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HELP! 2.5 yrs out, pain and drastic unintentional wt loss this year



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My health is in the toilet, and I desperately need help and advice. RNY summer 2019, goal met in 2020, happy, maintained/healthy/active for a long while. I'm 51F btw.

But since roughly March of this year I've unintentionally lost at least 50lbs while eating exact same nutrients/calories/macros/etc as my maintenance diet. I even started adding calories to try to stop it, bc my face looked awful/old. My BMI is now underweight and I look awful and ill. Also in March, the pain started. I had NO pain or issues from surgery 2019 all the way until March this year. It started as occasional lower right side abdominal pain, like a burning, hot coal sensation. Maybe 1 x a week. As the months have gone by, it increased and increased until now it's a daily agony. I wake up okay, but as the day goes on it gets worse and worse, until I go to bed with an Ambien at 7pm to escape it. (Mornings okay, it worsens as the day goes on)

For many months it was bad but not so bad as to affect my calories/nutrition/appetite/etc. It's only in the past month it's gotten unbearable. (I still eat and get all my required protein/calories, I just do it earlier in the day). Trying different elimination plans didn't help btw.

Then, 2 mos ago my hemoglobin went down to 8.5 despite my taking daily Iron and I required 2 iron infusions to bring it up. I never had anemia since surgery until then, out of nowhere, with the same diet plan, all my Vitamins, iron, etc.

So here's the deal: FULL GI workup, normal, normal, NORMAL (CT, colonoscopy, upper endoscopy, CT enterography). Finally the GI doctor was like "I have no answers for your problems. Some things are just par for the course with a post bariatric patient." Verbatim (message in patient portal). No more follow-up or more testing offered.

I felt slapped, I was LIVID at that message, I feel totally dismissed. This kind of suffering and drastic symptoms should NOT be "par for the course" for a 2 1/2 year post-RNY patient right? I know 2 others personally that had RNY years ago and they've never experienced anything like this. I just can't imagine this being normal!

Has anyone here gone through anything like this and gotten answers and help? Or does anyone just have any ideas at all? (FYI I did see my bariatric surgeon first, a couple of months ago, he said my issues were NOT normal - this is before the GI doc. My surgeon ordered a CT but insurance denied it, which is why I went to that GI doc instead). So now I'm sitting here, suffering, deteriorating, with no answers or help in sight. :(

Please please if anyone has any ideas, I'd be so grateful for some guidance here!

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your surgeon is right - that isn't normal. I'm not sure what to tell you - usually a CT scan will find things that are amiss. Maybe get an opinion from another G/I specialist? Wow - I am so sorry you're going through this.

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Go to another GI doctor. Just seeing it as par for the course / living with it isn’t a viable (or responsible) treatment plan and you deserve better.

Edited by Hopeful_Gal

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Would the scan be covered by insurance if it was ordered by an ER doc? Sometimes the rules are different in an emergency??

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I second the ER. They can get MRI's and CT's much easier/faster than having to go to the GI and then make an appt for the scan(s).

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Can your surgeon look at the scan results? He looks at them differently then the GI.

Have you had your hormones checked?
And what everyone said above!

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Please be persistent in demanding additional assessment. Ask your bariatric surgeon to refer you to a general surgeon for further evaluation. You may have developed adhesions (scarring), malrotation (twisting of a segment of bowel), or an internal hernia, and your pain could certainly be of other than gastrointestinal origin. I am a former gynecological surgeon, and your complaints are absolutely NOT “par for the course”. You should consider seeing a gynecologist and having an ultrasound to evaluate your ovaries. You absolutely must get the weight loss under control.
Best to you, Newbie. Keep us posted

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      On day 4 of the 2 week liquid pre-op diet. Surgery scheduled for June 11th.
      Soooo I am coming to a realization
      of something and I'm not sure what to do about it. For years the only thing I've enjoyed is eating. We rarely do anything or go anywhere and if we do it always includes food. Family comes over? Big family dinner! Go camping? Food! Take a short ride or trip? Food! Holiday? Food! Go out of town for a Dr appointment? Food! When we go to a new town we don't look for any attractions, we look for restaurants we haven't been to. Heck, I look forward to getting off work because that means it's almost supper time. Now that I'm drinking these pre-op shakes for breakfast, lunch, and supper I have nothing to look forward to.  And once I have surgery on June 11th it'll be more of the same shakes. Even after pureed stage, soft food stage, and finally regular food stage, it's going to be a drastic change for the rest of my life. I'm giving up the one thing that really brings me joy. Eating. How do you cope with that? What do you do to fill that void? Wow. Now I'm sad.
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    • Alisa_S

      On day 4 of the 2 week liquid pre-op diet. Surgery scheduled for June 11th.
      Soooo I am coming to a realization
      of something and I'm not sure what to do about it. For years the only thing I've enjoyed is eating. We rarely do anything or go anywhere and if we do it always includes food. Family comes over? Big family dinner! Go camping? Food! Take a short ride or trip? Food! Holiday? Food! Go out of town for a Dr appointment? Food! When we go to a new town we don't look for any attractions, we look for restaurants we haven't been to. Heck, I look forward to getting off work because that means it's almost supper time. Now that I'm drinking these pre-op shakes for breakfast, lunch, and supper I have nothing to look forward to.  And once I have surgery on June 11th it'll be more of the same shakes. Even after pureed stage, soft food stage, and finally regular food stage, it's going to be a drastic change for the rest of my life. I'm giving up the one thing that really brings me joy. Eating. How do you cope with that? What do you do to fill that void? Wow. Now I'm sad.
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      1. summerseeker

        Life as a big person had limited my life to what I knew I could manage to do each day. That was eat. I hadn't anything else to look forward to. So my eating choices were the best I could dream up. I planned the cooking in managable lots in my head and filled my day with and around it.

        Now I have a whole new big, bigger, biggest, best days ever. I am out there with those skinny people doing stuff i could never have dreamt of. Food is now an after thought. It doesn't consume my day. I still enjoy the good home cooked food but I eat smaller portions. I leave food on my plate when I am full. I can no longer hear my mother's voice saying eat it all up, ther are starving children in Africa who would want that!

        I still cook for family feasts, I love cooking. I still do holidays but I have changed from the All inclusive drinking and eating everything everyday kind to Self catering accommodation. This gives me the choice of cooking or eating out as I choose. I rarely drink anymore as I usually travel alone now and I feel I need to keep aware of my surroundings.

        I don't know at what point my life expanded, was it when I lost 100 pounds? Was it when I left my walking stick at home ? Was it when I said yes to an outing instead of finding an excuse to stay home ? i look back at my last five years and wonder how loosing weight has made such a difference. Be ready to amaze yourself.

        BTW, the liquid diet sucks, one more day and you are over the worst. You can do it.

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      Officially here for a long time, not just a good time💪
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