Is the initial diagnosis always the diagnosis?

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AlabamaBabs
Regular Member


Date Joined Jul 2007
Total Posts : 172
   Posted 7/21/2008 5:36 PM (GMT -7)   
I'm just wondering......I was initially diagnosed with pancolitis as of March 2007.  When I went in for the flex sigmoidoscopy, my colon was fine--no ulcers and just a tiny little bit of mucous.   Now, I when I flare, it's soreness in my bum.  Is my diagnosis still pancolitis or just the rectum part??
AlabamaBabs
Pancolitis diagnosed 5/07 
4 Lialda/day since 8/01/07
Canasa suppositories 1000mg, as needed
Cortenemas, as needed
 


bellski
Regular Member


Date Joined Apr 2008
Total Posts : 499
   Posted 7/21/2008 5:59 PM (GMT -7)   
I wonder if the original diagnosis was incorrect. I am not sure, but look forward to hearing the answer. Well it is good news that the flex sig showed a good looking colon. Isn't that a great feeling. Good luck to you!
Lori (Bellski)-age 43 from Illinois
Diagnosed February 2008 with Ulcerative Proctitis,
Currently: mild symptoms / flare ?
Medications:  Asacol 400mg X 6, Canasa X 2 
Vitamins:  Calcium 600 + D X 2, Centrum, Citrucel caplets, Probiotics
High fiber diet
"I thank God that  I found this website!"
 


kazygirl
Veteran Member


Date Joined Sep 2007
Total Posts : 955
   Posted 7/21/2008 7:09 PM (GMT -7)   
my original diagnosis was different to what i have now.
i started with ulcerative proctitis... limited to the first 20 cm's from the bum.

now i have pancolitis which is the whole darn thing.

i was told it doesnt spread, BUT.. i guess when i was diagnosed it wasn't a big big flare like it is now.
maybe i always had pancolitis, but not when i had my first c-scope

so i guess YES, the diagnosis can change as it has in my case
steph - 32 - female - UC since 2000
currently flaring again..  grrr! (triggered by stress - grrr)
mesalazine granules 3g x1 a day (much nicer than a million tablets a day)
enteric coated fish oil -omega 3 (so they get all the way to my colon)
vitamin D3 x1 a day
prednisolone 25mg x1 a day (ick ick and did i say ick?)
tumeric capsules x3 a day
 
 
 


bellski
Regular Member


Date Joined Apr 2008
Total Posts : 499
   Posted 7/21/2008 7:36 PM (GMT -7)   
kazygirl, I am surprised they told you it doesn't spread. I am under the impression that it usually progresses. It start with Ulcerative proctitis (rectum area) and moves on unless you are real lucky. I think my doctor says 30% of UP might not progress. It sounds like Alabama had a worse diagnosis the first time and a lesser one the second. My guess is maybe she is in some type of remission. I have no idea, I wish no one had to deal with this frustrating disease.
Lori (Bellski)-age 43 from Illinois
Diagnosed February 2008 with Ulcerative Proctitis,
Currently: mild symptoms / flare ?
Medications:  Asacol 400mg X 6, Canasa X 2 
Vitamins:  Calcium 600 + D X 2, Centrum, Citrucel caplets, Probiotics
High fiber diet
"I thank God that  I found this website!"
 


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23551
   Posted 7/21/2008 8:31 PM (GMT -7)   
It depends on a couple of factors if it's going to progress or not such as genetics and medication compliance. Just because you were diagnosed with UP, doesn't necessarily mean it will progress beyond the rectum or for left sided to advance to Pancolitis. As for the diagnosis and disease location - if you were to be diagnosed with Pancolitis, heal and flare later down the line lets say to the left side. You still have Pancolitis but only with left sided involvement. The location of the disease just lets you and the docs know that your colon has that potential of being inflammed to that area again. I was originally diagnosed with UP but over the years it has progressed to left sided. When I flare, it's mostly rectal now but I am still classified as being one with left sided.


 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs), Hydrocortisone E's, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Allegra
~Secondary Reynauds Syndrome-'04-Norvasc~Spinal Stenosis~Sacroiliitis-epidural injections~bulging and herniated discs C5,C6&C7~2nd epidural injection 8/14
To help Healingwell - click here: DONATE
 
 
 
 

 
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30067
   Posted 7/21/2008 10:06 PM (GMT -7)   
Ditto Red....
As well, rememeber that UC starts at the rectum upward...heals downward to the rectum.

