If you are considering a revision from RNY to DS, you should read this. Think twice, cut once.

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.

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. 

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

Wow,
I thought I was going through a living hell but nothing compared to you. I got ryn in 2007. Everything was fine until six months out. I had lost about 130lbs. I was below my weight. At this point I started having severe hypoglycemia and seizures. I would change positions from standing to siting and pass out. I was always over tired. I could sleep for 14 hours and then want to go back to be because I was so drained. They ended up doing a tilt table test on me. I didnt pass. What they found out was my heart rate doing nothing but standing got anywhere from 175-195. Then my blood pressure would plummet and I would black out. So They put me on heart medication and medicine to raise my blood pressure and medicine to control electrolites. I still have problems with all of this and it has been over 3 years. I went from being pre-diabetic and having hypothroisism to. Having seizures, low blood pressure, tackacaradia, sever hypodlcemia. Recording as low as 19. I have to carry a glucogen pen aound and have had to train my 12 year old and 5 year old how to use it if mommy doesnt wake up. I have two different docotr who say they think part of may pancreas needs to be removed. but it this happens then I will be a full blown diabetic and have to take insulin for the rest of my life. They keep daying I might have nueroglycopenia or nesidoblastosis.
It has been three years and I still have all these problems and more.. I am on so much medication I should have grass growing out my butt. LOL I am now having to get iron transfusions, b 12 shots,take potassuim, and vitaim d. I have gain all but 30 lbs back and I never know how I will feel from day to day.
Its really frustrating ever specialist has just bandaid their problem with medicine and send me to the next person. No one ever has found the root of any of my problems.

So here I am three years out going from taking 2 medicines daily to 17. I have gained all but 30lbs back and I feel like this proceedure if not fixed is gonna be what kills me in the long run. People ask me all the time if I would do it all over again, My response is no. Gastric bypass is so permenate and really to me no matter how much couseling I got and stuff until I had it done I would never had to comprehend what all was involved and how bad. I am not the normal. I am the small % that problems happen. Its just that I am the small percent that everything has gone wrong with the proceedure. I have turned in my paperwork to a surgeon asking for a revison. I have not received a response. I am waiting day by day and taking it one at a time.
I think the whole down side to this is I did this to have a better life and have a second chance. I wanted to be healthy for not only myslef but to be a good roll model for my kids. Now I cant work or do most daily activites. I need something to change. Hoping for a miricle. Thank you so much for sharing. I am sorry you went through hell and back but so glad you shared your story and gave people like myself to think about the out come of revisions. I am glad you are doing better and I pray things stay the healthy route for you.

Oh honey, you really have had a rough go of it!  I had a tilt table test done recently too because I passed out twice dead cold when I got up once to go to the bathroom and another time to answer the door. My results came out very much like yours except I didn't pass out. They tell me I am dehydrated, but I drink about 100 ounces of fluid a day.  When I had my RNY I had had to get iron infusions too because my hemoglobin was at 6. I was tired all the time too, but after a few infusions I did start to feel better. I was b-12 deficient, but I have been self injecting b-12 for over 2 years now. As a DSer, I have a LOT more malabsorption and so I take vits all day. My recent blood work showed a slightly low vit. A level, and my pre albumin is slightly low too, but everything else is good.

I am often asked if I would do it again. I suppose only a fool with precognition would say yes they would. I don't know if I would do it again. Somedays I think yes, and other days I say no. It took a long time for me to finally get to where I am right now. Even then I'm only 8 weeks post op from my last surgery. I have just 2 ounces of stomach left and if anything ever happens to that little bit of stomach I'm screwed.

What sort of revision are you looking for? Something to reverse your RNY?  I was thinking that maybe you might want to see if you could revise to just a Vertical Gastric Sleeve. It would give you restriction, but no malabsorption. Your intestines would be put back to pre RNY.

I really wish I was able to give you some sound advice. The only thing I can say is to keep your chin up and to keep a good attitude. I know for me that it helped me a lot. Trust me, there were days when I felt like **** and wondered if I was ever going to be able to eat without feeling like death, but I tried hard to keep a good attitude about it all. Of course I had a few pity party days, but I accepted that this was my journey and that in the end all would be well. For me it isn't perfect, but it's good enough. 

I hope you are able to find peace in this mess. I'm really sorry you are still suffering complications.

Maddie

Coastiegal,

I copied and pasted this from another thread where I posted this. I thought it might help. I went through much of what you did. Have you considered the possibility that you might be suffering from low cortisol? De a search on Adrenal Insufficiency or Adrenal Fatigue. The treatment for it, unfortunately, is steroids. Steroids just about ruined my health, as you can read about below.

One other thing. I read that when you eat and the food enters the intestine quickly, the bowel pulls water in to make the food easier to digest. When I read that I thought it made sense if low blood volume/dehyration was the problem. Just something for you to think about.

I had RNY in 2005. I weighed about 240 and my goal weight was 125 pounds. It took a couple of years but I reached my goal weight.

Shortly after my surgery, I began having a lot of problems with fatigue, blacking out when I stood up, nausea, etc.I researched my symptoms and believed it was low cortisol. I asked to for a scan of my adrenals and instead of finding a problem with my adrenals, they found a scary looking ovarian cyst. All attention was then diverted to that.

