Horrible episodes after RNY

I had a Lapband put in on 12/26/07.  After only losing 12 lbs., I was converted over to a Gastric Bypass on 1/12/09.  I began losing weight during the first two months but since then I haven't lost any weight at all.

In March, I began having these horrible episodes.  I have gone from having 2-3 episodes a month to 2-3 episodes a week, to 4-5 a week now and sometimes twice a day.  They come on pretty quick.  I get nauseous and dizzy and then I get a sharp pain in my stomach that pushes up into my esophagus and chest area.  The chest pain alone is very intense and I am unable to swallow or talk during these episodes.  I also cannot put my hand on my stomach because the slightest touch is very painful.  I must remove my bra because the compression hurts as well.  Note: these happen no matter what I am doing.  The majority of the time they occurred when I wasn't eating.  When they first started they lasted about 15-20 minutes but now they last between 1-8 hrs.  My GB surgeon put me on medication, had an Upper GI (negative) and I also had 2 Endoscopes done.  The first one showed a small narrowing where the stomach starts, so I had another one on 10/14/09 with balloon dilation.  The doctor who performed it told me that he didn't think that it would make a difference.  He then asked if my GB surgeon is planning on doing a revision on me because he felt that should be my next step. 

When I spoke with my surgeon at the beginning of October, she wanted me to have the EGD with the dilation and then give it a couple of months to see if things cleared up for me.  Well it's 12/16/09 and it has not gotten better but much worse than before.  I go to see her tomorrow to see if she is going to do a revision. 

I don't know a lot about the other types of revisions such as DS, Gastric Sleeve, etc...Any input you could provide would be much appreciated!!

 Marie....I am 4 yrs post op from RNY and have NEVER heard of anything like this before.   I am SHOCKED that your WLS Surgeon let this go on so very long.   I would call today and ask if there is anyway that you could be seen today !!!!   I would go for the sleeve.   That is a AWESOME surgery.   I know of very many successful people with the sleeve.    What they would do is go in and remove some of your pouch.    Lots of WLS want to band the RNY patient who isn't losing but the bands can slip and cause problems.    Do research on the other surgeries but I would go with the sleeve !!!   I will be praying for you and please update us on what happens !!!!   Good luck !!!!


Hugs and blessings ~~~ Vivian

That really wouldn't be wise.  She already has bypass.  They'd have to take down her entire bypass and then give her another restrictive only procedure that she already tried and it didn't work.

 Marie....hope you don't mind but i am coping this post and putting it on the RNY MB to see if anyone there has experienced anything like what you have.    Hopefully someone will give you answers.   Good luck again.


Hugs and blessings ~~~ Vivian

Hi Marie -

I have never heard of anything like this before.  And I'm shocked that your surgeon is not being more aggressive with treatment and figuring out what's wrong.  I think before you even think about another revision, you need to have more tests - more aggressive tests - done to figure out what's happening.  Some thoughts...

** If the Upper GI and Endoscopes come back showing nothing is wrong with your pouch, then they need to be looking elsewhere.  Your bypassed stomach?  Your intestinal tract?  Where is the pain coming from and what's causing it?  Exploratory surgery might be necessary to see what's going on inside.   Think hernia, ulcer, adhesions, bowel obstruction, leak, twisted bowel, etc. and make sure all those things are being explored.

** Is there any pattern at all that you can pinpoint?  Does it happen have a certain food?  Does it happen after a certain timeframe after eating (15 minutes - 3 hours)?  Does it happen after a certain activitiy (exercise, lying down, etc.)?    Start keeping a journal of everything that you do or eat during the day and when these episodes happen and maybe a pattern will appear once you see it in writing.

** What other doctors have you seen besides your surgeon?  Your PCP?  Pain specialists? Any other specialists?  If you haven't seen anyone else.... it's time to get a medical team assembled and mobilized.  Get as many heads in the game as possible and ask them to work together to figure it out.

** Are you on any medications that might be triggering these?

** Are you able to eat and get all your protein, water and vitamins in right now?  If not, talk to your doctors and see what they can do to help to make sure you're getting the nutrition you need while they figure it all out. 

** BE LOUD!  Be the squeeky wheel that gets the grease.  Don't let the doctors sit back and "wait and see" what happens.  Now is the time to be your own biggest advocate and demand test after test after test until they figure it out.  Be a pest.  Be demanding.  Nobody cares about your good health more than YOU do, so don't let them be lax on this. 

