I had my RNY reversed, anyone else out there?

I posted this on the IL forum, and then I realized that there was a forum for complications, so I figured I would post here also, I hope you don't mind. I tried to give the reader's digest version of my journey, but it is still too long! I had RNY on 10/30/07, and I was fine until about Feb/Mar 2008, and then the problems started, lots of stenosis (I have lost track of how many EGD's I have had, maybe 8-10 in 2008), I have had 3 more surgeries since my original surgery, the last one in November by Dr. Alverdy to do an exploratory with possible reversal of gastric bypass, which they ended up having to do. I don't want to scare people who are thinking about the surgery, believe it or not, I do not have any regrets and I would do it all over again, and keep in mind that I am the exception, not the rule for complications.  I guess my anatomy just does not work with this surgery, it made me very sick, several trips to ER/admissions to the hospital, I think the scariest was the malnutrition (from not being able to eat due to symptoms) and having to get a central line to get IV nutrition at home, it has been a long road...now I am faced with a whole set of problems/emotions I have never had in my whole life...not being able to eat enough, trying not to lose anymore weight (that's a mind melter there), and having people tell you that you are too thin and telling you to eat more.  I want to eat more, I am just still recovering from the last surgery, and I am still having some intestinal complications from that.  I have a wonderful support group, really great friends there, but I mostly go to support others, I don't talk about my issues because I don't want to scare people, and there isn't anyone there with these problems, I almost feel like it would be offensive for me to talk about how I need to gain weight and eat more calories!  I just didn't know if there was anyone else out there with any of these issues. Thanks for listening :)

I am also having a lot of the same issues you are. I have began to explore a reversal. Did you have the reversal yet ? And if so, how did it go and how did you feel afterwords ?

Jeremy,
I'm sorry that you are having so many problems, and I hope you feel better soon!  I did have the reversal, and I feel that overall it solved my eating problems (before the reversal I was nauseated and sick every single time I ate, and usually only after 4-5 bites of food- I got to the point where I could only get in about 500 calories a day on my own)   I was only going to be in the hospital, after the surgery, for 2 days, but I ended up being there for 11 days.  My malnutrition was so bad going into surgery that my blood sugar went haywire after surgery (way high numbers, which I have never had, so they ended up giving me insulin, and I have never been diabetic), I think it was just a stress response of the body to surgery, and then the day I was going to go home I started getting stabbing pains across my left abdomen, and it turned out that all the air that they blow you up with for the laparoscopic surgery was trapped in my abdomen, along with not being able to go to the bathroom, it was painful.  The only lingering effect that I still have (I had my reversal on 11/3/08) is that my calorie intake is still on the lower side, about 700 a day so far, and since I have had so many surgeries involving my intestines that I keep having a partial small bowel obstruction that gets kinked and then straightens itself out again, but when it happens I try and manage it at home with pain meds/anti-nausea meds until it passes, but there have been a couple time I have had to go to the ER (where I work, thank goodness, always know that I am in good hands) for better pain management/nausea management/testing to make sure the obstruction has resolved before they let me go home.  That is the only part that scares me right now because I do not want to have another surgery, and I know that if it kinks and decides to stay that way, surgery will be necessary to cut that part out and then we start all over again...I just try and have good thoughts and will that away   They are worried about my labs/nutrition at the moment, so I just had some labs drawn today to check my prealbumin/albumin levels among other things (those show the amount of protein in the body and can help determine your nutritional status)  Hang in there...I know a few months ago when my family suggested having the RNY reversed, I was a total emotional wreck about it...I'm still nervous about gaining my weight back, but my surgeon constructed the two stomachs back together in a way where there is still restriction between the two, kind of like an hourglass shape.  Keep me posted, I will add you as a friend if you don't mind, and I will check in on you.
Take care,
Jules

Hi there..what kind of complications are you having?

Big hugs and I'm hoping you are on the road to recovery and get much better....Thanks for sharing your story.

Thanks Gus!  Take care

Jules,
thanks for sharing your story on reversal.  I have had nothing but misery since my surgery 7/24/08.  I know that it will be 5 months on x-mas eve, so I am trying to just hang in there and hold off if I can.  My surgeons "reassured" me that "it will get better".  I am trying to have faith and hope it is true.

I have had 4 EGD's to dilate strictures.  I have had a small bowel obstruction come and go for the first 4 months.  I had surgery a month ago to repair the obstruction (was admitted to the hospital so many times I can't count, but one time, they actually saw the obstruction on x-ray).  A month post-repair?  Still nauseated and trying not to vomit.  It has been misery... true living hell these past few months and I try not to cry when I think about all I have been through and what they expect me to live with. 

