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Surprise Crohn's Diagnosis


Tue, July 10, 2018 9:35 PM

Hi there! I just received my diagnosis of Crohns, which Im actually quite surprised about. So Ive always had tummy "troubles" of bouts of constipation, excessive gas (like horrible, horrible constant gas), hemorrhoids, etc. Always attributed these things to something else. So a few months ago, I got this horrible "stomach virus" that wouldnt go away; horrible upper abdominal pain that radiated into my back, vomiting, diarrhea and was sent to the ER from the urgent care where they discovered my lipase levels were extremely elevated. I was diagnosed with acute pancreatitis and referred to my GI doctor. After doing scans and tests, he chalked up pancreatitis to a viral infection and told me it shouldnt return. When all this started, I also began having constant rectal bleeding and casually mentioned it when they were trying to find the cause of the pancreatitis. I didnt know if it was relevant or related. He seemed quite concerned about it, I convinced myself I had really really bad hemorrhoids, lol.Fast forward, the pain returned and rectal bleeding got worse. My GI said something about Crohns but I dismissed it since I didnt have constant diarrhea. He ordered an endoscopy and colonoscopy. After those, biopsies, and more lab work, I was diagnosed with Crohns. Wow. I always thought Crohns involved horrible diarrhea so I never thought it could be that. Im starting budesonide (sp?) and am kind of worried. I took prednisone once and didnt do well on it. Im just looking for support and advice and see if anyone else has had some not-so-common symptoms? Or if anyone was first diagnosed with pancreatitis or something else before Crohns? Or if anyone has taken budesonide and any side effects, effectiveness, etc.? Or anything really!

FPO kpitch
Joined Jul 10, 2018

Sun, March 17, 2019 12:54 PM

Reply posted for kpitch.

 I took Budesonide for just over a year and was concerned about it. I had no problems after taking it for a year, then I had surgery in Dec. and weened down off it and I've been okay. Oh I also never have Diahrea but yea that's what everyone thinks. 

 good luck 
 

FPO maximum
Joined Mar 17, 2019

Fri, February 08, 2019 7:57 PM

Reply posted for kpitch.

KPitch - How are you doing now?  It has been several months and as a person in the process of diagnosis and identification of disease severity, am interested in hearing how your first few months since dignosis have been?  Have you symptoms gootten better?  What do you wish you would have known oce you were diagnosed?

I am being diagnosed following a routine colonoscopy at age 51, but with diarrhea off anf on for several years, but did not think it was more severe.  I have some damage in the ascending colon with a 3mm stricture, which they believe is causing the loose stools.  I am to have a CT entrography soon to examine the small bowel, before GI doc and I talk about treatment options...

Happy to have any wise words from your journey.  Thanks!

FPO Snoopyclk
Joined Feb 8, 2019

Wed, December 19, 2018 11:58 PM

Reply posted for kpitch.

Be patient, I just joined having been diagnosed in 2017.  Its a struggle knowing what is a symptom of Crohns and what is not.  I've been to the ER, september, with chest pains, which of course the docs are only worried about your heart.  One visit to the er resulted in a good heart, but futher testing i was diagnosed with gall bladder disease.  This december I had chest pains similiar to September but i no longer have a gall bladder.  Again, my gall bladder is gone so its hard to blame the gall bladder.  I am seeing the gastro doc tomorrow to explore whether the second pain was caused by the crohns or a stone that was floating around somewhere in the bile ducts.  I would love to know that the pains in my abdomen is ONLY the crohns and not something else.  Its a catch 22.  I am on a low carb diet (through a hospital medical weight loss program)as I am obese.  My weight loss has been slow since May which is good, it did not contribute to the gall bladder situation.  I usually have diareaha (sp).  The diet program normally makes me constipated but since the gall bladder surgery its been mostly the "runs".  Is it the "phantom" gall bladder or is it crohns.  I am at a loss and totally conflicted.  Glad the heart is good, but not knowing is a struggle.  So I feel your pain and emotional loss regarding the unknown.  this is my first experience on a community chat, but I am needing the support and there is no support groups near me.  I just may need to start  my own.  just be patient.  we are in this together.

FPO BPolo1954
Joined Dec 19, 2018

Tue, October 23, 2018 2:02 AM

Reply posted for kpitch.

Hi, I was diagnosed with Crohn’s a couple of days ago. I’ve been prescribed Budesonide but I’m hesitant to take it having read the side effects. How did it go for you? Nervous deck here indecision

FPO nazzy
Joined Oct 22, 2018

Sun, September 16, 2018 5:44 PM

Reply posted for charbs.

Hello! You are not alone. I was just put on Prednisone, had initial symptoms like you had, excessive horrible gas literally for years. Thought I just had lactose intolerance or ibs. Left side pain ( slight) started about 6 mo ago. 6 weeks ago diarrhea daily. 4 weeks ago bloody diarrhea, 20 lbs weight loss and cramps. ER and diagnosed with colitis, colonoscopy and now they think it's Chrohns. Did your symptoms get better with the meds? How are you doing?

FPO quincycat
Joined Sep 16, 2018

Mon, July 16, 2018 9:58 AM

Reply posted for kpitch.

It usually takes a day or two.

FPO charbs
Joined Oct 31, 2016

Sun, July 15, 2018 7:00 AM

Reply posted for kpitch.

What's the point of having a community if nobody responds?

FPO kpitch
Joined Jul 10, 2018

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