Finding out you may have a chronic disease fucks with your identity

Discussion in 'Vaginarium' started by Falconer, Apr 26, 2009.

  1. Falconer

    Falconer OT Supporter

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    Unlike my normal posts, this one isn't logical and well thought out. It's just ramblings in whatever order I feel like typing them.

    So basically, for the last 6 months, every day I've been having abdominal pains, nausea, I'm sick to my stomach a lot, I usually don't have an appetite, and I've lost around 35 pounds, going from 178 @ 9% bodyfat to today where I'm struggling to stay above 140 @8% bodyfat.

    Medically, a team of 6 doctors still hasn't figured out what's wrong with me. They told me I "may" have Crohn's Disease, which typically presents itself between ages 20-30 (I'm 28), but all the Crohn's tests have been either negative or inconclusive. I've had a LOT of tests over the past 6 months. I am literally terrified at the notion of having Crohn's Disease. From the people I've spoken with online, it basically means a lifetime of pain, being sick, eventually requiring surgeries, and taking medications that destroy your immune system and your bank account. For people who give me shit in other threads for being a "cheap ass," fuck yourselves. If I wasn't such a cheapass I wouldn't have been able to afford tens of thousands of dollars worth of tests over the last few months despite being laid off over a year ago (insurance pays for some, but I'm still paying COBRA which is close to $500/mo). One of my credit card bills was $3,300 this month, and that was only medical bills (after insurance).

    My metabolism is fast as hell to begin with, and before I would eat 4-5000 calories a day minimum just to maintain weight. Of the weight I've lost, most of it came off in less than a month.

    Basically I went from looking awesome to looking like an anorexic 14 year old girl.

    This is affecting my confidence.

    Before, even tho I wasn't at my ideal body shape, I was still confident when I walked in a room. In most cases I knew I had a better body than 95% of the guys wherever I was, and that was immensely helpful to my confidence, and this was reflected in social settings as well as in business, and especially in relationships.

    Now, it's like the opposite. I look malnourished. I feel like crap. I don't like leaving home because it means being away from a bathroom. I actually felt fear the other day because I thought omg, if I ever get jumped, I am completely fucked now. Don't get me wrong, I'm not a ninja or anything, but before I didn't look like someone's first choice for "victim" and I've trained at MMA schools before so in a fight I wouldn't be completely helpless. But now, not only do I look weak, but I'm constantly in pain so I'd have to give up before it even began.

    It's funny, I used to complain that I wasn't big enough, but I was looking at some pics of the "old" me the other day and thinking "damn, I looked so awesome back then." It's funny how I didn't realize it at the time.

    My gf insists that I'm still hot, but I think it's just her love goggles talking.

    My gf has been totally sweet, putting up with me when I can't get off the couch for hours due to pain and/or nausea, helping me with stuff, not giving me crap when I don't want to go anywhere, etc. When I start to get worried or emo she reassures me and tells me she's happy with me and thinks I'm perfect (wtf love goggles talking right there), etc.

    For the first time since we've been together, I'm actually afraid of losing her. I don't mean in an AFC toolish needy way, I mean instead like I'm not as awesome as I used to be and I can see her attraction potentially fading as soon as someone better-looking who isn't sick comes along. Not that I would blame her: It is the natural order of things for attractive, desirable people to be together. What do I bring to the table if I look like a skeleton and can't do anything or go anywhere? Sure I'm awesome on the inside, but that qualifies me to be a friend.

    If I end up having Crohn's, I will become a financial and medical liability. The treatments can be more than $5,000 per month and often aren't covered by insurance. You can't exercise because that stresses your immune system and makes the disease worse. I already haven't been to the gym in 7 months and I'm going fucking INSANE.

    This has been a fucking identify shift. Before, being strong, attractive, awesome, and confident was who I was (altho it took me long enough to get there and realize it, lol). Now, it's the opposite.

