Crohns Disease and strange symptoms of...what? - Page 8

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Crohns Disease and strange symptoms of...what?

This is a discussion on Crohns Disease and strange symptoms of...what? within the General Off Topic Discussion forums, part of the Life Beyond Horses category

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    08-21-2013, 07:52 PM
Teen Forum Moderator
Yeah, I'd say at that point its worth a shot!

I'm hoping if this is an ongoing problem (probably will be) for me, once I'm out on my own in a few years I can pursue different types of treatment and doctors since I'll be the one dishing out the money. For now though all I can talk mom into is traditional doctors, though she has agreed finally to let me see a naturopath doctor if nothing comes up in these tests.
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    08-22-2013, 07:10 PM
Teen Forum Moderator
Ok, well I had the tests this morning and they went fine. I could hear throughout the entire procedure which was a little strange, but barely felt a thing. My throat is killing me now though. I'm sure it will be fine in the morning but geez to I wish I could eat ice cream right now.

They didn't see anything horrifically wrong other than that I have an estimated 3x as much bile as I should have in my body, and it coats just about my entire insides so that they're yellow. No explanation as to why theres so much and why its making as far as even to the bottom of my small intestines and up into the back of my mouth, but they're going to try a new medication that 'coagulates' (I think that's the word?) the bile and makes it thicker so that it hopefully slows down and stays where it should stay. Without a gallbladder though I have nothing to siphon it like I should, so there really isn't a lot I can do. I sorely wish I hadn't had that thing taken out... I should get the biopsy results by next week and then I'll know whether or not I'm having trouble breaking down any certain type of sugar, and we'll go from there. No severe inflammation of the intestines though, so they don't think I have Crohns after all.

I'm insanely angry right now though...whether or not with justification or not I don't know. I think I was still supposed to be asleep but I overheard my doctor basically telling my parents that he sees no real reason for me to be in pain or to not be eating, and that he thinks I might be doing this for attention/because I have
A form of hypochondria or something. He said maybe I'm anorexic, and I really ought to see a psychiatrist, especially since my mom was anorexic at my age.

Really. Honestly. I realize he doesn't know me other than knowing what my entire insides look like and that I'm always saying that I'm hurting, but again...REALLY? Does he think I enjoy spending away our savings (and racking up bill after bill for my parents when I KNOW our financial situation is bad), going in for all of these tests, having the life drained out of me? If it was all in my head, why do I constantly have diahhrea, why do I get those horrific sores on my face, and why do I put myself through all of this? I'm completely at loss here. I absolutely hate being sick, and different, and expensive. I don't throw up nearly ever morning on purpose, I sure as heck don't weigh only 83 pounds on purpose, and I definitely do not cause myself to have constant stomach pain on purpose.

I think he just doesn't want to admit that he has no earthly idea whats wrong with me, but I really don't know anymore. I mean, I can't exactly explain why my body looks normal and tests normal but isn't normal either. It makes no sense.

What hurt me most though is that I'm pretty sure my dad agrees with the doctor. He pretty much told my mom we aren't spending any more money or tests or doctors on me and that I need to either snap out of it or deal with it. Since he suffers migraines and occasional stomach problems I guess he figures I should just be able to suck it up too without help...and I really feel bad for having put so much financial stress on him, but I can't. I realize that I'm fairly healthy compared to a lot of kids, and I'm not on my death bed, but that doesn't mean I'm healthy. That doesn't mean I'm making this up for attention of all things. I'm not like that....and I would have liked to think he knew better than to think I was.

I'm sorry, this turned out as a rant. I'm just fuming right now. Feel free to knock some sense it to me if I'm thinking off color here.
    08-22-2013, 07:19 PM
Procedure wasn't a loss, now you know you are producing to much bile. Time to fire up google and start looking at what causes to much bile production to see if any of those match your symptoms.
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    08-22-2013, 07:41 PM
I agree with Darrin on that, at least you know one more thing that it's not, so that means there's one less thing that it could be.