Keep us posted on what you find out.

~Pam
 

Marie,

I'm so sorry for all you are going through...

I agree with Pam that you need to be more aggressive working with your surgeon to diagnose the issue before moving into a revision.  Make sure that you are getting the right tests and attention to figure out what is going on.  The pain you are in isn't normal and you shouldn't have to live with it!

I noticed you are in the Columbus area.  If you are looking for a second opinion or don't feel that your surgeon is being aggressive enough, Dr. Myers at Riverside is very good and I know he regularly sees patients who have pain or other issues and had surgery with other surgeons.

I wish you luck finding out what is wrong very soon.

Thanks everyone for your advice.  It doesn't matter what I am doing whether I'm sitting, laying down, riding in a car, etc...the episodes keep coming.  I have kept a journal and I track what I eat as well as getting in the right amount of protein and vitamins.  The majority of times when this happens, I have not had any food at least 4 or more hours prior to it coming on.  I even had an episode on the way to my surgeon's office one time and I also had one while I was waiting to be taken back....ugh!!  They did find a hernia along side my stomach back in March but my surgeon does not fix hernias until at least 1 yr out.

I am tired of dealing with this because I have a disease that I must fight each and every day on top of this situation.  I had simple foot surgery back in 2000 and about 6 months later was diagnosed with RSD (Reflex Sympathetic Dystrophy).  It started in my feet, legs and lower back but eventually spread through out my entire body by 2005.  I do have a Spinal Cord Stimulator, which has not been functioning properly since May.  I know that it is NOT causing this problem because the episodes started back in March and my box was working properly then.  I also have a morphine pump in my stomach and I take other medications to help with the disease as well.   

I do have an appt. tomorrow (12/17) with my RNY surgeon.  She told me back in October that if the EGD with balloon dilation does not help after a couple of months, then she would consider my RNY a failure. Note: the doctor who did the EGD told me that it would be in my best interest to have a revision done at this point.  The majority of EGD's that he does is on WLS patients, so he is used to seeing various things go wrong.  He also mentioned that I may have a twist in my stomach as well.  God has been guiding me to not stop until I can get this problem resolved.  I WILL NOT quit until this is resolved once and for all.....

The only thing, besides a BIG HUG that I can contribute is I read somewhere on thses boards about someone's intestine "telescoping" it was either the small intestine telescoping into the large intestine or something to that effect.  Maybe you want to research "telescoping intestine" and see what the symptoms & treatment are?  Just a thought.
If I remeber correctly, they did all sorts of tests over a long period of time & EVERYTHING was negative & they ended up doing explatoey surgery & discovering it while in surgery.

I know this is not 'sunshine & rainbows', but I really hope you get some answers!!!  And if you feel that "waiting & seeing" is agonizing............ GO STRAIGHT to the ER!!!
Some doctor with a "fresh set of eyes" might see something, because they do not know you, and have to be more open & objective!!!!!!



Take Care & keep us updated!!  Please!!
-Jamie

Hello Marie:

I know exactly what you are talking about as I have suffered from something almost exactly the same for 20 years...I had Gastric Bypass in 1989 which was a revision from a Stomach Stapling and about a month after surgery I began suffering these same type of attacks and I have had every test in the book but they can't seem to figure out what it is...I just had in May an ERNY and following this surgery about a month out I began to have more of these attacks frequently...Before surgery I only got them maybe once a month or less and after I began having them all the time....So again I've begun going through all the tests. My Lipase levels were normal which is what they check for when they think it might be Pancreatitis but my Liver Functions were highly abnormal have they checked you for that? Also, they are now thinking that it could possibly be Sphincter of Oddi and there are people on this site who know of people or who have had an issue with that...This Dysfunction normally happens after removing the Gallbladder...Have you had your gallbladder removed? And if so how soon after did you begin to have pain? Or does it even correlate for you? The Sphincter of Oddi is a Muscle which allows bile up into the bile duct and this can stick closed which allows bile to build up and cause pain until it releases and and the pain goes away...Many Dr.'s don't even recognize this as a disorder but if you google it you will read much about the disorder...Don't let the Dr.s make you think your crazy make them search and search...Good Luck to you.

Janie

Marie, I have some thoughts about this, but it's pretty complicated, so I'm sending you a pm.

Larra