PedalSteelGirl

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I read the posts mostly on the RNY Forum and I try very hard to empathize, but for the life of me I'm sorry, but I just don't seem to feel the same way the majority of the post-ops who write in do.  I think partly this is because I had really great pre-op classes on what I could and couldn't have after my surgery.  I was also told that those of us who were older were only going to get one chance at this and if we messed it up...well...good luck getting another surgeon and funding to get a revision.

Mentally, I reconciled the fact that I was "closing the door" on one chapter of my life, and opening the door on a new one.  In closing the door on the old chapter that meant I wasn't going to allow myself to be tempted by things I know I shouldn't eat.  That also meant no cheating...not even a little bit, because I didn't need that in my life.

It's a good thing I did because I ended up with this pancreatic complication that actually caused me to lose too much weight and had I eaten anything with too much sugar or high in carbohydrates I would have lost even more weight.  The nature of my diagnosis of NESIDIOBLASTOSIS (islet cell tumors of the pancreas) means that those little islet cell tumors produce more insulin than my body needs WHEN I EAT.  If I don't eat at all, my blood sugar remains stable.  I starve to death and I'm really hungry, but my blood sugar stays in the good range.  Go figure.  But the Nesidioblastosis is a complication as a direct result of my RNY Gastric Bypass Surgery.  (See New England Journal of Medicine:  Nesidioblastosis and Gastric Bypass:  Too Much of A Good Thing?)

I have been to (new) doctors and when they look at my chart and see the notation that I am post op (2003) RNY Gastric Bypass -- I've often been told that these doctors have a dozen or so patients that are post-ops...and they don't look like me...I guess meaning that they haven't lost all of their weight much less are they underweight.

I do eat and alot.  Some days it seems like that's all I do.  I maintain the watch over the content of what I eat and as I said in an earlier post - protein will drive my blood sugar straight down - so I have to have some complex carbohydrates.  I cannot eat anything I want, I still will get sick if I eat too fast or if I eat out and am not aware of the contents in a certain dish,. 

There's a young man (mid 20's) who comes out to where my husband and I play music and he's had the same procedure I have had and he still eats at -- get this -- McDonald's.  I asked him how in the heck he could tolerate it, I would think it would make him sick as a dog.  He said he wished he couldn't eat there, but he can.  Now that's my question.  We both had the same surgery.  WHY AM I SO DIFFERENT?  Not that I want to eat at McDonald's again, but my diet is SO restricted and if I'm not careful in a month I can drop 20 pounds and I end up with a home health nurse and a PICC line and being fed TPN  which is really nasty to even look at, and this other guy has not lost all of his weight and eats at McDonald's.  So somebody please explain this to me, because I don't understand it.

My whole goal in this blog is to just let you all know what my life is like now.  Sometimes these surgeries do go wrong and it's not the surgeon's fault.  You have to be prepared though and ask yourself if you can go through all that I have.  It's hard enough to go through the surgery, the weight loss, the adjustment to a new life and new st;yle of eating, and the vitamin regimen; then add to it that you have to have MAJOR surgery to have most of your pancreas and spleen removed and you're having to check your blood sugars eight (8) times a day and take injections to boost your low blood sugar four (4) times a day.  

And now my sugars are running too low and the  surgeon is recommending the remaining third of my pancreas be removed.  OH MY GOSH...the first time I thought I was gonna die...it hurt so bad...they broke my ribs to get to my pancreas and the incision is 3-4 times what RNY incision was and there were about 60 staples in the incision.  I dread having to have that surgery again.  Plus the fact that once all of my pancreas if gone my body will no longer produce ANY insulin and I will be mixing several types of insulin and that's scary. 

I can remember thinking when I first got home after surgery -- trying to stick to a schedule. HA!  That was a cakewalk then.  Try doing what I have to do now!  This shot and a bunch of pills have to be taken 1/2 hour before I eat and when your blood sugar has dropped to low...man does that suck. 