What I've learnt lately is that a lot of doctors (not all, i'm not going to put every single doctor in the same box) go by the textbooks, if it's not black and white then it doesn't exist in their mind.

Feel free to rant away though, I completely understand your frustration, it's not fun and you just want answers.

Endiku, they bought up the possibility of me being anorexic as well, and bolemic.... But yet on the BMI calculator I'm still overweight(I love food, just can't eat at the moment), and I have a phobia of vomiting so I'm not sure how they pulled that one up.

How does your mum feel? Dads don't always understand (again, not putting them all in the same box here) my dad, he rants at me for everything, whether it's to do with me or not. It's all in my head he says, if I just do this then it will get better he says. As hard as it is to believe, he's actually worried and extremely frustrated with the doctors. Your dad may not know what to say or how to deal with it, he may even be at such a complete loss that he's unknowingly turning himself towards the idea that the doctors may be right, even though in his heart he probably does realise there is something going on with his daughter that the doctors just can't figure out.

How well does your mum do in communicating with you? If your able to, I would really really suggest having a heart to heart with her (again, if you have already) explain that you feel bad about the financial situation, and that you wish the doctors would find an answer, and that maybe it's time to go to that naturopath doctor or colour therapist instead of wasting money at a conventional doctors where you are just going in circles.

I know it's hard, I had to drop my course yesterday and that hurt a lot. I love that course, I was having so much fun and I don't want to quit, but I can't get off the couch without either collapsing on the floor or needing to sit back down.
PM me if you need to, I always seem to be online these days, since I can't really get off the couch and all
    08-22-2013, 07:53 PM
Teen Forum Moderator
Oh Holly, sounds like you have it worse than I do! I'm sorry, feeling that bad must be terrible. I'm lucky that even with as little as I eat (probably 700-800 calories a day if I can keep it down) I'm not terribly weak or ghastly thin...I must have a slow metabolism. I really hope they find answers for you too :(

My mom is great about all of this. She believes me when I tell her there's something wrong with my body, and she'd probably let me go to a different kind of doctor if it were up to her, but alas its my dad's decision since he's the only one working, and if he doesn't want me to go, she won't go against him. I can respect that, of course, but I can't help but feel a little desperate sometimes. Mom is the one who has pushed the doctors to do as much as they have, and while she does get frustrated sometimes when I refuse food or throw it back up, she knows it isn't anorexia. I'm not depressed and I absolutely do not think I'm fat...I'm just getting tired of no answers, just like her.

My dad isn't a bad guy, really. I didn't mean to make him sound that way. He makes poor financial decisions (and thus me putting us in more debt really strains him I think) and doesn't deal with emotion whatsoever, but I know he does love me even if he doesn't believe I'm really all that sick. He's said more than one hurtful things to me about being sick, namely at times when I've had to go into the ER for my migraines or something because it costs a LOT for me to go, but I don't think he usually means them. He just never learned how to empathise. He was raised by his dad after his mom abandoned them and has only brothers, so he never needed emotion or thoughtfulness I guess. He works hard to take care of us though. I only wish this WAS in my imagination and I could just get rid of it like he wants me to, or suck it up and deal with it. But I honestly don't know how to.
    08-22-2013, 08:10 PM
I don't think I have it any worse than you do, we just have two different sets of stuff going on, plus you've had yours for a lot longer than I have, I think mines been about 2 months now maybe. I hope they do too, I'll probably end up going to a different hospital I would say.

Oh that's not so great, my dads the only one working too, but my mum still manages to get me to wherever I need to go so I'm lucky on that front.

I'm going to go to a rather weird suggestion here, but I remember a friend of mine doing it years ago.. Could you run a raffle to help get yourself to a doctors? I had a friend who set up a raffle, $2 a ticket and had about 100 tickets I think it was, the winner kept half of the full amount, so $100, and he kept the other $100 to help him pay for a few things when he was desperate.

