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Author Topic: Crohns?
hs123
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Okay, I'm really really worried I might have Crohns disease... A few months ago, my doctor said he thought it was a possibility, and he wanted to do testing, but my parents couldn't schedule it, and we couldn't go to the hospital we usually use, and the other ones wouldn't take our insurance... So i never got tested.
But before I didn't have so many syptoms... and it subsided, or just wasn't so bad for awhile, but now it's come back and it's worse...
The doctor said if it keeps getting worse it can get really dangerous, but I don't know what to do, and I don't even know if I have it.

I ran out of a social gathering because I had to speed home to go to the bathroom, and I have cramping and stomach pain, and I've lost a lot of weight in the past few month or so... i've lost like, 25 pounds and I was on a normal diet-- I mean I didn't eat junk food, but I wasn't starving myself or anything.
My mom says I should go to my regular doctor tomorrow (not the GI who said I might have crohns) but he's just gonna do the same tests he did originally and then tell me to see the other doctor!
I don't know what to do and I'm really worried about it! I know you can't actually make a diagnosis, but does anyone know about Crohns or like, intestinal or digestive things? And what should I do? doctor says if things get worse I should go to the emergency room, but I don't want to wait till things get worse! THey're already bad.
Oh and I took anti-diarhea medicine, but then the doctor said I really shoudn't have done that (how was I supposed to know?) and that it could make it a lot worse!

Can someone just tell me what I should do? Should I go to the ER? Or should I just wait and see my doctor tomorrow? Or should I just chalk it up to a stomach virus or something? I don't know what to do about it

[ 01-13-2008, 11:18 PM: Message edited by: hs123 ]

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eryn_smiles
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Sounds like you're really worried about this, hs123. The best way to ease your worries is to see your regular doctor. Ask him or her all the questions you have and talk about your weight loss.

Sure if the pain or diarrhoea is really severe or youre bleeding from your bowel, etc go to the emergency room. Otherwise, this could probably wait until tomorrow.

Meanwhile, here's a fact sheet about Crohn's (which you may not even have!)
http://www.patient.co.uk/showdoc/23068969/

Take care

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hs123
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No offense, but that did not ease my worries--- because I have most of those symptoms! And even some of the secondary ones listed on there!

My stomach hurts on the lower right hand side, and I know it's not apendicitis, because I've had my apendix removed.

I had some of those tests done when I was younger, because I've had gastric problems since I was little, so I don't know if they would've noticed it then or not?
I've had extremely bad joint pain in the past few months, and my eye got really swollen too...
it also doesnt calm me down that I happen to be of the denomination of people who most frequently get it

Does anyone know any other things this could possibly be?

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Leabug
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hs123, I have Crohn's. (There are a couple of us around here actually!) There are a few things with symptoms similar to Crohn's, so it's really important to get testing done (and not all of it can be done by your normal doctor- such as CT scans, colonoscopies, etc) before assuming that's what you have.

There's really no need to freak out if you do have Crohn's- it's certainly something you can live with. It does certainly sound as though you have some of the symptoms, though.

By all means, you can visit your family doctor, however it may be best to just go straight to see a GI as soon as you can. Crohn's is a tricky thing to diagnose and you do need a doctor who has specific knowledge of inflammatory bowel disease. Unless you're having severe pain or are passing a lot of blood, you probably don't need to go to the ER.

One thing that is REALLY really useful to doctors diagnosing bowel issues, though? Write a diary. Write down your family history, everything you can think of that may indicate a bowel disorder. Then, keep track of your daily activity- log what you eat, and when you poop (and what it looks like). If you have any other symptoms, like your joint pain or eye trouble, log that too. It's very useful for them to have your history tracked in this way.

If you have more questions, by all means, toss them our way- I know what you're going through, and how scary it can be (check some of my past threads, and you'll see my own confusion during the diagnostic process). I'd be glad to help you out however I can.

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Lea

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September
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Yeah, I'm the other Volunteer around here with Crohn's, and I'll second all of what Lea said.

Can you go back to the doctor who originally suggested Crohn's? If that's not a possibility, just print out some information you can get about Crohn's, start keeping track of the symptoms you have (as Lea suggested) and take that to your other doctor. You do have a lot of the symptoms, so if a doctor has it all spelled out like that for them, they'll really have to either schedule testing for you, or refer you to a specialist who will do the testing.

And you know, you'll really want to keep on this and insist on getting seen by doctors and having those tests run, because Crohn's is notoriously difficult to diagnose. My doctors started to suspect Crohn's when I was around 8 or 9, and I was finally diagnosed at 14.

