Complications ended my WL journey...*sigh*

Some of you may remember my posts from last year following (yet again) more complications.  On October 3, 2014 I had a rupture of my small bowel.  Suffice it to say, I was transported to hospital via ambulance.  After the many hospitalizations and setbacks my heart was broken as was my body.  When the PEG was removed in July 2014 I had hope that all would be well.  Very soon after the PEG was removed I began having pain upon eating most solids and sometimes even my protein shakes.  Apparently, my ulcers wouldn't heal.  The end result for me...a total TAKE DOWN and reversal of my RNY.  I remained in hospital (with 2 stomach drains) for a week.  I went home for 2 days then, suffered a pneumothorax and back (via ambulance) to hospital again where I remained for the better part of another week.

My journey has been littered with a lot of pain, hospitalizations and subsequent surgeries.  When I left the hospital after the pneumothorax, I weighed 113 lbs. !!!  I am 59 years old and haven't seen that weight since high school. 

As some might remember, I lost my job on 4/10/14 due to the myriad of problems and hospitalizations.  Defeated, broken and without resources (I was told I couldn't come back to support meetings as I wasn't a bariatric patient anymore) these last few months have been  very difficult, lonely and confusing for me and my husband.  Due to the complications,  accompanying depression and orthopedic problems,  I was awarded permanent disability.  This WAS NOT what I expected nor worked so hard to achieve.  I went from being over the moon, having reached my goal weight despite all the complications, to outright rage and depression. 

I am posting now because I think it's important for people considering WLS to be personally informed of the possible problems and costs associated with these problems.  My days are spent now watching as the scale begins to move UP again.  My body was so starved for so long that anything that goes in now stays in...*sigh*.  I still journal all my meals-not a day missed since 4/3/12 my surgery date except when in hospital.  I don't have to count the way I diligently did but, I am trying desperately to maintain a normal weight now that I AM RESPONSIBLE ONCE AGAIN for what goes in my body. 

OH members were so supportive while I battled these issues but, now I feel terribly alone.  Here on OH you only see the positives. I certainly don't wish to take away any achievements that people make-I'm not bitter-I just feel lost now.  My stomach (from breast to navel) looks horrid.  I have a "stoma" hole at the PEG site that looks not unlike another navel.  My husband and I joke (yes we still joke) that if you put nipples on each side of my incision it would look like the belly of a dog or cat.  I feel all I have to show for my last 3 year effort is failure.  That's certainly the worst PILL I have had to take since all this started.

So, I wish everyone here a POSITIVE journey with little to no bumps in your path.  If OH allows me to remain here, should anyone wish to respond or ask questions if you're having problems, I am an expert on most of them-strictures, anastomotic ulcers, intestinal ulcers, gastric bleeds, internal hernias and perforation.  Though I am not a physician-I have first hand experience of the downside to WLS.   Take care of yourselves.  Don't get discouraged, don't give up and don't let anyone (even me) take you off your designated course. 

Best wishes and prayers to all of you.

Celtie

 

I am really sorry that you have had yet even more complications and yet more surgeries.  No one should have to endure the number of issues you had.  

I do feel obligated to point out, though, that there is one huge error in what you have written above. You say "I am trying desperately to maintain a normal weight now that I AM RESPONSIBLE ONCE AGAIN for what goes in my body." You have always been 100% responsible for what you put in your mouth!  RNY doesn't eliminate that responsibility, and as every vet on the face of the planet can attest, RNY isn't a magic solution that enables someone to abdicate that responsibility and eat whatever they want.  

I have come across an awful lot of people over the past few months who are surgical candidates but believe that because they will only be able to eat a small amount, they will be able to "get away with" eating almost anything without repercussions.  They don't believe that if they go back to eating crap -- even small amounts -- they will regain the weight. I assume you intended that statement to be more about the loss of the caloric/fat malabsorption, but you were going to lose that anyway.

