Changed my life forever but not without a cost!!

[Jncyost]

So I am new to this site and finally decided to reach out to others for some help on things. My name is Nicole, I am now 34 yrs old and 156lbs. March 26, 2014 I had the sleeve and weighed in at 356 lbs. I could not wait to have this surgery. I prepped for 10 months, went through the classes, therapy groups, psych eval, nutrition classes and everything. I was mentally and physically prepped and ready to go. I made it through surgery, then recovery and I immediately knew something was wrong. I didn't know what but something was wrong. The pain was more than I could stand. I had 8 ice packs on my stomach, I was given Percocet for the pain which did nothing, so onto Dilaudid which helped but minimal. 6 hours out of surgery and the pain was increasing by the minute. Doctors and nurses both thought my pain tolerance was low, that was not the case. I finally am able to convince the surgeon there is reason for concern and I am taken down for a CT. Low and behold during my surgery the surgeon snipped my splenic artery causing an Splenic Infarct. The pain I was feeling was in fact my spleen dying. According to the dr and reading online I shouldn't have felt anything in reality. Most people have no idea that they are experience a splenic infarct. I did feel it, I felt every part of it.
The surgeon admits to me and my family that he did snip the artery but "assumed" I would never know and it wouldn't matter in the end. My pain meds were increased to help and I was watched closely for infection. My 3 day stay was now 5 days for observation. I was sent home on liquids at 5 days and day 8 was in the ER with "not feeling right". Again I couldn't pin point what was wrong I just knew something was wrong. I did not feel like I was supposed to feel.
CT scan ordered and it is now verified I have developed a leak. I was admitted and this would be the beginning of a 267 day hospital stay. Long story short I ended up septic, with an emergency Spleenectomy and on life support 4 times. I had 19 more procedures/surgeries in those 267 days, feeding tube and PICC line for nutrition and could not eat by mouth from April 6, 2014 until October 29th, 2015. This saga would go on far longer than I had hoped. Threatened to take my life several times.
At one point I was down to 126 pounds, I had been to Cleveland Clinic for a specialist to help, I was in Cincinnati, OH for another specialist for several weeks in patient. Nobody could figure out why my leak wouldn't heal and why I had so many complications. It was a disaster.
With all of my complications and surgeries I ended developing an addiction to opiate pain medication and also Anorexia, 2 different kinds. Now at almost 3 years post surgery I am in weekly counseling for addiction, anorexia therapy and still struggle to eat, keep food down, stomach spasms and fear of gaining weight.
I have terrible night time episodes of throwing up bile in my sleep which I aspirate on and have had pneumonia several times from, I have heartburn even drinking water, the spasms are few but my fear of gaining weight consumes me. I am now between 150-159 depending on my monthly cycle and how "good" I am doing in a week with eating. I have gone 11 days before without eating a single thing. I live on coffee, string cheese and Greek yogurt pretty much. My fear of gaining weight, being in pain with trying new foods, stretching my stomach back out is all more than I can handle.
If I was given the option to go back in time and redo things, I would still have the surgery because it truly saved my life in the long run and I love the ME that was hiding behind the skin. With that sad I battle every single day with fears and that is one thing I have realized that nobody ever warned me of in the 10 months of pre-op stuff I had to do. They warn you about leaks, dying, blood clots but nobody tells you that you will most likely develop an eating disorder, your mind set doesn't change, your lack of self control doesn't change....what changes is for me my eating choices are fear based and driven. Getting to the 1, 3 and 5 year mark without gaining weight is all I can focus on.
Part of me is thankful I went through what I did because honestly with the mind process not being changed I could see how the 67% of people gain their weight back. I however went through so much and life support 4 times was enough to scare the 'eating" right out of me. I will NEVER eat something I shouldn't, drink something I shouldn't because for me I almost lost my life to have this new life and it isn't worth it. All I went through would be in vain if I did that.
So the point to my blog is, those of you prepping for surgery please know I am NOT trying discourage you I am trying to make you aware of the MENTAL changes that DONT happen and the ones that do. It is not mentioned that statistically 70% of bariatric surgery patients develop some kind of eating disorder. Nobody ever tells you that. WHY?? I wish they would have. It wouldn't have changed my mind but I would have liked to know.
For those that have already had the surgery, does anyone else have spasms, night time bile or severe reflux. Reflux that is NOT cured with Tums. I am talking serious, medically dangerous, erosive kind that is actively doing damage every day to your esophagus. Am I totally alone in this. It sure feels like it most days.
What about anyone else having the serious fear of gaining weight again?
I don't eat right, most days I consume 500 or less calories and I work out regularly on top of that. I run on empty most of the time and honestly I have "cravings" but am seldom hungry.
Any insight anyone has at all would be greatly appreciated. Thank you for your time and thoughts you have to share.