(Just as a side note: Crohn's is one of those diseases that can really flare up when you're going through a stressful time. And lord knows you've been having a tough time lately, so it's really no surprise your symptoms are getting worse. You'll want to think about mentionting that at your appointment, as well.)

And if you have any more questions and concerns, do come back to talk about it. I'll be glad to help.

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Johanna
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defied
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if you can, also get tested for Celiac disease. or mention it to your doctor. i have it & it has very similar symptoms to crohns. when they were trying to figure out what i had, they suspected crohns but it turned out to be Celiac. good luck!
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hs123
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I know I don't have Celiac disease, but I'm glutton sensitive (meaning I get itchy and sometimes a rash--- but i rarely get a rash, so i don't usually avoid things with glutton, i just try not to eat a lot of it)

I'm gonna try to see my regular doctor today. THe GI I went to is out of town for like, a month, and the doctor on call said she has a full patient load and can't see me--- There aren't many good GI doctors here, and he's the only one who would take our insurance.

It's just that, I have exams this week, and its a really bad time to not be feeling well--- And there's a strict rule that we can't leave the exam room to go to the bathroom, so I'm gonna try to get a note from my doctor, but that's gonna suck.

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Leabug
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Gluten sensitivity can sometimes develop into full-blown Celiac disease, too, so for sure mention that you'd like to be tested again for it. (And it does have similar symptoms to Crohn's, so definedhearts is right in saying that it's a possibility and should get checked out.)

If all you can do is see your regular doctor, that's okay- they should be able to run some tests at least, just not the more sophisticated ones such as colonoscopies etc. If they give you a diagnosis, though, I'd still get a second opinion from a GI. Can you at least book an appointment with the GI that's out of town for when he/she returns?

I totally get how it sucks during exams- I went through the exact same thing and it was pretty rough. In terms of the diarrhea, it should be okay for you to take an over-the-counter anti-diarrheal medicine such as Imodium. Just make sure that you don't take a ton of it, because when you have a bowel issue, constipation isn't any good either. It may also help if you avoid milk, and since you know you have a gluten sensitivity, avoid gluten as best you can, too. Get that doctor's note, for sure. I'd imagine they may have someone accompany you to the bathroom, which does kinda suck, but when you gotta go, you gotta go, right?

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Lea

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hs123
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I went to my regular doctor, and he said he can't really do anything because he doesn't do the tests I need--- and he sent me to get a lot of bloodwork...

I got a doctor's note to go to the bathroom but they still wouldn't let me go- because there was only one proctor and she couldn't watch everyone and come to the bathroom with me at the same time...--- so I had to sit there and take more imodium... I've taken so much imodium but it doesn't help a lot... it sometimes helps with the cramps but it doesn't help with the diarhea much... and i take the maximum amount


My mom scheduled testing but it's like 2 months off--- and my dad will probably cancel it, because that's what usually happens--- because he thinks we don't have money to pay for it and we havent met our deductable cuz it's only the beginning of the year--- (apparently the tests were scheduled for awhile ago, and he canceled them, so they didn't call to confirm it so i forgot i even scheduled them)
And my teachers think im faking sick to get out of things, because I don't wanna tell them, "well, I have really bad diarhea if you must know"

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September
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Can you sit down with your dad and explain to him what's going on and that you really need to get the proper diagnosis so you can get treated? If you're tight for money it can be really difficult to get the medical care that you need, but think of it this way: seeing a GI specialist and getting some diagnostic testing done will come a lot cheaper than a trip to the ER and emergency surgery if the symptoms go unchecked and the Crohn's (if that's what you've got) flares up.

As for your troubles at school, can you just take your teacher aside and explain the situation to them? I know how embarrassing it can be, but sometimes it's just necessary. When I started high school, my mother went to the office of my school and explained my condition, and as much as I hated her for that at the time, I ended up being really greatful that someone at the school knew what was going on and I didn't always have to come up with excuses (it even turned out that one of my teachers had Crohn's, too, and it was really neat to know someone out there who had this condition and was living a perfectly normal life).

I'm really sorry you're going through this. It can be so hard to get someone to listen and take you seriously on this, and I hope that you find the right doctor and get your diagnosis soon.

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Johanna
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-Firefly-
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(I know I don't have any personal experience with this, but I just thought of something that may help with talking to teachers. What if, instead of coming right out and saying you have diarrhea, you say something like "I think I may have Crohn's, and I'm trying to see a specialist about it, but in the meantime, I have some digestive issues, and I need to be able to go to the washroom when I want/need" or something like that. It may help them understand better. Just a thought. Good luck!)

