Finally introducing myself, super restricded diet challenges

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Hi there, I'm a big dude, 6'5" 339 at last weigh in. I was 380 at my worse and was dealing with health issues, and I still am. They started around 2005-6 and slowly got worse, we thought we knew what it was, symptoms were consistent with diverticulitis, and I'd have a flare up once or twice a year. A couple weeks of antibiotics and pain meds and I'd be ok again. We never looked any further because the treatments seemed to be working and I have family history of diverticulitis

In September of '09 that changed, I woke up about an hour after going to bed, and feeling like I was on day 5 of the flu and ended up spending the next 8 hours in the bathroom, losing a lot of blood. I'll leave all the details out, but I'm sure you can put 2 and 2 together. I woke up on the floor in a pool of sweat, after passing out from pain and exhaustion. I cowboyed up and drove myself to the ER, not the best choice as my roommate was sleeping through this 10 feet away, and he is nearly my size and a body builder and he could have easily carried me if need be. Anyway I drove myself to the ER, wait a couple hours to get called back, during that time I had a couple more "episodes" in the waiting room bathroom. When I finally see a doc the first thing he tells me is I should have called 911 and if I hadn't come in when I did there was a good chance I would have died. I was admitted and given all sorts of meds, dilaudid was amazing and I went from worst pain of my life to not caring and finally able to sleep. I didn't get the dilaudid until 12 hours after being admitted and over 24 since my issues started. I was in the hospital for 4 days, couldn't eat any food and was sent home without any more explanation than I had a bad infection. I spent the next 3 months in bed on pain meds and on and off of antibiotics. I went 10 days no food, including the time in the hospital. after that 3 months I had lost over 80 pounds, still had massive pain and spasms.

I gained most of that weight back, and dealt with this horrible pain everyday and got little more than "unexplained inflammation" and IBS from the doctors. We finally got it somewhat under control with massive doses of meds. My pharmacist uncle said he has never seen anyone take the doses of the meds I take. Unfortunately high tolerance to most medication also runs in the family.

After dealing with this for so long I switched doctors, hard to do when you are unemployed because of your illness. Now I go to the Cleveland Clinic, which is one of the best hospital systems there is. It was with them that I have finally found some relief. I still don't have a diagnosis I like, but I am on a very restrictive diet, basically an elimination diet, that I can expand every couple weeks with something new, but I have a huge list of otherwise healthy foods that I cannot eat. For example I can only eat a handful of veggies and they cannot be raw, the only raw fruit I can eat is banana. I don't mind though because I've gone from horrendous chronic pain every day to mild pain a couple days a month if I eat the wrong things.

When I'm feeling well I cheat a bit but still try to stick with healthy stuff, but sometimes that craving for fast food or sugary stuff gets me and I cave. I managed to not gain any weight over the thanksgiving/christmas holiday and weighed in at 350 on new years day. I joined MFP about a week or so later.

The other great thing about the new diet is I actually WANT to go to the gym, where before even if I wanted to I just didn't have the energy or I was too depressed to do much of anything.

And anyway here I am now, happy motivated and losing weight in a healthy way, and MFP is a great tool, since I was logging all my meals before anyway. I just ordered a food scale, and it will come in handy because even though I was on a diet I didn't have calorie limit. It was to learn how to eat correctly all over again. My health issues would cause me to not eat for several days as that was the only thing that would make the pain go away, then I would eat huge amounts of food, and even when I was eating it would tend to be one huge meal a day.

I've got some goals set, can't wait to reach them and can't wait to not be a giant fat dude anymore, but a giant healthy dude instead.

Oh yeah, I'm 33 years old, so I spent 30-33 in bed sick and 25-30 felling really bad most of the time.

Sorry if I rambled or repeated myself, I kept getting distracted.

Replies

  • Lisameer4bs
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    Wow! You've had a hard few years there. Sorry to hear you've had to live with so much pain. It's amazing how many people you hear about you are left undiagnosed for years. I hope that eventually you get a diagnosis that will in turn be able to give you some real solutions on how to deal with you diet.

    :flowerforyou: Here's to your future giant healthy you!
  • sbbhbm
    sbbhbm Posts: 1,312 Member
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    Doctor's do their best, but I feel like half the time they're pulling diagnosis out of their rears. I spent years in horrible pain- middle of my abdomen, radiating through my back. I'd have an acute attack at least twice a month. The first diagnosis- "She just exaggerates, it's just a stomach ache" or "maybe she's trying to get out of school". No tests done, no attention to the fact that I was doubled up on the floor and almost immobile. This started when I was 8 years old. Finally, just before my 12th birthday, I wound up in the emergency room because the pain was so bad I kept blacking out. I had started out at the doctor's office, where they'd finally drawn some blood to see if there really was something going on. Before the results came back, they sent me to the ER because I collapsed after the blood draw. The ER did an upper GI, told me I had gas, and sent me home with the instructions to "drink a soda and belch". Seriously. We had just got home, about to follow the ER's orders, when the phone rang- the doc had gotten my blood work back. My system was shutting down. My pancreas was in serious trouble, and my gall-bladder was failing. I have chronic pancreatitis. I was admitted back into the same ER, and told by the same idiot who sent me home with "gas pains", that it was impossible for me to have pancreatitis, because that is an alcoholics disease and I was only a 12 year old girl. Then they did an ultrasound- my pancreas, from so many years of acute attacks, is almost entirely scar tissue. They told me it was so bad that I probably wouldn't live to see my 25th birthday (they were so freaking insensitive about it too... I was a 12 year old for crying out loud!) But after dealing with it and managing it, and recognizing my triggers, I am now well past my 25th birthday.
  • Suzannemacwill
    Suzannemacwill Posts: 3 Member
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    you know what suck on no sugar candies. it works for me when the cravings start.
  • scorpfem
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    I am sorry to hear of your struggles over the years and wish you well with your new journey. :smile:
  • pkdarlin
    pkdarlin Posts: 149 Member
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    So glad you are doing better. Sounds like you are on the right track.
  • danmcgarrigle5
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    Thanks for the support guys, and sorry to those who sent friend requests, I only have friends I know personally. That may change in the future depending on how active I am on these boards or not