[dtiller1147]

Wow Nicole, this is quite a Journey you have been on. I am glad you are seeking counseling to get through these troubles. The only thing I can offer is with the re-flux, and yours sounds serious. In most sever cases the Docs would do a revision to R&Y bypass to help with that. However, in you case the Docs may not want to go that route.So please discuss with your medical team because they need to know this to help minimize the damage.
I agree that the mental aspect to this surgery is not fully vetted in most programs. The likelihood of transferred addition is know and should be seriously evaluated for each person. We see a lot of issues with drug or alcohol abuse when some folks can not deal with not being able to eat all the time. Please keep us updated on your journey and I am glad you are hear to contribute to these boards.

[ghost_ryder]

How horrific. There are just no words. I hope someday your fears pass and you can live the life you deserve.

[Donald G]

I am sorry to hear of the problems you had and still have. The program I am in warned us of the percentages that regain weight develop eating disorders and the way some develop drug or alcohol addiction. Anyone in the program I am in went through phys evals and I know of one person whose has spent over a year getting clearance for their surgery because of such issues. As far as you reflux issue have you ever been given a drug called reglan? I take it for my GERD it helps constrict the sphinter which keeps stomach acids out of your esophagus. I dont recommend it for long term use but it may give you some relief.

[Tamera2]

Welcome Nichole, you have sure been to hell and back. I'm glad to see your doing better but sounds like you still have a ways to go in order to really enjoy your current size. I had severe Acid Reflux and developed gastroparisis about 7 years ago. Years before having the sleeve done. What they did for me because I was vomiting bile or having bile come up and wake up choking on it. I had a surgical procedure called a Nissan Fundoplication. It was caused by the valve staying open that connects the esophagus and upper stomach. They formed a wrap to keep the valve closed. Things can go down but not up. One draw back is when I'm sick I can't vomit anything up only dry heave and it sounds horrible but it resolved my problem and cured/stopped the erosion of my esophagus. My wrap is still there with the sleeve. You should discuss treatment options because what your dealing with is not acceptable either and could become life threatening too. I became septic once because my gastroparisis became severe due to undiagnosed Addison's disease and I had to go on a feedeing tube. I couldn't tolerate that either so i ended up on TPN. I had been in the hospital now for 4mos.I finally got to go home and had home health nurses coming to the house to set up TPN. I made it maybe 2 weeks and I developed a blood infection and became septic. Back into the hospital I go except this time I was admitted to ICU for several weeks. I had lost a lot of weight by now. I had a power port in because I have MS an receive IV meds q28days. well because TPN has ingredients that bacteria like and goes into a warm body it made for perfect conditions. I got a picc line for IV antibiotics and a different feeding tube placed this time went directly into the intestines because they wanted me off TPN. Before discharge The surgeon removed my power port. which left a big hole in my chest, so after discharge I went to wound care clinic for at least a month. They were great. I was taught how to run my antibiotics in my picc line and run feedings in my New feeding tube. I went back to my endocrinologist who treated my thyroid condition. He ran test and discovered i had Addison's Disease. That was causing my stomach condition to worsen and the treatment for that not to work. I stabilized and after a year got rid of the feeding tube and was eating,drinking by mouth again Yay!! But adventurually My weight went up and up for various reasons. It took two years of work and finding out another option other than the bipass. I found a great surgeon in Mexico and had the Sleeve. So far everything is going great and I'm loving life again. My health as improved already too. I hope your doctors can help you and you feel 100% better before you no it. Continued success with your recovery and hope you can get help with your eating disorder too. Take Care and thank you for sharing your story.

