How likely is that Proctitis will spread?

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qwerty1
Regular Member


Date Joined Feb 2009
Total Posts : 402
   Posted 3/24/2009 9:35 AM (GMT -6)   
...just wondered because alot of you on here seem to have begun with Proctitis and then have ended up with the inflammation spreading all throughout the colon/Pancolitis. I have had severe Proctitis (now healing woohoo!) and mild to moderate inflammation in the sigmoid and am just wondering if its likely to spread or not. Although I know everyone is different...! 
22 year old female, from the UK.
 
Diagnosed with Ulcerative Proctitis Jan '08, Proctosigmoiditis Jan '09.
Hospitalised Jan '09 for IV Hydrocortisone - had no effect!
Hospitalised Feb '09 for a week of IV Hydrocortisone.
  
Currently taking daily: 
20mg Prednisolone tablets (tapering)
5mg Prednisolone suppositories x 1
1g Acetarsol suppositories x 1 (soon to change to Acetarsol)
1g Mesalazine granules x 2
Vitamins A,C,D 
                             
                             


Red_34
Elite Member


Date Joined Apr 2004
Total Posts : 23551
   Posted 3/24/2009 9:46 AM (GMT -6)   
Sorry Qwerty but we can't possibly know :( Some can have Proctitis their entire life with no spread and some can have Proctitis for a few months and have it spread to Pancolitis.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
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PinkPaperclip
Regular Member


Date Joined Mar 2009
Total Posts : 108
   Posted 3/24/2009 10:06 AM (GMT -6)   
This question made me realise that it might not necessarily be less "serious" or easier to manage to only have proctitis vs pancolitis... Pancolitis can shrink and proctitis can spread and all of this is totally out of our control... Even with surgery , when you get the sick part of your colon removed (if it's not pancolitis) your colon could still get attacked somewhere else ?
Diagnosed with pancolitis 19/03/09
Prednisone 40 mg, Mezavant 4.6g
 


Red_34
Elite Member


Date Joined Apr 2004
Total Posts : 23551
   Posted 3/24/2009 10:13 AM (GMT -6)   
Pinkpaperclip, when they perform surgery for people with Uc, they do not leave any of the large intestine for the very fact that it will just attack the remaining portion. That is why they take out the whole thing in surgery.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3 epidural injections-second series starts 2/17, OA in my fingers -Celebrex, Tylonel Arthritis and Voltaren Gel
To help Healingwell - click here: DONATE
 
 
 
 

 
 


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 3/24/2009 10:17 AM (GMT -6)   
Pinkpaperclip, my doctor said that the "seriousness" of this disease, in his mind, isn't really related to how much of the colon is affected, but rather the symptoms the patient is experiencing. My colonoscopy showed pancolitis, but he said someone with just a few inches of affected area could have as bad of symptoms as I did (and I was having 15-20 BMs/day with severe urgency). The "good" thing about proctitis is that the rectal meds, which are better at healing inflammation than oral meds, can reach the entire affected area, which just isn't possible in pancolitis.
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Eased for ~3 weeks in December, possibly b/c of probiotic use?
Returned in January 2009 (with a vengeance), diagnosed with pancolitis on January 30.
Currently taking Asacol (400mg 4 pills 3x daily), Rowasa nightly, 40mg 30mg of Prednisone (quick taper), Culturelle probiotic, and Zoloft (25 mg).


PinkPaperclip
Regular Member


Date Joined Mar 2009
Total Posts : 108
   Posted 3/24/2009 10:18 AM (GMT -6)   
Red_34 said...
Pinkpaperclip, when they perform surgery for people with Uc, they do not leave any of the large intestine for the very fact that it will just attack the remaining portion. That is why they take out the whole thing in surgery.

Oh! Maybe it's different in Qu├ębec? Here they try to remove the sick part at first, they won't remove everything if you have good parts left in your guts...
 
Well that's what I read in the documents my GI gave me when I was diagnosed.. Maybe it's the theorical approach and then you get into surgery and they remove the whole thing without even telling you.. I mean when I went for my colonoscopy they had me set up for a gastroscopy! I told the nurse "why do you have to check both ends today??" lol
Diagnosed with pancolitis 19/03/09
Prednisone 40 mg, Mezavant 4.6g
 


qwerty1
Regular Member


Date Joined Feb 2009
Total Posts : 402
   Posted 3/24/2009 11:14 AM (GMT -6)   
fruitgirl said...
Pinkpaperclip, my doctor said that the "seriousness" of this disease, in his mind, isn't really related to how much of the colon is affected, but rather the symptoms the patient is experiencing. My colonoscopy showed pancolitis, but he said someone with just a few inches of affected area could have as bad of symptoms as I did (and I was having 15-20 BMs/day with severe urgency). The "good" thing about proctitis is that the rectal meds, which are better at healing inflammation than oral meds, can reach the entire affected area, which just isn't possible in pancolitis.