That's all I can tell you for now, anything else I can think of - I'll let you know, but for those of you considering this surgery, please look at the risks and be sure and ask your surgeon about this complication because it is j

Looking back to 2003 and how awful things were for me, I know I wasn't destined to be here much longer in the condition I was in because of my obesity.  On the day of my surgery I weighed 284 pounds, but I had been successful in losing some weight pre-op because at one time a traditional scale would not weigh me and a doctor's scale weighed me at 304 pounds.  I was having problems with my blood pressure and my heart - my EKG's were not right and the print out looked down right scary. 

Despite the helll I've been through in my surgery's aftermath, I do still believe I wouldn't be here at all had I not had this surgery to help intervene and stop the vicious cycle I had created over the years by crash dieting.  As a result of crash dieting my metabolism basically said "I Quit" and refused to respond to anything I did, and for a full year prior to my surgery I was under the care of a doctor who prescribed a diet that I journaled, he reviewed; and my weight never changed.

When (many years after this) I was admitted to Georgetown Hospital's Intensive Care Unit in critical condition, their tests revealed thyroid deficiency, almost completely non-functioning adrenal glands, and pituatary deficiency; in addition to this pesky little problem with my pancreas meaning I was to have HUGE surgery that I had in Feburary 2009, and I'm still not really back on my feet now.  I am basically home bound.  Going out or moving around too much causes my blood sugar to plummet. 

My husband and I went to pick up a new car yesterday and I checked my blood sugar in the car and it was 90.  By the time we got to the dealership (an hour later) and I was sitting in the office, I started feeling nauseated, sweating, so I checked my blood sugar again and in that one hour my blood sugar had dropped from 90 to 50.  I had to excuse myself and use the ladies room to draw up an injection of a medication that raises my blood sugar and then get out of the dealership and get something to eat and quick.  In my case I can't do a piece of candy or juice because this Nesidioblastosis thing is vicious.  If you feed it sugar it just produces MORE insulin, so it will raise your blood sugar temporarily...but it will backlash quickly and your sugar level will drop even lower than it was before you ate the candy or drank juice.  I have to have a mixture of protein and complex carbohydrates which are released into your system at a more even rate thus they don't cause a "spike" or a "dive."  Amusing too is the fact that if I eat too much protein it pushes my blood sugar straight down.  So much for your basics of protein and produce -- like I say, I've had to get creative and find complex carbohydrates that don't have too much sugar in them to add to things that were protein to balance my meals out plus I have to check my blood sugar eight (8) times a day and I have to have four (4) injections every day.

My writing this blog is not intended to discourage anyone by any means from having surgery -- especially if you've found yourself in my situation where you know instinctively that your life is definitely in jeopardy if you DON'T have the surgery.  My intention IS however to make people aware that 99.9% of the time things go great, but this complication is becoming more recognized in the RNY process and more prevalent and it has almost taken my life.

Have any of you got any idea what it is like to simply go to bed at night thinking everything's "ok" and wake up in an ICU?  I have no recollection for Fire/Rescue coming to my house, or being moved out of my bed.  I don't recall being in an ambulance or the emergency room.  Sometime the next day I came out of a low blood sugar induced coma with no clue where I was or what was going on.  This has happened not once, but as many as TWENTY times.

My poor husband.  I can't begin to imagine the sheer agony he has been through because he has been with me every step of the way and it breaks my heart.  I think if the situation were reversed and I couldn't wake him up I would go off.  I thank God for him every day I have him in my life, and that's the only other problem I had with the process.  I really really wish that my husband was more a part of the pre-op seminars, especially the part where it changed what I would eat for the rest of my life.  MY decision changed his life without his knowledge and he deserved more than that.  Of course I'm hearing after the fact :-)  that alot of the post-ops that were married or in committed relationships have problems after their weight loss.  Now is not the time to be hearing that.  I needed to know that BEFORE, thank you very much.  But all of this is relatively "new" (as compared to the appendectomy) lol...thus it's good we have this opportunity to put our thoughts to paper in the hope that in expressing ourselves and describing what we've been through will help others be aware of things and hopefully avoid certain pitfalls.  Bang-bang for now, I'll tell y'all more later...It's a Friday nite and my husband has a band job which means while he's gone I get to play my guitar (minus the resident music critic) hahahahah...gotta love it...two musicians marry each other, what the hell were we thinking?  :-)  Hugs to everyone, Jo Ann

