie that goes into my mouth with caloriecount.about.com/cc/account/index.php and I exercise everyday. I walk everyday so that I will stay young and have a reason to live. I am disabled and sometimes life's purpose comes into question. So trust me when I say I know what suffering is on both sides of the coin. So, keep a positive outlook, get STABLE. Be open minded, think healthy, be healthy GOODLUCK!

thank you for sharing your story.

Wow!  What a heck of a story! 
I have a DS, but have only about 2% of my stomach. I had a revision from RNY to DS and though initally everything looked good I ended up back in the operating room 48 hours after my revision. My complications ended up being long and chronic. Gastric leak, multiple gastric fistulas, strictures, atrophied pyloric valve, and much more. Eighteen months later I ended up having an operation that amputated all but about 2% what was left of my stomach.  

All is good now. My weight is stable. I'm not too thin, I watch what I eat and when I do fall off the protein band wagon I get right back on the next day. 

I'm glad to hear that you are doing well and healthy. Thanks for sharing your story. 

Maddie 

Sounds like you have swam around the fish bowl a few times too! Isn't it amazing what our bodies allows us to survive despite what we put them through? Poor surgeons, poor nutrition, poor environment just poor poor poor, but it prevails against tremendous odds and gives us more time on this good,green earth.

I fell into the trap where "my surgeon was so nice he must be good". Oh, such follies! Such tempting lies we tell ourselves so we can do what we want when we want. I didn't do as much research on him as I should have, and I probably would have justified any mistakes anyway because I wanted that surgery so badly. He was young and had little experience. But I am getting ahead of myself. That was the first surgery, that I didn't talk about. The BPD was my second surgery, which corrected the original which was a joke and a disaster. I remember being caught up with pain so bad that I would double over and either pass out or wish I had if I ate the wrong or too much food. But that was in the 90's when surgery was in it's infancy. The BPD was an attempt to correct but it was far too extreme and radical. What I needed was someone to just let the seems out and to be put on the proper thyroid medication.

There were other things wrong which I wont go into but the bottom line is radical is not the answer. If I had only been a grown up and had the control then that I have now. Food is now just a passing fancy that I can live with or without. It is what I need to survive. I like to eat but I don't obsess and have come to realize that I never did. But what I did have was a lonely place and food did a good job of filling that. Now that I have matured and have found other ways of filling that void, if it still exists, which I don't really think it does. That is one thing I must say that the surgery forced me to do was find other ways to feed my lifes unfed needs. My daily struggles could no longer be supplemented by food. Everything had to be taken in it's purest form. In other words Christmas was Christmas for Christmas' not for the food (can't get much out of a baby food jar) Now, I have a taste, yeah it is good, but it is over it two seconds why eat more when it will be on your hips for an eternity! No, no thanks, not for me I won't go back there. I watch what I eat but I am happy that I can have what ever I want and that I watch what I eat for the health of it not for nightmare factor. Yes, life is good.

Sorry, don't mean to be a chatter mouth but there are somethings I  need to say, the good and the bad. I feel I am spilling over with a story that people need to hear. I can't stand that this tale is going to be repeated, that someone else is going to suffer as I did  because they accepted some surgeon because they were nice, or they got the surgery in the first place because they thought it was going to be easy! huh, we both know that is SO FAR FROM THE TRUTH! But maybe people have heard it all before. I don't know, I have been a member of this site for a long time and people tell this happened and this happened but few people talk about why they made the choices they made or how it affected them. I would like to know for one. It would help the next guy who comes along as well! The niceness factor is a real biggy I think. (I don't talk this much in real life!)
Thanks for Responding

I often feel that many WLSers do not count the costs as to what can happen. Too often I see those that ignore due diligence because of what they want and how soon. Traps as you say. We have all fallen for them. I did too. The first surgery my doctor said "oh, the DS is just like a distal RNY bypass. " which could not be further from the truth. Anyway, I did not do the research. He was such a vetted surgeon and at the time the president of the Obesity Society.  I went from 430 to 210. I was happy. I felt skinny.  If only I had done my research.

