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Crohn's Disease Forum » Your Story » Diagnosed with Crohns...need wisdom and direction


05-15-2014, 09:26 PM   #1
Tiamaria
 
Join Date: May 2014
Diagnosed with Crohns...need wisdom and direction

Okay, So I have lived my whole life with major pain, abdominal cramps and bloating. I have been conditioned to it in a sense and I always just thought.... I am always constipated and am bloated ALL the DARN time!!

So, now at age 38, I actually have decent health insurance. I decide to obtain a doctor. I explain my symptoms and my doctor tells me, without really any tests, that I have Crohns. I am thinking to myself... I never experience diarrhea, I am only ALWAYS constipated!!!!?????

So listening to my doc's recommendations,

I obtain a colonoscopy and it reveals multiple polyps. My doc puts me on Pentasa and something amazing happens....I am pain free and life is like totally great!!

Then, after feeling like life is great...I start missing doses of Pentasa and eating stuff that is so good! Bad stuff, like fried chicken, catfish, ect. (no judgments please).

Then a week later, something horrible happens...I feel so tired, I can hardly move and I get a fever of 101 and go see my doc. He puts me flagyl...and I resume my Pentasa and boom! I feel great again.

My question is, how can my doc just assume I have crohns, maybe I am in denial...what tests should I obtain? At this point, I am NOT getting off of Pentasa, and I am not eating fried chicken and catfish

Please, please, give me advice!
05-15-2014, 09:52 PM   #2
DJW
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Location: Ontario

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Hi Tiamaria and welcome. I love fried chicken but it doesn't love me.
One of the main tests is a colonoscopy with biopsies. Other tests can be done incising blood work, fecal test, etc.

My crohns was diagnosed in the perdatric GI's office. He did a sigmoidoscopy and told me right away.

I'm very glad to hear meds are working. Put together questions next visit.
1. Where is the disease located
2. How severe
3. What is the longterm treatment plan
4. How often will you be seen
5. Are any other tests being done

I just reread your post. I just need to clarify. Was it a GI doc who diagnosed you? Was the diagnosis before the colonoscopy?
I see where you're coming from I'd be concerned too.

Ask why he thinks it's crohns. Btw-some people with crohns get constipated.

Sorry the post is a bit jumbled, it's late and I'm on a very old iPhone.
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05-15-2014, 10:04 PM   #3
Tiamaria
 
Join Date: May 2014
I totally appreciate the sample questions to ask my PCP! My PCP is not a GI doc, but an Internal Medicine doctor. I will request a referral for the recommended tests. Knowledge is power, and I appreciate your directives. I extend my well wishes to you for providing your support!
The diagnosis was after multiple visits with fever, and him admitting me to hospital for a colonoscopy.
05-16-2014, 04:25 AM   #4
valleysangel92
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Location: United Kingdom

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Hello and welcome

We aren't here to judge you, we all do things that we probably shouldn't now and again, we're only human and you're still learning.

If you haven't seen a GI then that would be the next step for me. Although PCPs can be great, they don't always have the knowledge base needed for a complex condition like crohns disease.

When you get in with a GI they might want to repeat your colonoscopy, especially if no biopsies were taken during the first .

Everyone with crohns is different, even your own disease can change dramatically from one flare to the next, so diagnosis shouldn't just be made on whether or not the symptoms are typical. Constipation can be a part of crohns, it was a pretty big problem for me before my surgery and to be honest I personally think its more common than the doctors realize.
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coeliac disease/Osteopenia /Crohns/Arthritis/
laperoscopic hemicolectomy 25/06/ 2013

Meds- Vedolizumab, sulfasalazine, Lansoprazole, Vitamin D, prochlorperazine, Oramorph, MST, B12 shots My journey with crohns: http://glutenfreecookiemonster.wordpress.com/

Allergic to - inflectra, aza

Non CD meds - Gabapentin, paracetamol, ventolin
05-16-2014, 07:15 AM   #5
Tiamaria
 
Join Date: May 2014
Listening and taking notes to ensure my diagnosis is correct!
Thank you!
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