Hello, newly "diagnosed."

Crohn's Disease Forum

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Hi,

I am 29 years old, female and have recently been diagnosed with Crohn's well, my doctor says she is 90% sure it is Crohn's. I will find out for certain sometime next week (they are doing a rush/emergency) procedure that is simliar to a endoscopy but with a longer tube.


For the past few years I've had a few stomach issues, which originally my doctors said it was stress related, due to panic attacks, and most likely was an ulcer or some type of gastric reflux. So they gave me Zantac and sent me home. Well, Zantac did not really do the trick and for the past 2 years, I've been dealing with constant nausea, diarrhea and pain in my gut. Last summer, the pain began to become really unbearable. I was swapping jobs at the time though so I did not goto the doctor. I just keep checking for fever etc, signs of appendicitis etc.

Then I had an auto accident. (Not my fault btw!) And during the emergency treatment I was CT scanned. This is when the ER doctor approached me and said "Hon, do you have bad stomach aches and diarrhea often?"

I responded "Why yes, yes I do."

A few months later after I had healed up and haired over from the severe auto accident, I was able to see a GP who referred me to a Gastro Doc. They redid the CT scan yesterday, (boy is my gut paying for that today, so much pain from drinking all that liquid!) and the results were concerning enough for my Gastro doctor to call me and inform me of the treatment / testing changes that she is going to try and push through next week. Apparently my problem is in my small intestine and NOT in my colon where the original scan reviewer thought. I guess with the added dye that I drank the scan was clearer. The inflamed area is under my colon though and my Gastro Doc says she can see where they might have mistakenly read it before.

So In 6 months I have lost 40 lbs, been nauseated, on the toilet constantly...or the reverse, not being able to go for 3-4 days straight. My blood tests show that I have a raised something or another, did not catch that on the phone. (She called me from her CELL PHONE!) And I deal with TERRIBLE pain in my stomach. I told her and ALL my doctors since July that it feels just like I swallowed GLASS. :ybatty:


What is upsetting to me though is that other people even my GP just doesn't understand how bad this pain is sometimes. They just look at me like I'm a weakling or something. I broke down on the Gastro Doc and said "Look, I was in a head on collison, I did not take any pain meds, I can handle pain. This pain in my gut makes me wish someone would knock me OUT sometimes."

And my poor hubby gets very frustrated sometimes.


Everyday I wake up wondering "Will today be an OK day or not." I was thinking to myself on my drive home from work today..."Every day people get on with their lives and never know what it's like to be in CONSTANT stomach pain." I hope for days with out or little pain. I don't "expect" them like normal people. :depressed:

Oh and lastly, she said the location of my inflammation is usual. What the heck, even my Crohn's can't be normal.


Nice to meet you all, my apologies for the long /rant, /whine.

-Kittee :sheep:
 
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I'm sorry to hear about your diagnosis but want to assure you that it's better to know now instead of years down the line like others here have had to deal with.

I have to say that your husband's frustration is normal but unfair. He vowed, I assume, "In sickness and in health." No need to harrass the poor guy but he needs to not make this harder on you by saying things like that.

As far as the doctors understanding the pain level...I would sign up to see a GI doctor who actually has crohn's in a heartbeat!!! They are also desensitized because they hear it all day every day.

You will have good days despite not feeling that way now. Most people have experienced periods of remission and learn to appreciate those moments more than ever.

You will be ok. You're in good company!
 