Things were always tedious for me in the eating category.  I followed each and every instruction to a "T" -- and one day I would eat a meal and do just fine, and the next day I would make the identical meal and get sick as a dog.  I swear I did everything I was told to do, the vitamins, I didn't drink before a meal or too soon after a meal...I even set a timer; I ended up consulting nutritionists from Sibley Hospital and Johns' Hopkins Hospital both of whom took notes from me and said I was doing the right thing, keep going.  Problem was I was losing weight too fast and either had vomiting or diarrhea most of the time.  My Primary Care Physician was the first one to diagnose my problem after giving me a blood glucose meter.  I suspected diabetes because it ran in my family but my doctor said no.  He gave me an article from the New England Journal of Medicine regarding a condition called "Nesidioblastosis."  It was about abnormal islet cell tumors in the pancreas that (when you eat) become active and create too much insulin resulting in what doctors think is dumping syndrome but in my case it was severe hypoglycemia with blood sugars going as low as 17.  Normal is 80-120, the lowest acceptable is 65.  A blood sugar of 17 is not good.  I had such repeated instances of this that I lost the "symptoms" and was actually still able to walk and talk when I should have been unconscious.  And unconscious I did become, on many many occasions.  I've been in a coma.  I've spent 2 months in an Intensive Care Unit.  I've been transferred to Georgetown University Hospital in D.C., and operated on by the Transplant Team - and 2/3rds of my pancreas has been removed and my spleen.  This Nesidioblastosis syndrome is as a direct result of my having had RNY Gastric Bypass Surgery in 2003.  It didn't start to rear it's ugly head until 2005, but by that time I was underweight.  I have been on PICC lines and fed by TPN, I have been taken from my house unconscious and put into an ambulance - transported to a hospital ER - and admitted to ICU - and not even known it no less than 20 times.  It is my understanding that I am one of five (5) cases in the State of Maryland and about 48 across the United States and when I last spoke with my Endocrinologist at Georgetown the numbers are popping up all the time.  So when you go to the seminar - if you're a pre-op, listen up when they talk about complications.  Surgery to have most of my pancreas and spleen removed was HORRENDOUS.  It was 4 times the incision my RNY was plus my ribs were broken on my left side and I'm still in pain from that.  For a while after the surgery my blood sugars ran high and the doctors said that was ok, better too high than too low...and it's been two years since that hellacious surgery, but I'm in trouble again and registering blood sugars as low as 30; and the doctors want to go back and take the rest of my pancreas out.  I have to take shots four times a day and check my blood sugar eight (8) times a day because I am immune to the symptoms of low blood sugar -- most people will start to shake and sweat, but I don't feel a thing, until I become unconscious.  I have passed out and broken my cheek bone and teeth and my face is now forever marred unless I can come up with the money for plastic painful surgery.  If I don't pay attention in one month I lost 20 lbs.  Then here comes home health with a PICC line and the TPN.  Enough for now, I'll talk to y'all later, but please please please, ask your doctor about this BEFORE it's too late because once it's done, it's done.  BTW, I haven't posted (except once in 2005) about this disease, but I spoke with someone from my surgeon's office and they actually encouraged me to tell my story, so...here it is.  I've heard of others catching flack for being a "downer" and discouraging people that they ended up pulling out of the Forum, and I hope that doesn't happen to me and that everyone just keeps an open mind that there is a reason that other procedures are being offered other than RNY.
Yours always,
Jo Ann

I was operated on in November 2003.  Something wasn't right from the start, I'd had many many other surgeries (way more serious than this) and walked right away from it.  Somehow all the other ladies and gentlemen were up and walking in the hallway with sweatpants on and I wasn't able to get up, I was just too sick.  On the day I was supposed to come home I developed diarrhea and barely made it home without incident since I live in the Maryland suburbs and I was in Inova Fair Oaks Hospital in Virginia.  The diarrhea never stopped, it just got worse and I couldn't get anything down except a tiny bit of ice chips and soon the diarrhea turned an ominous black jello like stool.  By Monday morning my husband took me back to the doctor's office and he immediately had me readmitted to the hospital next door for dehydration and I was later diagnosed as having pancreatitis.  This was only the beginning of things to come involving my pancreas, and what a nightmare it has been.