Below is my story. It is also what I will copy to give to newbies or preops. Mileage will vary for many, but if it will open a persons eyes and ears to counting the cost then I have paid it forward.
I have been asked a lot why I decided to revise from RNY to DS. Truthfully, it was because I was gaining weight. When I had my RNY in 1999 I weighed in at 430 pounds. 
I really didn't see any possibility of losing 300 pounds or even less than that. RNY was considered "the GOLD standard" and though I had heard about the Duodenal Switch when I asked my surgeon about it his reply was "well, it's just like a distal (now called an eRNY) gastric bypass.  I trusted my surgeon and so I didn't do due diligence and I didn't research it like I had researched RNY. I just went with the RNY. So  I lost 220 pounds and got to 210 and never lost more weight. My weight just stopped and that was it and where I maintained for about four years after which I started gaining weight and from years 4 to 10 I ended up gaining 92 pounds. To put that in perspective I gained about 48% of the weight that I lost.  One thing that the doctor didn't tell me was that Severely Morbidly Obese people gain more like 40-50% of their excess weight loss weight back starting around the forth/fifth year post op. Actually, I was told that I might gain 10-20%. What a lie.  Anyway, I wasn't happy with myself and I hated that no matter how much I dieted I still continued to gain weight. In addition to weight gain I really wanted to not dump, which I did frequently.

Me at 430 and then at 210


The following is from my own RNY to DS revision experience. It's long and it might scare you, but use this information to educate yourself in what can happen. It doesn't mean it will, but it just might.  You need to count the cost of what could happen to you. I think that many people who want revisions walk around thinking that a revision is a walk in the park and for some it can be, but for many it isn't.  Twenty five to thirty five percent of RNY to DS revisions suffer from gastric leaks. That is one in three or one in four people. Revisions are risky and require a skilled and vetted surgeon to perform them.

On August 10th, 2009 (Monday)  I underwent revision surgery from an RNY to a DS. There were issues immediately after my surgery. My heart rate was out of control and for some reason my normally low blood pressure was in outer space. I was heavily drugged on pain medication and placed in the critical care unit following my surgery. I was given medication by a cardiology specialist which after a day did bring down my BP and heart rate to more normal levels.  My husband brought up to the CCU nurse that my heart rate and BP seemed high. Though nurses had been in and out of the room no one was checking my vitals. I think were it not for my husband checking my vitals I might have had cardiac arrest.  After my heart rate and BP were normalized I was sent for an upper GI the next day. I repeatedly failed the GI. The gastrograffin contrast did not exit into my stomach, but rather remained in my esophagus. The next day my bariatric surgeon, Dr. Greenbaum came to visit to me to tell me that I needed to have another operation.  I knew something was wrong because I was throwing up old blood, saliva, and the gastrografin contrast. Basically, the contrast nor anything else would go down into my stomach and would remain only in my esophagus I was told and that there was an area in my stomach that had been necessarily over sewn because it was a weak spot along the old RNY staple-line. That area got very swollen and as a result the contrast from the upper GI was not going into my stomach, but rather backing up into my esophagus. The next day (Wednesday) I had a second operation. Sutures were released and my pylorus, which seemed not to be working had to be stretched. I was returned to CCU and in the end I spent 9 days there. I was moved to a regular room on a Wednesday and was to be discharged 2 days later on that Friday, but my incision got red and hot and started leaking sero-sanquenous fluid and had to be opened in two places even though I had two JP drains. My incision was packed daily and dressed. Due to the draining of my incision I was not allowed to leave the hospital until the following Wednesday making my first stay at the hospital 17 days. I came home with a PICC line, a J-tube and home health care nurses to assist with the enteral feedings and thrice daily IV antibiotics as well as dressing changes. I was not allowed to eat anything (NPO), and only allowed small amounts of water and or ice. I was not allowed to eat and allowed only small amounts of ice and water. I had been NPO the entire 17 days I was in the hospital and would continue to be NPO for a total of 55 days. The days that followed my return home the arm I had the Picc line in started to hurt like hell and by Sunday night (home only 4 days)  my temperature went up to 102.6. We knew that something bad was going on so I called Dr. Greenbaum's office. His answering service connected me directly with him. He told me to pack a bag and get back to the hospital. It turned out I had a subclavian blood clot (a DVT) caused by the PICC line. The PICC Line was also superficially infected and was removed, but because I needed IV antibiotics at home I had to have another one put in my other (left) arm. I was put on Warfarin and Lovonox while in the hospital. I spent another week in the hospital and was discharged. I came home on Warfarin and again started to settle in. In total I was on blood thinners for 3 months. Four days after I got home I got a visit from the visiting nurse so she could packed and dress my wound. I went to bed later that evening my husband came up a few hours later to hook up my enteral feeding (I had a J-tube) to discover that my night shirt was soaked. He took the dressing off of my incision and discovered white viscous ick (gastric stuff) everywhere.When I raised my head to look ick would come bubbling out of a hole in my incision. Once again I called the doctor the next morning and back to the hospital I went. I ended up getting a gastric leak in the area that had been previously swollen and operated on previously. This in turn caused a fistula which was draining out of the open incision. I spent another week in the hospital again. I came home with a Wound Vacuum pump. Total time in the hospital over Aug. and September was about 27 days.