[Lisa73me]

So I am new to this site and finally decided to reach out to others for some help on things. My name is Nicole, I am now 34 yrs old and 156lbs. March 26, 2014 I had the sleeve and weighed in at 356 lbs. I could not wait to have this surgery. I prepped for 10 months, went through the classes, therapy groups, psych eval, nutrition classes and everything. I was mentally and physically prepped and ready to go. I made it through surgery, then recovery and I immediately knew something was wrong. I didn't know what but something was wrong. The pain was more than I could stand. I had 8 ice packs on my stomach, I was given Percocet for the pain which did nothing, so onto Dilaudid which helped but minimal. 6 hours out of surgery and the pain was increasing by the minute. Doctors and nurses both thought my pain tolerance was low, that was not the case. I finally am able to convince the surgeon there is reason for concern and I am taken down for a CT. Low and behold during my surgery the surgeon snipped my splenic artery causing an Splenic Infarct. The pain I was feeling was in fact my spleen dying. According to the dr and reading online I shouldn't have felt anything in reality. Most people have no idea that they are experience a splenic infarct. I did feel it, I felt every part of it.
The surgeon admits to me and my family that he did snip the artery but "assumed" I would never know and it wouldn't matter in the end. My pain meds were increased to help and I was watched closely for infection. My 3 day stay was now 5 days for observation. I was sent home on liquids at 5 days and day 8 was in the ER with "not feeling right". Again I couldn't pin point what was wrong I just knew something was wrong. I did not feel like I was supposed to feel.
CT scan ordered and it is now verified I have developed a leak. I was admitted and this would be the beginning of a 267 day hospital stay. Long story short I ended up septic, with an emergency Spleenectomy and on life support 4 times. I had 19 more procedures/surgeries in those 267 days, feeding tube and PICC line for nutrition and could not eat by mouth from April 6, 2014 until October 29th, 2015. This saga would go on far longer than I had hoped. Threatened to take my life several times.
At one point I was down to 126 pounds, I had been to Cleveland Clinic for a specialist to help, I was in Cincinnati, OH for another specialist for several weeks in patient. Nobody could figure out why my leak wouldn't heal and why I had so many complications. It was a disaster.
With all of my complications and surgeries I ended developing an addiction to opiate pain medication and also Anorexia, 2 different kinds. Now at almost 3 years post surgery I am in weekly counseling for addiction, anorexia therapy and still struggle to eat, keep food down, stomach spasms and fear of gaining weight.
I have terrible night time episodes of throwing up bile in my sleep which I aspirate on and have had pneumonia several times from, I have heartburn even drinking water, the spasms are few but my fear of gaining weight consumes me. I am now between 150-159 depending on my monthly cycle and how "good" I am doing in a week with eating. I have gone 11 days before without eating a single thing. I live on coffee, string cheese and Greek yogurt pretty much. My fear of gaining weight, being in pain with trying new foods, stretching my stomach back out is all more than I can handle.
If I was given the option to go back in time and redo things, I would still have the surgery because it truly saved my life in the long run and I love the ME that was hiding behind the skin. With that sad I battle every single day with fears and that is one thing I have realized that nobody ever warned me of in the 10 months of pre-op stuff I had to do. They warn you about leaks, dying, blood clots but nobody tells you that you will most likely develop an eating disorder, your mind set doesn't change, your lack of self control doesn't change....what changes is for me my eating choices are fear based and driven. Getting to the 1, 3 and 5 year mark without gaining weight is all I can focus on.
Part of me is thankful I went through what I did because honestly with the mind process not being changed I could see how the 67% of people gain their weight back. I however went through so much and life support 4 times was enough to scare the 'eating" right out of me. I will NEVER eat something I shouldn't, drink something I shouldn't because for me I almost lost my life to have this new life and it isn't worth it. All I went through would be in vain if I did that.
So the point to my blog is, those of you prepping for surgery please know I am NOT trying discourage you I am trying to make you aware of the MENTAL changes that DONT happen and the ones that do. It is not mentioned that statistically 70% of bariatric surgery patients develop some kind of eating disorder. Nobody ever tells you that. WHY?? I wish they would have. It wouldn't have changed my mind but I would have liked to know.
For those that have already had the surgery, does anyone else have spasms, night time bile or severe reflux. Reflux that is NOT cured with Tums. I am talking serious, medically dangerous, erosive kind that is actively doing damage every day to your esophagus. Am I totally alone in this. It sure feels like it most days.
What about anyone else having the serious fear of gaining weight again?
I don't eat right, most days I consume 500 or less calories and I work out regularly on top of that. I run on empty most of the time and honestly I have "cravings" but am seldom hungry.
Any insight anyone has at all would be greatly appreciated. Thank you for your time and thoughts you have to share.