Can I ask you... are you still nauseated or sick most days post-reversal?  I know you said that you get partial obstructions here and there... and I have had that going on for months.... hope it is gone, but I don't know for sure.  I am still sick :(  and everything always looks normal on x-ray.  ****** me off.  Then they treat me like I am a drug seeker when all I want them to do is make the nausea/vomiting/pain stop.  I hate this!!!  I am very malnourished.  Albumin/prealbumin levels are low, RBC count is low, ferritin is low, vitamin D is low, b12 is low, b1 is low, etc.  They would rather I get nutrition orally since my body couldn't tolerate the g-tube nutrition (contrast put in there made me very sick as well).  I am getting in 2-3 protein shakes a day... at best 400 calories.  My BP is low, pulse high.  I am getting in enough fluids though, so they told me to drink/eat salty things.  It doesn't make a difference, I still get very dizzy upon standing.

Well, I guess that is enough on what I am dealing with.  I'd rather die than live like this... so either it gets better or I am looking at a reversal.  I am having heart palpitations (benign ones apparently) due to being so sick.

Alyssa,
Gosh, until I decided to post the other day about my problems, I thought I was the only one...I can honestly say that I do feel your pain, and I'm sorry that you are struggling and suffering.  My one advice that I can give you is to listen to your body and what it is telling you....400 calories is not enough.  Have you had a body composition test done yet?  That will tell you how many calories your body needs in its current state, how much water your body is comprised of, how much fat, etc...When I had mine done it showed that I needed 1500 calories just to get out of bed in the morning, and at the time I was only getting between 500-600, and even now I am getting about 700-800, depending on the day and how it is going.  I get full really fast, just like it was right after the original surgery, and these episodes of my small intestine kinking is wreaking some havoc as well lately, it has been increasing in number over the last couple weeks.  I just saw the GI doc today, I had given up on them several months ago, but it was a mutual thing, I think they gave up on me as well.  I feel a little better after my appt today, he agrees that it is the intestine, he hopes it will resolve itself, but if it keeps continuing, he will do an upper GI with small bowel follow through to see if they can catch it on film, but he recognizes that these problems frequently elude testing.   I also sympathize with the frustration over being labeled as a mental patient/drug seeker...I am lucky that I work in the ER where I go, and my wonderful co-workers have gotten quite the education about gastric bypass, and really that is where the mis-labeling comes in, pure ignorance...I think all doctors, especially ER docs need a crash course in gastric bypass. Almost everything you read about complications from gastric bypass states that they are almost impossible to diagnose with tests, most are clinically diagnosed, but you need to know what you are doing before that can happen, very frustrating!  I had to switch primary docs a couple months ago because he told me there was nothing physically wrong with me, and handed me a box of anti-depressants!  Hang in there, I will add you as a friend and check on you, keep me posted!

Here is a synopsis of my history:

Starting weight 252 /   Current  140

RNY 11/03/04;

GB removal 12/04/04;

Plastic Surgery  06/14/05;

Internal Hernia/Adhesions 06/06/06; (exploratory surgery / eating very little / mostly liquids)

Plastic Surgery 07/15/06;

Partial Bowel Obstruction 11/12/06; (exploratory surgery - had been unable to eat)

Full Obstruction/Kink - complication from surgery 2 days prior / ICU blood transfusions and to stabilize 11/14/06;   (I was in New Orleans for this surgery and not allowed to return home to Texas for a month to ensure blood loss had stopped and I was stable.)

Emergency Surgery for Obstruction 100% Shut down/ 24 hours from perforation/ Adhesions/Vertical Open 9 in. 07/19/07;

Infection from above surgery / ER Admit/Unstable/Erratic HR & BP/Ambulatory transfer / inpatient ICU until stable/ 07/30/07;

SBBO 08/27/07;

Hernia Repair (3) and Lysis Adhesions that had been causing significant pain, unable to eat, and partial obstruction as well 04/01/08;

Wound infection in patient ICU to clear and stabilize/ admitted 04/22/08;

Hernia Repair with Mesh 09/19/2008 / stayed in New Orleans for 5 days after discharge.

ER admission for Infection & Internal Bleeding/ICU with transfusion 09/30/2008 (had I gone to sleep that night, I would not have survived).

Additional complications:  numerous emergency room visits for pain, nausea, vomiting, dehydration, etc. with no resolution, peripheral neuropathy, pernicious anemia, severe dehydration, severe constipation, reactive hypoglycemia, only able to consume liquid food sources, severe IBS, parasites, confusion, loss of memory - short and long tern, loss of balance, loss of vocabulary, tingling in extremities resulting in partial paralysis which was related to malnutrition  and difficulty keeping vitamins levels in normal ranges, lost too much weight and struggled to gain to healthy weight, ............and who else knows what I can't remember......

