proctitis support

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nymomof3
New Member


Date Joined Mar 2009
Total Posts : 16
   Posted 3/26/2009 7:02 PM (GMT -6)   
so happy to have found this site. i am a 40yr old female who has been suffering from ucolitis and uproctitis..the colitis is under control but the procttitis is in a flare up for a long time, nothing seems to help i am know on the cortisteroid enemas and 12 asacols a day but i think the asacols are making me worse. i am going to stop and see if it make it better. i wanted to know what experiences everyone has had with the enemas and how long they take to start working cause i cant live like this much longer. the constant running to the bathroom is really getting bad and the rectal pain is terrible. i have been on every kind of enema and suppository and they are just not clearing it up. anyone else have these problems. i dont know if i should find a new dr or this one is doing everything he should be doing, sorry to go on and on but i am so frustrated and depressed over this. i just want to feel normal again. thank you for letting me vent....

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16719
   Posted 3/26/2009 7:26 PM (GMT -6)   
I have proctitis but I have been able to manage it with suppositories and Asacol. I have heard the rectum is the last to heal and the hardest to heal. I know how frustrating it can be. I was in a flare for well over a year with no signs of remission. I was able to manage with suppositories when i was first diagnosed but I couldn't afford them and I didn't know about the patient assistance program, I ended up not using them regularly followed by a horrible flare. That is when I had to get on oral meds. I wish I had continued the suppositories, maybe I wouldn't need the oral medication now. That's in the past though, I am now doing well on Asacol and Canasa. Asacol helped me within a few days or weeks. How long have you been using the drugs? I still get D here and there but I am not a salve to the toilet anymore. I hope you find something that helps. I think this disease requires some trial and error, different treatments help each individual. There is no miracle cure and it seems like sometimes different flares require different treatments.
Diagnosed with proctitis in March 2007 - Treated with Canasa 2x Daily
Diagnosed with UC December 08 but had symptoms months ago - Treating with Asacol 400mg (9 a day)


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 3/26/2009 7:46 PM (GMT -6)   
I recommend you ask for cortifoam, it's a steroid based enema (but doesn't have side effects like pred because it isn't released into your blood stream) usually depending on how severe your proctitis is will depend on how quickly it will work.

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


notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16719
   Posted 3/26/2009 8:35 PM (GMT -6)   

I think my proctitis was pretty severe and oral medications helped me quickly. Before oral meds, I was losing a lot blood with every BM, constant D and running to the toilet 15+ times a day. I couldn't leave my house because I was scared of having an accident. When my proctitis was mild, I didn't have urgency and dealt with only a little bit of blood loss. Proctitis can be debilitating, even if it's fairly mild. I think it effects everyone differently. I hope you're right and mine was fairly mild but my symptoms seemed very severe.

Maybe you need to try a different oral med? How do you know the UC is under control? Have you had a colonoscopy since beginning treatment?


Diagnosed with proctitis in March 2007 - Treated with Canasa 2x Daily
Diagnosed with UC December 08 but had symptoms months ago - Treating with Asacol 400mg (9 a day)


nymomof3
New Member


Date Joined Mar 2009
Total Posts : 16
   Posted 3/27/2009 8:24 AM (GMT -6)   
thank you all for responding...i just had a colonoscopy last week and dr said colon looked good and its the rectum thats really bad....ive been on asacol since august and its just not helping maybe it cleared the colitis but not the proctitis....i am now on the steroid enemas for a week and see no relief....my theory is the asacols are not working and making me worse, i will try to stop them and see what happens, nothing can be worse than what im going thru now...during american idol the other night my husband counted 8x running to the bathroom....and im losing alot of blood, does the foam work better than the steroid ememas...and how much time should i give the ememas to see some kind of relief..

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 3/27/2009 1:06 PM (GMT -6)   
     Has your GI doctor said anything about a course of prednisone?  That is the only drug that helps me achieve remission.  Last year I had a bad flare, hospitalized for ten days too.  Another thing..ask about Colazal instead of Asacol.  My doctor explained that the Colazal helps treat the colitis further down in the colon.  I have proctitis too.  Now in remission and only on Colazal and 6MP.
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.


nymomof3
New Member


Date Joined Mar 2009
Total Posts : 16
   Posted 3/27/2009 3:12 PM (GMT -6)   
thanks christine...i was on prednisone and went crazy>>>lol...but it really did not work with me either..it made me moody with the same symptoms, i am on the steroid enemas but not helping at all, what where you in the hospital for? the proctitis? that scares me...

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 3/28/2009 5:51 PM (GMT -6)   
     Don't be scared nymom.  My flare started the end of March last year and steadily worsened.  The doctor treated me at home but only started me at 30 mgm of prednisone and it just didn't do the trick.  It did, however, raise my blood pressure to alarming limits...210/110.  The blood pressure was a significant contributor to my hospitalization.  But the UP (I have proctitis) was pretty bad too.  I spent ten days in the hospital but the flare lasted seven months.  Thank God I am in remission and have been since Nov 1st.  I cherish every day.  I may add that every time I was weaned off the prednisone within two weeks I was flaring again and it wasn't until the doctor "jump started" the prednisone at 40 mgm with a 10 mgm per week taper that I FINALLY achieved remission.  I am on 6MP too.
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.


flmom
New Member


Date Joined Jan 2009
Total Posts : 9
   Posted 3/29/2009 4:46 PM (GMT -6)   
I am in the same boat. I have been fighting this for what feels like forever and I am not able to get into remission. I seem to have an adverse reaction to every drug I have tried, from Asacol to most recently 6mp. 6 mp was the worst yet with fever of 103 and chills to the bone. I will never touch that drug again after two tries. Meeting with my dr. and I think we are going to try the Remicaid. My concern is of course, what do we do when that doesnt work either? My doctor continues to say this is a bear of a disease, especially in the rectum. You are not alone, at least that can make you feel somewhat better :)

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 3/30/2009 9:27 AM (GMT -6)   
     Flmom.....are you sure the chills and high fever were the results of the 6MP and not a virus you contracted?  Remicade has its own issues.  I cannot take Remicade as I was exposed to the TB virus years ago and it could activate the virus in my system.
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.

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