Not sure where I fit in........reversal, complications and neglect oh my (LONG)

facethemusic
on 10/14/11 3:14 pm
I'll try to make this as short as possible.  I had my RNY on April 12th, 2011.  Everything seemed great afterward.  I was losing weight, no major issues and I felt pretty good.  Towards the end of May I noticed a burning feeling when I ate.  I mentioned it to my surgeon who did an EGD and after discovering a small ulcer put me on Carafate and Protonix.  Well, in June the pain got worse and was soon accompanied by nausea and vomitting.  Towards the middle of June I was miserable and losing weight too rapidly.  They did another EGD which showed I developed a 2nd ulcer and the 1st was bleeding.  I was told to continue the meds, put on full liquids and TPN for the vitamin deficiencies.  Throughout the end of June and beginning of July I was repeatedly admitted to the hospital for dehydration and malnutrition accompanied with low hemoglobin.  I saw my surgeon July 20th who said he thought that if this continued he may have to reverse my surgery.  There was never any mention of revising me.  I bawled because I didn't want to lose the tool I had been given to lose weight.  On July 27th I saw my surgeon again, still weak and miserable.  I had also developed a new symptom, coffee ground like vomit which indicated old blood in my vomit. He scheduled me for an EGD the following day on the 28th to see what was going on.  He didn't feel it was an emergency as the coffee ground look indicated it was old blood.  Well I live almost 2 hours from his office.  I made it home and was waiting on my car to get the oil changed when I felt sick.  I felt this horrible cramping feeilng and vomited in the middle of the Sears automotive department.  That wasn't the terrible part.  My vomit was pure blood with clots mixed in.  I managed to keep my composure, clean my mess up, pay for my car and leave . I promptly called my husband who met me at our home to take me the 2 hours back to my bariatric surgeon's hospital.  By time we got there the office was closed so I went to the ER.  They did a CT which didn't show any bleeding into my gut, ran some bloodwork and admitted me.  My hemoglobin was low, but not low enough for blood products so there wasn't much concern.  The EGD the next day revealed that I had 4 ulcers at the anastomosis and 3 were bleeding.  They were cauterized during the procedure and I was sent back to my room.  Later that day my surgeon came in and told me the only fix for my ulcers was a reversal.  I begged him for a revision and he agreed to at least attempt it.  However, he wasn't comfortable performing it alone and so he scheduled it for the next time he could get into the OR with another surgeon.  August 9th!  He felt that would give my body time to heal and recover from the bleeding.  So, I stayed in the hospital receiving TPN, IV vitamins of every kind and on clear liquids.  I didn't have any more bouts of vomiting blood until the night before my operation.  On August 9th I was wheeled in for what was supposed to be a laparscopic possible revision/reversal and I woke up with an open reversal.  I was miserable the first few days.  As the days wore on I felt better and better though despite the pain.  I thought this was my fix.

My surgeon explained that he felt my ulcers were a blood flow issue and that a revision wasn't possible.  Sadly I have my doubts that they even attempted a revision.  It was also never explained why my operation became an open procedure and despite asking I've never received an answer.  After surgery I kept spiking fevers, but no one investigated the cause or gave me antibiotics.  I was also never checked for leaks after surgery.  (This will come into play later)  8 days post-op on August 17th I was discharged from the hospital despite a temp of 100.8 that morning.  I did okay at home.  I was nauseous and in lots of pain which I thought was normal.  I was still on TPN which helped me maintain my energy and I think aided in healing.  I did fine at home until the week of August 22nd.  On the 22nd I spiked a temp of 101 and was having a really hard time urinating.  I called the surgeon who wanted to see me on the 24th.  I treated the fever at home alternating Tylenol and Motrin as directed.  By time I went in on the 24th I was having horrible pain in my lower left abdomen plus I could barely pee and was having vaginal discharge.  I explained all this to my surgeon who said he thought it was a UTI.  He did blood work (that would take a few days to get back), did an abdominal CT with IV contrast (I couldn't keep the oral contrast down) and sent me home on antibiotics saying I probably had a UTI.  Well, on August 25th I woke up at 10:00am with pain in my lower left abdomen.  The pain was so bad I could not talk through it.  I tried to tough it out thinking it was just a UTI and thinking that since the surgeon's office said it was a UTI that is all I had going on. By 1:00PM I couldn't take it anymore.  I, for the first time in my life, called an ambulance.  I could barely give the 911 operator my address.  The pain was horrendous.  I wanted to die.  I thought I was dying.  In the ambulance my BP was 189/101 and my pulse was in the 160's. My temp was also 103.8. They rushed me to the nearest hospital where they wasted no time getting blood work done, CT's scheduled and waiting on me to provide urine.  I could not pee at this point so I had a cath.  Just before they went to give me pain medicine my body started shaking uncontrollably.  My pulse hit the 190's and my blood pressure dropped to something around 80/50.  Every nurse in the ER was in the room with me along with several doctors.  They gave me meds to lower my pulse and after about 15 minutes my vitals stabilized.  They then gave me meds for the pain that didn't seem to help.  It was later said that I was in septic shock.  The blood work came back that I was septic and every antibiotic in the pharmacy was given to me.  The CT showed a massive pelvic abscess situated behind my uterus and in front of my colon.  It was large enough that it appeared to also engulf my left ovary and tube.  Needless to say I was admitted to the ICU.  