I don't think you made your dad sound like a bad guy, he just sounds to me how my dad is so I understand that.
The reason you don't know how to is because I don't think it's physically possible to suck it up and deal with it since it's not in your head.. It's not like you've gone and said to your body "hey this will be fun, you should produce HEAPS of bile and coat my insides with it, woohoo!"
    08-22-2013, 10:42 PM
Super Moderator
I've forgotten already, have you tried eliminating gluten entirely from your diet for a while, just to see? I think I remember you saying that tests have been done that claimed you weren't a glutie, but the gluten tests are notoriously faulty.

I've probbbbbably mentioned this to you before but my anti-gluten symptoms fit only TWO of the symptoms listed anywhere on the internets. However, I'm extremely sensitive to it - last night I had my first 'episode' in quite a while...from having someone touch their gluten-y butter knife to some of my GF bread without my knowledge. It was just that simple and I was in the bathroom all night [me and you!! Haha ].

And, after going gluten free, things started changing about my body that I had absolutely no idea were actually issues - my feet that used to look like squares with toes attached suddenly look like feet, I lost a ton of weight, my lady-time cramps all but disappeared, and on...weird stuff!

Anyway, it only took a week of mostly zero gluten [I ate things that had "hidden" gluten in them, being a no0b to GF] for me to feel like a miracle had taken place in my body. And after feeling that way, there was NO way I was going back to gluten! Haha

Also, I'm really sorry your dr is a jerk. I know how that goes. My MD thought I was making it alllll up when I told him about my issues. He literally said "well, some people are like that!"
Um, yeah. Maybe so but I sure as heck don't have to live like that!! And then I went GF. Haha

Praying for you, dear. <3
    08-22-2013, 11:15 PM
I feel ya Endiku. I feel like my specialists are running me around in circles.

I went to my primary doctor a few days ago to discuss the possibility of PCOS, she told me that's my Endos place to figure out. I went to my Endocrinologist yesterday, and told her my symptoms including oily hair/skin, acne.. "you should probably go to a dermatologist" my migranes "when do you see the neurologist again?" ovary pain "Do you have a GYN?"

Grr! And I wish I hadn't had my gallbladder taken out either. Anything I eat makes me sick.

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    08-23-2013, 12:13 PM
Teen Forum Moderator
I haven't, Wallaby, mostly because my parents have thus far been unwilling to buy gluten free foods (because they're more expensive) and definitely don't want to have to change their own diets at all to compensate. I'm really thinking about trying it though, even if I have to buy the food and fix my meals myself xD I know how to cook well, and cook for my family every other evening anyways- so maybe I can talk them into letting me try it. How long do you think I'd need to be gluten free to say "Ok, this isn't doing anything' or 'YAY, I'm cured!'? I could totally go for less 'lady time' cramping if nothing!

Dunn, I think you and I need to become doctors. Ones that are willing to work as teams to diagnose things ;)
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    08-23-2013, 12:49 PM
Originally Posted by Endiku    
I think I was still supposed to be asleep but I overheard my doctor basically telling my parents that he sees no real reason for me to be in pain or to not be eating, and that he thinks I might be doing this for attention/because I have
A form of hypochondria or something. He said maybe I'm anorexic, and I really ought to see a psychiatrist, especially since my mom was anorexic at my age.

I think he just doesn't want to admit that he has no earthly idea whats wrong with me, but I really don't know anymore. I mean, I can't exactly explain why my body looks normal and tests normal but isn't normal either. It makes no sense.
This^^ is what the doctor told my parents when he couldn't figure out what was wrong with my brother. He said everything was in his head and he was making it all up. Grrrrrrrrr!

I sure hope you can beat this thing, I can remember there was a time when my brother could only eat two foods, applesauce and lemon juice, it was not fun for him when the rest of the family could eat so many other things.

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