RNY with chronic illness, disability and metabolic disorders

[Darktowerdream 419]

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

[Amelia2019 22]

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 💗

[Darktowerdream 419]

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