For 60 days I wore the wound vac pump while it sucked out ick from my stomach and helped close my incision. In mid October the J-tube was  removed and I was put on full liquids. The PICC line was removed at the beginning of October. I had been moved from being NPO except water to clear liquids to full liquids to actually eating. Unfortunately when I did eat anything that wasn't pudding or yogurt consistency I threw up. From October to April 10 I was moved back and forth from full liquids to soft foods. I had a lot of food intolerance. Most meats were impossible for me to eat. Most of my protein came from cottage cheese, Greek yogurt, and protein drinks. 

For a total of 17 months I dealt with the now chronic gastric leak and fistula. In the end I had internal and external fistulas (5 in all). In April I was put on TPN (IV nutrition) and made to go NPO once again. This was only supposed to be for a couple of week, however, it it's turned into 6 plus months.  In June I got sepsis from the tunneled PICC which was in my jugular vein and being used to infuse the TPN. That PICC was removed and a Groshong cath was inserted into my subcavian vein just above my left breast and was there from June to December. In September I underwent a Enterocutaneous Gastric plug procedure. The plug was supposed to plug up the fistula and the gastric leak, however, it the procedure failed and didn't work for me. Frankly, at this point and knowing what I know, the plug never had a chance since I had so many internal fistulas. In October I went back to the GI surgeon who I had been referred to by Dr. Greenbaum. He said that surgery was the next step, but told me that I potentially could come out of the surgery without a stomach. Even though the potential outcome could mean a total gastrectomy I decided to have surgery.  December 15th, 2010 I underwent another surgery to excise out the gastric leak. While the surgeon was inside of me he discovered three additional blind fistulas. One that went from my stomach to my colon, which had to be repaired as well. The other two were tributary fistulas and were causing internal abscesses which had to be cut out. I had two external fistulas (fistulas that went from my stomach to the outside of my body) that were cut out as well. I ended up having a lot of strictures around the lower portion of my stomach that was causing poor blood flow to my lower stomach. I had a stricture around my pyloric valve that was so tight that the tip of a pen could not have penetrated it. This was why I was throwing everything up that wasn't pudding consistency. In the end I lost another 1/3 of my stomach. I sadly lost my pyloric valve and had to go back to having a pouch. Some of my intestine had to be cut out however, my intestines are still a DS configuration.

As a revision I am an anomaly, but you should know that sometimes things do not always go the way we think they will.  You must count the cost of having a revision. It bears repeating; think twice, cut once.

So, in the end I have lost (this time) 145 pounds so far. I'm close to being at my goal of 150 and close to being at my surgeons goal of 140 pounds. 

Me at 302 on the right and now around 160.


I'm able to eat now and rarely throw up anymore. I have no more medical appliances in my body. It's been a long year and a half and there were times when I wondered if I was going to make it to the next day, however, I'm finally at a place where I am enjoying my DS. 

Peace,
Maddie

 

That is too incredible for words! Wow, I am blown away, I would have just had my stomach out be done with it. I think my surgeon must have anticipated these complications and just taken it out. I am wondering if your first Dr. really was the culprit or the second surgeon who "corrected" the problem. Or do I have it confused? Seems to me the first surgery albeit not successful weightloss wise was good healthwise. The corrective procedure by the "vetted" surgeon was the disaster. My surgery for correction turned out no better. Corrective procedures are a huge mistake. I would recommend never, never doing it for anyone! What a nightmare for you, your such a trooper for hanging in there. Good for you! I think we are a certain type of people to begin with, those of us who have gone through the weight gain and then the survival process. You have to be a fighter to withstand the onslaught and the violence that we put our bodies through.

