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Frozen colon in MN

Hello all,

I'm new to this forum, not so much to Crohn's, although in some ways I feel like a new Crohnie, let me explain...

I was diagnosed seven years ago. I went to the doctor because I was having (and had been on and off for many years) problems with burning stool, bleeding, hemorrhoids, and other fun things. The doctor diagnosed me with what she called Crohn's/Colitis, because I had markers that pointed to Crohn's, but it appeared exclusively in my colon at the time. It was about this same time that I reconnected with my sister whom I hadn't spoken to in years, and she told me she had Crohn's too. She had it for years, and her case was pretty bad. The pain was shutting her down completely, and she was allergic to most every med that was commonly prescribed, making life even tougher. After suffering for years, she had a re-section last year and is much happier, at least for now.

Well, my doctor put me on Asacol (3 pills, 3 times a day) and things got better pretty quickly. My Crohn's was always mild - it flared up now and then, but never to the point where I would miss work for example, it was more of an annoyance. That's that way it stayed for about 6 more years.

Last year, I went in for a colonoscopy because I starting to see a lot of blood in my stool. Turns out I had some massive polyps, and those were removed during the procedure. However afterwards, my (new) doctor told me that he didn't see any sign of Crohn's at all. And he told me that in order to prove I don't have it, he wanted me to go off my meds altogether. Which I did. And all was well for about 11 months.

Then last month - wow. It started out as constant diarrhea. I mean all day, every day for over a week straight. And then, the pain began, deep in my gut. The kind of pain my sister had always talked about, the kind that kept me out of work and in bed. Another colonoscopy was scheduled, and guess what? I have Crohn's. Surprise.

It appears to have moved this time however. It's not in my colon anymore, it is in the end of my small intestine (the Ileum?). The doctor (yet another new one) wanted to just put me on steroids to help clear it up, but since my sister had it in her jejunum, I want to make sure that we are aware of any/all places it could exist before deciding a course of action. So tomorrow I go in for an MRI to see what we can see.

Anyway, I wanted to say hello and introduce myself. Nice to meet you all. I'll try to drop back in and post the results of the MRI when I can.
 
Welcome to the forum, toddhd. I was diagnosed initially as Crohn's/Colitis for the very same reasons as you, and with similar symptoms. After my second colonoscopy and biopsy, they decided it was Crohn's because of all the fistulas and perianal 'pop-up's' I was dealing with. Essentially, it sometimes seems the more I know about this disease, the less I know/understand about it!

This past month must have been such a shock and hellish to deal with. I'm sure you'll find lots of information on the forum and feedback from others.
 

Lisa

Adminstrator
Staff member
Location
New York, USA
Interesting your doc wanted you to go off meds to 'prove' you didn't have crohns/colitis.....

When I was a child, I would go into remission for YEARS without meds (be on meds to bring remission, then go off) - and each time I went off meds the remission time got shorter and shorter....to me that doesn't prove you don't have it!

Good luck with the MRI!
 

Astra

Moderator
Hi Todd
and welcome

Sorry you're suffering again. If the doc wants you to go on steroids, Entocort would be a better choice, this is cos you have it in the ileum. Unlike Pred, Entocort is non systemic, it only goes to the small bowel and the beginning of the large, thus reducing nasty side effects to a minimum.
Good luck with the MRI
lotsa luv
Joan xxx
 
Welcome to the forum.

It is 12 degrees out. That is pretty warm for January in Minnesota. I hope your colon thaws out soon.

Good luck with the MRI.

Dan
 
Just a quick hello and welcome to the forum! :)
Please let us know the results of your MRI!!

Make yourself at home here..
Once again welcome~Nancy
 
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