    And yeah it was very frustrating, mainly because I was showing no symptoms for so long, only during a flare, and then it was consistent with diverticulitis and family history. I've gone through several tests, had emergency gall bladder removal, with another 4 days in the hospital where I wasn't even allowed water because it was over the thanksgiving holiday of 2011 and they didn't know when they could get my procedures scheduled (ERCP and gall bladder removal) The ERCP is by far the worst experience of my life, mostly because I am very resistant to the sedation meds, and pain killers in general. During the ERCP you cannot talk though because they are basically putting a garden hose down your throat and into your pancreas/liver. Over the years of me not eating for 4-7 days at a time just to have some pain relief meant that I was making a lot of stones and some had made their way up into my liver and pancreas, so I had to go back 2 months later to have them removed. That time they gave 4 times the normal doses, basically because I begged to be put under completely and when the doc asked why I repeated everything he said during the procedure to the nurse. He stood there nonplussed for a couple of minutes and told me I shouldn't remember any of that. I told him that was why I was fighting the restraints so much during the procedure, he made a note right there to up the meds used. It was funny too because when they were done with the second one they wheeled me out to the recovery room and I sat right up and asked if I could leave yet, the nurses all looked at me slack jawed while looking at how much meds I had been given and one even asked another "Should he even be awake right now?" I still had to wait an hour before I could leave.

    What was even worse was since they couldn't find anything causing these issues I was treated like a drug seeker and that was even more crushing to my spirit. Even the one doctor that would prescribe me some pain meds wouldn't after I told him I wanted to give it a shot with no pain meds and find a different way to handle the pain, after a couple months I asked for them again and got a big fat "not gonna do it" And yes, we went down the list and eliminated all the things it could have been, no crohn's, no diverticulitis, no UC. I did have a couple polyps but removing them made no difference.

    I hate talking about this stuff in person, because well it can be embarrassing, I've got a few close friends that literally saved my life who I can talk about anything with, but outside of them it's tough and just doesn't make for a good conversation in a social setting.

    Also sorry for the walls of text, once I get going on this stuff I find it hard to stop, oddly enough, in person I am very concise and direct when talking about anything.
  • danmcgarrigle5
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    Doctor's do their best, but I feel like half the time they're pulling diagnosis out of their rears. I spent years in horrible pain- middle of my abdomen, radiating through my back. I'd have an acute attack at least twice a month. The first diagnosis- "She just exaggerates, it's just a stomach ache" or "maybe she's trying to get out of school". No tests done, no attention to the fact that I was doubled up on the floor and almost immobile. This started when I was 8 years old. Finally, just before my 12th birthday, I wound up in the emergency room because the pain was so bad I kept blacking out. I had started out at the doctor's office, where they'd finally drawn some blood to see if there really was something going on. Before the results came back, they sent me to the ER because I collapsed after the blood draw. The ER did an upper GI, told me I had gas, and sent me home with the instructions to "drink a soda and belch". Seriously. We had just got home, about to follow the ER's orders, when the phone rang- the doc had gotten my blood work back. My system was shutting down. My pancreas was in serious trouble, and my gall-bladder was failing. I have chronic pancreatitis. I was admitted back into the same ER, and told by the same idiot who sent me home with "gas pains", that it was impossible for me to have pancreatitis, because that is an alcoholics disease and I was only a 12 year old girl. Then they did an ultrasound- my pancreas, from so many years of acute attacks, is almost entirely scar tissue. They told me it was so bad that I probably wouldn't live to see my 25th birthday (they were so freaking insensitive about it too... I was a 12 year old for crying out loud!) But after dealing with it and managing it, and recognizing my triggers, I am now well past my 25th birthday.

    Yeah, I have very little faith in doctors unless it is an obvious physical trauma of some kind. I do have one doctor that I love, he is the best doctor I've ever had but without insurance or a job I can't see him as much as I would like since he isn't in the networks for low income financial assistance through the county hospital and now the Cleveland Clinic. I was so happy when I found out about the CC's financial aid coverage for people in my situation, literally every person I've seen there is nice friendly and concerned with how you are doing, from the desk clerks and technicians to the doctors themselves