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04-24-2012, 05:20 PM   #1
Mzjenny
 
Join Date: Apr 2012
Location: Rhode Island
New to the Forum

Hello everyone. a good friend referred me to the forum, all i hear is wonderful things so i figured i would check it out for myself. My Name is jen and im 34 years old. i have had "belly" problems for years and my Dr would insist it was "ibs" until Jan 27th i was admitted to the hospital for severe abdominal pains/bleeding. after 5 days of being there i had a colonoscopy done. It showed i had Ischemic Colitis (no blood flow to the colon). The more i read up on this the more questions i seem to have. This "type" of colitis is seen in older people, 50 + so its mind boggling as to why it happen to me . i have been on the med "apriso" for 2 months, seem's to be helping but still having flare ups, and the spasm's are unbareable. there are no specific foods that seem to cause the flare ups, its very spontanious and comes outta no where !! this has completely taken control of my life, and i just wanna be back to my free, happy spirited self. anyone out there that has or had this?
any feedback or tips would be greatly appreciated ! thanks for listening
04-24-2012, 08:56 PM   #2
Meatball19
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Join Date: Feb 2012
Location: Cumberland, Rhode Island
hi Jen, I'm so glad you joined!! This forum is very supportive and helpful. I hope you get all of the answers Nd help that you need. Good luck Hun!
04-25-2012, 08:39 AM   #3
David
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Join Date: Feb 2006
Location: Naples, Florida
Hi Jen and welcome I've read up on Ischemic Colitis quite a bit and have some questions for you if you're so inclined:

1. Where specifically is your pain located?
2. Do you by chance have a copy of the report associated with your colonoscopy?
3. Did they take biopsies when they did the colonoscopy? If so, what did that report say?
4. Are you under the care of a GI now? If so, is it the one who did the colonoscopy in the ER? In those two months since your diagnosis, have you had any followups with the GI who diagnosed you? Or a new GI?
5. In all your research did them prescribing Apriso and sending you on your way make any sense to you? Because it sure as hell doesn't to me.
6. Did they run any tests to try and determine WHY you have Ischemic Colitis? Or did they just give high fives all around because they had a name for what you have and that's about it.

I hope you have the time to answer at least some of these questions. I want to make sure you're getting the care that you deserve.

*hugs*
04-25-2012, 09:29 AM   #4
Mzjenny
 
Join Date: Apr 2012
Location: Rhode Island
Thanks for replying . As far as the pain goes its always in the lower left side, the GI doctor who did the colonoscopy is who I've been following up with once a month since the hospital stay. He had taken Multiple biopsies. It showed severe edema and abnormal cells in the rectum and sigmoid colon. No polyps and thank god NO cancer ! My Dx is now "microscopic colitis" . He prescribed the apriso due to the bleeding which now has stopped and also bentyl 20mgs for the terrible spasms. The apriso has stopped the diareah also. I've had 3 flare ups in the past 2 mths. When I do have a "attack" the pain is so bad that I get all flushed. My cheeks get boiling red n burn so just friday I went for blood work, he's checking for antigluten antibodys. Hoping to get the results soon !!
04-25-2012, 09:37 AM   #5
David
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Join Date: Feb 2006
Location: Naples, Florida
That makes me feel a little better. Leaving it as a diagnosis of ischemic colitis was obviously a load of crap though I was trying hard to stay neutral (I obviously failed heheh).

I have a form of microscopic colitis called, "Lymphocytic Colitis" and the other one is Collagenous Colitis. There's not much difference really and some suspect it's the same thing at different stages. We have a microscopic colitis support thread here if you're interested.

And now for the reason I only feel a little better. I know you're not going to like this but microscopic colitis is not typically characterized by bloody diarrhea. I'd ask him his thoughts on performing additional testing. Maybe a capsule endoscopy to see what's going on higher in the intestines where the colonoscopy couldn't reach.
04-25-2012, 10:05 AM   #6
Mzjenny
 
Join Date: Apr 2012
Location: Rhode Island
Thanks for the info and links . I will def check them out. As far as the bloody diareah that only occured very heavy the night i got admitted due to the ischemia.blood had to release somewhere up to 2 mths after the hospital stay I would have some spotting here or there. So my original dx was "ischemic" now changed to microscopic colitis. I hope all these test give me a lot of info! Sick of feeling this way : /
04-25-2012, 10:23 AM   #7
David
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Join Date: Feb 2006
Location: Naples, Florida
I can't see microscopic colitis causing intestinal ischemia and can't find a single incidence in scholarly literature. Your long term "ibs" symptoms and now bloody diarrhea makes me think something else is going on. Of course, I'm no doctor and I sincerely apologize if I upset you by saying this as I know all too well it's nice to get a diagnosis.
04-25-2012, 10:36 AM   #8
Mzjenny
 