Notes for those suffering from "unexplained pain:"

Only ONE (1) time did a bowel obstruction appear on a CT Scan -- that was in November of 2006 after I had surgery for a partial bowel obstruction -- it was a complication to a partial bowel obstruction repair found through exploratory surgery. 

It's simply not true that an obstruction (particularly partial) will show up on a CT scan or any other testing for that matter.  I am proof.

I don't know what advice to give anyone other than to be your own very strong and determined advocate.  No one knows your body like you do.  If any pain worsens, go to the ER.  Demand a consult with a bariatric surgeon.  I have, however, done all of these things where I live (had to relocate to Houston after Hurricane Katrina) and *I* have had to educate the doctors such as PCPs, Gastros, etc. in bariatrics. 

I am so sorry you have had to deal with all of these complications.  I understand that pain and complications such as this is debilitating and affects one's entire life and the lives of those around them. 

My surgeon has now discussed "REVERSAL" with me three times.  I keep holding out hoping that we can find a way to overcome these things (some we have and some are a daily struggle but that are helping with using creative ways to keep vitamin levels within a decent range.  The reversal is not out of question; however, with each surgery, it appears that I develop more complications and the reversal is such a major surgery (more so than the original) that it is highly unchartered waters and does not promise me complete resolution.  In fact, things could get worse.  It's not an easy decision.  As I read your synopsis, I'm not certain how much the reversal has helped you and this is what scares me.  I don't want to get worse and/or subject myself to yet another surgery as I never have time to fully recover from any of them.  I have had 12 surgeries in 4 years (2 plastic which were elective).  That's an average of 3 surgeries a year or every four months.  Between all of the anesthesia and medication I have been on, my body has never had to time to purge of medication and properly heal.  I keep hoping I can get through 18 months to fully recover from a surgery but I can't seem to make it.    I'm now 3 months from my last surgery and I am having a very difficult time adjusting to the mesh and still have extreme abdominal pain.  It takes pain medication in extremely high dosages to even take the edge off of the pain and it has been very difficult if not impossible to find a pain management specialist who understands and will prescribe what it takes to make my life more normal.   I was on the Fentanyl Patch for a while and it was a God-send but my current PMS has stopped prescribing this altogether -- what I am taking now is not helping.  I am trying to find a new PMS but this has not been easy.  No one wants to take me in.  I'm like the rat specimen/study that has gone totally wrong and no one wants the liability. 

To make the entire situation worse, as I briefly mentioned earlier, I moved to Houston just over three years ago and none of the bariatric surgeons here will take me on as a patient.  I have contacted them ALL including the teaching institutes.  I was able to see one bariatric surgeon early on (well after nearly 7 months of pain, 5 doctors, and over $100,000.00 in testing) as my WLS from LA made a personal phone call to a bariatric surgeon with whom he attended medical school and agreed to see me as a favor.  I went down with all my labs and films and he told me it was all in my head.  His misdiagnosis nearly killed me.  I live in the medical Mecca of the south and I can't find adequate care.  Unbelievable!!!!!

I don't know how much this has helped you.  I will send you a friends request so that you can read additional information on what I have been through. 

I have tried to keep the main points and thoughts in this post/information in order but I haven't been able to give my FULL, UNDIVIDED attention to typing this so I don't know how well I did.  I am, of course, happy to continue communicating with you in the future.  Perhaps we can help and support one another.

I am so sorry that you have had so many complications.  I wish you health and happiness.

Vanessa,
Oh my goodness, I am so sorry for your struggles...whenever I read a reply to my post and it is someone who is also struggling with all the same problems, I am very conflicted, it is comforting to know that I am not alone, but scary that I haven't seen a total resolution story yet...they all seem to be unsolved mysteries.  You have been through the ringer!  I noticed that you are in Houston...have you tried the famous Dr Davis' from Big Medicine?  I think they are located in Houston...just a thought.  You are correct, I am still struggling from my reversal, I feel like it solved one problem, but this small bowel obstruction problem has me running in fear from another surgery.  I have wonderful, supportive people around me, and that has made all the difference, but I try and make little deals with God...my latest one is to make it through the holidays and to the new year so that I don't ruin the holidays for my family and a new year so that if I miss any work I can start FMLA leave again since I used all mine up in 2008.  I will hope for a resolution for you, and all the good health coming your way!