Nine months after my RNY I had my ovaries removed. I was losing weight rapidly, compromised nutritionally, and suddenly I was in menopause.

Also, in 2004 I was prescribed narcotic patches to control my migraines.

After this, my low cortisol symptoms continued, only now I had hot flashes, insomnia, and migraines too. All the symptoms of menopause. In spite of the patch, I was still getting terrible migraines.

Six months later I saw an endocrinologist and arranged to have an ACTH Challenge test done. I had the test and the results showed that my pituitary gland wasn't stimulating my adrenals properly. I was having low cortisol just as I thought, but the problem was my pituitary, not my adrenals. The endo said it was because of the narcotics I was on and that nothing could be done for me.

Two or three months later I decided to go off the patch. It was doing more harm than good. I have to say that narcotic withdrawal is sheer hell. I will never judge a heroin addict again.

I had a terrible time going off the opiate patch and ended up on Suboxone. It's a partial narcotic designed to treat opiate addiction. I went on it because I was addicted to opiates, I stayed on it because I have chronic migraines. The Suboxone didn't interfere with my pituitary as much; my cortisol issue improved, but didn't go away.

However, by spring of 2009 I was doing well. I was thin and I had lots of energy. Except I was having these scary blood sugar crashes that seemed to come out of nowhere, and they scared me. They were bizarre and intense. I have since learned that it's reactive hypoglycemia. You eat something, it enters your intestines too fast (thanks to your RNY), your blood sugar spikes, your body releases insulin to deal with it, your insulin takes out too much blood sugar, and you get a blood sugar crash. This can happen hours after a meal. And for me it seemed random. I still don't know what triggers them, aside from soda, I mean. 

Then one day all my low cortisol symptoms came back. I saw my doctor and we decided to try a steroid for awhile. He put me on Cortef (hydrocortisone), then three weeks later I was informed that my insurance no longer covered him. 

Long story short, for a long time I had no PCP and I made my own medical decisions. I made some BAD decisions too. I stayed on the steroid, even raised the dose a few times thinking I needed it, and the steroid ruined my health, my teeth, possibly my bones. I didn't know what I was doing and I had no doctor to manage things.

Turns out that my thyroid dose was too high and somehow it was putting too much strain on my adrenals. But by the time I got this figured out, I'd been on the steroid for a long time.

Well, Armour thyroid, the only med that works for me, was no longer available around this time. I was forced to go on meds that did nothing for my hypothyroidism. It's been just in the past few weeks that my thyroid has stabilized. I'm back on Armour again, thank God.

In addition, the steroid lowered my immune system and I was constantly fighting infection. I was running fevers all the time and just sick, sick, sick.

The steroid destroyed my teeth (steroids interfere with calcium absorption) which required $10,000 worth of repair. I'm still working on that one.

So, with my being hypothyroid, the steroid causing me to gain weight (a side effect), running fevers all the time and too sick to get out of bed for 18 months straight, you can imagine what happened to my weight.

Yup, you guessed it. I gained it ALL back. All 125 pounds.

Now I'm almost weaned off the steroid. It's kicking my butt, too. But right now my adrenals have "gone to sleep." It will probably be a year before they are working fully on their own again. In the meantime, I'll have to keep my steroid on hand and stress dose as needed. I'm going to be very fatigued over the next year.

I'm off the Suboxone, so now there's no more interference in my pituitary function.

And I'm seriously considering a revision to DS. But I'm terrified of the surgery. I know it's tricky, and after reading about Maddie's ordeal, I'm even more scared.

But it seems my choices right now are 1) live with the RNY and try to deal with the reactive hypoglycemia the best I can, stay fat and deal with my nutrition needs the rest of my life, or 2) revise to DS, praying like crazy that things will go well with the surgery and I won't have complications, lose my excess weight, keep it off, no longer dump, and deal with my nutrition needs the rest of my life.

I'm choosing the latter, but I'm terrified something will go wrong with the surgery.

Lynda
 

Maddie,

Thank you for posting your story.  I too, think it is important for people to know as well. 



-Jamie

Thank all of you ladies sooooo much for posting and telling your  stories. After this I think that I'm just going to revise my pouch while having my gallbladder removed and let it be. I'll continue exercise and pray about it. But I'm not willing to take the risk of a revision.

"Thank all of you ladies sooooo much for posting and telling your  stories. After this I think that I'm just going to revise my pouch while having my gallbladder removed and let it be. I'll continue exercise and pray about it. But I'm not willing to take the risk of a revision."

Don't let all of this scare you. You may not have these kinds of problems. Both Maddie and Coastiegal said that they were not part of the norm, and my problems mostly came from medications and not having good medical care for a long time. I probably would have had some of the same health problems anyway, even without my RNY. I think my RNY just compounded things.

It's like marriage, I guess. Some people marry, and their spouses cheat on them and abuse them. That doesn't mean every marriage is like that. Many marriages are good. You just need to be aware of what could happen and do what you can to prevent the bad things from happening.

I hope I'm making sense here. Take care,

Lynda