I want to be sure that any pre-ops or early post-ops reading this understand that all RNY does is provide a tool for enabling you to feel full while eating less (especially once the initial caloric malabsorption wears off).  I do understand that you no longer have that tool, but hopefully you learned how you should be eating while you had your RNY in place and are still able to make good food choices and exercise some portion control.  (It is unlikely that, even with a more normal stomach again, you will still feel physically hungry after eating what you would have eaten with your pouch still in place. Once we eat even a small amount, the physical hunger ceases.  That is why people from other nations are so appalled at American portion sizes... because we continue eating LONG after our hunger has been satiated.)

I do wish you well, and I truly hope that this is the end of your digestive system issues.

Lora

Sorry you deal with so many issues. 

there are people who have no complications what's so ever, and some that deal with a lot of them. 

Your story is one of an example that things can go really badly, and that WLS should not be consider lightly. 

I think it may be helpful to others, in the future, if you can post your story in wls complication forum.  

Hugs...  Wishing you best.

 I am trying desperately to maintain a normal weight now that I AM RESPONSIBLE ONCE AGAIN for what goes in my body. 

Fortunately, I've never had any problems since the first few days after surgery.  I have been blessed.  Sorry to hear of all your problems and your RNY had to be reversed.  I have not heard of that happening.  However, I don't know anyone personally that has had RNY. 

I believe you can maintain your weight loss if you eat a healthy diet.  RNY is a wonderful tool to help us but we have to use it correctly.  For me, I have to eat high protein, low carb and low fat to lose or maintain my weight.  Don't fall back into old habits.

Take care.

 

 

 ADDENDUM:    Thanks for the replies!  Please don't misunderstand when I say "I am responsible once again".  I have 3 years with my RNY and meticulously noted EVERYTHING (nutritionally speaking) as I purchased a wonderful scale that breaks down anything I eat into nutritional values.  The combination of my scale, reading, the RNY and the support groups helped enable me to learn good choices and be successful in reaching my goal weight  I didn't go through all these difficulties without learning what got me obese in the first place.  I merely was trying to make the point that my RNY was THE BEST tool I found to assist me.  Without that resource AND a support group, I'm walking alone now in my weight loss journey (and maintenance) and it's quite an adjustment and very lonely.  I don't have anyone that has experienced the difficulties and, also, endured  a take down/reversal.  THAT'S THE ONLY THING I MEANT.  I, also, had some friends online here in OH that I wanted to update.  So, with that said...once again, thanks to everyone for the encouragement.

Best to everyone!

Celtie

 

You've already heard it but yes, you have ALWAYS been 100% responsible for what goes into your mouth.  If you maintain your healthy eating pattern, journal, watch your calories, carbs and protein intake,  oh yeah and move every day, you can maintain your loss.  The RNY is only a tool.  That's all a tool.  Just because you don't have a stomach the size of an egg now doesn't give your a free pass to eat whatever you want.

Stay the road.  Keep coming here.  Share, read, share.  You are part of the WLS family even though you had a reversal.  Keep your head in the weight loss game and don't give in to the idea that you failed.  You didn't.

Celtie- God bless your heart.  I'm so sorry for all you are going through.  I think you may be such a WONDERFUL resource for me.  I don't know what's going on, but something DEFINITELY is.  I'm almost 6 years post op RNY.  The first several were pretty uneventful, the last year has been horrible.  They're trying to figure it all out right now....they're telling me the possibilities are pretty vast.  I've had a CT, (ordered by my primary care physician) but haven't had the scope yet.  CT shows a possible gastro-gastric fistula.....and a mesenteric swirl.  My doc is now 400 miles from where I live...but, my husband took me there yesterday.  He says, go home, we will check your insurance, I scope only on Wednesday's, if approved we will call to set up the hospital for the scope, and you can drive back.  Doesn't seem too concerned.  I have reflux SO badly that I have aspirated several times, almost choking to death.....stomach/pouch CONSTANTLY on fire, even with water sometimes....bloating, pain upper left quadrant.....the list goes on and on.

Bev,

I'm sorry, as well, to hear that you're having problems too.  I've come to understand that the myriad of possibilities for complications and the general docs and gastro docs lack of specific experience and their prejudice against this surgery complicated the problem.  So, for me...the first downfall of complications came when my bariatric surgeon (6 wks post op) began to doubt the possibility of a complication.  She WOULD NOT deal with my difficulties with eating ( I could barely swallow water****il I pressed and pressed.  Once scoped...she found my stricture and dilated that.  However, I think that initial neglect effectively began my anastomotic ulcer issue.  Two weeks after the stricture repair I had a horrific gastric bleed.  Presumably, it was thought then that I had an ulcer.  I was transfused x 2. 

