02-20-2010, 08:43 PM   #1
CodeBlue2012
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I'm Emily. I am a 16 year old female who has been having some symptoms since I was about 13. My symptoms include: Heartburn, indigestion (usually pretty bad), frequent constipation, hard/mucous covered stools, some minor bleeding on occasion, diarrhea, but very seldom, nausea when eating certain foods, and joint pain (this is also related to my TMJ disorder.) Also, I have periods of time where I can eat almost anything, and others where I can eat hardly anything and have to eat foods like Jell-O, yogurt, and etc. I have been getting tests done for a year, now. I recently got a CT scan, revealing that my organs, and etc look perfect, except for my small intestines. They saw some thickening, and I have a jejunal loop, also. My father is kind of a mystery case, with Crohn's and Celiac disease, and he was diagnosed with Non-Hodgkins Anaplastic large cell lymphoma on January 5th of this year... so, he's had his share of problems as well, which makes me worry, that I might also have crohn's...What do you think?

Thanks!
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02-20-2010, 09:05 PM   #2
Peaches
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CodeBlue! I'm sorry you are experiencing all this yucky stuff! I'm also sorry to hear about your dad None of us on here are doctors (or at least I think none of us are LOL!) so we certainly couldn't give any kind of diagnosis. Sometimes it takes a while for the docs to figure out when symptoms are Crohn's and when they are not. Has your doctor recommended trying to go gluten/wheat free for a period of time to see if that gives you any changes in your symptoms?
02-20-2010, 09:24 PM   #3
Tan
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Weclome to the forum Codeblue... Im sorry you are going thru such a rough time at the moment. Your symptoms do sound related to IBD but again like peaches says none of us our doctors and can only go off of our own experiences. I too get bad heartburn & indigestion but have that under control with somac however I still do get it sometimes out of the blue.. not a nice feeling thats forsure. I also get more constipation rather the diarrhea but I seem to yo-yo between the two.. I have been lucky and not had the bleeding yet but do get nausea, joint pain and lack of appetite. I hope you find some answers soon from the doctors and you start to feel better soon its such a horrible thing to have to deal with at such a young age.
Im sorry to hear about your dad I hope things work out for you guys.
02-20-2010, 09:42 PM   #4
CodeBlue2012
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Thanks, you two. My first gastroenterologist appt is march 30, so, I haven't really got to talk to a specialist about it, only a family practitioner. I wasn't really looking for a diagnosis on here, just asking you if it sounds like IBD, since you all have had experiences, but, once again. thank you! Currently, I am working on a diet plan, simply going by foods I can and cannot eat. It's really hard to eat foods that don't bother me at school, because their foods are terrible, so.. I definitely have to start packing or something.
02-20-2010, 09:45 PM   #5
Peaches
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That must be difficult! Well..keep in touch with us and let us know how the appointments go for you - and look around the forum. You may find some answers to different questions you have that may be helpful. Good luck!!
02-20-2010, 09:48 PM   #6
CodeBlue2012
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Yep, it does get a bit difficult at times. =(. I'll keep in touch! I was looking around the food/diet section, Some really helpful things on there, especially for creating a diet plan.
02-20-2010, 10:34 PM   #7
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Hi Codeblue, I had the loop in the beginning of my dx 17 years ago, and my intestines were a mess, and apparently microscopically leaking in the appendix area. Some doctors think it is not genetic but I think they are wrong too much proof it, just in my family alone. It is very hard to diagnose, just myself a CT scan to check my right lower side where my Crohns is they missed the left side of my large colon which is in the process of being tested from the biopsy and confirmation of Crohns or Crohn's colitis, and that was only 3 weeks apart! A diet does help, lifestyle changes, and rest! Hope you dont have Crohns but if you do , this is the best place for support and experiences. You are always welcome!!!
02-21-2010, 05:02 AM   #8
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Hi CodeBlue and welcome to the forum. I, too, am sorry to hear about your dad and your condition. My dad also had Non Hodgkins and I have always had problems with the bleeding, hard constipation with sporadic bouts of D.

Not being a Dr. makes it hard to say a definate yes to CD but your symptoms do sound very, very, similar to mine when first diagnosed.

