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Crohns Disease and strange symptoms of...what?

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    07-04-2013, 08:41 PM
You sound similar to me, minus the mouth ulcers and gallbladder issuses.

Mine is mainly psychological though, with some immune issues.

My parents don't believe in modern day medicine, and thus I've grown up to fear it or feel it isn't necessary.

I used to be able to handle anything but then I got sick in 2011 and since then I have been a fragil flower that is always sick or cold. I get headaches frequently, fever, colds, I've lost about 70lbs.. but I believe that is due to the fact my parents said I was "chubby" for a straight year so I began to kind of skip meals and not eat very well. I'd exercise my buns off, so I looked great but felt like crap.

I found that making sure I eat right has really helped.

I feel if you find a diet (not a diet as in weight loss but what you eat and what you don't) that adequately gives you your basic necessities then whatever else you experience will indicate what needs attention. Such as if you still experince frequent issues like fever or headache then you know there is something influencing those symptoms.
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    07-04-2013, 08:58 PM
Teen Forum Moderator
As far as I know I'm going under general anesthesia because they're doing, as someone else said, a 'top and tail' with me too, which means I'll be having an endoscopy at the same time. I will also be having small biopsies done in multiple areas so I do NOT want to be awake! XD

I'm sure that it is at least partially due to stress. I'm never not busy, and I seem to be incapable of doing nothing. For example, I planned to take this summer and my senior year easier; but without even realizing it I let myself get suckered into agreeing to help run 3 weeks of summer camp. For my senior year, doing 'just four credits' of the basics (I finished all of my electives last year in hopes of an easy year this year) I got talked into dual credit math, my toughest subject, as well as dual credit English + a normal semester of British Lit because I'm still missing that. My mom and the college advisor mean well, but I'm already overwhelmed and it hasn't even started. At the same time though I don't want to miss out on this chance to get nearly free college hours.

I'm also incapable of shutting my brain 'off.' I'm ALWAYS worrying, always plotting, always thinking. I try to stop thinking but it just doesn't work. That sounds aweful, I know xD I try not to worry, but I And that takes a huge toll on my health. I have more GERD when I'm stressed, and I stress easily. I've gotten better about handling my stress, but I know I'm still terrible at it. I hide my stress from my family too because I already am such a bother to my parents with all of my health problems, and they've always depended on me for not being the problem child (my sister has severe depression and has tried committing suicide multiple times, one of those times being VERY recent) so I hate to be like 'oh by the way guys, I'm super stressed to sooo...' to add to THEIR stress. The only time I really don't stress is when I'm with Sour or Kenzie with no other people around, such as when I'm feeding them. It makes me feel calmer.

It is strange that my mom isn't willing to get another doctor, but there isn't much I can do about it. I've been hinting that I feel like maybe its time to 'broaden our horizons' such as trying to find one of those natural doctors someone else mentioned, so maybe eventually she'll let me switch.

I feel so terrible though, because I know I cost my parents a LOT of money. We have so many hospital bills and most of them are because of me. And that causes me stress as well.

Sometimes I feel old xD like, really old. I see the entire world in a TOTALLY different way than all of my friends (or not friends) that are my age do, and it makes me feel like somewhat of an oddity. I worry about finances, the lives of neglected horses, bosses, family, and making things better for other people. Yet I just sat in the car for an hour and a half with a girl who is my age who ranted the entire time about how she wants her mom to just leave her alone and quit getting her business, and how its so unfair that she has to do this or that chore for a $100 weekly allowance and such. I almost wanted to puke when I listened to her because instead of sympathizing with her like the other girls did, I felt like crying for her poor mom who is just trying to be a mom.

I think in some ways all of my health and learning problems have made me who I am though. I LOVE my family, especially my mom. I can't even fathom how hard it must to be to raise and care for us. Sure I get mad at her sometimes and she gets mad at me, but I'd never call her the names that girl called her mom, and I'd never want her just 'out of my life' because I'm 17 years old. I've relied on her a lot to help me through all of my struggles. So maybe I shouldn't be so sad after all about my health problems. I'd take physical pain and some stress with a great family to back me up over the 'perfect' rich life but no family love any day.

OHHHKAY. Just realized how off topic I got. I'll be quiet now xD
Wallaby likes this.
    07-04-2013, 09:24 PM
Sounds like you have to learn how to say, "No, sorry, I can't do that now. Ask me again in 6 months." There will always be something in the future. If it's not exactly what is there now, it will be different. That's OK. No sense in wearing yourself out resulting in not having a future. Enjoy living now. Live to learn, live to enjoy, live to live. DON'T LIVE TO WORK and wear yourself out. Been there, done that. It's NOT worth it.

