Got my dx from the doc today...

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calm-on-the-outside
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Date Joined Aug 2009
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   Posted 8/6/2009 12:28 PM (GMT -6)   
I have colitis but it's the type that they don't know what type it is! WHAT IS THAT? I forgot the exact word he used...but he said it's not ulcerative, chron's...etc. I can't believe I forgot the exact word he used. But it's basically that it doesn't have a type. How can that be? Now I have to go to my internal med dr to decide what course of action to take. The doc I saw today was the surgeon who did my scope, he said he wanted to tell me this so it was clear. Also, he showed me the pictures, chart, etc so I would fully understand.

He said that my doc would probably want to start me on the sulfa meds (which is what I figured as my symptoms are not that severe).

So, have any of you guys heard of this? Does anyone here have this type, not that it's really a type...sigh.

He did say this was good in a way and bad in a way. Good that from all the patients he's seen that this tends to be less severe than UC but bad in a way that since they don't know exactly what it is, don't know what to try first.

Thoughts anyone? Thanks for listening and for any input you have.

I'm feeling kinda lost and confused right now.

Dr-A
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Date Joined Jul 2006
Total Posts : 2105
   Posted 8/6/2009 12:32 PM (GMT -6)   
Non-specific colitis? That's pretty much it in a nutshell.
Proctitis DX 1999, Pancolitis DX 2008
Golimumab study (100mg every 4 weeks)
L-Glutamine 5000 mg + 600 mg pyridoxal alpha-ketoglutarate
Probiotis/VitD3 5000IU+Ca/1000mg DHA


fruitgirl
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Date Joined Feb 2009
Total Posts : 7150
   Posted 8/6/2009 12:33 PM (GMT -6)   
Yup, I also think it's probably non-specific colitis.
Status: Remission since May 2009!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Diagnosed with pancolitis on 1/30/09
Currently taking Apriso (4 0.375g pills ONCE!! daily), mesalamine enema twice weekly, Natural Factors Ultimate probiotic 12/12 Formula, and Zoloft (25 mg).


calm-on-the-outside
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Date Joined Aug 2009
Total Posts : 832
   Posted 8/6/2009 12:39 PM (GMT -6)   
Idiopathic...that was the word.

But...in a way, that makes me even more nervous. I have the same symptoms as UC, though not as severe as lots of you guys and I"m sorry if I sound whiney over this. I have the blood, mucus, urgency, just not as frequent I suppose. But it's really not fun...I always have to know where the bathroom is wherever I am.

I suppose now I just have to wait to see my internal med. dr to get going on trying to get this into remission

fruitgirl
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Date Joined Feb 2009
Total Posts : 7150
   Posted 8/6/2009 12:42 PM (GMT -6)   
Ok, I'm confused. From the super-quick google search, all that "idiopathic" means is that the cause isn't known. Most of us with UC don't know what caused it! And I found quite a few references to "idiopathic ulcerative colitis."
Status: Remission since May 2009!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Diagnosed with pancolitis on 1/30/09
Currently taking Apriso (4 0.375g pills ONCE!! daily), mesalamine enema twice weekly, Natural Factors Ultimate probiotic 12/12 Formula, and Zoloft (25 mg).


Rio in Maryland
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Date Joined Nov 2007
Total Posts : 891
   Posted 8/6/2009 12:45 PM (GMT -6)   
'Indeterminate colitis' maybe?
Rio, 33 year old male. Diagnosed with UC in 2006
Azathioprine (stopped), 4800 mg Asacol
VSL#3, Metamucil
Vitamin E enema or Canasa/Mesacol suppository occasionally


calm-on-the-outside
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Date Joined Aug 2009
Total Posts : 832
   Posted 8/6/2009 12:47 PM (GMT -6)   
I should've recorded my dr. visit...lol

He said from the biopsies he took...it is colitis but not UC, CD, etc. That I do have colitis (which if I am correct means inflammation in the colon) but is not UC or CD or the usual suspects.

