Non Specific Colitis

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LondonRed
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Date Joined Oct 2007
Total Posts : 784
   Posted 11/12/2007 4:18 PM (GMT -6)   
What does this mean? Is it UC?

Current Diagnosis in October 2007: Colitis (Mild inflammation on Rectum, Right and Left side of Colon)                                 

Medication Prescribed: 800mg Mesalazine (Asacol) x 3  

Symptoms: Two or Three BM's a day, moderate urgency, no diarrhea or constipation, irregular stool pattern due to IBS, no other symptoms (minor Bleeding stopped after taking Metronidazol and Asacol for 10 days). Also suffer from hyperchondria, anxiety and stress.


quincy
Elite Member


Date Joined May 2003
Total Posts : 25716
   Posted 11/12/2007 8:56 PM (GMT -6)   
It means it doesn't fit into a specific diagnostic category.

I found this that has categories listed....
 
 
q


*Heather*Status:mini flare June 23* 6asacol daily+ Salofalk (tapered every 4th night)
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals 
~Probiotic 2 (Natural Factors Protec) + 1 (Primadophilus Reuteri) at bedtime
~Natural Factors Multi Digestive Enzymes with supper
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


tru-believer
Regular Member


Date Joined Dec 2006
Total Posts : 329
   Posted 11/12/2007 9:07 PM (GMT -6)   
 
   It means the doctors cant come up with a specific
   reason (etiology) as to  --why you have it.  Only
   that it is there,  can be suppressed with drug company
   sanctioned treatments, and symptoms can go into
   remission, but are likely to return at some point.
 
   Most doctors wouldnt even consider what you
   are allowing to get into your body over the long term
   as a factor, but more than likely- colitis is a reaction
   to diet, environmental factors and loss of immunity.

LondonRed
Veteran Member


Date Joined Oct 2007
Total Posts : 784
   Posted 11/13/2007 12:16 AM (GMT -6)   
Thanks for that guys. But doesn't that apply to all forms Colitis? I mean noone knows why colitis in whatever form happens do they?

Does non specific colitis mean it is UC? Or something else?

I am just so confused.

quincy
Elite Member


Date Joined May 2003
Total Posts : 25716
   Posted 11/13/2007 1:08 AM (GMT -6)   
It's NOT UC as the doctors see it because it doesn't fit the clinical "criteria"....UC is usually diagnosed after the process of elimination, UC would probably be suspect if obvious, but other factors would/should firstly be ruled out.

There's a term indeterminent colitis....which means it's either UC or CD (which is following the same pattern as UC). Wishy-washy, but definitely one or the other.

Just to let you know that some people do call ulcerative colitis...colitis. The foundations for support are called the Crohn's and Colitis....meaning Ulcerative Colitis. There are also other people who have had colitis and automatically assume it's UC..albeit incorrectly.

Colitis....with a small c is a general clinical term meaning inflammation in the colon.

Non-specific means it's not determined....although obvious there's inflammation or chronic inflammation....there's not an obvious reason why because it doesn't fit in any of the known categories they test for.

Does that make sense....or if not...enquire as to what exactly you're not clear on.

Is this pertaining to your diagnosis..non-diagnosis? or just questioning in general?

Did you check out the site I posted?
quincy
*Heather*Status:mini flare June 23* 6asacol daily+ Salofalk (tapered every 4th night)
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals 
~Probiotic 2 (Natural Factors Protec) + 1 (Primadophilus Reuteri) at bedtime
~Natural Factors Multi Digestive Enzymes with supper
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


LondonRed
Veteran Member


Date Joined Oct 2007
Total Posts : 784
   Posted 11/13/2007 4:16 AM (GMT -6)   
Quincy you sure know your stuff. Right here goes.
 