As for your brain never shutting down, although that doesn't happen to me, it does happen to someone I love and it certainly is debilitating. Just once, I managed to get him into a situation where he was actually, admittedly <gasp> bored. It did him soooo much good. We went out of town, rural location, and then as it worked out, everyone except he left the campsite and I somehow had his cell phone. He had no vehicle, no phone, no tablet, nothing to read, no bush to walk in, no stores nearby, no other people really. And he was like this for about 6 hours. It took him about 3 hours to get to boredom and the remaining 3 hours were like an entire weekend of holiday for him. Amazing.

Maybe try Yoga? Give up something that you are doing for someone else or give up something that can wait. Yes, there IS something that you can give up. Replace it with something for your wellness. Not just something you enjoy, but something to benefit your soul. And something that doesn't have firm obligations. So, if you feel crappy one day and don't want to go, it's perfectly okay to stay at home and eat ice cream on the couch for those one or two hours instead. Regardless of if you go or not, the time is still 100% only for you. No chores, no calls, no research, nothing. Pick flowers or something.

And, I'm slapping your wrist right now. NEVER FEEL BAD ABOUT WHAT YOUR PARENTS DO FOR YOU. Feel awesome that they are finding ways to help and that they have the resources to do it, plus the willpower to continue to search for solutions. It is NO ONE'S FAULT that you are who you are. It just is. I hear that you love, respect and are grateful for what your parents do. Your parents love you too and I'm sure that they don't for one minute complain that if it wasn't for you they wouldn't be in this mess. I have two children and both have or have had various long term issues that have depleted funds, depleted emotions, or depleted my sanity. I am a very selfish person. Yet it has never, ever crossed my mind (before today) to even possibly think that, "Well, if only he didn't have this problem, my life would be easier." It never occurred to me at all that a parent could possibly think that. From what you have said about your parents, I'm confident that they are on the same thought-train.

As for peers of your age-group: I can't see you spending much time at all with the average teen girl or guy. You are indeed old in many ways. Most teens won't have any concept of your life. That's okay. They can do their teen thing now. Then they'll have to grow up all of a sudden one day. At which point, you will be an official, independent adult, and you can revert to teenhood! LOL
Endiku likes this.
    07-04-2013, 09:25 PM
Originally Posted by Endiku    

Sometimes I feel old xD like, really old. I see the entire world in a TOTALLY different way than all of my friends (or not friends) that are my age do, and it makes me feel like somewhat of an oddity. I worry about finances, the lives of neglected horses, bosses, family, and making things better for other people. Yet I just sat in the car for an hour and a half with a girl who is my age who ranted the entire time about how she wants her mom to just leave her alone and quit getting her business, and how its so unfair that she has to do this or that chore for a $100 weekly allowance and such. I almost wanted to puke when I listened to her because instead of sympathizing with her like the other girls did, I felt like crying for her poor mom who is just trying to be a mom.
Girl I'm the same way.

Let me tell you a quick little story about just how different.

I was on an airplane from New Zealand to Hawaii. I took my seat by the window and was soon joined by a girl around me age (under 21)

The plane takes off and the drink cart comes around. I ask for some iced tea and she asks for beer. And as the plane ride (9 hours) continues she asks for more beer.. and gets really drunk.

Then the food comes and I pick the beef and she picks and chicken fingers. Then it's time for a movie and I pick the new MIB and she picks Snow White.

She then proceeds to blast music via her earbuds that was so loud I could hear it, and passed out ON MY CHEST to which I was too polite to do anything.

It was so crazy how different we were. Even the way we were dressed!
    07-04-2013, 09:35 PM
Green Broke
I wish I could wave a magic wand, someone your age shouldnt even know what any of those words mean. I truely wish the best for you and hope you find a DR House, that figures everything out.
NorthernMama and Tracer like this.
    07-05-2013, 01:02 AM
Somac is actually for heartburn and acid reflux, but I've found it also settles my stomach really well.

I second taking up yoga, as well as meditation. I have trouble switching off, too, so I will sit/lie and just think of black. I think about it until that's all I'm thinking about, and that I almost lose awareness of where I am. If you play some soft instrumental music, it will help too. You will find that, when you pull yourself out of it, you will feel so refreshed. I compare the feeling to stepping out of a cold shower on a stinking hot day. You could try some aromatherapy too - lavender works especially well for me when I'm tense.

I also asked my parents about the anemia thing, and yes, she gets very anemic. The fact that you are fine with high fibre foods is interesting though, as I don't think I've heard of a case of Crohns without having that problem.

