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Crohn's Disease Forum » Support Forum » Mental Health Support » New Diagnosis and totally preocuppied


03-29-2015, 08:10 PM   #1
Dalton
 
Join Date: Mar 2015
Location: Kelowna, British Columbia
New Diagnosis and totally preocuppied

I was diagnosed with mild crohns a few weeks ago after a colonoscopy. I don't think he did a biopsy. I keep trying to find something to tell me that it might somehow be a misdiagnosis.

As I try to get more informed I am overwhelmed by the information and how much of it seems contradictory. Everything I read just gives me nightmares.

The thing that frustrates me most is that I have a very high demand job working with teens. In the summer I spend weeks away at a camp requiring high energy and with camp food. Everything I am reading tells me that if I am not able to manage this disease well, I won't be able to keep up at my job.

I would love for someone to tell me I am over-reacting.

Also, I am on Entocort for 9 weeks and my gut pain is gone, but now I'm constipated, have no appetite and everything tastes funny.

I am not usually prone to whining. I am really good at seeing the bright side, but I can't seem to settle on the bright side this time. I finally know what's wrong after 5 years of issues, but I never thought "incurable" was going to be part of a diagnosis.
03-29-2015, 08:27 PM   #2
Phartologist
 
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Join Date: Feb 2010
Location: Melville, New York

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Hi there,

Crohns is not a death sentence! Living and working with it is a total possibility.... eating certain foods may be a problem you will have to work out... since Crohns is mainly a small bowel illness and colonoscopys are large bowel tests ask your Gastro to do a small bowel followthru test [SBFT] which specifically is for Crohns in the small bowel... if the Crohns is in the large bowel than the colonscopy would find it....there are drugs that can be tried that may have no side effects and workwell... stick with it and it should work out well.... keep positive and keep working
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Pentasa 500mg 9/day
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L-Glutimine [anti-inflammatory]
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04-01-2015, 01:07 PM   #3
mvond5
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Join Date: Jan 2013
Location: Snellville, Georgia

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SCD diet, worm therapy, cannabis oil are a few things to Google if it's mild and you can care for it right of way. It should be easier to get into control
04-01-2015, 01:32 PM   #4
Crohns08
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Join Date: Sep 2008
Location: Florida
I would also like to empasize that crohn's disease is not a death sentence. I'm 22 years old and I was diagnosed right before my 16th birthday. There is also nothing wrong in seeking a second or third opinion if you feel that your present doctor wasn't diligent enough as I have done it myself both for diagnosis and treatment plans. I highly reccomend the SCD. It's strict if you do it right but for some people it can really help either in combination with medicine or sometimes without.
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Toni, Diagnosed in September '08
Specific Carbohydrate diet
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09/2011 - Draining an Abcess the size of a lemon!
10/2011 - Same abcess, different approach this time, open incision!


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06-11-2015, 02:30 AM   #5
gadgetninjette91
 
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Join Date: Feb 2015
Location: Portland, Oregon

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I'm a fairly recent diagnosis myself and I can tell you that it's definitely not easy to come to accept. Eventually I did, but after suffering a nervous breakdown. It really is a grieving process that you go through, it felt like a part of my vitality had died almost. Now, if it doesn't turn out to be Crohn's, lucky you! But if that's what it turns out to be, try to ask about a top-down approach. In other words, you may be "mild" now, but that could change at any moment if you're being treated with weak meds first and is more likely to lead to complications in the long run. I had that problem and my current doctor wants to adopt a top-down approach. Catching it early could most definitely slow down the progression and keep you in the so-called "mild" state, hopefully will bring about full remission. Good luck!
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Can you spell jejunoileitis?

Crohn's disease of the small intestine (jejunum and ileum), dx April 2015

Current Meds: Cimzia 200mg injections every 2 weeks, Dexilant, Lamotrigine

Past Meds: Sulfasalazine 500mg 2 tabs 3x/day, Pentasa 4,000 mg/day (4 500mg caps 2x/day), Apriso 0.375 g (4 caps 1x/day)

Do we share this uncommon presentation? If so, feel free to shoot me a message.
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