3 months ago I had a Flexible Sigmoidoscopy which showed "non specific colitis" and the private GI discharged me after seeing the biospies saying it was an antibiotic induced episode that will clear up in time and it was not IBD.
Well it didn't clear up and I continued to bleed although mildly. I then looked for and found a top GI / Colorectal Surgean in London who suggested I do a Colonoscopy to get to the bottom of it.... he found "sore" inflammation and said I might have IBD but he needed to see the biospies.
He then checked over the biopsies, did TWO further blood tests for which he said he was looking for markers for Chrohn's and Colitis. Now they have come back all normal so he has disgnosed "colitis" with a small "c" of a "non specific nature".
 
I was given Flagyl which I have now finished, and am taking Asacol every day - the bleeding stopped after a few days. I feel much better but maybe I have lost a few pounds but I guess that is more down to the non stop anxiety at not knowing what I have.
 
The GI said to me "I think you are much better already, you are clinically healthy according to pathology but we don't know how these things will pan out so come and see me in 3 months and we will have another chat, so far I am very pleased with everything".
 
So do I have UC, Chrohn's or as he says "mild inflammation of the colon which is not determined". I guess the unknown is scary and seeing how people are suffering on here makes me wonder if I will be really ill one day. God willing it won't happen and I will be better.
 
I saw your article which has confused me even more as I could be any one of those and some of them seem curable.

Current Diagnosis in October 2007: Colitis (Mild inflammation on Rectum, Right and Left side of Colon)                                 

Medication Prescribed: 800mg Mesalazine (Asacol) x 3  

Symptoms: Two or Three BM's a day, moderate urgency, no diarrhea or constipation, irregular stool pattern due to IBS, no other symptoms (minor Bleeding stopped after taking Metronidazol and Asacol for 10 days). Also suffer from hyperchondria, anxiety and stress.


Msterra34
Regular Member


Date Joined Oct 2007
Total Posts : 29
   Posted 11/13/2007 2:48 PM (GMT -6)   
Same with me...just diagnosed with colitis- but food poisoning brought mine on. I was given Immodium and that stopped the infection I had up and I had two more occurences in which I bled (mucous etc.) and lost 15 lbs. I have had normal bowel movements, been eating pizza etc. for the last 2 weeks- so I am hoping and praying it is okay now. I also took Flagyl (hated it) and asacol for weeks.
**********************
Terri D. (34)
Toprol XL 25mg a day for rapid HB
L5-S1 disc rupture in 2004
Thyroid nodules and levels swing in and out:(


quincy
Elite Member


Date Joined May 2003
Total Posts : 25716
   Posted 11/13/2007 3:16 PM (GMT -6)   
LR.....I don't think the marker tests for IBD are conclusive...

The fact that you're not diagnosed yet is OK....and you're being monitored...that's a perfect scenario.

Do research on marker tests for IBD and see what you come up with. That will help you formulate questions where you can have answers you can live with.

Not everything is conclusive in life....some things are a wait and see. IBD is difficult to diagnose because not everyone presents in way that's obvious to the criteria. The subjective aspect of a formula does change.

I will question you on one thing.....what exactly is it you expect? And will that expectation give you total piece of mind?

quincy
*Heather*Status:mini flare June 23* 6asacol daily+ Salofalk (tapered every 4th night)
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals 
~Probiotic 2 (Natural Factors Protec) + 1 (Primadophilus Reuteri) at bedtime
~Natural Factors Multi Digestive Enzymes with supper
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 17900
   Posted 11/13/2007 4:01 PM (GMT -6)   
There are a couple of things a good GI will look for to try and better determine whether one is dealing with UC or CD (specifically crohns-colitis)...

With UC the inflammation is limited to the entire area and surfaceable only and only involves the colon/rectom...

With crohns (crohns-colitis), there will be skipped patterns of inflammation with healthy tissue inbetween inflammed/disease tissue, also the inflammation can go deeper into the intestinal lining (unlike UC where it remains on the surface)...deeper penetration can lead to fistulas, something UCers don't experinace but is more common for CDers (although not every CDer experiances them either).

Ask your doc exactly what kind of inflammation he saw.


:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


LondonRed
Veteran Member


Date Joined Oct 2007
Total Posts : 784
   Posted 11/14/2007 2:40 AM (GMT -6)   
Quincy said: what exactly is it you expect? And will that expectation give you total piece of mind?

I have had IBS for many years (anxiety induced BM's, soft unformed stools but never really total diarrhoea or total constipation) so it is difficult to check my stools as a sympton.

I feel totally well so I was hoping to God that my Colitis is not UC but of the standard kind that came about from taking antibiotics or having a bacterial episode. After now taking Asacol for 3 weeks and Metronidazol for 2 weeks my stools are normal, BM's 2 or 3 times a day and I feel great. God willing the GI will see me and say "it's over, you are fine". That's what will give me piece of mind - the news every one of you wonderful people want to hear.
 
 
PB4 said: Ask your doc exactly what kind of inflammation he saw.
 
I have already asked him and seen the pictures, it was patchy inflammation which is like what you see for Chrohn's. However the key markers on pathology (2 sets of blood tests and a full set of biopsies) came up negative.
 
Also my lack of key symptoms and bleeding being the only symptom meant he diagnosed colitis with a small "c" and said it is a case of "wait and see" but he said "i think you are better already with the drugs but nothing is certain with this kind of problem."
 
And this is why I am here, in limbo, feeling well, no longer bleeding, mild urgency 3 times a day, and my doctor been sent a letter by GI stating "Mild patchy Inflammation, pathology checked, diagnosis: colitis of a non specific kind, 5ASA treatment prescribed as course of action"
 
So in 2 months time I will go back and see him, God willing my bleeding will still be gone, then what? This is what does my head in, not knowing how it will pan out.


Current Diagnosis in October 2007: Colitis (Mild inflammation on Rectum, Right and Left side of Colon)                                 

Medication Prescribed: 800mg Mesalazine (Asacol) x 3  

Symptoms: Two or Three BM's a day, moderate urgency, no diarrhea or constipation, irregular stool pattern due to IBS, no other symptoms (minor Bleeding stopped after taking Metronidazol and Asacol for 10 days). Also suffer from hyperchondria, anxiety and stress.

Post Edited (LondonRed) : 11/14/2007 12:44:22 AM (GMT-7)


quincy
Elite Member


Date Joined May 2003
Total Posts : 25716
   Posted 11/14/2007 5:09 AM (GMT -6)   
LR...if it's any consolation, many of us are in the same boat regarding not knowing how things will pan out....and we KNOW what we have.

When is your next c-scope...or blood tests..etc?

q
*Heather*Status:mini flare June 23* 6asacol daily+ Salofalk (tapered every 4th night)
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals 
~Probiotic 2 (Natural Factors Protec) + 1 (Primadophilus Reuteri) at bedtime
~Natural Factors Multi Digestive Enzymes with supper
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


LondonRed
Veteran Member


Date Joined Oct 2007
Total Posts : 784
   Posted 11/14/2007 5:20 AM (GMT -6)   
There are no scopes or blood tests planned, I guess he will do them when I see him again in 2 months.

I think he will check again for inflammation markers on blood tests in 3 months but they are clear even now so I don't know what he is clooking for.

I guess he is taking his time, waiting to see if it clears up or if it is IBD.

Current Diagnosis in October 2007: Colitis (Mild inflammation on Rectum, Right and Left side of Colon)                                 

Medication Prescribed: 800mg Mesalazine (Asacol) x 3  

Symptoms: Two or Three BM's a day, moderate urgency, no diarrhea or constipation, irregular stool pattern due to IBS, no other symptoms (minor Bleeding stopped after taking Metronidazol and Asacol for 10 days). Also suffer from hyperchondria, anxiety and stress.


quincy
Elite Member


Date Joined May 2003
Total Posts : 25716
   Posted 11/14/2007 5:26 AM (GMT -6)   
Ah, makes sense Do you have a list of the blood tests he's been taking?

q
*Heather*Status:mini flare June 23* 6asacol daily+ Salofalk (tapered every 4th night)
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals 
~Probiotic 2 (Natural Factors Protec) + 1 (Primadophilus Reuteri) at bedtime
~Natural Factors Multi Digestive Enzymes with supper
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


LondonRed
Veteran Member


Date Joined Oct 2007
Total Posts : 784
   Posted 11/14/2007 6:21 AM (GMT -6)   
I don't have a list no, but he has done 3 sets of them.. from what I know he checked for.