    This next section is the medical section, so if there are any gastroenterologists here, feel free to chime in:

    Multiple hernia tests - negative
    Two urine tests for kidney stones - negative
    CT scan - revealed mild thickening of the terminal ileum, everything else was normal
    Colonoscopy - a few biopsies showed evidence of granulomas which is "suggestive, but not indicative" of Crohn's
    Upper endoscopy - nothing
    12 blood tests looking at all the normal stuff (CBC, sedimentation, etc) - all normal
    Small Bowel Followthrough Xray (the one where you have to drink a barium milkshake) - nothing remarkable
    Blood test for genetic markers of Crohn's - negative (come to find out this test often gives false negatives and false positives and is basically useless and also isn't diagnostic, so I was like "ytf did I get it, then?")
    Stool tests for parasites, bacteria, blood - negative

    Celiac disease was ruled out.

    I've also done a 20 day course of Xifaxan in case I had something bacterial that my body couldn't shake.

    Oddly enough, probiotics seem to make things *worse* after a few days (which anecdotally may suggest parasite infection)

    Next week I'm getting the capsule endoscopy test (you swallow a pill with a camera that takes a movie of your small intestine as it goes through you and sends the data to a computer thing on your belt).

    I'm also aware of how inaccurate and unreliable parasite testing is, so even tho they were negative that doesn't mean I don't have something.

    My doctor said depending on what the capsule test shows, it may help decide if I have Crohn's or not. If it shows ulceration, he wants to start me on some Crohn's medication. If that is the case, I'm going to insist on a round of anti-parasite treatment first just in case because certain Crohn's medication will kill you if you have parasites :noes:

    Anyway, the bottom line is that if I have Crohn's, it's not blaringly obvious from labratory tests. My doctor said sometimes that's how it presents, but it could still be something else (altho I haven't heard any other suggestions). I was told after my CT scan that "it's probably not cancer," so that's good I guess.

    Anyway, I'm getting off track. This was supposed to be an emo post about identify shifts which is why I am posting it here and not in Asylum but it ended up being a bunch of medical talk. Blah blah.

    I saw some friends tonight that I hadn't seen in months and every single one of them was like "holy fucking shit dude, what happened to you?" :hs:


    But at least if I do have Crohn's, there are some new stem cell treatments that are in phase 3 (I think) of clinical trials that have been looking very promising!!! And now that we don't have a bible banging republican president anymore, we might actually increase the rate at which medical technology progresses :big grin:


    My mom (half-jokingly) told me this is happening to me because the universe is punishing me for putting too much emphasis on physical appearance before :mamoru: But I have always dated very attractive women, and it's hypocritical for me to want an attractive woman if I don't bring that same thing to the table. Plus, I liked looking good and feeling good. It provides an unspoken edge in all social matters. It's taboo to discuss how attractive people get treated a million times better, but everyone (read: most people) knows it's true. Women paid attention to me without even talking to me first. Men respected me without even talking to me first. This provided a PHENOMENAL feeling of self-worth. People automatically liked me more right off the bat which served me better in social situations AND in job interviews. I knew this was the case and so I was confident, which only helped whatever situation I was in. I had worked SO HARD for 8 years, combating a ridiculously fast metabolism, to reach a point where I was at a physical advantage over most people socially, and in a matter of months, it's gone.

    I guess the next step is to learn how to maintain good inner game and social skills while being frail, weak, and non-masculine. And to get rid of this motherfucking abdominal pain.
     
  2. ww_Crimson

    ww_Crimson New Member

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    Dude that was way too long of a post but you're letting this fuck with you way too early into the game.

    I was diagnosed with Crohn's disease about 18 months ago after having already had it for like a 6 months before I went to a doctor.

    I lost 85 pounds at the beginning (I was overweight at 265) and look really ill for a while. I eventually bounced back up to 210, dropped back down to 190, now I'm stable between 190-200 (at 6'2").

    I'm not going to get into all the medical shit of it right now, however, there a few medicines you should research. Lialda, Imuran, Prednisone, Humira, and Remicade, and I can't remember the other one.

    There are patient assistant programs that help pay for the more expensive medications. Right now I'm taking Humira shots weekly or bi-weekly (going to see my doctor to change my regiment in about 10 days) and with insurance it's only costing me about $100/month in co-pay. I know it's not cheap but it could be worse. Again I've had this two years and been able to avoid a surgery. I take percocet when my pain gets out of control but I haven't let it hold me back too much in life.

