Any body have a fistula repaired?

 I recently found that I have a fistula.  Doctor says the only way to treat it is remove the pouch and reconnect the stomach.  It sounds like a "sleeve" like operation.  He did not call it that.  I go back to see him in Nov. and will discuss procedure in more detail at that time.
I am worried because I have had several complications over the past 2 1/2 years and know there must be a lot of adhesions including mesh for hernia repair.  Just wanted to know what to expect.
Thanks ahead of time for sharing your knowledge.

I had a gastric leak with two external and three internal blind fistulas. Eighteen months of trying different things, including a total of 11 months being NPO and on TPN, a fistula plug procedure, and other things it took another large operation this past December (10)  to repair my leak and to excise out the fistulas.  It worked, but I ended up losing another 2/3rds of my stomach along with my pyloric valve.

 

 Thank you for replying.
My doctor says that he will take out the pouch and reconnect the old stomach.  I will keep the pyloric valve but will not be able to eat as much.
I have a lot of questions,if you don't mind.  How did the surgery go?  Was the recovery about the same as you first surgery?  How about your diet?  Did it change?
I see that you are almost at goal.  Good for you!  I got down to 20 lbs below goal but since Dec.  I have gained 30.  I follow all the rules but can stop the gaining.

Thanks again,

Karen

I was a revision from RNY to DS.  The last surgery to fix everything went fairly well, though for a couple of weeks the doctors suspected I might have another leak though that was never confirmed.  The interventional radiologist said I did, though the doctor wasn't so sure. I ended up having to stay in the hospital for 3.5 weeks. I was supposed to be in only 4-5 days.

Recovery was seemingly much better than any of the other surgeries I had in the past, but I suppose that is because I did recover for some three weeks while in the hospital. When I came home I basically just spent time healing and relearning to eat. I was only allowed pudding, and other soft foods for a month then released to eat anything. I do occasionally throw up on some foods such as stringy meats (like pot roast, pork bbq) or very dry meats.  Occasionally hamburger doesn't sit well with me and will make me sick, but other than that I have no real issue with most foods. The way my intestines are configured now sugar does have the unfortunate effect of making me quite flatulant as well as very poopy.

My diet changed radically. I went from being able to eat nothing to being able to eating anything and in normal amounts. The problem is that I have a pouch, but no real stoma to speak of. The intestine is attached to the bottom of the remnant stomach so I have very little restriction.  My intestines remained a DS configuration and as such I have a very short common channel of 50 centimeters and lots of malabsorption. Most food quite literally just slides in and out of my stomach. I have several vitamin deficiencies and take a LOT of vitamins in large doses (such as I take 150,000 units of vit. D daily). 

My weight has gone up to around 175 and I have been holding there for several months. Admittedly it is because I'm not very careful with carbohydrates, especially simple carbs. I will be spending the month eating mostly protein in order to bring my weight back down.  

Here is long post I wrote about why I had a revision and what happened. If you are interested feel free to give it a read.

Maddie
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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

 Thank you for sharing your story.  You have been though a lot.  I am glad you are well and look great!
I only fear that the fistula will leak into into the area around the stomach.  I know this is toxic.
I will have to trust my surgeon and my research.  
Hope things continue to perform correctly for you.
Thanks again.

Things to look for if you have internal leaking would be fever, pain, just not feeling right. Trust me, you will know something is wrong. Generally an upper GI will confirm the existance of a fistula in most cases.

Maddie

 I had an upper Gi and saw for myself, I peeked, the filling of both stomachs.  Just playing a waiting game now.
Thanks again.