The next day I was sent to radiology to have the abscess drained.  I was supposed to be put under for it, but the anesthesia didn't work and I was wide awake.  They had me on my stomach as they went through my right butt cheek to access the abscess.  They put a JP drain in and sent the fluid from the abscess to the lab.  I was continued on lots of antibiotics pending the cultures.  At this point the only way to control my pain was a Fentanyl pump which worked quite well.  The antibiotics had wreaked havoc on my digestive system so I couldn't control my bowels.  I had a flex seal inserted which was the most mortifying experience at that point.  Once the cultures came back it showed that the fluid they pulled off the abscess was gastric fluid.  Since it had been 2 weeks and 2 days since my surgery and it takes abcesses 2-3 weeks to develop it was assumed that the lea****ured during or just after my reversal.  I was sent to the hospital where my reversal was performed under the care of my bariatric surgeon.  They continued antibiotics, but my surgeon had me see a GYN since he thought the abscess needed to be handled by then.  The GYN there said it was just an ovarian cyst!  They sent me home the following day.  I was sent home on IV Rocephin.  Well, about a week later I spiked another 103 temp and the pain was crazy yet again.  I went BACK to the hospital in my home town where I was once again sent to the my bariatric surgeon.  I was told point blank none of the surgeon's here wanted to fix anyone else's mess.  However, the surgeon's here felt exploratory surgery and another JP drain would fix the problem.  My surgeon decided I just needed a different antibiotic.  I was sent home yet again.  All throughout September I was in and out of the ER with fevers and pain.  I go to my local ER as I simply cannot afford to drive 2 hours back and forth every time I'm sick.  The last time I went was September 26th.  I didn't have a fever, but the pain medications weren't controlling the pain at home at all.  They did a CT which showed the abscess had not gotten any smaller since the CT they performed after draining it.  The ER had my GYN come in and talk to me about options to fix it.  He felt surgery was the best option, but because it was caused by another surgeon he had to give him the chance to fix it.  He did tell me that if my bariatric surgeon refused to treat it and would discharge me from his care for the abscess he would treat it.  

My bariatric surgeon refuses to acknowledge that the abscess could still be causing me pain.  Because of this he refuses to give my GYN permission to surgically treat it.  For liability issues my GYN won't go in and operate since it's another surgeon's complication.  I guess there is some surgeon's code.  So here I sit in pain from an abscess/mass that is no longer causing an active infection.  I just want it gone.  The pain is horrible.  

Since my reversal I haven't been able to keep solid food down very well.  I had an EGD on 10/13 that showed a "bezoar" in my lower stomach.  This is apparently an undigested mass of food.  My bariatric surgeon said it was caused by my stomach not digesting food properly.  He removed it and then told me to drink 1 tsp of Adolph's Meat Tenderizer mixed with 2 ounces of water, daily.  This is supposed to help break down food.  My thing is, why not find out the reason I'm not digesting food properly?  From what I've ready the likelihood of the bezoar reoccuring is high.  

My bariatric surgeon seems to think that since my WBC count is normal that I'm fine and shouldn't be in pain at all.  If I am in pain it must be adhesions and scar tissue.  If that were the case then why is the pain in the exact same location as the pain I had from the abscess?  Why can't I eat?  Since removing the bezoar I've been able to eat "normally", but how long is that going to last?  I feel like he keeps brushing me off and doesn't want to deal with me.  Yet, there isn't another surgeon around here who will even see me.  

