proctitis-is it possible to have it stay confined to the rectum only forever?

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maddi1
Regular Member


Date Joined Oct 2007
Total Posts : 22
   Posted 11/7/2007 12:01 PM (GMT -7)   
does anybody believe the stats on proc*** that the chances are good when dx that it will stay in the rectum only?
oct 2007 dx ulcerative proctitis. on canasa suppositories & cortifoam


expecting226
Regular Member


Date Joined Jul 2007
Total Posts : 402
   Posted 11/7/2007 12:31 PM (GMT -7)   
I have not researched the statistics on this, but my inflammation did not stay limited to the rectum. My initial diagnosis was proctitis, but it eventually spread to other parts of my colon and become UC.
Current Medications:
- Asacol (4 pills, 2x per day)
- Rowasa (1 enema daily, as needed)
- Folic Acid (1 mg, 1x per day)
- Calcium (600 mg, 2x per day)
- Prenatal Vitamin (1x per day)


tabitha m
Regular Member


Date Joined May 2007
Total Posts : 139
   Posted 11/7/2007 12:33 PM (GMT -7)   
Me neither, went from Proctitis to Pancolitis in 4 years .
Diagnosed Proctitis 2003
leaped to Pancolitis May 2007
bye bye Pred (fingerscrossed )!
2000mg pentasa a day
omega 3
Allergic to Sulphalizine
In remission since june
Multivitamin and calcium supplement
 
 


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 11/7/2007 12:58 PM (GMT -7)   
Apparently disease behaviour and activity has a genetic link as well so for some they never have UC affecting them past the rectom or even vise-versa...I would like to believe that so long as you nip it in the bud, eat healthy, exercise and use your meds you can keep it under some control, even get into remission and stay there for a long time...of course even while in remission you have to stay on the ball with proper diet and exercise and take a good probiotic.

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


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23549
   Posted 11/7/2007 1:06 PM (GMT -7)   
My UP turned into left sided UC in about 3 years of being diagnosed. But I wasn't faithful to my meds at that time either so I could've prevented that from happening if I took my meds. However that is no guarantee either that it would of stopped the progression. I guess it can be a crap shoot (no pun intended) that it can happen.
 @--->--SHERRY--<---@
Left sided Uc -'92 - Colazal, Canasa, 6mp, Prilosec, Biotin, Forvia, Pro-Bio 
Allergies - Singulair, Astelin(got the script - just haven't tried it yet!)
Secondary Reynauds Syndrome - '04 - Norvasc
Fibromyalgia - '06 
PLEASE HELP HEALINGWELL CONTINUE TO HELP OTHERS BY CLICKING HERE: DONATE
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PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 11/7/2007 1:11 PM (GMT -7)   
My husband was diagnosed with proctitis in March 2003. His disease is still confined to the rectum only, so it's still classified as proctitis. Of course, I know it could change any day because the course of this disease is just too unpredictable. I think all you can do is take the best possible care of yourself, keep stress down, and try not to worry about it, until it happens.
Husband with Ulcerative Proctitis
Diagnosed March 2003, 1st Flareup after diagnosis Apr 2006
Currently in Remission
Nightly 1000mg time release Canasa
Even though he has no symptoms, he's on VSL # 3 (1 packet daily) for prevention
Was on the SCD, but we stopped after 4 months of no symptoms - he's doing fine on a normal diet


maddi1
Regular Member


Date Joined Oct 2007
Total Posts : 22
   Posted 11/7/2007 5:18 PM (GMT -7)   

pv,

I have been meaning to ask you when your husband had his last flare you said that you did not caugh it in time and that you guys thought it was an infection.  What  made him think it was an infection versus a flare?  Also does the canasa give him any gas or d-?  I have been on canasa for 3 weeks with no problems.  Now I have been getting d- 3-4 hours after using canasa at night and some cramps.  It seems like I would have known from the get go if I could not tolerate canasa?  Any thoughts?  I am going to try to buy a youget maker.  What brand did you guys get.  I appreciate your help and suggestions.


oct 2007 dx ulcerative proctitis. on canasa suppositories & cortifoam


Trixy's Got Butt Trouble
Regular Member


Date Joined Jun 2007
Total Posts : 356
   Posted 11/7/2007 6:45 PM (GMT -7)   
dx with Proctitis and 3 months later dx with left sided colitis and a year later dx with pancolitis....I hate this disease!
Best Wishes,
Trixy (39)
dx Pancolitis, mild, w/more activity on left side & IBS
12 Asacol a day;
1 Rowasa at night during flare/1 a week during remission; Nexium & 1 Probiotic in the morning
UC manifesting to other organs: joints, eyes (Iritis) & skin (Erythema Nodusom)
Controlling w/MEDS & DIET (eliminating animal protein, white flour, sugar, dairy, eggs, & nightshade veggies)
Current Status:  Remission since May 2007


quincy
Elite Member


Date Joined May 2003
Total Posts : 29860
   Posted 11/8/2007 3:01 AM (GMT -7)   
I was diagnosed with ulcerative proctosigmoiditis...it's never been as bad as the original diagnosis....and as my last c-scope, only 5 cm was mildly inflamed.

I attribute it to the meds and how I've been using them.

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 !!!


