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I am new here, I haven’t been on a public forum in a long time (and for a reason) but I thought it might be helpful to write out my bariatric surgery journey as best I can. I don’t know anyone who has had the surgery with chronic illness, disability, multiple medical conditions, etc. let alone anyone with M.E. (Myalgic Encephalomyelitis) which is a kind of immunodeficiency. I’ve lived with this from childhood and also battled with my weight longer than I care to remember.

This is long and hard to talk about without going into intense detail. I wasn’t not diagnosed with M.E. Until I was in my early twenties. It was a long road to get there and led to many questions and many other medical conditions down the road. At some point my weight skyrocketed out of control and I was at a loss as to what to do. I was diagnosed with metabolic disorders but meds made me sick and doctors don’t discuss weight. They only vaguely agree that the metabolic disorders cause weight gain. And at most prescribe risky weight loss drugs.

At some point I was just too sick to know what to do. The reality is I always will be sick. It was easier to eat carbs when I didn’t feel well enough to tolerate much food. I was always a clean plate person and hate waste. My weight grew to over 215lbs and my body couldn’t take it. I needed to do something even if it took every ounce of my being. I didn’t know then what I know and doctors know now about M.E./CFS. But I studied holistic health and nutrition, trying everything to no avail. I ended up trying a combination of low carb/Atkins and calorie counting (weight watchers points) slowly I lost weight (I was 5’ 4” then 5’ 2” I kept losing inches due to degenerative disc disease and arthritis in my spine , I’m now about 5’) I got down to the lowest I’d ever been at 123lbs.

But it crept back up by 10lbs. But I had to accept it. I started having trouble eating certain foods and feeling very sick. I had some major stress events happen, several surgeries on my feet and tendons, and also Major surgery (hysterectomy) I wasn’t eating the best I could for reasons I couldn’t control. Eventually my weight hit 160lbs about when I moved with my mother to a new state. I was on a beta blocker and reduced my calories further and did strict low carb again. But reached about 134lbs. I couldn’t sustain it.

Not that long ago, months, my sense of time is terrible I can say what happened but not the order or time. I fought as hard as I could and would go on nature walks until I learned more about the birds and became a birder and took to loving photographing them. I went as often as I could and it wasn’t often enough. I found out the hard way that Myalgic Encephalomyelitis causes something called post exertional malaise. Doctors only now are starting to understand it and it explains a lot. Activities from simply writing out this message, taking a shower, making a meal to exercise, make my medical condition worse and cause lasting damage that I lose bits of my self. And doing no I enjoy hurts like a punishment.

My weight started a sudden drastic climb from 134lb to 160+ and I went to doctors and specialists hoping for an answer why. And then again it continued to climb to 180lbs. I had thought about bariatric surgery the first time but wanted to do it on my own. But this time I couldn’t, my body just wasn’t burning enough calories and how little could I eat without getting too sick. I was eating healthy the same portions as my mother, almost the same meals, I prepared us lunch almost every day and she is the same height but at most 100lbs. It was fight for surgery or nothing. The first time I saw a bariatric surgeon he talked at me and didn’t listen, my weight was slightly below BMI to qualify with comorbidities, i had plenty. But nothing acceptable by my insurance. I had just had to have surgery for another problem and could hardly eat. But I kept gaining. And I gave up on that doctor. I forgot to say I found out at some point that the reasons some foods made me sick was my gallbladder and surgery was recommended so I decided if I have to have that then I should pursue bariatric surgery since recovery is quite similar.

eventually it reached 200lbs and I was on the edge of being nearly 40 BMI. I decided to see another endocrinologist about my medical conditions. She couldn’t help me since the meds make me too sick and I explained how I eat and count calories and yet my weight skyrocketed. I was about to quit when I decided to say I was fighting for bariatric surgery. She said go to Cleveland clinic. It’s a far distance from me and I needed medical assistance for rides there. But I got in to see Dr. Szomstein and he right away was ready and willing to help me, I was a hair from 40 BMI at the first appointment. He didn’t quite understand all my medical conditions if at all but he knew what to do. He said I should have RNY Gastric bypass due to severe GERD and I was thankful for that since it would reduce calorie absorption as well. I was almost not expecting approval from my insurance. I had months of my doctors noting my efforts to lose weight and letters from the endocrinologist and surgeon. They had me go for pre op tests and medical clearance. I still didn’t expect anything.

i was in target when my mom and she got a phone call. Scheduling surgery in two weeks and for me to start the liquid diet that day. The surgery date was April 29th. I was so unprepared my gastroenterologist had wanted me to have a colonoscopy before surgery and that didn’t happen (he wasn’t happy with that) I knew I was possibly in for hell with this, but it was either surgery or give up.

surgery day I was like this is easy. But I hit a bumpy road. Without going into too much detail right now. I didn’t expect it’s impact on my chronic illness. Waking up from surgery was like a long tunnel I couldn’t get out of. I was partially aware of things around me during the entire surgery just sped up like a weird dream. In the hospital room when most people get up and walk, my body couldn’t move at all. And when I tried once I crashed hard. Every chronic pain in my body was screaming all at once in the hospital. I was having severe pain in my chest, they blamed on gas I knew it wasn’t. I was struggling to breathe and needed the oxygen longer. My surgical drain kept getting full too fast. The catheter hurt. I high pain tolerance and yet this was slamming me everywhere all at once. They tried me on liquids by day three and I just wanted out.