I was a medical assistant before all this.  I had over 35 years in healthcare-I KNEW MY BODY.  I also was not a surgical neophyte. At that point, I had had at least 10 surgeries over the years. 

I became a ping pong ball between bariatrics and gastro.  My surgeon apparently didn't want to mar her "Center of Excellence" rating so, it was easier for her to maintain "This is not a bariatric issue-it's a gastro issue".  Suffice it to say, after alllllllll this crap, I tried to retain an attorney as we've been economically devastated by all this.  No attorney will pursue this as they maintain it was an elective surgery!! Though I filed a complaint to the medical board, there is NO COMPENSATION financially for us. I was diabetic, hypertensive, and have degenerative arthritis. It was NOT elective-it was preemptive. I had bilateral knee replacements before I turned 50.  I was doing this in order to stay ambulatory and healthy enough to continue working until retirement.  Now, defeated, I fear many of those former  issues  will return as I STILL have ortho issues and have too much pain to exercise and walk any distance. I use a cane, a walker and/or my scooter as needed.   In fact, despite now being on Medi-cal because I lost my job and subsequently my insurance and income, orthopedics is trying to get me approved for a hip replacement in May.  It will be my 17th hospitalization in 3 years.  Something like my 6th or 7th procedure in the last 1 1/2 years.

I hope you have a understanding physician that is empathetic and willing to LISTEN to what's happening.  I've come to realize that WE ARE OUR ONLY ADVOCATES.  Keep pushing.  Ask insurance for a 2nd opinion if you don't feel he/she is attending to you quickly enough.  For me, I would become so dehydrated and malnourished I would end up in the ER every few weeks.  I lived on Prilosec, Carafate (4 times a day) and liquids far longer than most patients.  I'd progress a bit to pureed and then, solids and begin the decline again.  I had a plethora of tests-Endoscopies which would ALWAYS visualize the anastomotic ulcer.  I had a specialized CT scan with contrast tha****ched my food/liquids progress through the entire gastrointestinal system.  The 2nd time I had such a slow motility that the test could not be completed.  The doctor would always say..."It's not your gallbladder" though the pain was unrelenting from mid-sternum to my back.  I kept pushing her and going to ER when she finally acquiesced and did another endoscopy...that's when she identified the internal hernia.  But, realize that all of the reflux and such continued to erode the marginal line/the anastomosis.  Eventually, I apparently formed another ulcer which was noted in October AFTER my small bowel perforation.

Though I only have your txt to me, I worry that it sounds like you are getting a similar disconnect from your surgeon.  I can't urge you enough to be VISCIOUSLY proactive before you suffer what I have gone through.  I made a horrible stink towards the end of my ordeal.  There is so much left out that I haven't shared that I was subjected to by a partner physician at a sister hospital.  When I lost my job and my insurance...no one wanted to touch me.  I had to wait until the perforation before I could get help.  The pain was horrible and I was soooo depressed and ill.  With the concurrent ortho issues, I remained in terrible pain every day while still trying to hang on to my RNY and my sanity.  Even now, after the take down, I still have issues with eating.  Even though I have been reversed, I have to eat slowly or I will vomit.  The added insult is I'm gaining weight slowly.  When I was discharged from my pneumothorax I weighted 113.  The bariatric doc had always said her goal for me was 130-135.  I set my original goal at 125 (from 232).  The joy I felt when I got rid of all my fat clothes and dropped a number of clothing sizes has been replaced with despair at the possibility of significant weight gain and no clothes or money to buy them.  I share these issues with you because there ARE hidden problems unrelated to physical complications.  I was the breadwinner.  I carried the insurance.  My husband only makes minimum wage.  I am on permanent disability now and we are quite stressed out because disability benefits are about $300 d0llars less a month and we have tons of accounts that went to collections.  I'm so deeply wounded by the effect this has had on our economic viability. 

