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Crohn's Disease
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Posted 10/15/2009 4:49 PM (GMT 0)
Hi Everyone,

 My name is Ivana and Im 20 years old. Within the past year I have been having some unusual things going on with my body and I cant seem to get any answers. Ill list all my symptoms( there are quite alot and unusal ones) and maybe someone can help me out..

** abdominal pain/bloating- brought on by eating or a BM

  running to the bathroom 30-60 mins after eating

heartburn

weightloss- ive lost 25 pounds since january(when this all started)

irregular periods

increased acne on face/neck/chest

hair is falling out-- thinned out so much i cant style it

fatigue

shortness of breath and dizziness

change in bowels- noticed more mucous

anal bleeding and pain after/during BMs

explosive diahreaa- occuring for about a month now-- very thin/pencil like stool that forms a pile (light brown/greenish yellow)

increase in gas

increase in urination and BMs causing dehydration

extreme joint pain- in knees down to ankles thats dabilitating.. pain in my hip bones started this morning ( really hard to walk now)

muscle stiffness in hands- hand gets stuck closed and wont open.. have to use other hand to pull open

muscle weakness in arms-- i cant use my arms for basic cleaning or holding a book up  or really anything for a extended period of time without them going numb and tingly and painful where i have to shake them out or take  a break.

have noticed more bruises appearing out of nowhere

very oily skin on my face where i actually have to wipe it off and can see it-- its gross

sweat very easily when i did work out and alot too-- i actually would have salt residue on my face afterwards(never ever had that)

unable to work out now b/c of joint pain and fatigue

change in sleep patterns( difficulty falling asleep and staying asleep-- wake up between2-4am..have night sweats occasionally)

occasionally nausea

i cant stand up for long periods of time- tire very easily

lack of energy all around-shortness of breath just walking up the stairs

i am very sensitive to cold-- hands /feet/nose are always cold .. it takes a long time for me to get warm

and oddly enough-- memory loss/forgetfullness/brain fog

emotional/depression

 i guess i could go on and on but i think u get the idea... ive been to my pcp for blood work several times in the last 6 months and everything seems to be coming back normal... i visited a orthopedic for my back and knee pain got prescribed PT for 6 weeks , only went for 2 because the amount of pain i felt in my joints worsened when i worked them out.. went to a GI ofcourse got more blood work done..again everything came back normal.. the blood work done was suppose to test for celiac but the results didnt show any testing for it.. (somebody didnt do their job) from my first visit i was diagnosed with IBS and put on miralax for the past 3 weeks... im suppose to go back in a week or two and get my first colonosopy to see whats going on in there and to rule out crohns... i went to my pcp on tuesday with all my symptoms and told them how its like everymonth i develop something else..got more blood work and am waiting on those results.

 i am looking for any advice/support in anyway possible... im really kind of scared and have never felt so ugly in my life...with my hair thinnign out so badly and some acne and paleness. its really taking its toll.... im 20 years old and i think most 50 year olds feel better then i do.. I cant wait to find out what it is that is making me feel this way.. so i can finally get treated and get my life back!

Posted 10/15/2009 5:38 PM (GMT 0)
Sweetie,
I am not a medical professional. But I think if I was in your spot I would get at the very least a pill camera done (in addition to the scope, because the scope misses about 14 feet of your intestine) and an ANA blood test. I think getting a scope done is a really good idea to get biosy from where you are bleeding.
Good luck.
Navy
Posted 10/15/2009 5:39 PM (GMT 0)
Going to get that colonoscopy is a great first step! It sounds like you have a lot of intestinal stuff going on here, and this isn't something you should ignore. People have died from wasting away due to diseases of this sort.

If things are really, really bad then go ahead and go to the ER so you can get some fluids and medication to tide you over until you get in.

And for the record, I was diagnosed with IBS my first visit to the ER, but I do NOT have that. I have Crohn's Disease. You may want to question your diagnosis further..miralax is not enough to help what is going on right now.

Your hair will come back by the way. I had a THICK head of hair before everything happened, and I could barely put it into a pony tail by the time this disease had its way with me. But things got better with treatment so your hair comes back, you gain weight, and your acne goes away :)
Posted 10/15/2009 6:04 PM (GMT 0)
Hello Ibusn,

That all sounds tough, and all too familiar for me. I was diagnosed with Crohn's in 95 and those sypmtoms are very similar to what I had. It certainly seems likely that some gut problem is manifesting itself, and I certainly hope that your doctors will find teh cause soon. People used to go twenty year without knowing what was wrong, but I feel confident you'll get a diagnosis soon. Medicine is much more disciplined these days in the area of GI issues.

All I can say is 'this too shall pass.' There will come a time when you will be healthy. Relish it, enjoy it, savor it. It's coming, so don't ignore when it gets to you.

I really wish you the best of luck.

ExJohnson
Posted 10/16/2009 3:01 PM (GMT 0)
thank you all for the support and advice ...last night i had a bit of a scare ... i went to the bathroom..thinking that i had a BM... but ofcourse it was just gas..like the explosive diahrea you get but nothing really came out with it..until i wiped .. there was blood..ofcourse i  freaked... i looked in the bowl and just saw a small splatter of blood in there also... it wiped away and that was it.. i dont know what it was thou.. im a bit concerned  b/c that has never happened .. only with like a hard bowel i would bleed a little probably from a fissure or something.. i tried calling my GI but of course they are not in til Monday so ill have to wait til then. Another thing is even thou im on the Miralax and go to the bathroom... (ive lowered my dose from 2 capfulls once a day to one capfull a day bc i had intense diahrea) i still have to strain a bit to have it come out.. its like it wont come out all the time ... and if it does its still thin/pencil/snake like.... i dont know what to think of it. any ideas??   my biggest concern is all my symptoms are kinda getting worse and i only have health insurance til December 1st bc my empoyer ( Im a Nanny) cant afford it anymore.. so ive been trying to get everything figured out before then... but it seems like next to impossible .. so im a bit worried about what to do. and health insurance is soooo expensive these days its rediculous... still waiting on my blood results ..hopefully ill find out today or MOnday ..if anything comes up in them. but i will keep you all posted!!
Posted 10/16/2009 3:29 PM (GMT 0)
If it is really bad, go to the hospital where your Gastro is affiliated with and have them call him in. I think everything will turn out for the best. Good luck, feel better and let us know what happens.
Posted 10/16/2009 8:30 PM (GMT 0)
You might have Crohn's or Colitis, but you may also have something that has since manifested from the stress. I have Fibromyalgia as well as Crohn's. I am too healthy for Social security, and too "Tired" and often ill to hold a job that will pay my bills. I have had this part time job for a year, but I just don't get the hours I did when I was in a factory job. I have a son, so I can't imagine having to care for him myself, as you do as a Nanny. My husband is here to help. Please don't be afraid to ask questions of any of the doctors involved in your case, it took almost 2 years for them to diagnose me. If they work together, one of them will find it. Good Luck. I hope things work out well in the end. (yeah, I mean that both ways!) (: You will find that a sense of humor helps more than a pain pill sometimes. Good LUCK! REALLY! I hope they get you back to working order again soon! (:
Posted 10/16/2009 8:44 PM (GMT 0)
I agree with JavaJay.
At my worst I was going to the bathroom 10+ times an hour, and the only thing that came out was blood and a few particles. The whole toilet bowl was deep red.
At that point you definitely need to go the hospital.
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