Those of you considering a reversal remember this:  They CANNOT make things the way they were before.   Your anatomy will never be "normal" again.  In my case, my pouch is attached above my remnant stomach which is attached to my bowels.  So in essence I have 2 stomachs.  No one told me this pre-op.  I was never told how altered my anatomy would be after the reversal.  In fact I was assured everything would go back to normal.  That definitely isn't the case.
 HW-240, SW-233, CW-158, GW 135 @ 5'3.5"
RNY April 2011, Reversal August 2011.  
I still have a pouch so I'm a hybrid.

     
 
  
Maria P.
on 10/16/11 11:14 am
VSG on 01/09/12
 I would report this case to your state medical board. You need another surgeon to treat you!
5'3"  Age 38

HW: 216
Month 1: 20.6
jbird1972
on 10/16/11 5:03 pm - Cary, IL
Wow, even if I had not been going through a very similar rollercoaster for the last 4 years, I would still give this a giant wow, and follow it up with a "this is NOT right!!"  I don't want to bore everyone and re-hash my stuff in your post, but feel free to read my blog.  I had never heard of a bezoar until I had one (and I work in the medical field).  There are many excellent medical facilities all over the country, I am being currently treated at The Cleveland Clinic in Ohio, a wonderful place, no wait, an amazing place.  I still need to travel back and forth semi-frequently from Chicago to Cleveland, about an 8 hour trip one way; but it has been worth the peace of mind to know that I am in caring, competent hands who have not been afraid to dive into "someone else's mess" 
I can't even put into words how bad I feel for you, or how angry I am for you that you are getting the "hands off" treatment by your local medical community, especially because I am a healthcare professional.  I have been there, still happens to me at times when I need to be treated locally in an emergency.  At this point there are times when I am grateful that some of these doctors here at home know their own limitations enough to defer to Cleveland Clinic, but in some instances I feel like I am falling through the cracks.  It doesn't have to be Cleveland Clinic, but I would highly suggest getting yourself somewhere bigger, someplace very experienced in bariatric surgery and the complications you have. I don't have many regrets, but I do wish I had trusted my doctor less and been able to take charge of my own healthcare sooner.  It's hard to see clearly when you are in pain and scared about your future.
Feel free to add me as a friend, and/or message me anytime.  I have been trying to get on here more frequently to check my messages.  I have also had my surgery reversed, a reversal and then a revision of the reversal.
Jules
Bless you and get well soon

Jules RNY 10/30/2007

Docj
on 10/18/11 6:28 am, edited 10/18/11 6:29 am
Revision on 09/01/88
Omg!!! I'm having flashbacks. I was wondering how you were and tried to contact you. I sent you a friend request but after a while, figured something bad was going on.                                

I empathize with you big time... You may recall I had a BPD (similar to a Long Loop Roux-En-Y-GBP) in 85' and 6 surgeries later, I nearly took a dirt nap.

I ended up with approximately only 1/8th of a stomach (the rest had eroded and was removed) and horrid, long term side effects resulting in partial disability.

I also wasn't fully informed the "takedown" wouldn't totally reverse the GI anatomy. I still constantly experience new and unusual weird side effects the docs just scratch their heads over. I now simply smile at them and say I was abducted by aliens and they must have experimented on me...

RUN, don't walk to a different town to see another surgeon even if you have to go out of state! No excuses.

Keep searching for a surgeon to treat you. Yes, there is a "surgeons' code", it's called CYA, no - no malpractice lawsuits.     

FYI, if a pt. consults with a new doc without providing a certain portion of the med. records, there's a better chance the newbie will decide to treat...
H.A.L.A B.
on 10/31/11 7:55 am
Thanks for sharing and so sorry yu had such a horrible experiance with all of it.

Good luck. Hope you feel better soon.

Hala. RNY 5/14/2008; Happy At Goal =HAG

"I can eat or do anything I want to - as long as I am willing to deal with the consequences"

"Failure is not falling down, It is not getting up once you fell... So pick yourself up, dust yourself off, and start all over again...."

rbb825
on 1/31/12 3:44 pm - Suffern, NY
I am so sorry you have gone through this. I do hope you have gotten some help since writing this. If not, please find a good Teaching hospital in a big city  = you will find a surgeon to help you and you should sue your surgeon - itis malpractice to not treat you and to not let anyone else -that is crazy.

Ihave had tons of complications but I have a great surgeon and he is always there when I need him and if I need surgery, he is always ther

dont walk, run

good luck andhope you are doingbetter

 

Most Active
Recent Topics
Splenectomy
Jackhberry · 0 replies · 332 views
Low blood pressure
rainesmom · 1 replies · 899 views
occasional "pinching" pain
sboenigk · 1 replies · 942 views
×