Good luck with your Dr's appointment and keep us updated as far as what they find.
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02-21-2010, 10:46 AM   #9
CodeBlue2012
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Pirate said:
Hi CodeBlue and welcome to the forum. I, too, am sorry to hear about your dad and your condition. My dad also had Non Hodgkins and I have always had problems with the bleeding, hard constipation with sporadic bouts of D.

Not being a Dr. makes it hard to say a definate yes to CD but your symptoms do sound very, very, similar to mine when first diagnosed.

Good luck with your Dr's appointment and keep us updated as far as what they find.
Thanks, Pirate. I'm sorry to hear about your father, as well. I can't wait to get this appointment over with, so I can get started on my "journey" of getting my problems worked out. Yes, I tend to struggle with the bouts of constipation, rather than Diarrhea..which is odd.
Funny signature, by the way! the POOP deck!
02-21-2010, 10:49 AM   #10
CodeBlue2012
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Jettalady said:
Hi Codeblue, I had the loop in the beginning of my dx 17 years ago, and my intestines were a mess, and apparently microscopically leaking in the appendix area. Some doctors think it is not genetic but I think they are wrong too much proof it, just in my family alone. It is very hard to diagnose, just myself a CT scan to check my right lower side where my Crohns is they missed the left side of my large colon which is in the process of being tested from the biopsy and confirmation of Crohns or Crohn's colitis, and that was only 3 weeks apart! A diet does help, lifestyle changes, and rest! Hope you dont have Crohns but if you do , this is the best place for support and experiences. You are always welcome!!!
I believe the loop is also genetic, because my dad has a jejunal loop, along with the hardening, my grandmother suffers from diverticulitis, and my dad's sisters and brother all have intestinal trouble as well..so, I'm pretty much doomed to have it. =[ I will definitely be visiting this forum often if I do have Crohn's.. it's a really good one.
Thank You.
02-21-2010, 04:15 PM   #11
Jennjenn
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Hi Welcome I hope your appointment goes well and I feel bad about your father.
02-21-2010, 07:29 PM   #12
farm
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Welcome! I'm sorry you have SO much going on.
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02-21-2010, 07:35 PM   #13
imisspopcorn
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CodeBlue...I hope your appointment goes well.
02-22-2010, 08:10 PM   #14
tamesis
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Welcome Emily!

I can completely empathise with a lot of what you are going through, i have been having a lot of trouble with many similar symptoms for months, and am struggling to get some sort of official diagnosis. My suggestion is to stick with it, and listen to your body....You know there is soemthing wrong, so keep on them until they find out what it is! Best of luck to you and your family, and i hope you can find some great support here, it's a great place.
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02-22-2010, 08:39 PM   #15
CodeBlue2012
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tamesis said:
Welcome Emily!

I can completely empathise with a lot of what you are going through, i have been having a lot of trouble with many similar symptoms for months, and am struggling to get some sort of official diagnosis. My suggestion is to stick with it, and listen to your body....You know there is soemthing wrong, so keep on them until they find out what it is! Best of luck to you and your family, and i hope you can find some great support here, it's a great place.
Thanks, Tamesis! I can't wait to just get this first appointment over with..because it is probably just a "first time consultation". Nothing real major in the diagnosing process.
02-22-2010, 08:40 PM   #16
CodeBlue2012
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imisspopcorn said:
CodeBlue...I hope your appointment goes well.
Thanks! =)
02-22-2010, 08:41 PM   #17
CodeBlue2012
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Jennjenn said:
Hi Welcome I hope your appointment goes well and I feel bad about your father.
Thanks, Jen. my dad's chemo is doing a great job! so, he's making progress!
02-22-2010, 08:42 PM   #18
CodeBlue2012
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farm said:
Welcome! I'm sorry you have SO much going on.
Thanks for the welcome post!
03-04-2010, 08:32 PM   #19
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Steve here 20 years old going on 21 on march 29th the day before your appointment. A somewhat cool coincidence.

