Friday 7/24/2015 ~ Summary of the “journey”

     I am blessed that I continue to get new followers through Facebook and Twitter, and that the readers on the blog continue to grow.  My entire goal for doing this whole thing was to give hope (if only for one person) who might be “GOING THROUGH IT” and feel like they are the only one, or that no one understands and that all is lost.  So I started this in February and I’ve written (it feels like) a ton of blogs, and the beginning ones were the “chronological timeline” of my story.  As i see new readers/followers coming on though I always think – geeze who the hell is going to go back and read all that crap.  So every once in a while I think it’s useful to put out a “summary of the journey” and that is today’s blog.  Here’s a bullet summary of my personal journey (very summarized with TONS of details missing), and I’m MORE than happy to talk to anyone personally and/or answer questions etc.  I’m 100% NOT a medical professional or qualified to advise you about anything, but I am 1000% qualified to share what my journey has taught me!

  • Obesity was a life long thing and around 550 lbs I decided to have an RNY Gastric Bypass
  • I had the bypass and successfully lost around 300 pounds, with zero complications or issues for about 7-years
  • In 2011 I developed a gallstone in the bile duct to my liver, and due to my RNY they could not remove the stone with ERCP as would be done for a person with “normal” anatomy.  Instead I had to be opened up, stomachs moved by bariatric surgeon, stone removed and bile duct clipped by second surgeon and then everything sewn back into place.  My gallbladder had been removed in 1994, and the stone was discovered due to illness and blood work showing major liver malfunction.
  • Subsequent to that surgery I continued to get sick, and didn’t know why  From 2011 to 2013 I spent about 18 out of 24 months hospitalized, having numerous tests and treatments with no diagnosis.
  • During that time I had things like TPN feedings, lysis of adhesions, exploratory surgery, REVERSAL of my gastric bypass, (reversal is uncommon);  placement (and subsequent removal) of a peg feeding tube, botox injections in my stomach etc.  I had to be evaluated by a psychiatrist to see if it was “all in my head” and I suffered a lot in so many ways and actually attempted suicide at on point because I simply could not deal with it anymore.  That two years was 100% a low point of my life in every possible way.
  • My “symptoms” were (still are) intractable nausea, vomiting and eventually abdominal pain
  • In October of 2013 I finally got my bariatric surgeon to refer me to a gastric motility clinic where they specialize in these issues, and I got into that program in December of 2013.  By March of 2014 they had FINALLY given me a diagnosis of Gastroparesis – which is basically a paralyzed stomach.
  • There are limited treatments (and no cure) for gastroparesis.  I’ve been treated with the Botox injections, Marinol, Erythomycin, Reglan, Domperidone, diet changes etc. ~ all to no real improvement
  • I have had a Jejunostomy feeding tube in place since August of 2013.  Recently I had it changed because the tube I had was coiling up into my stomach and giving me issues, but I’ve had a feeding tube for 2-years now.
  • My reality is that I might have that tube forever, I simply don’t know yet.  I have good periods and bad periods and I literally (just like almost everyone else with this condition) have to just live with it.
  • The only “treatment” that has not been tried on me yet is a gastric pacemaker (stimulator) and I actually have an appointment at Brooklyn Hospital Center in Brooklyn NY on August 13th with a bariatric surgeon to start the process to see if I qualify for one medically, and to see if we can get insurance approval.  Neither of these things are easy, and the success rate of the gastric pacemaker is not as high as I would like it to be so I am cautiously optimistic about the possibility of this.  In a perfect world, I’ll qualify, insurance will approve it, and it will work beautifully – I’ll be rid of my tube, and able to resume the life that I’ve been missing these past four years.  I’m painfully aware that this is not such a perfect world though so …. so stay tuned for the continuation of the journey.
  • I’m frequently asked if I regret my gastric bypass – i.e. people associate the bypass directly with my current issues.  Granted had I NOT had the bypass, I would of been able to have the ERCP and would not likely have had this procedure that caused the paralysis.  HOWEEVER, I didn’t have any problems with the bypass itself and today I’m literally 370 pounds lighter.  My honest answer is for me personally yes I would do it again, because aside from my stomach issues I’m healthier than I’ve ever been.  I have no clotting issues (at 500 lbs I had a serious DVT and almost died), no high blood pressure, my heart is good, I’m not diabetic etc.  Without the bypass and the weight loss the likelihood of my having some if not all of those issues is quite high ~ and I could be in much worse shape than I am.
  • I do NOT believe weight loss surgery is for everyone.  I believe it’s a very personal choice that needs to be evaluated for each individual.  It’s 100% not an easy fix, and it’s a HUGE commitment to an entire life change.  If it’s not viewed and approached that way I think the chances of failure are greatly increased, and it saddens me to see the number of people who end up getting one type of surgery only to regain all the weight 5-6 years out and have to go back for revisions etc.  I STRONGLY encourage anyone who is considering a WLS to consider it carefully, and to be honest with yourself about what you expect from it and your commitment.  For me though, no regrets and yes I would actually do it again!
  • Thanks for stopping by, as always ❤

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