    I've had a serious relationship, a good amount of sex, and met numerous girls since I've been diagnosed. To be honest every girl I've told about the disease has been sympathic but not in a "ohh poor baby" manner. They've all be understanding, curious, and caring. I've yet to have a girl say she was unattracted to me because of my stomach condition.

    Yes, your physical appearance may be off for a bit but it will eventually bounce back. Try drinking meal replacement drinks and stuff to keep your body up. Get blood tests every few months to make sure you don't have anything wrong with your immune system. I took prednisone for a very long time (in high doses) which made me swell up like a balloon for a while but honestly, you will level out eventually. Forum member Lukas also has a chronic stomach condition and he may be able to answer some questions for you as well. Don't worry about what you look like for now, just worry about your health. Your girlfriend will not leave you because of your condition, she probably is upset she can't do more to help you.

    Keep your chin up Falconer, PM me if you have more questions.
     
  3. Falconer

    Falconer OT Supporter

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    I can't use corticosteroids (such as prednisone) due to another issue.

    edit - of everyone I've talked to online with Crohn's, yours was the most optimistic post I've ever read.

    Everyone else is basically like:

    - lifetime of pain
    - almost 100% chance you will need at least one surgery
    - you will go broke from treatments
    - your immune system is fucked and even the common cold will be 100 times worse and last forever
    - can never be more than 10 feet from a toilet
     
  4. ww_Crimson

    ww_Crimson New Member

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    You may want to talk to a doctor about getting on a small regiment of prednisone until they can come up with some conclusive tests. It's not a great drug to be on and can be pretty detrimental in the long run, but it eliminated my pain and let me be a normal person. I've gone to the gym plenty while have Crohn's just not on a 3-5 day/week schedule like a lot of the broly's do. Having support from your family and friends is critical, I can't tell you how much they've helped me just from talking and supporting me. You're sounding like a hypochondriac talking about having a horrible immune system. It's not AIDS bro. I've never missed a day of work (admittely I should have gone home a few times from the pain) or been very sick since being diagnosed.
     
  5. ww_Crimson

    ww_Crimson New Member

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    Fuck.
     
  6. Falconer

    Falconer OT Supporter

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    Which is why I'm all :noes:
     
  7. Falconer

    Falconer OT Supporter

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    Did you get the blood test from Prometheus labs? Was yours negative? PM me when you have time.
     
  8. ww_Crimson

    ww_Crimson New Member

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    I get blood tests like every 6 months (supposed to go every 3). Never had a single thing wrong (since I started medicine). My Albumin count was really low before I started taking any medicine.
     
  9. Falconer

    Falconer OT Supporter

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    Oh, the blood test I was referring to was the one that checks for genetic markers of IBD. Prometheus Labs in California is the only place that does this specific test.
     
  10. iwishyouwerebeer

    iwishyouwerebeer you shut your cunt Moderator

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    Are you seeing a psychologist regularly? Because you need to put money into that
     
  11. BlackIce72

    BlackIce72 New Member

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    .
     
  12. vodkacollins

    vodkacollins New Member

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    my sister-in-law and my brother have this. they each took very different approaches to their treatment and therefore have very different outcomes. PM me your email address and i will have my husband email you the details about the stuff with his sister and i'll give you the details about my brother

    my thoughts, after watching two people i love go through it? its not the end of the world, there are solutions so try to keep your head up about it. my sister-in-law leads a very normal life despite all of this. your stress will honestly make it so much worse than it needs to be, so you also need to find a way to chill out so that your body doesnt get effected like it is at the moment. stress will make you a LOT worse
     
  13. sportsfreaky211

    sportsfreaky211 New Member

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    First have the doctors considered it might be just Ulceritive Colitis and not just full blown Crohns disease they are different. I was tested for Colitis 7-8 years ago. I lived without issues for 23 years then it showed up. I was on Asacol for about 3 years with it being pretty well controlled then the asacol stopped working. I changed to a different drug that helped for about a year then my body got immune to that as well. The last stage was an IV drip of remicaid. I was on that for close to 2 years but they kep having to increase the dosage. Eventually my body lost the fight and in January of 07 i had surgery called Restorative Proctocolectomy and haven't looked back since. If it's just colitis this procedure will remove the disease and you can live a normal life with no drugs and you don't need an ostomy bag.

