Sunday 7/26/2015 – FAQ’s

    I get a good number of private messages (which I don’t mind at all), asking more personal questions – but I find many of them are consistent questions.  I often wonder how many people have those questions but don’t ask ~ so I thought I’d take some of those and make a short FAQ’s list.  Again, I have NO ISSUE with the personal contact, the ENTIRE point of this blog/page etc. is to either inspire or help at least one person who is going through something similar so please don’t take this as a request NOT to ask one on one.  I simply wonder how many are shy or embarrased so their questions go unanswered.  My FAQ’s are in no particular order just as they pop into my head:

  1. Why did I choose the RNY over other WLS options?
    1. I picked the RNY because to me the weight loss surgery needed to be a HUGE and lifetime commitment.  It’s ironic that I did ultimately have it reversed – but that is rare and not something that I could have predicted at the time obviously.  I felt like the RNY was my personal best shot at success.
  2. Do you regret having the weight loss surgery, now that you have the complications?
    1. No, no I don’t actually.  Had I not had the surgery it’s likely that I would either be ill, and or dead from complications of obesity.  No regrets here.
  3. Do you recommend WLS, and if so, which type?
    1. I think it’s a very PERSONAL decision for each person.  I think that both the decision to have WLS as well as which TYPE is best for you is not something that has a cookie cutter answer.  My recommendation is that the decision starts with YOU.  Why are you in this position (be honest with yourself if no one else – easier said than done), what do you expect to get from the surgery and what are you willing to put into this?  You have to look at your emotional and medical considerations, and you have to make the best decision for YOU.  I simply recommend that whatever your decision you not take it lightly.  WLS surgery is NOT a quick fix and it’s NOT easy.  Any issues you had prior to the surgery are only going to be magnified after it.
  4. What is gastroparesis?
    1. Simply put gastroparesis is a “paralyzed stomach”.  Quite literally when a normal person eats (one with our without weight loss surgery) – the stomach contracts to move forward into the digestive system.  When you have gastroparesis (depending on the severity) the stomach does not in fact contract, because the nerve that controls the muscle is damaged and the message doesn’t get through.  Therefore the food sits there and either trickles through at some snails pace, ORRRRR if you are one of the lucky ducks (like me) it frequently gets so bad that it doesn’t move at all and you end up deathly sick for hours, days and weeks on end.
  5. What are they going to do to fix you?
    1. Yeah, that’s one of my favorites – THERE IS NO FIX, NO CURE, NO SOLUTION – ARGH LOL.  There are several drugs that are used to “help treat the condition”, but they frequently don’t work.  I’ve tried them all with little to zero success, and 2 of the 4 drugs carry with them serious risks and side effects by the way.  One is blacklisted in the u.s. but you can get it, the other you literally can’t even get here anymore it’s now illegal to compound it in the united states.  I’ve tried them all and yeah, nothing has helped.  I’ve also gotten the botox injections to help enlarge the opening out of my stomach.  In theory this gives food more room to “fall through” and needs less pressure – that didn’t help.  The only “treatment option” left for me to try is the gastric pacemaker which is quite involved and not so easy to get.  I go on August 13th for my first consult in Brooklyn.
  6.  Does it bother you to have a feeding tube?  What’s it like, does it hurt?
    1. In the beginning it bothered me a LOT, I cried and cried and felt like I’d rather die than live this way.  Then I got over myself and no it doesn’t bother me anymore.  The reality is that this tube keeps me out of the hospital QUITE often and it’s basically a piece of medical equipment – much like your glasses, an insulin pump, hearing aid, cane or wheelchair.  It’s a little less “common” than some of those are BUT honestly you learn to adapt.  The mind is an amazing thing!  On the plus side my tube is small, if you see me in the street you’ll never know I even have it unless I tell you or you actually see me hooked up to a feed.  Otherwise it’s completely non-invasive in my everyday life and it’s a complete life SAVER for me sometimes.  It does not hurt (I mean the surgery to put in it of course there was surgical pain) but day to day life, no it doesn’t hurt; I don’t feel it and it’s not even cumbersome.  I’m grateful for my tube, because it saves me a great deal of suffering!
  7. How did you get gastroparesis?