I hadn't meant to be so verbose.  I am happy to answer any questions based ONLY on my experience.  I'm not a doctor.  But, I have gone through every complication EXCEPT the "mesenteric swirl" you speak of.  This is when the loss of weight leaves your intestines more subject to twisting back and under the Roux.  I know about pain, Bev.  I know about physician's condescension and apathy.  I understand your frustration, pain and concern.  Txt me anytime you wish.  I'll keep an eye out for you. 

I hope that your problems get resolved soon and without any surgical intervention.  Stay strong...ADVOCATE ADVOCATE ADVOCATE and
scream if you have to.

I'm available if you need support.

Regards,

Celtie

 

Oh, Celtie. thank you for taking the time to answer so eloquently.  You have been through SO much.  I, like you, fear I am headed down the same path.  I hope I haven't waited too long to be heard. 

Honestly, when I saw the surgeon, it was more of a beat up session than anything.  It was 'WHY haven't you been coming back when you should?  It's all your fault.....that's exactly how it felt.  I feel the urgency, he does not.  After my surgery, in April of '09, I lost about a hundred pounds.  The lowest I got down to was 187, which for me, was a size 12.  I was fine with that.  In the past several months I have regained about 30 pounds.  He was NOT happy with me for that, and that was what he was mad about, and focused on.  I'm not a perfect patient, and I have eaten some things that I shouldn't, but for the most part, I adhere to the program.  I have read that if it IS a gastro-gastric fistula, and things are moving into the remnant, you WILL gain weight.  At this point I'm concerned about DYING, not LOSING weight.

Following my RNY in April '09 I was diagnosed with Kidney Cancer that same year.  I underwent a partial nephrectomy in November of '09.  Thankfully, I am once again Cancer free.  I also had to have surgery in '10 for a large parathyroid tumor, which was benign, gratefully.  In total, I have had 10 surgeries in my lifetime.  I'm sure not looking forward to another one, but I will do what I need to do to try and save myself.

Like you, I am now also on disability, therefore my primary insurance is Medicare, with a supplemental BCBS policy.  Doctors I've reached out to in the Dallas area either don't want to touch another surgeon's patient/problem, or the won't take Medicare.  It's looking like I will be forced to drive the 400 miles to have the original surgeon help, IF he will.

One more question I have is....did they diagnose the fistula after scoping, or upon operating?

Thank you again, Celtie!

 

Bev,

My ulcers were diagnosed upon endoscopy.  The one at the anastomosis finally perforated and wrecked the Roux and such.  The decision to do the take down was NOT a choice.  I, too, feared I would die.  It sooooo felt like that.  I went once just before the emergency and had a blood draw...the tech asked first if my husband was MY SON-this has aged me so terribly. And, the same tech asked if I was a cancer patient as I looked so malnourished (not unlike a concentration camp survivor).  In two years, I will be eligible for Medicare.  But, at our current economic level we would NEVER be able to afford a supplement.  If things don't change for us, we will remain on Medi-Cal.  Bev, I went from owning a 5 bedroom home/4 baths (2000-2008) which was mortgaged to keep my Dad in nursing care.  He had outlived his savings.  We lost the home to a short sale in 2008 and had to bankrupt in 2009.  I have NEVER had to depend on govt assistance nor, have I EVER been without quality medical coverage.  I can't tell you the humiliations I go through now...I'm so much more sensitive to the homeless and poor- understanding that it isn't always apathy, indifference or laziness that puts people in need of help.  Before my RNY..we were already having economic issues and the first time I went to a food bank I wept in line.  This "journey" I've been on has leveled me, Bev. 

I wonder...it sounds like you live in Texas.  There's that well known Bariatric surgeon from My 600 lb life-Dr. Nowzaarden I believe is how you spell it.  If you are near Houston...maybe you should ask if he'll consult with you.  He sees some of the worst cases and subsequent complications as he tries to save these morbidly obese patients.  Any doctor you ultimately settle on I'd encourage you to insist that the surgical (if indicated) and recuperative periods after be outlined specifically as to diet, office visits, support meetings, nutritionist AND maybe even counselor to help you through this difficult period.  Have all spelled out and written as a contract that the DOCTOR has to sign.  If you were to need an attorney documenting this is a must.  I began collection every one of my medical records after the 3rd or 4th ER visit.  I worked in the information department years ago and had a friend still there that would print ALL of my records and give them to me w/out having to pay.  I have a box the size of what computer reams come in...overflowing with all my records. 