I got home and had trouble breathing and was very weak. I struggled to do laundry and get groceries. Then I started spiking fevers. My body doesn’t react with fever when it needs to, my lungs are sometimes too weak to cough when I need to. My temp went over 102 at night then dropped to low grade by morning. I ended up being told to go to the ER but I couldn’t get to Cleveland clinic. Long story short it was another long three days in hospital, pneumonia, acute uti, and critically low potassium. My temp was normal. They pumped me with potassium and antibiotics but had no concept of pain control and knew nothing about post bariatric surgery diet of Protein Drinks and liquids. They brought me a regular meal for Breakfast. By day three I wanted out. I left with a diagnosis of Aspiration pneumonia, and esophageal dysphasia and told to see an ent (who then told me to see a neurologist) and a incidental finding of a pelvic adnexal mass that I am see my euro/gun about.

Swallowing is painful, the pain in my chest never went away it waxes and wanes and gets out of control painful at night. I am still mostly liquids. I was supposed to start purée some time ago. I tried some things that were palatable but the first tiny bite I got Nauseous and couldn’t push it even sitting drying to consume either liquid or purée took nearly an hour and the purée was just not working. I don’t regret it yet I do yet I don’t. I’m still trying to get answers to some things. Other things I won’t go into detail now. This is much too long. I saw the doctor for follow ups twice. This time he ordered a upper GI fluoroscopy, and then a endoscopy. The first is this Wednesday. I’m struggling to get in at least 50 grams of Protein a day. I lost around 27lbs but am in a five day stall.

I think that’s as much as I can describe for now. But my one issue no one ever addressed is no nsaids aka Ibuprofen for life. I took it three times a day to take a bit of the edge off my chronic pain. My muscle relaxer doesn’t do much and it’s impossible to grind and swallow tablets. Thankfully diphenhydramine comes in sleep melts. But I have no pain management now. And I can’t function to walk as much. I try to keep on my feet as much as I can to at least do what I need to do. But now when I crash each day I crash hard. I got extremely sick doing laundry when I had to do three loads and threw up more than once. (I have a bit of ptsd when it comes to throwing up) but this is too much to write here and now. I just am finding myself alone in this, my mom can’t quite understand how it is. And I don’t know anyone else who has chronic illness that has had gastric bypass surgery. I’m not worried about food, I can make my mom a meal and not want to eat it. Actually my taste is nonexistent. I had trouble with it prior as well as my sense of smell. But so much just tastes nasty and bitter. (Didn’t help I ended up with nasty oral thrush I can’t shake)

i feel weird putting this all out there. So I hope that sometime say can relate to someone somewhere in some way.

christine

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Wow what an ordeal you have been through! I have been trying to get the surgery for years ! Every time I go through the whole process I end up having a seizure! I have epilepsy with uncontrollable seizures, a heart condition , severe neck and back Chronic pain from falling from my seizures. I am trying again this month to start the process and am terrified! I hope someone on here can give you great advice 💗

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54 minutes ago, Amelia2019 said:

Wow what an ordeal you have been through! I have been trying to get the surgery for years ! Every time I go through the whole process I end up having a seizure! I have epilepsy with uncontrollable seizures, a heart condition , severe neck and back Chronic pain from falling from my seizures. I am trying again this month to start the process and am terrified! I hope someone on here can give you great advice 💗

I understand, every step forward my body fights me and sends me reeling backwards. It’s like climbing a steep cliff. I have many diagnosis and many unanswered symptoms. It took what feels like most of my life fighting with my weight before I could take this step. I had a tbi as a child, severe Migraines, though I haven’t had seizures I can understand your predicament. Have you ever tried the Keto diet to help with seizures. I studied a lot when I was first diagnosed. food as medicine. Something about the high fat, low carb, controlled Protein can help. It’s been used as a medical treatment since the 1920’s. Also low dose CBC oil for epilepsy has been shown to be the one true scientifically proven medical use for CBD.