It's not that they don't know the cause, b/c like you said fruitgirl, most of us don't know the cause. It's that they don't know the type of colitis that I have. Does that make sense? I see what you are saying with the cause...and the dr. told me that the cause of colitis is unclear but it's that they don't know my type.

calm-on-the-outside
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Date Joined Aug 2009
Total Posts : 832
   Posted 8/6/2009 12:49 PM (GMT -6)   
And I saw the reference to 'idiopathic ulcerative colitis' too...and that seems like an oxymoron. It's not idiopathic if it's UC...b/c then it's UC...not idiopathic! eeek, now I'm confused too!

quincy
Elite Member


Date Joined May 2003
Total Posts : 30587
   Posted 8/7/2009 2:14 AM (GMT -6)   
microscopic colitis?? (lymphocytic or collagenous)...?
*Heather* Status: ...Asacol 3 twice daily; Salofalk enemas every 2nd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 @ 2x daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(RenewLife Ultimate Flora Critical Care + Primadophilus Reuteri). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


thatfield
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Date Joined Jul 2008
Total Posts : 823
   Posted 8/7/2009 8:06 AM (GMT -6)   
Bleeding and mucos often comes from the ulcers caused by UC (hence Ulcerative Colitis), unless the blood is from hemmis or from irritation... Did he mention any ulcers from your scope? I got to keep a picture of my scope and even the untrained eye could see the area that was covered with ulcers...
Dx 2006 right after the birth of my daughter
Lialda 3 pills a day!
Canasa daily
Probiotics Daily
 


calm-on-the-outside
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Date Joined Aug 2009
Total Posts : 832
   Posted 8/7/2009 2:54 PM (GMT -6)   
no, he didn't say there were ulcers, he said it was very inflamed. BUT...he did say that there was a chance that if I had another scope in say 6 months that maybe the type could be determined. He said it def. was not Chrons but other that that it's a type of idiopathic (undetermined) colitis. And this was the surgeon who did the scope telling me this. And he sent my slides to one of the best pathologists to try to determine what I have and even he couldn't give an answer.

I go to my internal med dr on the 18th so I suppose I"ll be starting meds then

AmyWaffle
Regular Member


Date Joined Jun 2009
Total Posts : 173
   Posted 8/7/2009 3:17 PM (GMT -6)   
Idiopathic does not mean undetermined. It is just a characteristic that means no body knows what causes it. My doctor says it means the doctors are idiots and the patients are pathetic... that's how I remember it, lol.

And by the way, I DO record every doctor visit. I bought a little digital voice recorder at Target. I have sometimes been very surprised to listen to the visit again and hear stuff I swear I never heard the first time! I highly recommend it.
UC since 1996 (age 20)
Mommy of 2 sweet little girls.
My life is one big flare.

Asacol, Azathioprine, Prednisone, Rowasa
First Remicade 6/22/09


calm-on-the-outside
Veteran Member


Date Joined Aug 2009
Total Posts : 832
   Posted 8/7/2009 3:21 PM (GMT -6)   
so...should I get another scope done by a different doctor? Or are there really people out there who are having this colitis with no specific label?

katiewhalo
New Member


Date Joined Aug 2009
Total Posts : 1
   Posted 8/7/2009 3:29 PM (GMT -6)   
I am new here and just had a colonoscopy today. A few weeks ago I had a little mucous/blood in stool going on for about 8 days with a little cramping. Went to see gastro and he set me up for colonoscopy. I haven't had any blood/mucous since or before that 8 day event. So the results of my colonoscopy are indeterminate colitis. He showed me pics of some red spots (ulcers?) on the lower part of my colon (maybe rectum? I think that's what he said) and prescribed me antibiotics. He biopsied this area as well. Can y'all please help me with some insight into what this means? Any advice would really be appreciated!

jeanneac
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Date Joined Feb 2009
Total Posts : 1914
   Posted 8/7/2009 7:28 PM (GMT -6)   
calm on the outside, if you don't mind my asking, how old are you? Do you have any joint pain, rashes or any other autoimmune problems? How long have you been symptomatic? Perhaps over time your colitis will either go away (if you are lucky) or if you aren't lucky, it will have a more defined type. Good luck to you. This is a good forum with lots of experienced folks here.
diagnosed 1/09 with "diverticular colitis" ?? location, sigmoid colon
 50 +  female
 colazal, fish oil, synthroid, zoloft, VSL#3 probiotic.
Blood test positive for Crohn's for whatever that is worth-:)
 


calm-on-the-outside
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Date Joined Aug 2009
Total Posts : 832
   Posted 8/8/2009 10:57 AM (GMT -6)   
jeanneac...I am female, 32, no other health problems, never even had IBS or anything like it. I've had symptoms since April. My dad did have 2 autoimmune diseases (not bowel ones though) so that's why I had this checked out so quickly. Oh, and since my diagnosis, I found out that my grandad and 2 aunts had/have colitis. My grandads we don't know what type it was as he never wanted to do anything about it. I am going to try to talk to my Aunt asap...to see what type she has and what works for her.
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