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 11/8/2007 9:14 AM (GMT -7)   
in 2000 the uc affected the first 25cm of my colon in 2005 it affected the first 30cm of my colon. I did not always take my meds as I was supposed to not sure if that contributed.........also my GI seems to think it will not spread much farther, but reading other posts, I guess we will never be guaranteed, we can only hope.
Beth, 32
UC Diagnosed March 2000 (30 cenitmeters)
Azathioprine 150mg 1xday nightly;Remicade tests pending;Hydrocortisone enemas 1xday;Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Potassium 600mg 2xday, Probiotics.
Minimal Change Disease (Kidney Disorder) Diagnosed Sept 2007
Prednisone 60mg 1xday, Simvastatin 20mg 1xday, Diovan 80mg 1xday. Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.


rdm
Regular Member


Date Joined Apr 2006
Total Posts : 229
   Posted 11/8/2007 10:51 PM (GMT -7)   
It's interesting that statistically (this from memory) only in about 20 to 30% of those initially diagnosed with proctitis does the disease progress further. So the answer to your question is, absolutely it can and ussually does remain as proctitis.  Anecdotally, on this forum, it appears to be a much higher %, I am one of those in which it progressed.  All the info one reads says that it is much better for the long term prognossis (cancer risk etc.) that UC remain in the rectum. It certainly is easier to treat with drugs applied directly to the effected areas rather than systemic meds.  My personal experience was that from a symptomatic point of view a flare or even moderate inflammation in the rectum caused me more problems, urgency issues in particular, than later when the UC spread upwards.

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 11/8/2007 11:30 PM (GMT -7)   
yes, proctitis magnifies symptoms for sure, being so close to the anus and all, with inflammation in the rectom urgency and increased mucus are 2 very noticable symptoms when proc*** is affecting me.

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


maddi1
Regular Member


Date Joined Oct 2007
Total Posts : 22
   Posted 11/9/2007 7:04 AM (GMT -7)   

RDM,

Thanks for the info.  I guess my thoughts are the same as your in regards to the stats sound hopeful and I want to be positive and believe that mine will stay confined to my rectum, but it seems as if everyone on the board says that is not the case and that they to started out w/proctitis and it progressed.  So I am wondering if this stat is not really true or where the hell are the people on the board that have had proctitis for a long time and it did not spread!?  Also, do you agree with tone stat I read that states " if the disease is going to progress it generally does within the first 5 yrs of dx?


oct 2007 dx ulcerative proctitis. on canasa suppositories & cortifoam


quincy
Elite Member


Date Joined May 2003
Total Posts : 29860
   Posted 11/9/2007 9:42 AM (GMT -7)   
Hi..I see you're only on rectal meds....if you want to give the best opportunity for the stats to be true..you should also be on an oral 5ASA (if you have no problem taking them)....I would suggest Asacol.

We all don't have symptoms that can alert us to inflammation spreading, that could be one reason that it does and is a surprise....the other is neglect from doctors who can tend to do more assuming than looking beyond.

I believe that one of the reasons that UC will spread is that if the cecum is involved as well as the rectum and not inbetween. That's one form that seems to not get as much care as it should..because some docs do only diagnosis by sig-scope rather than c-scope. That form could also be why some have rectal inflammation that's difficult to control when treated with only rectal meds.
The likelihood of that type spreading is higher than with just limited to the rectum I would think because of the neglect med-wise.

I believe that if you have both ends of the inflammation covered....oral from above, rectal from below...you give yourself the best chance of keeping it confined.

Now, if you have CD....that won't hold true, for it can pop up in separate areas.

Ask your doc to put you on Asacol to start at least....a low dosage of at least 4 daily. I would suggest the 5ASA enemas rather than the canasa....for I don't consider Canasa a treatment at all. It's good for an addition or help in tapering or for maintenance.

My take on it.

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 !!!


candi75
Regular Member


Date Joined Nov 2007
Total Posts : 25
   Posted 11/9/2007 10:02 AM (GMT -7)   
I was diagnosed with UP 17 years ago. I was just 15 at the time and doctors told me that I would have cancer in ten years or a pouch. It has not spread any further and I don't have a pouch. Three years ago, after a flare-up, I had a test and it didn't show any UP at all. I still have it though, because I am flaring right now. But there is hope, Think positive!!!

NIcepeter
Regular Member


Date Joined Sep 2007
Total Posts : 72
   Posted 11/10/2007 7:33 AM (GMT -7)   
According to my research, only about 10% of proctitis pt developed full scale UC. Very seldom, proctitis can cause cancer, more limited the size, the less chance get cancer. doctors can be wrong as I seen it a lot.  

36 yrs male. From Arizona
 
Took a lot of antibiotics for my sinus infection caused by allergy, Augmentin and triple antibiotics regimen. Now qualilfy to join UC team.
 
Dx in 2007. Proctitis only( party of Ulcerative Colitis). Mild Hemorrhoid. Fish oil 2 capules twice a day, helps. Alo Vera sometimes helps. Propolis helped quit bit, but had to stop due to allergy issue.
 
 


rdm
Regular Member


Date Joined Apr 2006
Total Posts : 229
   Posted 11/10/2007 4:51 PM (GMT -7)   

Maddi 1

Regarding the proctitis progressing in the first 5 years or it wil generallyl remain proctitis, that was my experience. After about 2 years it progressed to pan colitis.  Interestingly about 4 or 5 years ago I had a routine colonoscopy and the only area then effected was about 2 centimeters in the rectum, with mild inflammation.  GI said the rest of the colon looked great, actually he showed me PICs and it looked like a text book view of a perfectly healthy colon. Thought maybe I was just back to where I started, proctitis. The two scopes since have showed no inflammation but one of the biopsies showed a healed area outside the rectum.  The biopsies of the last scope were consistent with quiescent UC, so currently, on a micoscopic level, I have pan colitis.  There may be nothing one can do that will keep it confined to the rectum but in my opinion keeping the proctitis under control and not in a flare is your best bet.  

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