1. Bacteria and Fungus
2. Chrohn's Markers
3. Further inflammation in body

All came back normal, the only thing he has seen is visible inflammation across my colon which he hopes will clear up with 5ASA and Antibiotic.

So I don't know what is next.

Current Diagnosis in October 2007: Colitis (Mild inflammation on Rectum, Right and Left side of Colon)                                 

Medication Prescribed: 800mg Mesalazine (Asacol) x 3  

Symptoms: Two or Three BM's a day, moderate urgency, no diarrhea or constipation, irregular stool pattern due to IBS, no other symptoms (minor Bleeding stopped after taking Metronidazol and Asacol for 10 days). Also suffer from hyperchondria, anxiety and stress.


LondonRed
Veteran Member


Date Joined Oct 2007
Total Posts : 784
   Posted 11/15/2007 5:47 PM (GMT -6)   
Today I got this reponse by e-mail from my GP after I asked him for an explanation.

"With regards specific diagnosis, I am afraid as the histopathologist who looked at your specimen under his/her microscope could not be definitive, the best we can say is you have a none specific colitis.

Glad however that with treatment this seems to have settled.How long you will need to take treatment is open to speculation as a precise cause has not been found. I would imagine that if the symptoms remain settled for a number of months your consultant may suggest a trial without treatment.

Hope this helps."

___________________

Non Specific colitis it is then, for now.

Current Diagnosis in October 2007: Colitis (Mild inflammation on Rectum, Right and Left side of Colon)                                 

Medication Prescribed: 800mg Mesalazine (Asacol) x 3  

Symptoms: Two or Three BM's a day, moderate urgency, no diarrhea or constipation, irregular stool pattern due to IBS, no other symptoms (minor Bleeding stopped after taking Metronidazol and Asacol for 10 days). Also suffer from hyperchondria, anxiety and stress.


quincy
Elite Member


Date Joined May 2003
Total Posts : 25716
   Posted 11/16/2007 3:24 AM (GMT -6)   
LR....it seems a good report from my perspective. I'm impressed your doc sent it to you. It's also good he's got you in mind for future treatment..or lack there of.

Just for clarification....did you mean to write GI instead of GP?

quincy
*Heather*Status:mini flare June 23* 6asacol daily+ Salofalk (tapered every 4th night)
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals 
~Probiotic 2 (Natural Factors Protec) + 1 (Primadophilus Reuteri) at bedtime
~Natural Factors Multi Digestive Enzymes with supper
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


LondonRed
Veteran Member


Date Joined Oct 2007
Total Posts : 784
   Posted 11/16/2007 4:32 AM (GMT -6)   
quincy said...
LR....it seems a good report from my perspective. I'm impressed your doc sent it to you. It's also good he's got you in mind for future treatment..or lack there of.

Just for clarification....did you mean to write GI instead of GP?

quincy

I have spoken to the GI who said what I said in my first post. That email was from my GP who spoke with my GI to get a full report so he could explain it to me. They have been really helpful but it always seems to go back to what I was diagnosed to beging with Non Specific Colitis which could mean anything.
 
Thanks Q

Current Diagnosis in October 2007: Colitis (Mild inflammation on Rectum, Right and Left side of Colon)                                 

Medication Prescribed: 800mg Mesalazine (Asacol) x 3  

Symptoms: Two or Three BM's a day, moderate urgency, no diarrhea or constipation, irregular stool pattern due to IBS, no other symptoms (minor Bleeding stopped after taking Metronidazol and Asacol for 10 days). Also suffer from hyperchondria, anxiety and stress.


silent stream
New Member


Date Joined May 2009
Total Posts : 3
   Posted 6/4/2009 4:52 PM (GMT -6)   
I had gone to the doctor for with nausea, and I took a blood test and my ESR had shown that I had inflammation present.   I took a promethus test if was positive for C.D. I also had a colonoscopy and it show a little inflammation yesterday..do you I have C disease.

