At witts end with my proctitis-suggestions/advice please

I was diagnosed last year with proctitis although biopsy was not conclusive. Took Rowasa enemas for 2 weeks and then stopped per GI doc. I never felt completely better and I learned from this board that I needed to be on maintenance dose of rowasa. I dragged my feet in switching GI docs until I had a new flare back in March. I never get D with proctitis. I get urgency, B and M. I might have 1-4 BM's per day when I'm not on rectal meds.

When I started this flare I was still seeing the old GI who put me back on Rowasa at night and Canasa during day time. The Canasa is difficult for me to put in. I switched GI docs and he told me to quit the Canasa and just do the Rowasa until I have no more symptoms. Then he told me to taper the enemas to every other night. Well the Rowasa works on me in about 2 days. I lose the urgency, B and M. But I still have rectal pain in the anus on various days. I know I have a hemorrhoid but I was told its small. Sometimes I feel like the Rowasa is actually bothering me-like I've been on it too long. In the morning it has always taken a few trips to the bathroom to expel the enema. Then its followed by a normal BM. I'm afraid to taper down from the Rowasa because while I was in between GI docs, there was one night I didn't take the enema and the next day I had a normal BM but the toilet had bright bright red blood in it. That was the first time that happened to me. Typically any blood I had was quarter size amt. The GI doc can't tell me if it was from the proctitis or the hemorrhoid. Within the last two days I'm starting to doubt if the enemas are working anymore because after I expel the enema, there appears to be a little mucous on the toilet paper. I'm not sure if its from the enemas or its actual mucous. The inside of my anus is starting to hurt too. The new GI did the Promethius lab bloodwork as one way to put the pieces of the puzzle together for me. He told me he can't do a scope because he won't get accurate info since I've been on rectal meds for over a month. He did say he thinks I might have a fissure on top of the proctitis/hemmie situation so he gave me analpram to use twice a day. He also gave me a script for nitroglycerine cream which I refuse to fill-way too many side effects. I'm not thrilled with the new GI doc either. I may switch to another doctor in the same practice-on recommendation from a friend. Overall, I feel that the more stuff I have to stick up inside me, the worse I'm getting.

Bless you if you've followed this post.

I'd like to know:
-When rectal meds alone don't work, whats next on the list as far as medications for proctitis?
-When should I start tapering the enemas? What happens if during tapering I produce symptoms again? Do I go back to nightly enemas?
-Are fissures on the outside of the rectum or can they be deep inside?
-Do all probiotics cause bloating and gas? Some days my culturelle makes me feel better while other days I feel worse.
-Does everyone expel the enema in the morning? Does it come out in one bathroom trip or does it take multiple times?
-Do you agree with GI doc that current medication can skew results of scopes?

Thanks for the advice and suggestions Sheri. I'd like another scope to see if the proctitis has spread further up. I'm going to see another GI doc in the same practice for my follow up in 2 weeks. Maybe he'll be willing to do another scope.

I used enemas pretty regularly for years. I last had a scope in 2008 and I still had rectal inflammation (I was first diagnosed with UP in 2001 and I believe I was symptomatic with rectal inflammation till about 2006; even in 2008 before my scope I had some small signs that the inflammation had returned - point being, it took a REALLY long time for me to clear that ******). I think I used my enemas after that for a few months and then just forgot about them. I don't feel any rectal inflammation anymore and I haven't seen mucous or blood for a long time, but I have a feeling if I go get scoped again I'll still be inflamed. sigh.

Hi Chrissy,

I empathize w/ your frustration w/ this dd.  I have a little bit more involvement than you (up to lower sigmoid) but my symptoms are like yours...not any D...but constipation, thin stools and of course the fabulous M and B.  It is so disheartening. 

 I have used the Rowasa (generic ) for well over a year and most of it has been nightly.  I also take Lialda 2/day.  Would you believe w/ all of this crap...I still sometimes flare up.  I am always at least on the edge of one.  What I do (and am currently doing as I am in a small flare) is add a steroid supp (anucort hc)  It is not absorbed like oral steroids...in fact very little gets in your system, especially since it is just a supp. It will also help any hemmies that you have.  I can't take Canasa as it gives me a rash.  Normally it settles down after a while of Lialda, Rowasa and Anucort. 

Yes, I think I am always coming to terms w/ this crappy disease (yeah, so some diseases are worse, but this still sucks ***) and the fact that you will be sticking all kinds of crazy things up your bum.  At least I am grateful when they are helping.  Some people still do not respond to the rectals....but if you do they are the best.  You may want to try different rectals when you discuss w/ your doc...maybe Cortifoam  or something like that.  I think a scope would be a good idea for you...not sure why the Dr. doesn't agree...that is unusual, most seem quite scope happy. 

Anyway, some answers to your questions in my opinion...

-you have other rectals you could try...cortifoam (steroid foam) also steroid enema and steroid supp.  Not in the US but there is also a mesalamine foam. Also an oral could help if it is a little more than rectum alone.  I take Lialda, but I think I want to try Colozol at my next Dr. appt.

-If you start to taper and have symptoms...you should go back to nightly...yeah, I can't get off of them nightly.  Sucks, but that seems to be the plan.

-Don't know about fissures so can't comment.

-Probiotics can cause gas...maybe try another brand but start slow. I use VSL 3 but am thinking of trying Ultimate Flora Critical Care.

-Yeah it can take 2 trips for me in the am to expel the enema.

-Not sure how meds can skew scopes.

So hope that helps...also wonder if fiber such as Metamucil could help you as well.  I take that and also slippery elm.  Anyway, it was a long response but hope it helps!

B

hey, im also in the same boat. have b and m for the past 15months with no success with any meds not even predisolone. had some success with pred foam. i think yous have a similar 1 called cortifoam.

christene1946 mentioned that her inflammation got so bad that she couldnt hold anything. that made me gasp. Ive always wondered what would happen if i couldnt get remission.

it certianly is a stubborn 1 to sort. my GI is talking biologicals also. im not prepared for that yet. esp after the disappointment of pred.
I havent started yet but im getting some slippery elm and uping my probiotics.

my salofalk enema tries to come out right away. iget cramps and pain straight away but stupid me perseveres with it. hope im not doing myself any harm. the pred foam stays in till morning and comes out in 1 go. shouldnt it be absorbed though? thats another Q.