I too have had many complications, I'm not glad you had them, but I'm glad I'm not alone. I feel your pain. I'm at work, but when I get off, I'm going to PM you... Big hugs!

[Christie13]

I'm sorry for all you've been through and you have been through a lot. I am still in the weight loss phase but I don't have fear of eating. My sister is 5 years post op and she does not have any eating disorder issues either. I think those of us that have been overweight probably all have addictive personalities. That's how we got fat to begin with. You definitely need counseling and support for this. I wish you luck. Hang in there.

[DesertGal]

I am so sorry to hear about all the serious health problems. (It's kind of freaked me out reading all of this, seeing I go in for surgery day after tomorrow but I have to have faith all will go well.) I am sure all of us have a thought of gaining weight again, but I think that's where a good counselor would be helpful. I know I do not want to put on this weight that I have lost pre-op and the future weight I will lose, back on, and I have have real hope of keeping it of by the restriction size. My stomach has been a bottomless pit and with my changing my food choices over the last few months is another tool, so to speak. I plan to eat what foods I like, but in moderation.

[Sandra3]

Hi Nicole,

I'm really sorry to read about all those awful complications you had post-op. I hope you will be able to find soon peace in your life and a balance that you need and deserve.

But here is what I think reading your story, don't take offense, I'm not a doctor or a shrink, it's just my personal point of view.

Post-op complications happen, you are part of the unlucky 1%. But it seems that your surgeon is a disgrace for his profession.
Now, I wonder if you should have been accepted for surgery and that's where I think it's actually the surgeon's fault here, not just because he is a bad surgeon but because may be the psych eval was not done properly.
People usually develop anorexia when they are teenagers (I know well the issue, had two friends in high school who were sick) and it could start with boulimia or be both at the same time. It's extremely rare that adults your age start to have anorexia. Did you suffer from bulimia before surgery?

May be explore how you became obese, why, when, going to the root of the problem could help. I am not just talking about you here, but look into your family history could help a lot.
My obesity is in my genes but there's also an historic component that does explain a lot the environment. On one side of my family, my grandparents were political refugee, left everything behind, lost a child during the exode, then faced famine. My grand-ma was the obese one, and her daughters and grand daughters, all women we do have the very same health issues with the main ones being obesity and asthma. Men don't. But also my grand-ma always carried the fear of being without food and she always had a huge pantry full, same for the fridge. Food was everywhere. The other side of my family, grand-pa was a resistant during the war, was sent to Dachau, was the only one of his family that came back alive: he did carry the guilt of being the only survivor and became alcoholic.
Understanding my family history, the patterns, gave me an insight of why. He did help me a lot. I realized that it was time to stop the family history and make a new one.
understanding the past did change a lot of things in my relation to food and how my children were raised. I made huge efforts to communicate on a positive way with my children about food. So far it was successful for years, but my older child who left home two years ago started to gain weight like crazy. I think in her case it's an environment problem and the fact that she is not mature enough and should have stayed home longer, but we are in Asia and to go to college she had to go back home. Being on her own she was probably bored, and now with a boyfriend who's a chef they live on carbs and sugar. I'm really sad about the situation but she is an adult now, I can't do much and did the best I could so far. I try to help her but so far she is in denial.