I have to agree with pirate it sounds like Chrones symptoms to me. If you haven't already your doctor will probably want a colonoscopy and a barium test which looks at your upper digestional tract. Neither of which are anything to worry about. (Although I was worried the first time. )

Sorry to hear about your father in some ways that's even harsher than the idea of having Chrones.
03-10-2010, 04:54 PM   #20
CodeBlue2012
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I've had an Upper GI series and a CAT Scan so far... The appointment is getting closer! yay! haha. My dad just got chemo again today, they said it is in a lot of his internal lymph nodes, and they've extended his treatment to six sessions, but, his tumors seem to be shrinking.
03-16-2010, 05:04 PM   #21
iamdaniello
 
Hi codeblue! I'm new to this as well and have only had Crohn's for 4 months. But I can tell you I had a really hard time with food and diet in the beginning. I had to cut myself away from caffeine, sugar, dairy, pork and beef. My body just couldn't handle it. After going into the hospital and having an absess drained I can now eat some stuff I haven't touched in a long time. Such as a lot of dairy products don't bother me, and I can eat ground beef, but the lean stuff. I know Crohn's disease along with a diet is very different for everyone, but maybe and hopefully that will help you out? I was recommended a high protein and high nutrient enriched diet. Good luck with everything!

Danielle
03-17-2010, 10:13 AM   #22
Astra
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Hi codeblue

I'm so sorry, I've missed this thread for some reason or other
big warm welcome to the family
You have so much going on for such a young lass, and I hope your Dad is on the road to recovery too
Good luck with your appointment, and don't forget the scope!
Lotsa luv
Joan xxx
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03-30-2010, 04:44 PM   #23
CodeBlue2012
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So, everyone, I went through my appt today. My Gastroenterologist is having me get an endoscopy (from both ends), a small bowel barium series, another upper GI series, some more stool samples, and I got a blood test also...He chose to do all of this because of my dad's history he said, otherwise he probably wouldn't have began my testing so extensively..

Last edited by CodeBlue2012; 03-30-2010 at 05:03 PM.
03-30-2010, 05:05 PM   #24
CodeBlue2012
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Astra101 said:
Hi codeblue

I'm so sorry, I've missed this thread for some reason or other
big warm welcome to the family
You have so much going on for such a young lass, and I hope your Dad is on the road to recovery too
Good luck with your appointment, and don't forget the scope!
Lotsa luv
Joan xxx
Thanks! My dad has his 4th treatment tomorrow, and two more to go before they decide what else they're going to do. He's found that tumor in his back is getting larger, which seems to be a bit of concern...
05-01-2010, 10:37 AM   #25
CodeBlue2012
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Just a little update: colonoscopy and endoscopy on may 5th...hope they figure something out.
05-02-2010, 08:28 AM   #26
Astra
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Sending lots of good luck your way Emily xxxx
05-05-2010, 06:00 PM   #27
CodeBlue2012
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Got my colonoscopy and endoscopy (w/ about 6 biopsies) today. I thought it was kinda neat and everything, since I'm interested in stuff like that, but...I was sick with a throat/sinus infection when I went in for it. I am unsure if this is normal or not, but, I'm having a hard time eating, because when I swallow, it feels like food gets stuck in a certain spot in my esophagus, and the pain is in the middle of my chest, like the sternum area... Any thoughts, it's kind of worrying me, because I want to eat.. =(
05-05-2010, 09:03 PM   #28
CodeBlue2012
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Astra101 said:
Sending lots of good luck your way Emily xxxx
Aw, thank you.
05-08-2010, 07:13 AM   #29
CodeBlue2012
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CodeBlue2012 said:
Got my colonoscopy and endoscopy (w/ about 6 biopsies) today. I thought it was kinda neat and everything, since I'm interested in stuff like that, but...I was sick with a throat/sinus infection when I went in for it. I am unsure if this is normal or not, but, I'm having a hard time eating, because when I swallow, it feels like food gets stuck in a certain spot in my esophagus, and the pain is in the middle of my chest, like the sternum area... Any thoughts, it's kind of worrying me, because I want to eat.. =(

well, I developed severe lung pain, chest tightness, a cough, but mucus wouldn't come up, fevers, and many other symptoms after this. I went to the doctor, and she, at first thought it was pneumonia, so she ordered a chest x-ray. It shows that I have tracheitis (staph infection of the trachea) from the endoscopy, along with bad bronchitis..
05-08-2010, 07:29 AM   #30
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Jesus!
As if things aren't bad enuf!
hope you're ok little love
xxx
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