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

does anybody believe the stats on proc*** that the chances are good when dx that it will stay in the rectum only?

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oct 2007 dx ulcerative proctitis. on canasa suppositories & cortifoam

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.

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Current Medications:

Me neither, went from Proctitis to Pancolitis in 4 years .

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Diagnosed Proctitis 2003

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.

:)

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

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.

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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.

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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

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.

dx with Proctitis and 3 months later dx with left sided colitis and a year later dx with pancolitis....I hate this disease!

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Best Wishes,

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

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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.

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Beth, 32

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.

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.

:)

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

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?

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

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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!!!

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.  

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.