The only "positive" thing that came out of all my troubles is the detailed notes, etc that I kept.  In having been seen so often and by so many physicians and keeping a daily log of my problems-it wasn't hard for Federal Disability to award me permanent. I effected that award in 9 months.  I was told by many that you are ALWAYS denied first round and would have to appeal.  However, I have been on state disability this whole last year and it didn't hurt that I'm often teary or borderline psychotic when I am in pain and scared.  I'm most docs worst enemy of late.  I don't trust them or take what they say at face value anymore. 

I honestly want to picket the monthly intake meetings that  my bariatric surgeon holds to solicit new business. Prospective patients should here the PRO's and CON's to WLS.

Anyway, I'm sorry...I know I'm being long winded.  I've been really down today.  Scared actually as my state money runs out first half of April and I'm worried that my Federal won't kick in in time for May's rent.  I've sold so many heirlooms over the last few years to stay afloat.  My beloved mother must be rolling in her grave with anger and disappointment at me selling things.  I had to survive the only way I could. But, it still broke my heart and spirit.

Feel free to write ANYTIME and I do hope you would be comfortable enough to keep me posted on what's happening to you.  There aren't many willing people online in these forums that WANT to share the down side of WLS.  I'm here for you as you need.  And, thank you for reaching out to me....like I said, I am alone now with my "problems".  I could use a friend as well. 

So, if you still want to talk tonight....keep writing.  I have my smartphone or iPad on my bedside table and can quickly respond.  Also, I'm just going to put this out there....I am willing to talk on the phone if typing becomes too tedious.  Just offering...no pressure by any means.

You take care, Bev...

I'm here when you wish.  I lost my Mama to breast cancer and Hodgkins disease in 2000...I'm so happy for you that you are cancer free. That's such a difficult and frightening experience to have to go through.  In 2009 my sister died (age 59).  She was in a nursing home with morbid obesity and other problems.  And, my father died in 2010.  My world has changed a lot, Bev.  Only have my hubby and my twin brother back east so, I'm hungry for people to come sit at MY TABLE so to speak.  I promise the verbosity would subside a bit.  hahaha

Looking forward to hearing from you when you are able.Regards,  Celtie

Also, Bev...as I'm hungry for a supportive and understanding and compassionate friend....I want you to know that I also don't sleep very much.  My husband works graveyard shift and I'm almost always up all night.  I have a lot of difficulty staying alone at night.  I don't feel I would be capable of protecting myself or even run away...just can't do that now.  So, I stay awake.  I am going stark raving mad watching so much tv and laying around in bed. .

I also want to offer you the opportunity to phone if you and your husband are comfortable with that.  Sometimes, sitting for long periods at my desk PC is hard on my back.  But, laying supine like Cleopatra in bed I can address any of the needs of my friends or interested supporters,  hehehe  To be honest I think I'm losing significant brain cells on a daily basis.  Persistent tv watching has begun to affect my brain matter. hehehe  I used to do a lot of different hobbies....lacemaking, cardmaking/scrapbooking, playing music but, I had to sell my harp last Christmas to keep up the bills. Every loss material or medical has set me back emotionally 'til I'm drained and somewhat apathetic to life.

Oddly, I met a woman online last April when I made a plea here on OH for anyone who has a PEG could they msg me.  She was fairly early out from surgery (about 6 months) and began having issues so, they put a PEG in.  When I had to have mine...I was terrified.  This was the closest I came to having addressed my greatest fear....a Colostomy.  That I would have found to be unbearable to cope with.  As it was, the 2 stomach drains and the stoma area for the PEG gave me quite an indication of the impact a more permanent bag would have on me.  The most surgically related pain I felt was due to the stoma and the drains.  Excrutiating  when the drains were pulled out. It was like my entire stomach was being dragged across my chest and yanked out two small holes.  Even the PEG removal didn't hurt that much.