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Hopes And Dreams/complications And Disappointment



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Hello fellow sleeve-rs, I have a long story to tell, but will try to keep you awake. Almost 7 years ago I was given a permanent illeostoymy due to Crohn's disease. I was diagnosed with Crohn's about 12 years ago. I tried all the treatments FDA approved and some I had to get from Canada. Because I had serious allergic reactions to all the "big guns" the doctors used to treat Crohn's. The treatment they all turned to was steroids. This led to a gain of 100 lbs.

My decision to have gastric surgery was based on the recommendation I received from the mayo Clinic after a full work up, from head to toe (literally). I was sick all the time. In and out of the hospital with blockages, dehydration, and poor nutrition. I also have osteoporosis at age 40.

I had my sleeve surgery December 6,2011. I also had old scar tissue, mesh, diseased bowel, and fat removed during a 6 hour surgery. The first 3 days went as planned. Day 7 things started to go down hill fast. I spiked a fever of 104, my kidneys shut down, I had to have a 4 pint blood transfusion, and a leak developed in my abdomen that required a chest tube because the amount of Fluid leaked into my abdomen was so much it caused my left lung to collapse. I had 7 drains to deal with also.

To make a long story short I spent 70 days in the hospital with the doctors trying to stabilize me. When I finally got to come home it was with IV's to maintain my hydration and TPN to maintain my nutrition as well as 2 drains. Home nurses were sent in to help and support my recovery. I did this for a month.

Now 5 months out I have lost 50 pounds which I am thrilled about, but the complications keep poping up. I throw every time I eat, I continue to have diarrhea with concentrated gastric fluid it compromises the seal on my ileostomy bag sometimes as many as 5 times a day. Needless to say I am depressed, disappointed, and discouraged.

When my family and I made the decision for me to have this surgery we had dreams and plans. Now we have complications and unexpected disappointments.

I am so ready to go out into public with out worrying about throwing up or having a leak from my ostomy bag.

All of the above is bad within itself, but it is nothing compared to the feeling of letting my family down. I have a wonderful 20 year old son at the University of Georgia who marches with the Red Coats, plays in a symphony, carries a 4.0,is in the honors program, partakes in an honors fraternity, and carries a full class load majoring in chemistry, completeing his minor in Spanish in August, and applying to the University of Georgia's School of Pharmacy. I feel like such a loser not being able to go watch his performances or visit with him or just give him the piece of mind that if he needed me I would be able meat those needs.

I have 3 beautiful special needs daughters that need a full time mom on her toes ready to meet their many needs. They need the sense of security that their mom is able to take care of their needs. I have disappointed them so many times, I never let them know any plans I make for them until I know absolutely for sure I will be able to follow thru.

My husband is the sole provider and picks up all the slack I leave which is alot. He misses the woman he married who enjoyed being intimate. Now he just has this person he has to take care of. I'm so self conscious about my ostomy bag and the scars from 37 abdominal surgeries I ca.n't imagine how he finds me attractive enough to want to be with.

This was supposed to be the surgery of our family's dreams, instead it has been a night mare.

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God bless you. I don't know where to start really i just hope and pray you will feel better and your dreams come true one day. I can't imagine what you are going through at the moment but all i can say is just keep pushing it you're a strong woman.

God bless.

:)

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I am so sorry to hear this. I know Crohns is a horrible disease to deal with.

I hope your doctors have some answers for you. There has to be something they can do for you, to stop the throwing up and diarhea.

Please keep us posted. You will get wonderful support here. Hugs to you (((Haley)))

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Hi Haley,

it's great you are here on this forum to share your thoughts and experience.

What you've been through is horrible, and I totally feel you.

I salute you, for being so strong to overcome all these. Choosing to have a gastric sleeve for a better future. It wil happen! You keep going.

You have a wonderful husband.. so supportive.. stay strong and positive, it helps you get better soon!!

Don't be disappointed with what happened, but look forward to what's going to happen, just bear in mind, all these will pass one day. and you should absolutely look forward to that day. STAY POSITIVE!

I know its easier said than done, but you've been through so much, don't let this get you. you will get better!

I pray for you.. please keep us posted to let us know how you feeling. This forum is great! and i'm sure you will get all the support you need.

Gwynne

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How are you these days? I am sorry I am just seeing this.

Hello fellow sleeve-rs, I have a long story to tell, but will try to keep you awake. Almost 7 years ago I was given a permanent illeostoymy due to Crohn's disease. I was diagnosed with Crohn's about 12 years ago. I tried all the treatments FDA approved and some I had to get from Canada. Because I had serious allergic reactions to all the "big guns" the doctors used to treat Crohn's. The treatment they all turned to was steroids. This led to a gain of 100 lbs.

My decision to have gastric surgery was based on the recommendation I received from the mayo Clinic after a full work up, from head to toe (literally). I was sick all the time. In and out of the hospital with blockages, dehydration, and poor nutrition. I also have osteoporosis at age 40.

I had my sleeve surgery December 6,2011. I also had old scar tissue, mesh, diseased bowel, and fat removed during a 6 hour surgery. The first 3 days went as planned. Day 7 things started to go down hill fast. I spiked a fever of 104, my kidneys shut down, I had to have a 4 pint blood transfusion, and a leak developed in my abdomen that required a chest tube because the amount of Fluid leaked into my abdomen was so much it caused my left lung to collapse. I had 7 drains to deal with also.

To make a long story short I spent 70 days in the hospital with the doctors trying to stabilize me. When I finally got to come home it was with IV's to maintain my hydration and TPN to maintain my nutrition as well as 2 drains. Home nurses were sent in to help and support my recovery. I did this for a month.

Now 5 months out I have lost 50 pounds which I am thrilled about, but the complications keep poping up. I throw every time I eat, I continue to have diarrhea with concentrated gastric Fluid it compromises the seal on my ileostomy bag sometimes as many as 5 times a day. Needless to say I am depressed, disappointed, and discouraged.

When my family and I made the decision for me to have this surgery we had dreams and plans. Now we have complications and unexpected disappointments.

I am so ready to go out into public with out worrying about throwing up or having a leak from my ostomy bag.

All of the above is bad within itself, but it is nothing compared to the feeling of letting my family down. I have a wonderful 20 year old son at the University of Georgia who marches with the Red Coats, plays in a symphony, carries a 4.0,is in the honors program, partakes in an honors fraternity, and carries a full class load majoring in chemistry, completeing his minor in Spanish in August, and applying to the University of Georgia's School of Pharmacy. I feel like such a loser not being able to go watch his performances or visit with him or just give him the piece of mind that if he needed me I would be able meat those needs.

I have 3 beautiful special needs daughters that need a full time mom on her toes ready to meet their many needs. They need the sense of security that their mom is able to take care of their needs. I have disappointed them so many times, I never let them know any plans I make for them until I know absolutely for sure I will be able to follow thru.

My husband is the sole provider and picks up all the slack I leave which is alot. He misses the woman he married who enjoyed being intimate. Now he just has this person he has to take care of. I'm so self conscious about my ostomy bag and the scars from 37 abdominal surgeries I ca.n't imagine how he finds me attractive enough to want to be with.

This was supposed to be the surgery of our family's dreams, instead it has been a night mare.

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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.
      · 0 replies
      1. This update has no replies.
    • 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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