Fact is, I wouldn't recommend the surgery in the first place. Have your thyroid checked, several times, go on antidepressants, exercise, take vitamins do anything but don't have this surgery! Don't have this correction either! Life is short enough without you shortening it even more with near death or death, just so you think don't have to control yourself for weightloss. Well, news flash folks, you do have to control yourself. Everyday is a battle! excuse me, let me get off the soap box. well, I feel better... for anyone reading this, think a thousand times, over and over, but you get my drift. Do you and your family a favor read The Thyroid Diet by Mary J Shomon (very informative and helpful, helps you understand why we more than likely have a thyroid problem and suffer from depression and why even if our levels are normal the first time it doesn't mean that their normal. Keep getting checked! If you have had surgery and are having trouble keeping weight off, read this book! If you take thyroid medicine, read this book! Go to caloriecounts.com and look up thyroid and you will find a ton of information on how to eat with a thyroid condition. If you have bi-polar disorder and have taken lithium make sure you have your thyroid checked. I could go on and on... JUST GET YOUR THYROID CHECKED MORE THAN ONCE! If you have symtoms and your levels are normal insist on trying medication anyway, if your levels stay normal than your on the right track! and if it helps then, well that is twice as nice! Just remember, you won't lose what you gained from thyroid medicine. But you will stop gaining. How did I get off on this tangent, sorry. It needed to be said. Most people don't know how easy it is to have a thyroid problem. I better close for now before I bore you to tears. Hope you gleaned something good, thank you for sharing your story. THAT IS WHAT People need to read!

I am wondering if your first Dr. really was the culprit or the second surgeon who "corrected" the problem. Or do I have it confused?

The first surgery in 1999 was for my RNY and went off without a hitch. I had no post op complications. At the time the surgeon I had just put staples across the upper part of the stomach, but left the latent lower part of the stomach attached. For the most part this is no longer done. Bariatric surgeons more often than not now make a pouch and transect the latent lower part of the stomach and push that down out of the way to keep it from reattaching.  My second procedure in 2009 was not corrective. It was a revision from one weight loss surgery (RNY) to a duodenal switch (DS). As I said in my post prior I had the revision because my RNY failed me in the end. It basically tanked my metabolism and even though I had done diets and followed the rules (for the most part) I gained and continued to keep gaining weight. I went from 210 to 302.  I personally was unhappy with my weight and having already been 430 pounds the thought of gaining to be three hundred again made me sick.  I just never wanted tobe 300 and anything again, yet there I was and with no end in sight for gaining weight.  The surgeon was very upfront and told me that 1 out of 4 that undergo revisions could end up with a gastric leak. I was not unaware of the risks. I took the risk and played the hand that was dealt me. I don't know why the universe threw me into the fire, but it did and even then I fought. I just knew that it would all work out, somehow and I would be healthy again. It took some time (18 months) and another large operation, but I'm thankful that the last operation was successful in mending me. There was a chance that the fistulas could come back. I might have another leak or abcess. I lost all about about 2% of my stomach. The surgeon left what he could explaining to me that the intestines don't like to be directly attached to the esophagus and that what he really left was more for a buffer.  I still have my hiatal valve which keeps food from backing up.  If I eat too fast or foods too dense they get stuck and I end up in pain until it either passes through or I throw it up.  Fortunately I have learned the hard way and so I have limited bad eating episodes. 

As for my thyroid, it had been checked six ways to Sunday and always came back as normal.  I wasn't surprised by this. Obesity runs in my family and on both mother and father's side.  I was doomed or genetically destined to be fat. I cannot tell you how many times my thyroid levels had been checked. I had even read about a little know enzyme that could be thyroid related and had my doctor check for that. I prayed it would be as easy as that, but no.  My thyroid was and continues to be completly normal

For me, even with the complications I'm very happy with the results.  I do recommend the surgery, but I don't recommend it to everyone because the DS isn't for everyone.  

Maddie