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 10270
   Posted 6/4/2009 5:16 PM (GMT -6)   
I have a similar situation. I was originally given a diagnosis of proctitis but in the notes from the biopsy it said something about it being ulcerative colitis. A year or so later I got a colonoscopy and I was told that I had "mild patchy inflammation". I have to call my doctor and get better details. It also said that my UC or colitis was "Inactive". I guess your condition when you get the biopsy changes the result you will get. The pathy inflamation thing makes me worry about Chrons. I also have cobbleing in my throat (I was told it's from allergies) and I have hemmroids (which people deny I have but I know I do), plus my backside tears and burns. Sorry for the graphic images. I might have Chrons. I don't even know anymore, and to be honest, I can't let myself get all nutty wondering what it is. I have come to terms with the fact that I am a hypocondriac more than anything else. I think I need treatment. This is partly why I haven't asked for copies of the biopsy reports because I know I will read too far into it and drive myself insane.
Diagnosed with mild proctitis in March 2007: Treated with Canasa (as needed)
December 08: Began treating with Asacol 400mg (9/day) + Canasa 2x/day - Anemic
May 09: Off Canasa, taking Asacol (9/day)
Back on Canasa every other night + Asacol (9/day) + Probiotics + Iron
Reducing to 6 Asacol/day + Canasa + Probiotics + Iron - So far so good!!! -SPOKE TOO SOON! Back to 9/day...


mysterytome
New Member


Date Joined Nov 2007
Total Posts : 4
   Posted 2/8/2011 9:46 PM (GMT -6)   
Hello. I am new to the forum. I am in the EXACT same boat as you. I have been trying to get a diagnosis for more than 10 years. I have had 6 colonoscopies, 2 sigmoidoscopies, numerous blood tests, including the promethius lab tests (which are negative). I have recurring episodes of left sided colitis, mainly limited to the sigmoid colon. I have patchy erythema, increased friability and in the worst attacks, ulceration. I have negative ANA's and have been tested for vasculitis and a host of other conditions. I have had multiple trips to the ER for bloody diarrhea and non-stop cramping that anti spasmotics won't even touch. My GI dr. said he's never had a case as mysteryous as mine. NOT COMFORTING. A Rheumatologist believes I have ankylosing spondylitis because I do have episodes of sacroilitis. I also have had episcleritis in my right eye and a few episodes of 1-3 mouth sores. I completely understand the want/need for a diagnosis. It would be nice to know what it is and if it can possibly affect other organs at some point. I am so sick of the term "non-specific" colitis! One Dr. swore it was intestinal endometriosis, so since I had fibroids and monthly migraines, I went ahead with a hysterectomy and oophrectomy. It didn't help. Another test showed celiac artery compression syndrome, so I had arcuate ligament release surgery, which resulted in an injured pancreas, atelectisis, pleural effusion and finally having my gallbladder removed. Guess what? I STILL have the colitis! I'm almost out of disposable body parts and the Stanford Dr. I just saw said that surgery was pretty much useless because it would only cause mesenteric ischemia and I did not have problems in the small bowel. He said my case was "interesting and complicated". That's all well and good, but I just want to know what "it" is! I am doing much better on Lialda, so he feels I do have UC and that even though previous Dr's saw no rectal involvement, there could be. He wants to do a sigmoidoscopy, but I can not afford the 300.00 deductable at this time, so will have to wait a little longer for a possible diagnosis. btw..he said the do NOT use the promethius lab tests as a diagnostic tool for IBD at Stanford university. And sometimes UC can appear to have skip lesions.
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