 Thankyou for this comment fruitgirl...not even my consultant thinks that proctitis necessarily affects your health in any big way. You may have read a thread I posted yesterday about him basically saying I shouldn't be feeling THAT ill with it, even though I quite clearly am! I think quite often though it seems the more intestine infected then the worse the symptoms, but as you've just said here thats certainly not always the case and everyone is different. :)
 
 
 
 
22 year old female, from the UK.
 
Diagnosed with Ulcerative Proctitis Jan '08, Proctosigmoiditis Jan '09.
Hospitalised Jan '09 for IV Hydrocortisone - had no effect!
Hospitalised Feb '09 for a week of IV Hydrocortisone.
  
Currently taking daily: 
20mg Prednisolone tablets (tapering)
5mg Prednisolone suppositories x 1
1g Acetarsol suppositories x 1 (soon to change to Acetarsol)
1g Mesalazine granules x 2
Vitamins A,C,D 
                             
                             


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 3/24/2009 11:25 AM (GMT -6)   
I've had proctosigmoiditis since 2001, and it's never advanced. For five years, I was one sick girl. I was going anywhere from 15-30 times a day, bleeding every day and feeling like everything I ate turned into Brillo pads in my colon. My GI said I was one of his hardest patients to get into remission.

How hard the disease is to control or how sick you feel isn't necessarily linked to the location. It does seem to me, just through my readings here, that people with pancolitis may have more trouble with weight loss and severe pain, but I'm not even sure of that.

And the recommended surgery for UC is total removal of the colon. People with Crohn's do have partial resections, removing only the affected part of the GI tract.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
"My life is an ongoing medical adventure"
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 3/24/2009 11:35 AM (GMT -6)   
Judy, I've lost a LOT of weight (I'm currently 20 lbs below my pre-pregnancy weight), so that part holds true for me, but I've had essentially no pain....just a little bit of cramping. My GI didn't even feel my belly at my last appointment, because he said "I can push really hard and it never hurts." I think he thinks it's a bit strange I don't have pain, either!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Eased for ~3 weeks in December, possibly b/c of probiotic use?
Returned in January 2009 (with a vengeance), diagnosed with pancolitis on January 30.
Currently taking Asacol (400mg 4 pills 3x daily), Rowasa nightly, 40mg 30mg of Prednisone (quick taper), Culturelle probiotic, and Zoloft (25 mg).


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 3/24/2009 11:43 AM (GMT -6)   
It's funny how it affects us differently, isn't it? I didn't have pain for about the first year, then started having more, but it never got to be severe. Others have debilitating pain. My theory is that it has to do with how much the inflammation stretches areas that are rich in pain nerves, such as the omentum (the thin membrane that attaches to the colon throughout and helps hold it in place.)
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
"My life is an ongoing medical adventure"
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 3/24/2009 1:10 PM (GMT -6)   
It is really odd how different our symptoms can be! Sometimes I think I'd rather have pain than the severe urgency I have, but the at other times, I'm not so sure!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Eased for ~3 weeks in December, possibly b/c of probiotic use?
Returned in January 2009 (with a vengeance), diagnosed with pancolitis on January 30.
Currently taking Asacol (400mg 4 pills 3x daily), Rowasa nightly, 40mg 30mg of Prednisone (quick taper), Culturelle probiotic, and Zoloft (25 mg).


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 3/24/2009 1:23 PM (GMT -6)   

     Fruitgirl, my symptoms are very similar to yours.  I was diagnosed with UC in October of 1998.  Thank God, it has never traveled past the rectum, although the CT scan showed inflamation throughout the colon when I was admitted to the hospital last May.  However, six days later, when they performed the colonoscopy, low and behold, there was only ulcerations in the rectum and NOT throughout the colon.  Weird huh?

     My GI doctor explained to me that even though the UC is confined to my rectum, it can make me feel miserable and how right he is.  The UC in the rectum is supposedly the easiest to treat too.  I find the Cort enemas help immensely.  At the moment I am in remission...I say at the moment because I never know when a flare will start.  Usually this time of year is my worse, but keeping my fingers crossed for now.  As soon as my rectum feels a little funky...spastic or whatever, I stick one of those cort enemas up there to let it know who is boss.  This seems to help.

     I went to a GI surgeon last summer and he was of the opinion that the 6MP is helping in keeping the UC confined to the rectal area.  Eh, who knows?


62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Update 11/03/08...finally in remission!!  Hope I don't jinx myself.  Off the prednisone since 11/01/08...now see if I can stay off for longer than two weeks.  Other meds: 6MP (75 mgm), colazal (6 per day), Benicar and Toprol (high blood pressure meds), Probiotic (2 per day), fish oil capsule and multi-vitamin and calcium with vitamin D.


Shelliesv
Regular Member


Date Joined Apr 2009
Total Posts : 208
   Posted 4/5/2009 1:06 AM (GMT -6)   
I was diagnosed with proctitis at 24 and I believe my GI said I had a 35% chance of developing colitis. Four years later I was diagnosed with left-sided UC.
It's been almost 10 years since then and my UC is still left-sided.
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