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3 years out-now with new concerns over old complications



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So after a long complicated journey......to be found somewhere in my past posts, I have concerns that I might have some scarring/stenosis or hiatal hernia. I have major fullness after one bite, bloating pain and that darn nausea! I take Protonix, Probiotics and Anzamet for nausea. Also Luvox, gabapentin and Klonapin. Plus, I never recovered from the fatigue. I had a jejujostomy for about 14 months or so....due to malnutrition. I am a home health nurse - while I finish up grad school, so I can set my own schedule since I cannot work full time due to my symptoms. I am afraid I am malnourished again (or still). I went off grains and lost 8lbs which is good cuz I was doing sliding food, so I gained a bit, but not anything terrible. I eat only egg whites with cheese in the am, and that is so I can take my morning meds, otherwise I get sick on an empty stomach. I really don't eat much else..maybe 2 bites of dinner (vegetarian for 30 years). I have the right Protein Powder, a new one for GI health and I cannot even get those down. I should be well below my goal weight - I know I do not take in enough calories. I think my body is in starvation mode and is holding on to whatever it gets. Anyway, my big fear is going back to my doctor. My PCP vs my surgeon? Not my GI doctor b/c he will refer me back to someone else. So I guess I better email my surgeon.....here we go again. I just want to feel good. not tired. FYI - I see a therapist 2x/month - so that is helping the emotional part.

Any feedback? Thanks.

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I don't know what to tell you except I'm hoping things get better. I wouldn't even begin to think about where to start. What about asking the PCP who you are to go to?

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i emailed my pcp...just waiting til she gets back 7-7-15.....

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Good luck. Please keep us posted. I'm almost 3 years out and am anemic due to not drinking enough Vitamins

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Had a visit with the MD covering my PCP (very nice guy), he ordered labs, a CT all STAT on Monday. nothing except scar/atelaectesis at the base of my left lung (likely from the massive hospital acquired pneumonia). Positive for H. Pylori so I start 2 antibiotics today as well at RX of Prilosec which I already take Protinix. Hope this helps....ulcer and infection does explain my issues but I still think something else is going on. He also believes I have cyclic vomiting syndrome....I am glad I have a really great therapist for CBT and biofeedback. Plus this forum has always been so supportive. So that is it. My update. Now if I can just rally the energy for a shower I can finish an assignment for class. It has been difficult these weeks but I am not missing any class work (MSN with an emphasis on Public Health). on line thank goodness! for those that have followed me and commented with ecouragement a big thank you. for those still struggling, we are in this together!

trish

Edited by NORCALRN

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Hey!!!

I found it... So glad. So much is the same would you be interested in texting? I dont know how to private message you.

I honestly dont know what all to say. I so feel you. I am not losing either. Not at goal... Malnourishment is my normal. I feel i am in starvation mode. The times i can eat, weight drops like crazy.

Hiwa

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Caring for my infant while typing. Sorry

Hows Iron?

Mine is 2-4, needs to be at least 50. Went to first infed apt today. I was allergic to Iron treatment. It was scary. Two docs and two nurses raced in. I have been on iron supplements for 2 years. No luck.

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oh my......it never seems to end. i still feel liike there is something else beside h. pylori and ulcer.......labs are ok. they ususally are.even when i had a nasojejunum tube then the j tube. very little showed except i looked like sh*t and felt worse! i am so weak....not depressed weak - just wiped out. and try getting giant antibiotics down..holy moly! anyway, i am going to see an option to reach out to you outside of this forum. stay tuned!

trish

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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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    • 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.
      · 1 reply
      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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