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Unusual presentation of Crohn's


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Old 06-08-2013, 01:29 PM   #1
Greengal04
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Unusual presentation of Crohn's

Hello,

About 6 months ago I was diagnosed with Crohn's disease, I am 36. Although thinking back I've probably had it since my 20s and just did not know it. Crohn's has symptoms that are easy to brush off as other things. Plus, the symptoms ie had we're never your typical Crohn's symptoms. I never really had diarrhea or bloody stool. My symptoms were sometimes severe constipation and often nausea. I did have cramping and got gassy, but I am a female so I and other doctors always attributed the cramping to being "female problems."

It wasn't until last year when I suffered symptoms so severe that it about disabled me that I sought out a GI doc. And after a barium CT scan, blood work, and a colonoscopy I was finally diagnosed with Crohn's. My doc put me on Pentasa and I've been working with a nutritionist.

But even now I still don't have you typical Crohn's symptoms. I can go days at a time with no bowel movements at all, despite upping my fiber, eating healthier, and taking Miralax as directed. And then a day comes when I swear 10 pounds of stool comes out, it just keeps coming and coming all in one day. It's like my body stores it up for days and then releases all at once. And I spend the rest of the week feeling gassy and nauseated all over again. That's my cycle. And it doesn't seem that the medication or dietary changes I've made have helped. I'm not really sure what to do at this point. And given my unusual presentation of Crohn's no professional I've seen really know how to help me, as the typical treatment advice given to Crohn's patients doesn't really seem to apply to me.

I just know it's very exhausting, frustrating, and it's keeping me from having a life. Any thoughts at all?

 
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Old 06-10-2013, 11:11 AM   #2
quincy
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Re: Unusual presentation of Crohn's

Hi...I see we discussed this in the past.

Do you not have any inflammation in the rectum?

Rather than the miralax, i'd suggest you maybe try another fibre supplement to help keep your colon functioning/exercising in a more natural rhythm.

How are you eating?
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Last edited by quincy; 06-10-2013 at 11:15 AM.

 
Old 06-10-2013, 11:19 AM   #3
Greengal04
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Re: Unusual presentation of Crohn's

Quote:
Originally Posted by quincy View Post
Hi...I see we discussed this in the past.

Do you not have any inflammation in the rectum?

Rather than the miralax, i'd suggest you maybe try another fibre supplement to help keep your colon functioning/exercising in a more natural rhythm.

How are you eating?
q
No, it's actually in the terminal illeum according the colonoscopy I had 6 months ago.

Due to the constipation issue I have been eating more fiber, both in the form of more fruits and veggies, but also fiberous cereals and grains as directed by my nutritionist. I've also been using fiber suppliments.

 
Old 06-12-2013, 10:20 AM   #4
quincy
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Re: Unusual presentation of Crohn's

Maybe consider asking your GI for a script of Bentyl (dicyclomine). it's an antispasmodic which could help.

Good you're eating fibres. some, however, could attribute to discomfort..it's mostly a pick and choose based on comfort.

How much Pentasa are you on? just curious.

It seems as though you have other issues rather than just CD...

Are you using any probiotics? That could help as well.

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Old 06-25-2013, 09:50 PM   #5
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Re: Unusual presentation of Crohn's

I was diagnosed with Crohns in 1999 and since then the diagnosis varies between Crohns and Ulcerative Colitis... Now until the past 6 months I had the constant going going going problem. About 6 months ago I started getting constipation for days and days and then similar to you I would poop my guts out for 2-3 days... So hard to try and schedule anything. My new GI doctor said its possible and typical to also have IBS along with the crohns/ulcerative colitis. Which from what it sounds like could be what you have also but since you were diagnosed fairly recently it could be similar to mine.. My GI doctor told me to losen up on the fiber as I had upped it and she started me on Milk of Magnesia as well. This according to her and what I have read is safe long term and can help get your intestines "working" more regularly. I am still playing around with the dosage as what she said to take literally has me on the toilet all day everyday.. so I'm trying to "fine tune" everything.

I would ask your GI about this since a lot of what I have read confirms what I stated above. Sorry you feel so crummy :*( I am also taking Asacol HD for the IBD.

 
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