Yes I agree with the above post, I can very much relate to the depressed feeling (mine manifests itself more as anger though unfortunately). Sorry to hear about the flow of things lately for you, but if they can diagnose it, they can start work on making you feel better. Hope all goes well and the first thing they decide to do works wonders. Welcome here, I'm new too btw...
 
hi kittee welcome to the forum and dont go apologizing for having a rant sometimes thats the best thing to do!

yeah doctors really dont understand the pain we go through with the stomach pains. i sometimes wish that everyone in the world could just live one day with crohns and let them see what we have to go through. im only 14 and still at school and the amount of energy it takes to get through just one day is quite staggering. ive told teachers im physcially unable to do homework sometimes as most nights when i get home its straight to bed for me!

the best doctor i ever had was a man called ian reed who, although doesnt suffer from crohns, has IBS which is similar though not as severe. he really knew what i was going through and was much more understanding than these doctors who think that just because theyve read 100 books on the disease they know all about it and what is best for the patient.

once your on some meds you should hopefully feel better. i know that within around 3 days of being introduced to prednisone (steroids) i felt almost 100% better again although i knew this wouldnt last as the risks of steroids are many and dangerous and i was quickly off them and feeling rough again. thankfully there are many different types of medication to try so you should find one that helps you. best of luck kittee!

and BWS1982 i see by your pic your a fellow family guy fan :) gotta be the funniest show on tv its helped me so much when im feeling rough. god bless you family guy ;)
 
Thanks all.


Well my GI Doctor has traded me off to a GI Specialist in Crohns. They sure are moving fast. I see this new specialist on Monday, then I have a "endoscopy like" procedure on Tues. Morning.


This makes me very nervous that they are moving so quickly. :confused2:
 
Amor
This is so off topic...but you are so articulate for a 14 year old. What do you attribute this to? Did you go to private school?...
 
Wellll, tho a bit off topic (and apologies to kittee AND a big forum welcome as well) BUT I'm impressed by Amor's ... wellll, for want of a better word.. 'maturity' for a 14 year old.. so i'd like to know as well. BUT, there's a 'cultural' difference between the phrase 'private school' AND 'public school' as it is understood in UK and how it is generally understood here in North America. Think to avoid confusion Amor would have to include/descibe the UK definition.

Oh, BTW... Kittee... I know first hand the 'glass' analogy you used. I lost nearly 70 lbs AND finally ended up in the emergency room when it got to the point where even water used to take my meds at the time caused the glass feeling.

I have had a broken knee, a crushed ankle, been stabbed 3 times, shot once, I passed numerous kidney stones AND gone thru several pancreatitis attacks. all of those pains pale in comparison to the pains I have lived thru with IBD

you are not alone.. Rant, rave, whine, cry all you want.. We've all been there
 
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Kev, here I am off topic again. I've been especially interested in children's education lately because my 2 year old son is showing early signs that he may be advanced. His teachers and others that interact with him seem to think he's bright. The problem is that our public school system can't always be relied on to provide the education level or challenge that each student needs. Although we are said to be in one of the best districts in our area.
We have a couple years to worry about this but it's good to get feedback now so we can put him on the right course.
 
Kittee, I can truely understand what you said about feeling like having glass in your stomach. I would get those pains so bad before I had my resec. and it would double me over in pain. I can't explain it but I just wanted to be left the hell alone. I could'nt stand people asking me what was wrong or was I o.k. because it would just irritate the hell out of me. I wish you the best of luck in finding out the best course of treatment for you. You will endure multiple painful tests, I won't lie to you, but if you have a good gastro, then they should be able to help you. Just know that those of us that are in the same boat as you do care and are here to listen. RC
 
amor151 said:
and BWS1982 i see by your pic your a fellow family guy fan :) gotta be the funniest show on tv its helped me so much when im feeling rough. god bless you family guy ;)


Yes, one of my fav shows. Unfortunately I've seen practically all of them so far so the effect is dulled when I see them again, but still they are classic. I love Simpsons and Monk too for the humor.

Sorry for the thread hijack...
 
Welcome Kittee
Yes i hear yah when it comes to the stomach pain.I swear its worse then labor pains.
I'm just thankful that I finely found a GI who understands the pain that us IBD suffers encounter on a daily bases.Hang in there the Drs. will figure out the right meds for you.And your body will also let you no which meds it can tolerate.
You have come to the right forum to rant,rave.ect....
Ask away someone here will always give advise knowledge on their experiences living with this roller coaster of a ride disease.
 

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