I took so many Vitamins, herbs and supplements that I researched to no true benefit to me. High fat, low carb, moderate protein worked ok for me until it didn’t between metabolic disorders and hormone imbalances and surgery. It gets exhausting when battling with obesity is a daily thing. Some part of me feels like this is punishment , having the surgery. I thought I was doing the best I could and it wasn’t enough.

I wouldn’t have gotten this far had my mother not been my advocate and at times almost like an interpreter talking to doctors, making phone calls, dealing with the insurance and all the hoops you have to jump through. Being autism spectrum, I deal with sensory overload, it gets worse the more fatigued I am.

it takes too many words to try to find the ones That make sense and to say what I want to say. Don’t be afraid, step into it knowing that you are doing what you feel you need to do. My brain works differently. I don’t see ahead, I see the moment I am in. I didn’t think about the surgery until I was there. When the surgery date came up I didn’t think of the after. Just getting through the day. Probably not a good way to think but it’s how my brain works. I just knew it was either do this surgery and risk everything or give up ...

I hope you can find the road to what helps you most ,

christine

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    • veisor  »  Panda333

      Hi!
      Thank you for replying.   It means the world to me.  It also confirmed what I been feeling about which procedure to choose.   I fall into the category as you do and elected the sleeve as it seemed to be less invasive and recovery would be better and faster,  however I am so afraid to regain the weight back since I rarely eat and obesity runs in my family.   I have two siblings that had the bypass and they have been successful.  My sister was in the high 400's and is about 140 now and has been for several years since her procedure.  I guess I felt that the sleeve would allow me to have more control, however I realized that I can't control my genetics and that is one of the biggest reasons that I am here.  Yes, I have not always made the best choices but trust me when I say that I have been on the loss and regain + more rollercoaster weight ride for yrs! I have spent so much money as I am sure you have as well as many others who are going through this.  It is not easy and anyone who thinks this is a copout is crazy!!! This has been harder than anything I have done including hiring a personal trainer to kick my butt in the gym! And still with all the gym hours, clean eating "not to mention the clean eating cost" I knew it was time that I moved to the next step to finally be who I know in my head and heart cause when I see myself in the mirror,  well let's just say is not the girl I see in my mind. 
      So thanks again for your reply and I hope that we can keep in touch through our journey. 
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    • AggiG

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    • Pookeyism

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    • ms.sss

      I just read @BoredCW's status post and also want to lament the loss of my butt.  Looking at me the side, my back is basically flat from my neck to my knees.  My jeans have lovely fabric folds draping from my backside from lack of filling.
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      · 5 replies
      1. FluffyChix

        HI-LAR-ious! I love your kid!!!

        Yeah, we all suffer from noassatall syndrome. :(

      2. 2Bsmaller18

        Yes. I think the spandex in jeans is the only thing that helps keep the sag below the pockets form looking ridiculous. Even leggings wrinkle there.

      3. ms.sss

        Ah, our disappearing collective butts.

        I am seriously considering changing my plastics plan. I am booked for an arm lift in December, but my summer obsession with arm exercises has improved the look of them quite a bit to the point that I think I may hate my butt more than my arms. Should I do a butt lift instead?!?! In conjunction with?!?!?

        I am trying to cultivate an obsession with butt exercises but its not working so far...

      4. 2Bsmaller18

        I don't think you could do both at the same time. For me personally it's arms. I have granny wrinkles down to my elbows. I can always dover my body with tshirts, pants, etc but unless I wear long sleeves my arms are an issue. I also can't wear a small enough jacket since it fits everywhere but too tight in the arms. They measure around 13.5 inches. Can you compromise and get the smaller arm lift. I don't know if that saves much $ or recovery but if your arms improved that much maybe just a tweek will work?

      5. ms.sss

        The difference in price for a mini arm lift and the full arm lift at my surgeon is less thank 2K and probably not worth the savings. May as well pay the extra bit and get the full arm lift as my sag also reaches my elbows. You are right though, my arms see the light of day way more than my butt does...I'll have to see if the continued butt exercises will change my mind down the road (but it's looking more and more that a butt lift is in my future)

        P.S. At the beginning of my 2 week pre-op diet, my upper right arm measured 17.75 inches in circumference. Now its 10. And that is with the extra skin still.

    • BoredCW

      On the 3 week plateau from hell.. It seems like an endless desert with sand dunes that represent the 1-2 pounds gain then dropped from day to day. Met with my weight loss group tonight and was told its normal. That this is sometimes like a step, plateau then drop, plateau then drop. Only for the plateau's to go on longer the farther away from the surgery date I get. Much like EDM, I can't wait for the drop. 
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      · 2 replies
      1. ms.sss

        Hang in there, the plateau will end eventually. Also I feel you on the butt thing.

      2. FluffyChix

        I have a butt pillow. I'm not proud. :D

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