AB....You're in an early flare.....make sure you're on the rectal meds.

I'm sure that if your whole colon was involved, it would have been obvious.

A flex sig cannot allow the doc to see what's above its limitations, but based on the fact that you have been properly diagnosed with Ulcerative pancolitis, it's assumed that above the flex sig will be clear.
You'll have the potential to have it all flare again...let's say if you stopped the Lialda.

quincy
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~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 !!!


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 7/22/2008 9:12 AM (GMT -7)   
i believe my last flare gave me pancolitis, that I would have stayed w/proctosigmoiditis, if I did not stop my meds cold turkey.

It does make sense w/pancolitis that part of our colon would flare not necessarily the whole thing and if you catch a flare early that might help too???
Beth, 32 ~ hoping to taper pred successfully, wish me luck!
Major Flare Sept/Oct 07
UC dx'd 03/00 (Proctosigmoiditis); Pancolitis since 09/07
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Prilosec, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd 09/07 - partial remission since 03/08
Prednisone 30mg 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Tekturna 300mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your blood protien level!
 


AlabamaBabs
Regular Member


Date Joined Jul 2007
Total Posts : 172
   Posted 7/22/2008 4:58 PM (GMT -7)   
Yes! You are all making sense.
I did call the GI nurse today and she confirmed what you all are saying, too. She said, " you were diagnosed with pancolitis and that remains, but you are better and don't have the inflammation all over the colon, it is much better." She said I will always be pancolitis, like Sherry mentioned--the potential to have inflammation in the entire colon. Bellski, you are correct and Sherry hit the nail on the head, too. That explains why my recent flares are in the lower areas/rectum and if not tackled, will go back to the entire area. I am so very thankful that the colon has healed so well and quickly. I can only hope the same for many that are on the board.

Quincy, I remember you responding to a post awhile back and learning from that that the flare starts in the rectum. That makes a lot of sense and I am well stocked with cortenemas and canasa, now! I'd like to add the cortiform to the arsenol, one of these days. I am staying on Lialda. GI said I could go down to 3 vs. 4/day, so I have started trying that, although psychologically, my mind thinks the more meds, the less flares. And, I 'm still 'tinkering' with the idea of changing meds (only with GI doctor blessing) to get a smaller pill, but the area that it dissolves in is the kicker, as you and others on another post recommended me looking into. The GI doc says Lialda is the medicene for me. That speaks volumes to me, believe me!
AlabamaBabs
Pancolitis diagnosed 5/07 
4 Lialda/day since 8/01/07
Canasa suppositories 1000mg, as needed
Cortenemas, as needed
 


Mommy pooh
Regular Member


Date Joined Apr 2008
Total Posts : 131
   Posted 7/22/2008 6:29 PM (GMT -7)   
  Great thread.  I was wondering the same thing.  I was never told any specifics except that my inflamation was ulcerative colitis.  I have learned so much from terms everyone uses on here.  I saw a specialist on Monday and he went over my colonoscopies from 2004 and 2007.  He thinks I actually might have Crohns but said there's no way to be sure right now.  He said my first colonoscopy showed spots of inflamation and then areas of healthy tissue which is how Crons looks not usually UC.  I never even knew this!  My GI never talked about this to me.  However, my colonoscopy and flex sig in 2007 showed lots of inflamation at the end of the colon.  I don't know what to think now.  So, no I guess initial diagnosis is not always the diagnosis forever.

  • 25 years old, married, Mommy to 18 mo. old 
  • Ulcerative Colitis since Sept. 2004
    • 1st flare Sept-Nov 2004
    • 2nd flare Aug. 2007-July 08 feeling better every day
  • Currently taking:75mg 6MP, 4 Lialda, Digestive Advantage Chrons/Colitis, Women's One a Day, Loestrin 24, and allergy shots every other week
  • Past meds: Pred., Entocort, Dipentum, and Canassa

 


Hans C
Regular Member


Date Joined Dec 2006
Total Posts : 89
   Posted 7/23/2008 5:26 AM (GMT -7)   
So is it the case that early intervention (like with a steroid enema) while a flare is still based in the rectum area can prevent the flare from progressing up the colon?
age 26  ------------- diagnosed 2004 (probable left sided)

Multi-vitamin                                       Lactobacillus acidophillus sachets
Aloe vera - Omega3 fish oil                    Asacol (8x400mg)                     
Iron, folic acid and b12 supplement__________________________________________________ 