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Vero
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Leabug
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I just wanted to add some more encouragement about talking to teachers- I'm in the midst of a flare-up, and have to let my university profs know at the beginning of each new semester that I may be missing class and that I'm registered with the university's disability program (they send note-takers to your classes when you're ill, it's pretty cool). It may seem scary, but you'd be surprised how often the teachers are understanding and sympathetic. It's really best, too, if you can let them know BEFORE it becomes a problem- for example, that exam may have gone better had you let them know before it happened, that way they may have been able to get two people there to supervise.

The other thing you could do, if you're too embarrased to talk about it, is write a letter.

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Lea

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ErinK
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As a teacher, I always want to know if my students have health issues that could impact their participation in my class. A letter or an email is fine, too, if a person doesn't want to talk to me directly about it. But if I don't know, I can't help. So tell me. [Smile]
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hs123
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Well, the diarhea has stopped--- maybe because I finally ODed on Imodium---
I did email my principal- she was not very receptive about the issue.
Thank god I'm gonna be graduating soon and I've already been accepted to college--- so grades dont matter as much--
And thanks so much Lea for telling me about the services at your university, because I checked at the one I'm going to, and they also have a lot of services for people with chronic illneses and disabilities--- I didnt realize that a chronic illness could be under Students with Disabilities, and I never would have thought to look, so thanks...
Also, I'll finally be in a big city, and the university has amazing healthcare...It's an extremely large university...

Anyways, I still feel a little under the weather-

I spoke with one of my teachers about it last night, and she was not kind at all, to say the least. Luckily, I've made good grades all year, so I can fail my exams and still make Bs, but that's not something I want to happen.

But thanks...
Also, I have to have this barium swallow test--- I had one when I was younger so I hardly remember, but has anyone had it, can you tell me what it's like?
They said they might also do an endoscopy after that--- again I had it when I was younger but I don't remember, so I mean, I know what it is, but I can't remember what it was like--- ANyone?

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September
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I've done the barium test a few times, and it's not too terrible. Basically, it's just a fancy x-ray. Too make your intestines more visible, you drink the barium beforehand - it sort of lights up the parts of your intestines it's passing through and the doctors track the progress of the barium through your intestines by doing x-rays at intervals. The yuck-facotor here really is the barium. No matter which flavour you pick, it'll taste pretty gross. You've got about half an hour to drink it, then you need to wait a little and then you get to start doing the x-rays. And that's really all there is to it.

With the endsoscopy, it really depens whether it's upper or lower GI - I've only had a lower GI done, which is then a colonoscopy. That I have also done a few times (it's pretty standard not only for diagnostics but will also be part of you on-going testing later on to see whether there are any infections gong on) and though it's not the most fun experience, it's doable. With both types of endoscopy, you'll have to fast the previous day. With a colonoscopy, the fasting is supplemented with laxatives, to make sure your colon is empty the next day. And for the colonoscopy itself, you'll get some valium so you really don't feel anything at all. It's not painful, and when I'm coherent enough to pay attention, I have the nurse explain to me what we're seeing on the screen.

Hope all goes well!

[ 01-16-2008, 01:12 AM: Message edited by: September ]

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Johanna
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-Lauren-
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The barium I took tasted like really flat, gritty 7up. Not terrible, but definitely not pleasant, especially for the amount I had to drink. I was throwing up from severe trauma, so I had to drink a ton.

Best advice? Pinch your nose and chug, and hold it down for all you're worth or they'll just make you drink more. You might see if they can allow you to have a hard candy or something afterwards to get rid of the aftertaste. Good luck!

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KittenGoddess
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I'm sorry your principal and teacher reacted the way they did. That's really out of hand. Unfortunately, sometimes teachers hear excuse after excuse from students (not you particularly, but I just mean in general) and it piles up over the years and causes them to be a bit jaded when somebody comes with a real problem. Can you get a note from your doctor? If so, then that's the thing to do. By having the documentation from your doctor, they will know that this is a legit condition (not just something that somebody is making up).

You'll also find things are very different once you go to college. Most professors/instructors (myself included) are very sympathetic to students with health issues. I've also interacted with the disabilities support office (not as a student, but as an instructor several times) and have found them wonderful to work with! So once you get there (or preferably even before you get there), don't hesitate to contact them and get the paperwork done to get any accommodations that you need.

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Sarah Liz

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