About acid reflux, I had it before the sleeve. It became awfull post-op. I tried to stop my PPI several times, just couldn't. It took me 13 months to stop it. Sleeping on an incline, watching your diet and find out what are your triggers can help. But really, when you stop the PPI, it's hell in fire in your stomach. But after a few days it's better. Being consistent was the key for me. Avoid stress is also important.

About the fear of gaining back the weight : first I think your numbers are wrong or not looked at in the right way. It's true that most patients (67% why not) will regain but it's usually between 5 to 10% of their weight loss. People who regain everything enter a really small percentage (around 10% if I recall), certainly not 67% who regain everything.
About those 70% of patients who develop eating disorder issues same here, those numbers seem wrong, unless it's a study made on people who already had issue with eating disorder before?
But stats and number are only an indication of what can be your future. We are not all made on the same mold.

When I made my decision to get the sleeve, I remember reading a study about how much a patient could eat post-sleeve. If before surgery he could eat two full plates, two years post-op it would be a little less than one plate. That was good enough for me. My main issue was quantity.

Like many here, I do have an fear of gaining back the weight but that voice does guide me and help me to make the best choices for my daily nutrition.
Right now I'm still hoping to lose a little more weight but I'm stressed and it seems my weight loss might have stopped. I hope it's temporary.

My conclusion is that if I was you, I would try to find a really good doctor, psychiatrist of psychoanalyst, specialized in eating disorders. Counselling is may be not enough or what you need. 500 calories per day is bad for you, you are damaging your body. If your body doesn't have the proper nutrition you can't function well.
I hope you will be able to find some peace and love yourself more. Good luck and take care.

[Jncyost]

No offense taken to anything you mentioned. Thank you for your words. I want clarify for you some things you asked about. Prior to my surgery I had never had an addiction to medication, alcohol or anything else. The medication started following the surgeries, after 19 of them and everything else I was on a constant drip with a rebreather. I have never had an eating disorder of any kind. No where near having one, other than over eating disorder. I have to agree with you concerning the psych eval being incorrect. I fully believe all of this is from the fear of dying, tied with my complications and now the fear of gaining again after all this happened.

My counseling, nutritionist and Anorexia counselor and great and considering since I have started with them I have gained 34 pounds I think we are headed in the right direction. No doubt about it my surgeon screwed up big time. I have spoken with several specialist as I said I have been to other in patient hospitals for care and possible intervention with them and they agree also.

Obesity runs in my entire family. Father and mother both as well as my grandfather on my fathers side. There are several reasons behind my obesity and all of those reasons are now gone from my life. They have been worked through, removed and or worked out I guess for lack of better terms. My fear now as I said though is fully based on what I have been through, and I guess also stems from never wanting to be where I once was. I never want to live the life that was associated with the weight either.

Anyway, lunch is over and I have to get back to work. Thank you again for your thoughts on all this. I love reading what everyone has to say and offer in experience and knowledge. I didn't think this would be healing however it is much more therapeutic than I thought! Just talking about it with people who have had the surgery. Some relate on some topics and some do not.

[Jncyost]

Please do not be discouraged. That was not my intention. I truly am in the 1% national average for my issues. It is my luck I suppose to be the ONE % who could have all this. I wish you a speedy recovery and hope that you have all of the wonderful things you should have with this surgery and this new journey. It is wonderful to see the changes, it is wonderful to buy the new clothes and that. Look forward to those times. They are worth it all.

Hugs and luck for tomorrow. Remember, it is ok to feel discouraged, to be sad at times that you can't eat certain things....don't lose sight though of why you wanted this surgery and that helps.

Best of luck tomorrow!!