Kiss520
Veteran Member


Date Joined Jun 2008
Total Posts : 742
   Posted 7/23/2008 5:35 AM (GMT -7)   
I've often wondering if my proctitis dx was correct. I would think it would take longer for food to have a have an effect on me, because the inflammation would be so low (if it is proctitis). But for me, I sometimes have immediate reactions. I asked one of my gastro docs about my colonoscopy, and (you're not going to believe this) he actually told me that once they saw the inflammation in the rectum, they didn't go up any higher to inspect. I was like, "What?? I was unconscious and did all this awful prep pooping and you didn't bother to look any further????" I still don't understand his rationale for doing that, but that's what he said.
Katie, 30.   Chicago 'burbs.
DX:  Ulcerative Proctitis (10cm) January '08
Current Treament:  Rowasa 60 ML 2X daily, Cortenama 100 ML 1X daily, Bentyl 20 MG (as needed).
Diet/Exercise:  Trying sunflower seed thing.  Daily yoga, walking, or cardio w/weights.
Previous Treatment:  Canasa suppositories, Cortifoam, Prednisone, Colazal, Symex DuoTabs, Vitamins.
Status:  Showing improvement after a few days with sunflower seeds.
 
 


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23551
   Posted 7/23/2008 6:12 AM (GMT -7)   
Hans, not necessarily. Med compliance is usually vital in order to maintain an equal balance in the colon and prevent inflammation. But advancement can also be genetic. Some people who are not med compliant and are diagnosed with proctitis may never have more then that while others can be strict about their med regimine but end up having it spread thru out their colon. There is no guarantee that your disease position is going to stay that way or not.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs), Hydrocortisone E's, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Allegra
~Secondary Reynauds Syndrome-'04-Norvasc~Spinal Stenosis~Sacroiliitis-epidural injections~bulging and herniated discs C5,C6&C7~2nd epidural injection 8/14
To help Healingwell - click here: DONATE
 
 
 
 

 
 


love4cats
Regular Member


Date Joined May 2007
Total Posts : 458
   Posted 7/23/2008 6:35 AM (GMT -7)   
When talking to my GI about the future, he said it depends on the person, some it doesn't spread and some it can, so no guarantees.
 
 
Dx:  UC Proctitis 2006 
Meds:  None so far. Garlic works to ease flares. My GI laughed when I told him and said it was just coincidence. 
Started Meds:  Apr 9 08 500mg 5ASA (salofalk) to ease flare, tapering, stopped. 
Diet:  Regular fresh garlic, Biobest yogurt daily, Omega 3 supplements, very limited junk food, carbs and processed food, low fat diet.  Lots of fresh fruit and veggies (limited potatoes). 
 Added: tumeric and probiotics.
 
 


lambkins
Veteran Member


Date Joined May 2008
Total Posts : 574
   Posted 7/23/2008 8:08 AM (GMT -7)   
Just got back from consultant where he told me that my colon was effected 70% instead of the 50% he first thought it was a bit of a shock so i would say first dx is not always the right one sad
  
  Diagnosed 22.5.08 with Lft sided U/C
  Meds Predfoam 20mg 2x day stopped started Salofalk supps 1gm 26/6/08
  Mesalazine 400mg 2 tabsx2 day


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 7/23/2008 8:14 AM (GMT -7)   
I think it must also depend on the GI. B/c I saw an adult GI once and he said I had left-sided UC. But my regular peds GI told me I have pancolitis.
Female, Age 19, Dx w/ UC August 2007
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis), 1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (2nd infusion 06/26/08), 2.4 g Lialda, 1 Forvia, 9 Colazal/day
*exploring the option of surgery
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30067
   Posted 7/24/2008 1:31 AM (GMT -7)   
I think the question focus is if one is originally diagnosed with ulcerative pancolitis (complete colon involvement)...is that always the "diagnosis"?

In one word ... yes...healing doesn't make the disease cured from the original site. It can be controlled, however having flares limited to the lower part of the rectum....being a current status rather than a new diagnosis.

UC can spread from an original diagnosis site if it's limited....not for all, but for many.

There are many with an original UC diagnosis where it's eventually changed to CD. That's because of a misdiagnosis where the CD mimics the pattern of UC...especially in the early stages....until it becomes more advanced it seems to be more obvious.
I must also point out that some doctors aren't good doctors.
Some patients misunderstand the diagnositc term "colitis"...assuming it's UC.

There are also other bowel infections and diseases that mimic UC...one can have UC with other infection or disease..so, for some, diagnosis can definitely change..

q
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~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 !!!

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