As for feeling bad about the money your parents are spending on you - That's what parents do! I try to pay for all repairs, services, insurance etc on my car, but if I will be left short, my parents insist on paying at least half, even if they can't really afford it. There have been a few times when I have had to loan money to them for bills, and the guilt on my mothers face is so strong that I know how hard it is for them to not be able to support me at that point in time.
    07-05-2013, 01:32 AM
Green Broke
Originally Posted by NorthernMama    
Someone posted that (s)he was under general anaesthesia for a colonoscopy. I don't know why that would be the case. It is really considered non-invasive as the examine involves an already existing orifice / pathway. No need for any anaesthetic at all, local or general.

You obviously don't have an illness affecting your colon. If you did, you would 100% understand why patients are routinely given anesthesia of some variety during the procedure.

I had a sigmoidoscopy (same as a colonoscopy but limited to the lower region of the colon, nowhere near as invasive) sans pain meds and let me tell you, it was THE most painful thing I have ever had done. I had 3 nurses literally holding me down and 2 quit and walked out mid-procedure because the Dr refused to knock me out or give me anything he kept insisting that I just needed more pillows! I dunno wth he thought a 50th pillow was going to do for me! Hubby could hear me screaming halfway across the hospital, he about lost it since I've given birth to 2 kids and certainly wasn't screaming in agony during their birth and that was with no pain meds then either. Jamming something up into an inflamed, infected area is without a doubt, extremely painful.

I immediately found a new Gastroenterologist following that fiasco and he was horrified that anyone would literally torture a patient. Due to moves, insurance changes and so forth, I've now seen probably 15 different Gastroenterologists in the past 25+ years and none of them would even consider doing a colonoscopy on an awake patient. I ask upfront with each new Dr if they plan on knocking me out and the response is always "Of course, why wouldn't I?".
    07-05-2013, 03:16 AM
My 8 year old daughter has Crohn's. She was sick nearly from birth and was diagnosed with ulcerative colitis at 16 months but later the dx was changed to Crohn's. She had a stroke at age two due to being on sulfasalazine without folate supplementation. She fully recovered but we had a few very scary years with feeding tubes, etc.

She's been in remission for a few years. Stress and anxiety definitely do seem to affect her symptoms. We have discovered that certain foods have an effect as well, especially if she's having a break-through flare.

Anyway, the testing isn't difficult to recover from at all and you'll get some much needed answers. I'd suggest keeping a food/symptom diary if you don't already. Hang in there! And don't feel guilty!
    07-05-2013, 07:27 PM
Teen Forum Moderator
Yeah, it is strange that high fibre things don't hurt much. They do cause constipation if I eat more than a little, but I figured that was kind of normal since my mom has the same issue.

I would like to try yoga or something similar, but I'm not sure where. I don't have my own room and my home is a mad house of children and animals that are NEVER quiet and I get agitated when it is too loud. I guess I'm just not a huge people person, which sounds awful (HEH....just learned today that I've been spelling awful wrong. Whoopsies.) but its true. I LOVE the suggestion of going and picking flowers though. One of my hobbies that I stopped due to lack of time with collecting, identifying, and pressing flowers. I have dried flowers all over my bedroom walls and I adore them. Maybe I'll start doing that. Finding flowers is always a stress free (unless I grab something thorny! LOL) thing for me and I miss it a lot. Great idea. I also love to paint, but again I just haven't had time. Maybe I'll set aside an hour every week to do one of those things. It sounds nice.

Tracer, I'll ask about Somac then! Its worth a try. Aromatherapy probably wouldn't work well though because I'm ultrasensitive to scents and anything strong triggers a headache and eye pain for me, for some reason. I can't stand when people wear perfumes or cologne, or even strongly scented shampoos. Cinnamon scent actuall even makes me vomit. Strange that it just so happens to be something I'm allergic to as well!

Joe, thank you very much. I sure hope so too.

Lilypoo- your poor daughter! Give her a hug for me. She sounds like such a fighter. I do have a food/symptom diary as well as a pain log, and I've been keeping it for about 9 months now. Thanks!
    07-05-2013, 10:14 PM
Wow - you are a mess... Out of curiosity, have you and/or your parents checked into the possibility of hooking up with the UT Medical School there in Houston? Obviously you have an underlying immune disorder, and those can really get complicated and convoluted with all kinds of secondary and tertiary disorders associated with them. I don't know about UTHealth, but many medical schools are doing a lot of research on immune disorders. You are certainly an overachiever considering all the issues you have...

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