Join Date: Apr 2012
Location: Rhode Island
Oh noo I'm not upset @ all. I appreciate any info or opinions. Believe me I know something is going on, and I hope with all these test I will get more answers. no more bloody stools just very bad spasms, and a occasional flare ups. Keeping my fingers crossed! Its funny because before the dr did the colonscopy he had explained all different types of colitis to me, and then he says then there's ischemic colitis but I doubt that's what you have cause that's seen in older people. Welll after the colonoscopy he looks @ me and says well I'm mind boggled. It was ischemic. I know this happens to older people from multiple things, one being dehydration. But when it happens to a younger person I'm really not sure why. I'm sure stress played a huge roll....
04-25-2012, 11:20 AM   #9
em6263
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Join Date: Apr 2012
Location: San Francisco, CA
Hey Jen,

I hope you're doing ok. Coincidentally, I'm going through the exact same thing - bleeding/pain, followed by colonoscopy, and the biopsy results indicated ischemic colitis. I'm 33. My doctor still thinks it's Crohn's, though, because of all the ulceration, my history, etc. Let me know if you find anything else out about this, and I'll do the same. You're definitely not alone.

-Em
04-25-2012, 11:36 AM   #10
Mzjenny
 
Join Date: Apr 2012
Location: Rhode Island
Aw thanks em ! I will def let you know I hope your feeling better soon!!!
04-25-2012, 02:15 PM   #11
Angrybird
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Location: Cambridge, United Kingdom

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Just wanted to pop in and say hello and to the forum. I hope you can soon be feeling much better - do follow up with the doc about getting some further tests done and to sort out a med that can help get things right for you.

Wishing you all the best

AB
xx
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Angrybird

DX: Crohns July 2002
Surgery: Ileocecal Resection Sept 2011
Now:Tummy behaving itself and new mummy to baby Nicholas
Current Meds: 6-MP 75mg,B12 injections every 3 months
Previous Meds: Budesonide, Prednisone, Remicade, Pentesa,Hydroxychlorequine,Azathioprine (tried twice) and Methotrexate
09-24-2013, 12:51 PM   #12
Cupcake88
 
Join Date: Sep 2013
Location: Omaha, Nebraska
Hi Jen!
you are not alone I was diagnosed with ischemic colitis when I was 21. I don't want to scare you but I have had 10-15 attacks since. I am now 25. It began with a whole life of minor stomach problems such as chronic constipation.
When it first began It hurt to eat and i had no appetite. I ate applesauce, ensure and rice. easy stuff.
veggies would tear my stomach apart. it hurt so much.
I have been on and off medication try dicyclomine for spasms and i was on amatiza for IBD. I also was given lots of pain medication which I don't suggest.
here's my intro post about my story http : //www . crohnsforum .com / showthread .php ? p =705073# post705073
09-24-2013, 12:52 PM   #13
Cupcake88
 
Join Date: Sep 2013
Location: Omaha, Nebraska
it wouldn't let me post a link so i added spaces, please just take out spaces to see my post
09-24-2013, 02:48 PM   #14
Mzjenny
 
Join Date: Apr 2012
Location: Rhode Island
Hello everyone. It's been a while. 3 months after my original post I was dx with celiac. Been GF since then. Went almost a yr without a flare and this past July I was hospitalized and Found out I have crohn's also so now I know why I was having all that pain and problems. Been on humira since august. Still having issues. :/ very frustrating.
09-24-2013, 03:30 PM   #15
nogutsnoglory
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Location: New York

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Mzjenny I'm sorry you are still suffering. Humira can take about 3 months to fully kick in so don't be discouraged that you don't feel great yet. Even if ultimately Humira doesn't work, there are other drugs to try.
09-24-2013, 03:54 PM   #16
Mzjenny
 
Join Date: Apr 2012
Location: Rhode Island
Thanks Hun. Starting with some hip pain and still getting abdominal pain. Today's been a rough day
09-25-2013, 11:58 AM   #17
semicolon306
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Join Date: Mar 2010
Location: Norwich, Connecticut
Welcome
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LMPO - "Laugh my pouch off"

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Age 8 - ABD pain, weight loss, no appetite
Age15 - Admitted with rectal bleeding and pain - treated as Colitis
Age 19 - Colon removal with a ileostomy
Age 20 - J Pouch with a Pull through procedure
Age 32 - Complete blockage (due to scar tissue)
Age 34 - Partial blockage and found to have Crohn's
Age 35 - J pouch has a fistula & both connected to spine
Age 36 - Ileostomy and rectum closed
09-26-2013, 02:18 PM   #18
Mzjenny
 
Join Date: Apr 2012
Location: Rhode Island
Thank you ^
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