Fistula Questions

Hi everyone - its been a really, really long time since I've posted here.  I guess mainly because I've felt so down about having gained back some of the weight I lost after surgery. I just found out that I have a fistula between my pouch and my stomach (a leak).  Has anyone else had this?  If so, what was done to correct it? I was able to see the liquid from the upper GI test run out of the pouch into the old stomach.  In addition, I have a large stoma opening - so food is leaving as quickly as it goes in - no wonder I've gained weight!   Otherwise life has been good.  Monday is the 4th anniversary since my surgery, and up to now, I've had absolutely NO complications.  I'd love to hear from some of my old friends, so if you are reading this, please send a message and say hi. God Bless, Kathy Bilodeau

Hi Kathy, I haven't had any experience with having a fistula or large stoma opening..I have heard of a new procedure for the enlarged stoma which some doctors are doing and it is injections of a substance to produce scarring around the stoma and tighten it. As for the fistula you might post that on the graduates message board. There are alot of postops who are quite a few years out from surgery and you might get an answer there.

 

Best of luck

 

Sher

Thanks for responding.  Actually, I found out about the fistula because I was a candidate for the RESTORe procedure clinical trial at Brigham & Womens in Boston.  They measured my stoma opening first with an endoscopy - and it was larger than it should be - so I qualified.  The next morning I had an upper GI and they found the fistula.  Now, I probably don't qualify for the study (they were going to perform the revision on the stoma for free), and I'm not certain what to do yet about the fistula. I'll try the other board - I hadn't seen that one yet.  Thanks for the info. Kathy

HEY kATHY, HOW ARE YOU?  i HEARD A VERY GOOD DOCTOR IN NEW YORK CITY . IF YOU WANT TO COLLECT INFORMATION THEN LET ME KNOW ABOUT IT. I WILL RESEARCH INTO THAT. HAPPY HOLIDAYS! HUGS KATHY K

Hi Kathy Yes, I've heard about a doctor in NY as well.  However, I don't need a new doctor - I still have the wonderful, Dr. Bell, and if necessary, I have Dr. Thompson at Brigham & Womens.  Since I posted this morning, I found out that Dr. Thompson can fix the fistula via endoscopy - which would be the method I would prefer.  I have an appointment with Dr. Bell next week, and I'll be able to find out what he thinks I should do.   The thing is, I've been unable to find anyone who has had a similar experience, and yet, I was told this is a relatively common occurrence. Thanks for offering to help. Kathy

If you were done laparoscopically (which I thought was how Dr. Bell performs the RNY), then your pouch and remnant should have been transected (that's what the stapler does),  Has anyone explained how the fistula formed?  Given the truly minimally invasive nature of the work at B&W in Boston, if I needed any sort of revision, I would race there for the corrective work-- they have assembled a remarkable team. 

I'm really not sure how the fistula was formed, or when it formed.  Interestingly enough, I emailed Dr. Bell and he replied that the fistula would not be the reason for my weight gain, in fact, he said most people with fistula's have weight loss....  That is different from what they said at B&W.  I also know that my stoma is 3 cms - should only be 2 cms, so I would have qualified for the RESTORe clinical trial, which would have been great, and the large stoma would cause weight gain.

Thanks for your reply - I appreciate it. Kathy

 

*^&%)$)(%  I had a reply all typed up for you, and the web site 'ate' it!  Damn. Anyway- I guess I'll start over. I fistula too- huh?  We'll that's no fun!  I'm sorry you are having two complications!  Sheesh.  Well, here's what I know.  Fistulas are not THAT common, Did Dr Bell happen to tell you what his incedence % of fistuals were?  I'd be guessing it's pretty low.  Therefore, not many people know much about them.   First and foremost- I hope you know that you did not cuase this, and there is nothing that you could have done to prevent it.  You know that right?  It's just a freak thing that your body formed.  Secondly, while some fistuals cause loss, other cause gain and still others cause nothing.  It depends on what kind of fistula you have!  (i.e. what two things is it connecting?)  If the fistual had formed from the pouch to the old stomach- you probably are absorbing more food (which could cause gain).  Additionally, you could have other problems like say for instance with acid reflux... just for example.   Some types of fistulas cause all sots of problems...and pain too.  Let's hope you dont have one of those! Anyway, transsecting the pouch can help prevent fistulas, but it does NOT completely eliminate the possibility.  So, even if you're transsected, they can form.   How are they treated?  Well- that I believe depends on you, your surgeon and what kind of fistula it is.  Some Dr's may prefer to leave it alone, others may want to fix it.  Either way- I'd be willing to guess it's probably not a lap type proceedure.  (I hope that maybe you will find me wrong on that.) One way or antother- you're gona need Dr. Bell to take a good look at it and thoroughly discuss your concerns and make him aware of the problems you're having with re-gain (assuming he isnt or doesnt understand how MUCH it's effecting you) AFTER he sees the fistula himself, I'd think he could better determine how it's effecting you and what to do about it.  Can you get a copy of the GI test sent to Bell?  If not, you'll need him to re-do the test (YUCK!!! I hate Upper GI's- it makes me gag to think about it) so he can see for himself what's going on. So, it may be time for you to start getting pushy with your health care- and pro active.  If Dr. Bell perfers to take the laid back approach, and you want pro-active- you're going to have to insist on it.  Often times, that's not an easy process, so I wish you luck (and strength and perserverance) with it. OK, so after all of THAT- Happy Anniversary to you.  Four years, huh?  It's been four years + since we met!  I just came across my FIFTH anniversary-  I can't fathom it's been that long.  I simply CANT believe it!!!!  Well- congrats to you on the things you have done so well and your overall health.  You're a great lady.  I know you'll get through this.  Email or call me if you want to talk or get together. hugs to you-