    1. Generally there are two types of GP, the more common is that it is frequently caused by diabetes. In my case – never having been and not now having diabetes it’s called idiopathic gastroparesis.  Meaning – we don’t know what the hell happened.  Personally because my condition started right after the surgery to remove the stone from the bile duct in my liver, and given the fact that they literally moved my stomach(s) <I had two at the time due to the RNY Bypass> and put them back, I believe that the nerve was damaged during that surgery.
  8. Did I sue because of that?
    1. I did not.  I did consult a malpractice attorney who reviewed the case in depth.  In fact the attorney I spoke to had successfully sued my particular surgeon before.  However the outcome was this:  there were two surgeons present during that surgery – so who did what?  There was no notation of any issues made during that surgery.  It’s impossible to get another doctor to testify with certainty that one surgeon or the other did anything specific during that procedure to cause this damage.  Without those things, there is no chance of winning.
  9. Do I have an issue going “out” and/or to social functions either after my RNY or now that I often can’t eat at all and am either eating baby food or tube feeding?
    1. For me personally no it’s not an issue now nor was it after my bypass.  I made a conscious decision when I had my bypass not to live my life in hiding just because I could not partake of all the food offerings associated with social functions in our society.  It’s a personal decision certainly, but for me it was not worth giving up so much just because I can’t eat.  Even now, unless I’m SICK and therefore literally vomiting or in bed, I still go whether or not I can eat.  I go to parties and BBQ’s and go out to eat, and I order as I see fit.  I most often wrap half or more of anything I do order, and I will do appetizers or child’s menu when I can ~ but I refuse to let my inability to eat dictate my social life.  Whether you are a weight loss surgery patient or suffer from gastroparesis you get a quick lesson in how MUCH of our social activity has food as a centerpiece of it in our society.  It can be daunting, but I find that if I just concentrate on the SOCIAL aspect of it  –  the food aspect bother other people more than it does me.
  10. Why did I try to commit suicide?
    1. I was quite literally just that depressed and defeated.  Getting gastroparesis, and the 2-years going without diagnosis and the lack of treatment impacted my life in ways that I never thought possible.  I lost everything, job, house, car, friends, desire to live ~ literally it stripped me of everything I had ever known and valued in my life.  I think it was made more difficult by the fact that during that 2-years of hell I was at one point told it was “all in my head” and with my body being so run down and the catastrophic losses it just was a new depth of darkness and hell that I had never thought possible to feel.  I’m grateful today that I was NOT successful with my overdose and that I’m here to talk about it, but at the time that I did it I just quite literally did not want to wake up not one more day and live in the hell that become my life.
  11. Why am I doing this blog/page etc., why tell my story?
    1. I’m not sharing my story for any fame or fortune, I’m not looking to publish a book or to charge for my story.  When I was at my lowest of lows I felt ALONE, I felt like I was a crazy freak and like there was not another person like me in the world.  The lack of knowledge and treatments for gastroparesis make it a very difficult condition to get diagnosed and treated.  Subsequently I’ve met thousands who suffer with so many of the EXACT same things I do, including the additional suffering at the lack of knowledge in the medical community.  The reality is that I was NOT a freak, the things I go through physically with my GP are COMMONPLACE among all sufferers  –  and just because modern medicine has not caught up with our suffering does not make it any less real.  My GOAL, my PURPOSE for all this sharing is simply because I believe if ONE person sees my blog or page and realizes that they are NOT alone, they are NOT a freak and gets some understanding and validation that their suffering is REAL and that someone out there understands – then it’s worth it.  If that “one person” gets a RAY of hope, and believes life is worth living – it’s worth it to me to have spent this time to share my story.  I wish I had of met someone like me before I tried to kill myself, granted it turned out okay – I’m here – but maybe my suffering would have been a little less – and if I can offer that hope to just one person then every word I type is worth it’s weight in gold!
  12. Until next time…thanks for reading!

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