    Feel free to pm if you have any questions .
     
  14. Falconer

    Falconer OT Supporter

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    According to my GI doc it's not UC.

    I've heard the symptoms of UC are actually worse, but UC can be completely cured with surgery whereas Crohn's will keep coming back even after surgery.
     
  15. GTLifter

    GTLifter Banned

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    There's a bunch of OTC/homeopathic shit I take daily to prevent inflammation from lifting which would probably be beneficial. A lot of fish oil is one of them.

    Also, if it affects the immune system when you exercise why not treat it the same way HIV/AIDS is treated? HGH and anavar would be the way to go. Which would also help you put some weight back on.
     
  16. JohnJohnJohnson

    JohnJohnJohnson Effetely Sipping My Latte OT Supporter

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  17. DubOverdose

    DubOverdose New Member

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    I was diagnosed with Crohn's just over 5 years ago. I went from ~145lbs to 108 in a matter of 2 months. Once I was diagnosed, I started on some meds and started getting better. The meds I was on were pretty weak and about a month after starting on them, I was back feeling like shit. I was put on some stronger meds, including Imuran, which helped for the next few months. I ended up having surgery about 6 months after being diagnosed. There's no way to beat around the bush, the surgery sucked. What I can say is that after recovering from surgery, I rarely have pain associated with Crohn's. Sure, I get sick slightly more often because my immune system is weak, but its not that bad. I only have to take 2.5 pills everyday. I know that I can't stuff myself with food because I'm more likely to need a bathroom. Everyone is completely understanding of the disease. If I'm driving and realize I need to go to the bathroom, I haven't had any friends give me a hard time.

    You really can live a pretty normal life with Crohn's. I know one other person in real life that has it and he's had one short (1-2 weeks?) flare up over the past 4 years that I've known him.
     
  18. antihero

    antihero OT Supporter

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    :hug:

    So sorry to hear dude.
     
  19. nsane

    nsane New Member

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    My little brother was diagnosed with Crohn's about 1.5 years ago. It's been rough, but it seems like with Crohn's its all about getting it to go into remission & then maintaining that state until you get a flareup (I realize that the symptoms vary for patients, but this has been the case for my brother). He started Remicade in January - after over a year of non-solid poop, he's nearly back to normal. Anyways, I feel what you're going through.


    He's 15 :(
     
  20. Falconer

    Falconer OT Supporter

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    i'll be PM'ing some of you guys later when I have some time.

    Thanks.

    :hug:
     
  21. BlazinBlazer Guy

    BlazinBlazer Guy Witness to The De-Evolution of Mankind.

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    Falconer, I really empathize with your situation; I've had almost the exact same symptoms and effect on my life for what's going on 5 years now. Same battery of tests, same results, all of it. It definitely sucks.

    I have found a few things that have helped me to be more on my feet than I was, (involves a cocktail of various medicines and suppliments) -- if you want feel free to PM me about it and I'll pass along the suggestions.

    Good luck! It can be hard getting past the feeling of helplessness and overall frustration, but trust me it can be done. Just takes time.

    :hs:
     
  22. Abomb

    Abomb New Member

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    Well Falconer man... that fucking sucks and If I was in the same situation I dont think I would be able to handle myself as well as you have.... I think before you stress yourself outanymore (if thats possible) just try to relax and hope for the best since the doctors are not finished testing.. and if theres anyway you can possibly afford it... get more opinions
     
  23. Abomb

    Abomb New Member

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    and this.

    might as well hit up "alternative" medicine. if life gives you lemons, make hgh.

    soon as i hit 35 im getting on hgh anyways
     
  24. Lucky Penny

    Lucky Penny Mr. cut me some slack cause I don't wanna go back,

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    at your mom's house. be back later.
  25. Genghis.Tron

    Genghis.Tron New Member

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    Flaconer, just be careful about your girlfriend loving you still. You can love someone for who they are but you can also love the relationship that you have with that person, how things are going, how he's treating you, things you're doing, making a life together and so on. If you start being too conscious about YOU, it might affect how you act with her which could scare her away (this is called a self-fulfilling prophecy). It's not only about what you are but also how you make her feel...
     

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